The Five Jacksons

Almost 8!

2012-02-12T20:21:00.000-07:00

Anna loves a party - especially when it is celebrating her. So why not celebrate for several weeks around your birthday? We had a lateover/sleepover with the Hayhursts last week. I wasn't on the ball and was out of candles and the sparklers were so old they no longer worked. So I held a match for Anna to blow out. Of course all the kids wanted a turn - only scorched my fingers a couple times!

Dad always turns up the crazy fun factor. Anna asked Spencer to squish a cupcake on her face and he was happy to oblige. Good photo op. Might look cute in her wedding video.

Then she had her school friends over for a spa party this weekend. There was crafts, hair braiding and nail painting.

And games! At every birthday party Anna has ever had, she has played some version of pin the tail on the donkey. This year she convinced her dad to play along to paint the lipstick on the dad. The kids thought it was pretty hilarious. Dad might have got back at Cooper when he was intentionally painting all over his shirt.

Clare's favorite part of the party was dancing along with everyone to freeze dance.

What a pretty birthday girl! Can't believe she will be 8 tomorrow. She sure is a talented, kind, helpful girl!

So Cool!

2012-02-10T11:39:00.003-07:00

We are so lucky to live where we do and have access to so many amazing programs, people and supports for Clare. We love her school. Yesterday, she had an appointment with her physiotherapist. She arranged for Clare to go on a scooter that had a button attached. If Clare pushed the button she would go. Clare loved it! It is so cool to see her figuring out how to do things for herself. Spencer and I were thrilled to see the video her aid took. We were so excited we had to share it!

Shredding

2012-02-05T21:19:00.000-07:00

Shredding has many definitions at our house right now. Spencer got Anna and Cooper some new snow board sleds so he took Cooper out to the hill in Bridlewood. Cooper loves it. He told Anna he may not make it to her birthday party, "'Cause I might be busy shredding."

Clare, on the other hand, loves playing with the curtains in the kitchen. I think she likes the feel of them brushing across her face and the the visual stimulus as they move. She is always swinging them, spinning them and winging them around. Her little razor sharp fingernails have made their mark though. They started out with a couple little snags which have grown to multiple gaping holes. I joke that it looks like we live in a haunted house with "shredded", disintegrating curtains. Like Cooper, she too, likes to shred.

Anna discovered a website with lots of science experiments on it. She talked her dad into trying one. They put water, food coloring and oil into a glass and then sprinkled salt on top. It was their own little lava lamp. Lots of fun!

Joyful Moments

2012-01-29T20:58:00.002-07:00

One of the many lessons I learn from my kids is how to find joy in the little things in life. Cooper had an organizational day earlier this month and was so happy to stay in his pyjamas, drink fruit smoothies and build with lego all day. How fun, when we get the gift of free time, to fill it with our favorite things!

On Thursday, Anna had a special lunch day at school so got to stay and eat Subway. Cooper was feeling a little ripped off because the kindergarten kids don't get these lunch opportunities. Since Clare was going out for school that day, Cooper and I were able to go for a lunch date to Burger King. Dad met us there. After Cooper ate, he made a little friend and played in the playplace for over 2 hours! So fun. He did something pretty funny though. I had grabbed two dixie cups of ketchup for him and after he finished his chicken, there was still one that was nearly full. He picked it up and licked it like a yogurt cup. It reminded me of when I was a kid and squirted a ton of ketchup on my plate with only a couple fries left. My dad, jokingly told me I had to eat everything on my plate. I hadn't realized he was teasing and scooped up a big spoonful of ketchup and put it in my mouth before he noticed what I was doing. I remember being totally grossed out. Apparently, Cooper did not inherit my taste buds!

We have some neighbours down at the end of the park who built an ice rink on their deck and have told the kids they are allowed to come use it whenever they want. They are down there all the time. After only a week, they are already skating a lot better. It is pretty cute to see them make their way down the path hobbling along on their skate guards.

It was finally warm enough, with enough snow and a healthy enough girl to take Clare sledding this weekend. She has liked it in past years but I think she enjoyed it even more this year. She was giggling and squealing and wanting to go again and again. I love doing things like that with her, although my arms were a little stiff this morning when I woke up. It is a short hill but carrying her, in all her winter clothes is a workout!

Looking forward to more joyful moments next week!

Happy Number 4!

2012-01-22T20:52:00.001-07:00

It was a big day for Clare on Friday - she turned 4! We can't believe that little lady is getting so old! She had a nice day. She had two baths, played with her helium balloons, went swimming, had a family dance party and birthday dinner. She was remembered by so many of her friends and family - thank you for your love. It made her day even more special.

She loved the sparklers on her cake and the little taste of icing mom wiped on her lips. Every year we have a hard time deciding if we should make her a birthday cake since she doesn't get to eat it. But this year, as we were discussing it, Cooper said we should just "feed it to her through her tube." So we threw some into the vitamix with her formula. Everyone deserves a little sugar rush on their birthday! We love you Clare and are so proud of you. You are an amazing girl. Thanks for your hugs, sense of humor and your determination to succeed at life. You are an example to us!

We are especially impressed with the improvements she is making in her sitting skills these days. She often sits on the stool in the bathroom. She is so strong and so much more willing to sit. It is pretty exciting for us to see. When Spencer took this picture last week, the whole family was in the bathroom cheering for her. She looks pretty proud of herself!

Christmas Crafts

2012-01-16T10:31:00.002-07:00

I had a really fun time making crafts for Christmas this past year. I didn't want to post about them before Christmas to spoil the surprise - but I thought I'd share now. I learned how to make these fancy rubber gloves at our church's Super Saturday and then decided to make them for all the hard working ladies I know - friends, my moms, teachers, and the many woman who help Clare. I think I made about 15 pairs.

Every year I make a scrapbook calendar for parents and siblings on the Jackson and Richards sides of our family. It is a lot of fun for me and a nice way to think about all our family members during the year.

I never know what to do with the kids many art projects. I want them to be able to display them, but the fridge is too small and I haven't been able to find a way to hang them in their room that doesn't feel cluttered and messy. So I made art boards for the kids. We will hang them besides the kids' beds and there are 5 clips for them to hang art from. The kids were excited to get them.

Clare has been involved with the CNIB (Canadian National Institute for the Blind) since she was little to address her vision concerns. In the fall they had a workshop for tactile blankets. It gave me some good ideas, access to some cool fabric and inspired me to make a sensory blanket for Clare. It is a heavy denim blanket like she prefers.

And the other side is made from many different textured fabrics. I also attached many toys she likes to play with. There is a slinky, mirror, nail file, luffa, chew toy and stretchy keychains - to name a few. It is heavier than I thought it would be - so kind of a pain to haul around, but Clare seems to like it.

We just saw the respiratory therapist this morning and she is improving. Her lungs sound better but there is still some reduced air entry on the left side - so we will continue to use oxygen during the day until that sounds better. Although she thought it would be ok to try periods of play with the oxygen off. That will be nice for baths and when we try to take her swimming for her birthday!

Cooper went to a birthday party last weekend at Shaker's. He loved it and I loved these pictures of him rock climbing. How do kids grow up so fast!?!

A Better New Year

2012-01-08T18:46:00.000-07:00

What a difference a week makes! Last Sunday, when Clare came home, she was still quite sick. She slept most of the afternoons and evenings and wanted lots of cuddles. Now, although she is still requiring the same amount of oxygen as when we left the hospital, she is seeming much more like her old self. She is playful and happy. The second week of holidays were much better than the first! By Jan. 3, Clare had finally finished opening her presents! She loves her bubble tube and activity blanket.

The kids were so happy to be back together again. Clare enjoyed some good snuggles with Anna and had fun sharing Coopers' new light sabre.

Leigh Ann came and played with Clare during the morning several days this week so I could get out and play with Anna and Cooper. We went sledding, skating and played board games. So nice to get a chance to do some of our "normal" holiday activities.

Anna and Cooper are loving their computer!

I love this picture of Clare in Spencer's hat. Spencer is such an amazing dad. He and Clare have lots of little games they play. Whenever he is wearing a hat, Clare gets excited and wants him to come see her. She pulls his hat off and puts it on her head or plays peek-a-boo with it. She sure loves her daddy!

Cooper was a little unsure about changing classes today at church, so during the fast and testimony meeting he was being a little grumpy. At one point he said to me, "This is not fast. It is taking a long time." Ha! Ha! Anna explained to him the kind of fast that was meant.

We are all a little sad that the kids have to go back to school tomorrow. The holidays felt short this year! Is it too early to start counting down to summer vacation!?!

Good News

2012-01-01T11:39:00.001-07:00

Clare has been feeling much better. Her oxygen needs are down to a level we can give her at home. I've reviewed chest therapy with the physiotherapist. She is no longer needing a nebulizer. So WE ARE GOING HOME TODAY!

We know she is feeling better because she has been sitting up, opening presents and drenching the bathroom with water during bath time. It's nice to have you back to your normal self, Clare!

Christmas at Home

2011-12-30T22:06:00.000-07:00

Spencer did an amazing job video and photo documenting Christmas morning. As sad as we were that we weren't able to all be together, it has been fun watching and re-watching. I love seeing the joy on the kids' faces - so often over small, simple things and watching them laugh, play and be happy for each other.

The first glimpse of all that Santa brought

Opening stockings - gum is sooo exciting!

The kids waited to open about half of the presents until I was able to slip out of the hospital for a few hours on Christmas day. They couldn't figure out why they had a monitor, keypad and mouse.

Anna figured it out first

The both realized Santa brought the parts for a kid's computer station. Look at that air!

Clare crashed on the afternoon of the 28th. It was a hairy 12 hours. A couple of times the doctors contacted the ICU about readmitting her there, but with the maximum O2 they can give in this unit blowing in a mask, frequent nebulizers and being held upright all night, she was able to maintain acceptable blood oxygen saturation levels. So it looks like she will be staying here until at least early next week. She is a pretty sick little girl, but I think she really has turned the corner now. She stills find reasons to smile, though! Those Wiggles are pretty hilarious.

Clare and I have spent the last few nights cuddled on a hospital bed in a near sitting position - not so comfy but worth it if it gets her better!

We've skyped with dad and the kids a couple times the last few days. Clare smiles and laughs when she hears loved ones voices. It's pretty sweet.

It's hard being in the hospital this time of year, but it's much easier when you feel so loved. We've had so many calls, emails, visits and offers of help. Thanks. It makes such a difference!

Clare's Christmas

2011-12-28T12:55:00.032-07:00

So Christmas wasn't what we expected this year. Christmas Eve day started bright and early with seizures at 4 am, but although they were the bad breathing kind, they were typical. Clare was actually quite happy throughout the day despite the seizures, but in the late afternoon she developed a fever. By 4pm the fever spiked and by 5 she was seizing. It lasted over 5 minutes so Spencer gave her a dose of her rescue med. When she didn't respond and was still seizing 15 - 20 minutes later, Spencer gave her a second dose, something we have never had to do before. She still continued to seize. She was a gray/blue color and her breathing sounded horrible. Just before 6, nearly an hour after the seizure started, we called 911. The firetruck arrived first. The firemen took her blood saturation level and were concerned that it was in the 70's. They took off her prongs and put a high flow mask on her face. It helped but she didn't get above mid-80s. When the ambulance arrived, there was no discussion, I grabbed my coat, purse and Clare's essential toys and we took off. Even after the paramedics gave her another dose of anti-seizure drugs, it didn't stop and her SAT's dropped below 50%. The paramedic said we didn't have time to go to the Children's Hospital and he called the Rockyview so they could be ready for Clare. Luckily, a short time later, her seizure finally stopped and her SAT's came back up to the 80's so they decided to take her to the Children's. The doctors and nurses spent a couple hours in the ER getting her seizures stopped(as they had begun again after arriving at the hospital) with several more large doses of drugs, trying to suction and give oxygen to get her blood saturation back up to a safe level and doing x-rays and other tests to determine what had been responsible for causing the prolonged seizure. After she had stabilized, she was transferred to the ICU for close monitoring and care. The respiratory therapist worked hard to ensure we didn’t have to intubate her. They were finally able to keep her SATS in the low 90’s by putting a c-pap machine on her and forcing oxygen rich air in and out of her lungs. She was so out of it from all the seizure meds that she didn’t even fight the masks or multiple pokes for IV’s and blood tests.

It was a rough night, with lots of bells and nurse, doctor, RT visits, but somehow Santa still snuck in and left a gift for Clare. She definitely made Santa’s good list this year!

Christmas Day brought some relief to her breathing. She was able to keep her SAT’s up with just the nasal prongs and didn’t have to work quite so hard, but the x-rays showed a lot of fluid in her lungs. She had pneumonia and it had hit her hard! Harder then it ever has before. The doctors thought she was in septic shock as her heart was working so hard and her blood pressure was very low. They put her on dopamine, with little improvement, and not until they switched to hydrocortisone did we see improvement in her bp’s. Her blood and urine work came back negative for infection, so thankfully, she wasn’t septic but is still a very sick little girl.

Our respite worker came for a few hours on Christmas Day to cuddle a very drugged, sick girl so I could go home and spend a few hours with Anna and Cooper. They are such amazing, resilient kids! They woke up, thrilled that Santa had come, but only opened half their presents and then happily waited to open the rest when I could watch. It ended up being quite a fun day for them as the “present” excitement lasted all day. When I was home, we ate butterhorns (for breakfast at 3pm), opened presents and played games before I showered and went back.

Clare had enjoyed a visit from carolers and napping on Elaine. She never had the energy to open her present though. So other than the 2 hours that evening when they were wrestling new IV’s into her, she slept the day away.

On Boxing Day she was a little more alert, and starting to act cranky. She enjoyed watching her movie and perked up a bit when her feeds were finally started again.

Dec. 27th showed more improvements. She was coughing a lot more and her SAT’s were harder to keep up, but it was probably because things were starting to loosen up in her chest. She came off her blood pressure meds and she was stable enough to be transferred up to a regular unit. She was feeling pretty crummy though, and max doses of Tylenol and ibuprofen were required to keep her settled.

Today has been a better day. She is no longer connected to as many machines. So we’ve had some nice cuddles and she’s played happily with her toys and movie. She still needs quite a bit of O2 support so it will probably be a couple more days before the doctors feel comfortable letting her go home, but it is much easier being in a regular unit and Clare is so much better than when she was first admitted.

Not the Christmas we had been planning, but at least Clare is on the mend. We are looking forward to getting the whole family together and finishing Christmas off watching Clare open her presents that are still waiting under the tree!

The Last 6 Days Until Christmas

2011-12-24T14:37:00.000-07:00

This last week before Christmas was a little different. Spencer, Anna and Cooper got the 24 hour flu - so our planned countdown activities were changed a little. Some days we didn't do anything and others we did several things. We made homemade rootbeer. The kids love doing this with dad. Dad used an electric mixer this year. Cooper thought it was hilarious the way it made a little funnel in the middle.

One evening we went for a drive to look at lights at Spruce Meadows. It was beautiful and Clare squealed as we slowly drove by. We also had our Christmas dance by the tree. Clare loves that one - especially the spinning and dips. Those are always good for a giggle. Anna and Cooper had a good time making a gingerbread house.

Another big hit was ice skating at the outdoor rink in Shawnessy. Clare loved spinning in circles like a figure skater.

Cooper came a long way and was able to skate slowly without help by the end of the day.

Anna had fun but complained about a sore knee that she kept falling on - I guess bruises are a part of the learning process.

Clare's wheelchair doubled as one of those "learn to skate" things kids push around. Clare and I went backwards and Cooper pushed forwards. Clare was happy as long as we had her music toy tucked into her hat.

On Friday night, Grandma and Grandpa Richards had 12 of their 16 grandkids come for a sleepover. Grandma reported that the last kid went to sleep around 3:30 am and the first one stirred at 7 am. Not much sleep for anyone, but they all had fun: playing, snacking, cuddling and watching movies.

All the cousins exchanged their presents in the morning. A very fun get together!

And today we celebrated dad's birthday. We love our dad! The kids were so excited for him to open his presents. Anna started working on crafts for him in October. She really wanted to make his day a special one. He is such an amazing guy - he brings so much happiness to our home. Happy birthday, dad!

Only one more sleep!

More Christmas Fun

2011-12-18T20:22:00.001-07:00

13 Days 'til Christmas: Do a secret act of service. This was a nice opportunity to talk about kindness and the real meaning of Christmas. Lots of helpful surprises happened around the house today.

12 Days 'til Christmas: Read the Christmas story from the Bible and act out the Nativity. The kids loved finding costumes and bringing this special story to life. Clare sat like the cute little angel she was the whole time dad read the story.

11 Days 'til Christmas: Go to a movie as a family. We had fun watching the Muppets and munching on popcorn. Clare wanted to stay home and hang out with Tori and her baby Einstein movies.

10 Days 'til Christmas: Go to the Christmas concert at Somerset School. Cooper's class sang Up on the Rooftop with actions and bells. It was kindergarten cute!

The grade 2's did Jingle Bells.

9 Days 'til Christmas: Go for a lunch date at Burger King. The play place was the highlight of course!

8 Days 'til Christmas: Go to Bumbles' Big Christmas Adventure at Storybook Theatre. It was a funny play that we all enjoyed. I was supposed to go with the two older kids, but Dad ended up taking Cooper to the States for a guys' weekend so us girls had a Christmasy weekend of treats, wrapping presents and hanging out.

Cooper switched his activity to snowmobiling!

7 Days 'til Christmas : Make a Christmas craft. Finally able to squeeze this one in. The kids love making a craft. Each year, when we decorate, they pull out crafts from years past and remember. It's fun to see the traditions that matter to them. (And yes we are working on the bathroom floor again.)

Countdown Continues

2011-12-11T21:35:00.001-07:00

20 Days 'til Christmas: Donate to the food bank. The kids loved picking out some food and carrying it to the donation bins at the school.

19 Days 'til Christmas: Build a snowman. This is a tricky one. Last year we discovered that when you have good rollable snow - you have to take advantage. You can't really plan ahead on this one. Tuesday was a good snow day so the kids headed out and made Frosty!

18 Days 'til Christmas: Have a family game night. Game night is a little different at our house. In order to make sure Clare is a part of it - we play games on the bathroom floor while she is having her hour long bath. It is a tight squeeze and an unusual place for a family of five to congregate - but it is cuddly, warm and happy. We played Uno and grooved to a little Party Rock Anthem. A fun night.

17 Days 'til Christmas: It was supposed to be do a Christmas craft - but Clare had conscious sedation and a G-tube change. That along with several other unexpected events meant a do nothing special day. We'll make up for it!

16 Days 'til Christmas: Open car entertainment gifts for the ride to Grandma and Grandpa's for our early Christmas celebration

You can make all kinds of fun things with a package of pipe cleaners: flowers, fancy pens, 6 ft long loop chains. The fun never ends!

15 Days 'til Christmas: Go sledding. Grandpa had some fun saucer sleds and the kids spent time on Friday and Saturday sliding down the hill behind grandpa's house.

Anna told me to watch her spin-a-roo. She meant to spin in circles as she slid down the hill. I didn't have my SLR camera so I just pointed and pushed the button and hoped for the best. This one was a winner. Anna on her head. She didn't get hurt, so it is ok to laugh! Not the spin-a-roo she was planning on. (A good reminder not to forget helmets next time we head to the toboggan hill!)

14 Days 'til Christmas: Turkey dinner and hanging with the cousins. Lots of fun!

The Countdown Begins

2011-12-04T20:58:00.001-07:00

One of our favorite things about Christmas last year was our 24 day countdown of activities leading up to Christmas. Everyone contributed their favorite ideas and we have an exciting list of events to look forward to this year!

24 days 'til Christmas: Have a sleepover by the Christmas tree. Cooper is still awake in the picture because he had just got home from a birthday party. The sleepover might happen a few times. The kids love it. They went to sleep really well and even slept in.

23 Days 'til Christmas: Have a Christmas party. Another typical play date party with the Hayhurst girls - crafts, decorating cookies, lunch and playing for the kids. Lots of visiting for the moms. Everybody is happy.

22 Days 'til Christmas: Bake and decorate sugar cookies. This takes nearly a whole day - but we just enjoy spending the day hanging out together.

There was lots of tasting.

Some cutting and decorating.

Cooper demonstrating his love of patterns.

And a bit of silliness. Clare was playing peek-a-boo from under the kid's fort.

Anna had the giggles when I kissed her while she was trying to hide from dad's camera.

We ended up with some very colorful cookies - although quite a few disappeared from the trays!

21 Days 'til Christmas: Watch a Christmas movie as a family. We always enjoy a good laugh as we snuggle up with our popcorn to watch Elf.

Christmas is Coming!

2011-11-27T19:12:00.001-07:00

And the Christmas fun begins! Friday was Clare's school Christmas party - there were crafts, treats and a visit from Santa. I'm never sure how Clare will react to outings like this. Sometimes she loves them and sometimes they are too much for her. This one was overwhelming, but I enjoyed seeing some of my mom friends and it was fun to see her on Santa's lap even if she was annoyed I had made her go to some hairy, weirdly-dressed man. It will pay off Clare - just wait!

We decided to decorate on the weekend. I love Christmas and have a bit of a decoration addiction. I have done quite well at controlling it the last few years but previously accumulated 7+ big rubbermaid bins of Christmas stuff. So decorating is a big job.

Anna and Cooper were incredible helpers this year. I unloaded the bins and they put most of the things where they belonged. I was amazed at how much they did on their own. We spent over 3 hours decorating on Friday and didn't finish. Saturday was a rough seizure day for Clare, so I told Anna we may have to wait to decorate the trees. Apparently, she is a bit of a Christmas task master, and whether it was the mess that bugged her or wanting to have the house completely Christmas - ed, she decided to just do it on her own. I helped them put together the tree and hang the beads and Spencer did the lights but Cooper and Anna decorated both trees without any help at all. And they look great! I was impressed!

Clare is enjoying the tree too!

Good job, Anna and Cooper! It's beginning to feel a lot like Christmas!

Family

2011-11-20T20:30:00.001-07:00

Tired tonight - but grateful to be surrounded by family and love. It makes life good.

The November Long Weekend

2011-11-13T20:53:00.000-07:00

When we went to Montana, Spencer and I bought fabric to make a new quilt for Anna's bed. The pattern I used was called the "6 Hour Quilt". It took me a month to finish it, but I am done.

And Anna loves it! It was fun to make. I love thinking of the kids wrapped each night in a cuddly quilt made by someone who loves them.

Cooper talked Spencer into taking him for a chilly fall bike ride on Saturday. He is getting pretty good at navigating the bumpy trails in Fish Creek. Another funny Cooper story. We were listing the meals we wanted for the week so I could write the grocery list. Cooper said, "You know that greasy stuff? The greasy thing that isn't ham?" He wanted bacon. Funny way to describe it - but it worked.

It's been a hard week for Clare. She has been fighting another bug, completed another round of antibiotics and had several days of really bad seizures. But she still finds lots to laugh at and make us smile. She thinks the vacuum is quite hilarious these days.

We belong to the Church of Jesus Christ of Latter Day Saints. This weekend our church had a conference. I was asked to speak about how my testimony of my Saviour and His Gospel has grown as a result of trials. It was a good opportunity to reflect on the good that has come into our lives the last few years. I have included my thoughts here - but it is a much longer post than I normally write:

In a devotional address given at Brigham Young University—Idaho in October, 2007, Larry Richman said this:

Trials give us opportunities to show the Lord and ourselves that we will be faithful. We can choose to feel sorry for ourselves and ask, “Why me?” or we can grow from our trials, increase our faith in the Lord, and ask, “How can I be faithful in the midst of this trial?” We can let adversity break us down and make us bitter, or we can let it refine us and make us stronger. We can allow adversity to lead us to drift away from the things that matter most, or we can use it as a stepping-stone to grow closer to things of eternal worth. Spiritual growth can often be achieved more readily by trials and adversity than by comfort and tranquility.

President Harker called me a couple weeks ago to ask me to speak about how my testimony has been strengthened through trials. There are many here whom I don’t know, so I would like to briefly share the Reader’s Digest condensed version of our family’s challenges over the past few years.

In January of 2008, we were eagerly awaiting the arrival of our third child. The pregnancy had been healthy and uneventful, but two days before our daughter was born, I noticed a change in fetal movement and became very anxious. When we went to the hospital both she and I were in distress and the doctors performed an emergency c-section. At the urging of the staff, we quickly agreed on a name for our daughter, Clare Denise and she was transferred from the special care nursery at the Rockyview to the neonatal intensive care unit at the Foothills Hospital where the doctors and nurses were better able to treat her life threatening medical conditions. After her first few test-filled days, we discovered that she had suffered a massive stroke shortly before she was born. It had destroyed the majority of the left side of her brain and would make many things difficult or impossible for her: movement, speech, vision, hearing, even eating and swallowing. She slowly stabilized over the following weeks and a month after she was born she was transferred to the Alberta Children’s Hospital. There her days were filled with more tests, therapy and daily debridement to maximize healing on the large wound she had been born with on her right arm. On March 11, Clare had her first major surgery, a skin graft. Other than her severe reaction to morphine, the surgery went well. After she recovered, and we finished all our training on how to feed a child through a tube going down her nose into her stomach, Clare was discharged and we were finally able to take our little baby home. She was a very sick, medically complicated, and unsettled girl. We were happy to be going home, but we were VERY overwhelmed.

I remember thinking now we were ok. We were out of the hospital and everything would be fine. Unfortunately, that wasn’t the case. The next few years brought: severe reflux, at least weekly nasal-gastrointestinal tube changes, often in the middle of the night after she had pulled it out of her nose while flailing because she was uncomfortable and upset, daily blood glucose testing, the poor sleep routines that accompany a brain injury, multiple trips to therapists and medical clinics each week often with“bad news” and new diagnoses that come with a medically complex child, the reappearance of seizures, the worst of which involving her not breathing for a minute or two followed by vomiting, aspirating, high fevers and hospitalization. She had so many admissions to the hospital following emergency room visits during her first year, that we lost track after 100 nights. Oxygen generators and tubes snaking through the house became a new reality as Clare’s damaged lungs created a need for O2 to be given. In the spring 0f 2009, we discovered she was silently aspirating and it wasn’t safe to continue our work on oral feeding. The doctors completed her second major surgery putting a permanent feeding tube directly into her stomach and performing a fundoplication, wrapping her stomach around her esophagus to prevent vomiting. Although it had been a difficult decision to have the surgery, it improved Clare’s health significantly. Her hospitalizations decreased dramatically making life a lot simpler.

There are still weekly therapy appointments although they now take place in our home as part of her preschool program, interventions like botox and serial casting to help Clare achieve her potential and endless paperwork and research to access supports and services. Home life is busy trying to do all the exercises and activities prescribed by her therapists and our “normal” includes feeding pumps, suction machines, ankle braces, standing frames, oxygen tanks, seizure meds, wheelchairs and aides visiting our house to work with Clare.

And that’s just Clare. As a result of my husband’s commitment to our family during these trials, he suffered a devastating job loss. I broke my elbows in the spring, and all the other typical daily struggles of a young family. Life is getting easier but it still feels full of many challenges.

As I’ve reflected on this topic, I’ve realized that despite our trials I have experienced incredible growth over the past few years.

I know that the Holy Ghost guides us and protects us. I have always believed this was true but in the past few years, I have had so many experiences where I have felt the gentle promptings and the powerful urgings of the spirit. The strongest one came the day Clare was born. I just knew I had to go to the hospital immediately. Afterward, the doctor told my husband that Clare probably would not have survived another hour inside me. I know if we ask for guidance and listen, the Holy Ghost is there to direct our lives and ensure we are safe.

In Doctrine and Covenants 35: 8 it says: For I am God, and mine arm is not shortened; and I will show miracles, signs, and wonders, unto all those who believe on my name. I have seen miracles. I remember the day we were told Clare may never walk. Today, if we help position her in her walker and gently push it, she is able to walk independently across a room. I remember when we were told she might not be able to sit. I watched her sit unaided and play for ten minutes on the living room floor with her brother and sister last week. I remember when we were told she may never talk. She doesn’t use words, but she uses gestures, gaze and sounds to clearly communicate what she wants. That little girl is so smart she invented her own language! I have seen miracles and expect to see more.

I have witnessed the power of priesthood blessings, fasting and faith. One of the most heartbreaking of Clare’s medical problems is her epilepsy. I hate seizures. I hate the way they steal my funny, spunky, smart little girl and leave a vacant, gasping, hurting child. They make me feel helpless and scared. One Sunday our ward and extended family did a fast for Clare’s seizures. Clare has also had many priesthood blessings to address this health problem. Clare still has seizures, but they are different. They aren’t as frequent and they aren’t as severe. I continue to hope that they will go away completely, but until then, I have faith that blessings and fasting work and will help her brain heal in a way that the seizures will be less destructive to Clare and our family.

I know that Heavenly Father hears and answers our prayers. I am one of those people who prays so much more intensely when I am in need of help. I have been in need of help a lot in the last few years. One big challenge I find in parenting Clare, is making big medical decisions. I often feel unprepared and unqualified. But I have seen, time and time again, that if I listen carefully to the doctors and specialists, talk about it thoughtfully with my husband to come up with the solution that we think is best, and then pray about it sincerely, I am given a strong feeling of peace if we are making the correct choice. So far, as we have acted in this pattern, we have seen good outcomes for Clare. There is strength in knowing that the Lord is part of our decision making as we communicate with Him through prayer.

My testimony of the temple has increased since Clare was born. Pres Monson promised The temple provides purpose for our lives. It brings peace to our souls—not the peace provided by men but the peace promised by the Son of God when He said, “Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.” When I go to the temple it is often because I need to feel of my Father’s love and to feel of that peace. I am so grateful to know, when times are hard, when I feel sad or weary, that I have a place to feel lifted and soothed.

1 Corinthians 10:13 says: But God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it. I know that Heavenly Father blesses us in ways that strengthens us and lifts us when we are going through challenges. I have come to understand that one of my greatest strengths and blessings is my family. My husband is an amazing man. Obviously, I have always loved Spencer, but since Clare was born, the experiences we have had have greatly increased the depth of that love and my appreciation for him. He is gently tender and yet fiercely protective of her. He is so in tune with her needs and has so many inspired ideas about how to best help her. He plays with her in a way that makes her so happy. He brings laughter and fun into our home. I don’t think I could pick anyone who would be a better partner in parenting Clare. My two older kids are phenomenal. They are so compassionate and loving and just roll with whatever life throws at them. Anna, my 7 year old, knows how to run tube feeds and help with therapy exercises. Cooper, 5, loves pushing Clare’s wheelchair and spotting handicapped parking stalls. They both make Clare laugh like nobody else can. Clare asks for hugs from them all day long. Watching the three of them together makes my heart happy. My family is my “way to escape” and helps me to be “able to bear it” when days are hard!

I think one of the greatest areas of growth in my testimony has been my understanding of the Lord’s love for me and my family. This knowledge has come through His tender mercies. Elder Bednar says: We should not underestimate or overlook the power of the Lord’s tender mercies. The simpleness, the sweetness, and the constancy of the tender mercies of the Lord will do much to fortify and protect us in the troubled times in which we do now and will yet live. When words cannot provide the solace we need, when logic and reason cannot yield adequate understanding about the injustices and inequities of life, and when it seems that perhaps we are so totally alone, truly we are blessed by the tender mercies of the Lord and made mighty even unto the power of deliverance . I feel of His love when friends and family showed up with buckets full of cleaning supplies, containers full of fresh or frozen food or hands willing to soothe a troubled baby or play with her older siblings, I feel of His love when a stranger comes up in a store and rubs Clare’s cheek and tells her she is beautiful. I feel of His love when I think about my amazing extended family whom help in any way I ask and many ways I don’t. I feel of His love when I see a sister with special needs doing a session in the temple. I feel of His love when I am thanked by members of the ward I call on for help. I feel of His love when given advice or comforting words of understanding from my parents or the other amazing moms of children with special needs I have met since Clare was born. All these things are evidence that Heavenly Father is aware of me, that He loves me and that He wants to bless me.

As I have tried to learn and grow through the trials of the last few years, I have struggled with understanding the why. It is hard to comprehend why a beautiful little girl has to feel so much pain and work so hard to do all the things that are so easy for nearly everyone else. Elder Neal A. Maxwell said something that helped. Trying to comprehend the trials and meaning of this life without understanding Heavenly Father’s marvelously encompassing plan of salvation is like trying to understand a three-act play while seeing only the second act. Fortunately, our knowledge of the Savior, Jesus Christ, and His Atonement helps us to endure our trials and to see purpose in suffering and to trust God for what we cannot comprehend.

I do know Heavenly Father loves my family. Thankfully, this knowledge and my testimony of my Savior and his atonement allows me the peace to know that if we endure well our trials in this life, if we take to the opportunity to use them for our growth and learning, we will be together, with perfect bodies and perfect understanding, as a family forever.

Good Job

2011-11-13T01:12:00.001-07:00

I must say that if you were lucky enough to be at the Calgary south stake conference this evening you would have been treated to one of the most captivating talks you will ever hear. I believe Jadi will post it later but I wanted to say that she did an amazing job talking about our experience with trials and how we have tried to overcome then as a family.

Jadi you were magnificent in your thoughts on Clare and your love for your family and your beliefs. I love you.

Spence

Ps. Does this score me some points?

Halloween Spooktacular!

2011-11-06T20:58:00.001-07:00

We had a lot of fun with Halloween again this year. The kids started begging to decorate the house late September - but we didn't do it until the 30th. Then the countdown began! The kids had fun brainstorming costume ideas this year. Anna wanted to be a 50's waitress, which is perfect for her because she is always playing waitress. Then she asked if she could wear vampire teeth. So we got creative and made a vampire waitress. We designed a Vampire Cafe stamp to print on the back of her shirt and apron, made an "Elvira" name tag and created a blood milkshake to offer on her tray. She really liked her costume this year.

Cooper insisted on being spiderman from day one. It was easy and he was happy.

I saw an adorable costume on Pinterest and had to make it for Clare. I thought she made quite a cute little witch!

The weekend before Halloween was full of great activities. We had our cousins over on Friday afternoon and had an impromptu party that Anna arranged. They played a game of ghost, ghost witch and Clare pointed to join in. It was pretty neat to see her interacting and playing with the other kids!

What party would be complete without decorating sugar cookies or cupcakes?!? Those kids sure know how to use sprinkles and decorative candies - fully loaded!

Then there was a family dance at Anna and Cooper's school. The kids loved the carnival style Halloween games. This one was a giant spooky operation game.

Clare liked spinning the prize wheel. It made a neat sound. She was very interested in watching all the activity at the event.

There were also some fun shooting games. Anna and I stayed for the dance - but Cooper and Clare were not too thrilled with the dark gym full of smoke and strobe lights, so Dad took them home.

On Saturday, Anna and Cooper dressed up and went to dance class with Clare. The teacher did a great job incorporating fun Halloween activities into the dance and movement games. She is so good at making all the kids feel special and included!

Carving pumpkins! Cooper didn't throw up this year, but it did take some convincing to get him to scoop out the pumpkin guts.

And trick or treating is always a thrill! Clare wasn't feeling well, so we all went out to a couple houses and then Clare and I went home to hand out candy while Spencer stayed out with the older kids. They stayed out for a long time and got tons of candy.

Cooper is a little candy monster. He's eaten twice as much candy as Anna. I think I need to keep it somewhere that I can monitor it. He helps himself to it all day long. It is probably time for candy mania to end. But it sure has been fun, and tasty!

School Improvements

2011-10-30T21:11:00.002-06:00

Dare I say without jinxing it, but Clare seems to be settling in to school. She really enjoyed herself this week. Ceri, her aide has worked really hard the last few weeks to figure out how to create a positive, successful learning environment for Clare. They dressed up and went to the Halloween party at the school on Tuesday. Clare was happy to go and loved spending time in the multi-sensory room, playing with the bubble tube for a couple hours. While she was playing, I met with her therapists, teacher and aide and went over her IPP goals. I am excited about her program this year. Family input is very important at GRIT, and her goals reflect those things Spencer and I want her to improve at.

GRIT students have access to the pool at Emily Follensbee School every Wednesday. The pool is so warm it feels like a bathtub. The floors of the changing room are heated. It is wonderful. Clare is in heaven. She loves being independent in the pool. We put a life jacket on her, and spot her to make sure she doesn't get a mouthful of water, but other than that we usually leave her alone. She loves kicking her arms and legs and propelling herself through the water.

Family is welcome too and Cooper and I have enjoyed playing together while Ceri looks after Clare. There are water toys galore!

Ceri borrowed a bunch of equipment from the school and sets up a little multisensory room upstairs for Clare. There is classical music, slow moving disco lights, a projector with pretty colored gel and several different tactile objects for Clare to explore. And on Thursday, Ceri even brought a portable BUBBLE TUBE! The only sound I heard other than the music, was Clare's contented humming. It is amazing! I am so happy that she is settling in and having such happy experiences!

Our TV died on Thursday night. To everyone in our family, other than Clare, it was disappointing, but not a big deal. To Clare it was shattering. She spent much of the day on Friday pointing at the TV screen hollering at me in frustration. She didn't understand why I wasn't turning it on. She is such a creature of habit and she loves having it on as she plays up in the bonus room. So Spencer bought a new TV on Friday. I don't think Anna and Cooper spent much time watching it, though, because they were too busy playing in the box. They made a car out of the base.

And a club house out of the rest. They even decorated the inside walls with markers and stickers. I heard them playing down in it as soon as they woke up Sunday morning.

Then it became a grocery store and several of the neighbourhood kids came and joined in the play. I love how thrilling a box can be when you are a kid. I have fond memories of my rocket ship fridge box when I was a pre-schooler!

This week was the primary presentation at our church. The kids sang and shared short thoughts about what they had been learning this year. Anna did a great job singing and saying her part. When Cooper got up, I thought he would shyly bury his head and refuse to speak, like he has always done when required to speak publicly. But he surprised us. He spoke loud and clear into the mic in front of the whole congregation! That boy is growing up!

Dad snapped a picture of us cuddling on the couch after story time this week. We are all looking forward to Halloween tomorrow!

Balloon Fun

2011-10-23T21:04:00.001-06:00

Friday night was family date night. We headed off to the Boston Pizza at Southland, a little disappointed because we had hoped to see the magician only to find out his performances had switched to Thursday evenings. We still went to Southland though, hoping to avoid busy dinner crowds. The kids were so excited to see that, although the magician wasn't there, the balloon man was! This was how we saw Anna and Cooper most of the night. They were too busy watching the balloon creations being made to do much eating. Cooper was especially enthralled and ended up taking home a pizza with only one bite missing!

The balloon man was quite a performer. He was visiting and joking as he speedily blew, twisted and tied his balloons into works of art. It didn't seem like there was anything he couldn't make!

Cooper had to get something in green, his favorite color. He chose a dragon.

Anna couldn't decide what she wanted. She had seen so many amazing balloons: monkeys, helicopters, light sabres, tigers... The man offered to surprise her, so she accepted. We watched and guessed. He wowed us all with a pretty pink unicorn.

And Clare got a pretty butterfly. She could get a good grip on it and loved flinging it around (as you can see!) She really loved the sound it made when she scraped her teeth on it and had a good chuckle when she popped one of its wings.

It was a really fun night! Lots of smiles and laughter. The best way to hang out as a family! (And not having to cook and clean up dinner is kind of nice too!)

Clare enjoyed her dance class again this week. Her favorite activities seemed to be: me helping her stand, move and dance to the hokey pokey in front of the mirror. She giggled the whole time. She also loved when I held her and we played keep the balloon in the air. Another game Clare did great at was visually tracking the bubbles that were being blown in the air. Dance class is such a happy time for her!

The older kids are reaching the age now that they have definite opinions. A couple years ago for Christmas I wanted to make Cooper a superhero cape so we had something for him to choose other than princess costumes in the dress-up bin. I asked him if he wanted superman or batman. He insisted on spiderman. I used my imagination and stitched up a spiderman face and sewed it on the back of a black cape. Cooper was quite excited when he opened it up and has played with it a fair amount over the past couple years. Last week, we were organizing and de-junking the basement. We were going through the dress-ups and Cooper said we could get rid of his cape. I voiced my dismay and he informed me, "Mom, spiderman doesn't even wear a cape." He is right, but it still kind of hurt. The cape is still in the basement.

Tonight, we were watching America's Funniest Home Videos and a commercial came on. One person after another said, "I'll stand up for cancer." Then we heard Cooper say, in his gravelly-sick-from-a-cold voice, "I'll stand up for candy!" Okay, we may have a little teaching to do about selflessness and supporting a good cause. To be fair though, for a boy who doesn't know what cancer is, it does sound a bit like candy. It was pretty funny. Of course, sweet Anna followed with saying, "I'll stand up for Clare." Love those kids!

Dance!

2011-10-16T20:57:00.001-06:00

We received some disheartening news a week ago. Clare had responded so well to the botox last January. Her flexibility and tone (muscle tightness) had responded favorably and we had beautiful muscle range long after the botox wore off. This meant she could wear her ankle braces without discomfort allowing some amazing walking advancements. In July, the neuromotor surgeon had been impressed and didn't expect to consider repeating the procedure until the new year. However, in August, her heel cords and calves started to tighten up. Her braces started to really bother her. We saw lots of sore, red marks on her feet and she had trouble tolerating them. So after several unsuccessful adjustments to her braces, the orthotist referred us back to the neuromotor clinic. The surgeon thinks Clare needs another 8 injections of botox in her calves and six more weeks of serial casting. It has only been 8 months since the last injections and only 4 months since we finished our marathon 21 hospital appointments related to the botox/casting intervention. Oh yeah, and he dropped the bomb that she also has scoliosis. Needless to say we are overwhelmed. Do we go ahead with the procedure or look into alternative treatments? We have had success with the botox, but it is hard to think we will have to do this multiple times a year until she is six when she will probably undergo tendon lengthening surgery. We sometimes feel unprepared to make all these decisions.

So how did we decide to deal with this? I guess we will just have faith, that like so much else with Clare, it will all work out. We will research and pray. But until then we will ..... DANCE!

A thoughtful friend forwarded an e-mail she had received for a dance class sponsored by the Cerebral Palsy Association. We decided to give it a try. Clare loved it. She lay on the floor and listened to the kids for the beginning stretches and rhythm work on the drums. Then she started to giggle, squeal and really enjoy herself when the music started and I marched, danced and spun her all around the room. She did some great standing, sitting and walking. Anna was an amazing helper and had fun joining in. The class is at the Vecova Centre for Disability near the University, so it is a bit of a drive, but definitely worth it. We are looking forward to seeing Clare blossom in her dance class.

And we will be grateful that we have such sweet children. They love each other so much and have so much fun playing together. Church went really well today. Clare usually cries and fusses until Spencer takes her out to walk up and down the halls. But today, she sat and played happily. She had a nice time wrestling and cuddling with Cooper.

When she got tired of sitting she lay on the bench to play with her toys. Anna would reach over and stroke her cheek whenever she would start to fuss. It was sweet to see how naturally that little kindness comes to her. She is always thinking of her sister's needs!

We had a couple good Cooper-isms lately. At dinner, out of the blue, Cooper called out in an announcer voice, "And the crowd goes lazy." It was funny. Even after we explained to him that it was "the crowd goes crazy" he insisted his way was right. So we will change it at our house. We have quoted him several times this week. He also says "halle yulah" instead of hallelujah. And he says that word quite a bit. Kind of weird but fun!

Words of Thanks

2011-10-11T21:40:00.005-06:00

We just got back from a wonderful weekend away. Spencer planned a trip for us to Kalispell. He spoiled me and let me choose what we did with our time, which meant lots of shopping, eating and lazing at the hotel! We found a lot of good stuff: Christmas presents, birthday presents, sheets, towels, fun food we can't get here, fabric to make a new quilt for Anna and nearly a whole new wardrobe for me. I kind of felt like I was on "What Not to Wear." So much fun!

The purchases are even cuter on, though!

We stopped to pick up the kids from Spencer's parents on our way home and enjoyed a delicious turkey dinner. Over the weekend I had the chance to think about all I was grateful for. I wanted to jot down a list of some:

1. My HUSBAND. I am so grateful to be married to my best friend. We really have a lot of fun together. For the past year, we have made it a priority to try to go out for a date each week. It has been so good for us. We both look forward to it all week, dress up for each other and really appreciate the chance to visit, laugh and spend time together. I think it is neat that, after 13 years of marriage, we are still learning new things about each other. This weekend I learned that he is a blast to go on a shopping spree with and he has great taste. He found nearly all the fabric for Anna's quilt and helped me choose the most visually appealing way to arrange it. He found some really flattering clothes for me to try on. I felt really cute as I modelled new jeans, tops and boots. He rocked the shopping weekend. He's a pretty cool guy!

2. My KIDS. Those three add a lot of joy to my life. I love this quote from Joan Ryan: "Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." I hope I can learn what I should!

3. FRIENDS. I am blessed to be surrounded by so many people who make me smile. I love visiting with friends in the hall at church, getting together with sisters for play dates, going on a double date with neighbours or chatting with other moms while I wait to pick up the kids at school. All make my day happier. I am especially grateful for a new group of friends I have made since Clare was born. I have met several other moms who have children with special needs. These are special moms. We try to get together for dinner every month or two. We usually sit and visit for three or four hours. These women inspire me. They are such examples of love, determination, intelligence, humor, patience, encouragement and courage. I am so grateful to have them in my life.

4. HELP. Over the past three years, we have had a lot of help. We have respite workers, therapists, aids, friends and family members who support us and enable us to create the family life we want to have. We are so thankful for the many people that give of themselves to make our lives happier.

5. GROWTH. It is always incredible to me to look back and see how far we have come. Cooper has really come out of his shell and has developed a new level of confidence as he has spent a successful first couple months in kindergarten. Anna continues to become more talented, loving and kind. Clare has made some amazing strides this year, literally and figuratively. I can hardly believe it as I see her walk across the room with hardly any support, watch her sit independently on the floor and play or see her eyes light up as she taps the yes card showing she understands the questions I asked her about what she wants to do. So grateful!

6. HOME. I am so thankful to live in a warm, comfortable home in a place of such opportunity. I received an e-mail from a past therapist who now works in Ontario. She was amazed to hear all that Clare has accomplished, but was also quick to remind me of the many advantages living in Alberta offers. Many of the therapies and interventions Clare has experienced are either not offered or place greater financial demands on the families in places outside Alberta. It is easy to forget how blessed we are in the midst of our long, cold winters, but we are so lucky to live where we do!

7. MOTHERHOOD. Being a mom and spending my days at home with my children, is exactly what I want to be doing. I have had lots of jobs in my life, and this is the most fulfilling. There are mundane, challenging, tiring times but I can overlook them when I remember to focus on the many rewarding moments. I am realizing that if we choose to anticipate and celebrate the little things that bring joy, we can feel so happy. It is often the little things that make us the happiest. The sound of my kids laughter makes everything worth it! Our family really tries to frequently plan fun times: play dates, trips to the zoo or park, popcorn movie nights or bike rides in Fish Creek. Things like this really seem to bring us together and help us foster a feeling of love and happiness in our home. Not every day is a good day, but we sure are trying to choose to be happy.

I am grateful for Thanksgiving. There is nothing like counting your blessings to make you realize how truly wonderful your life is!

Fall Days

2011-10-02T20:29:00.001-06:00

It is hard to say goodbye to summer - the hot days, watermelon, blueberries and pools! But instead of being sad, I suppose I should be grateful for the good things fall brings. This weekend we enjoyed fall walks, gathering and talking about leaves and delicious apples. We spent a couple hours coring, peeling and eating apples, making apple crisps and pies. The kids asked to help. My first instinct was to say, "No. It is too hard for you and you will only make a mess." But instead I said yes. They helped me for over an hour. Cooper figured out how to use the apple corer and Anna was pretty handy with a butter knife to skin the apple pieces. It made the job much quicker and more enjoyable as we visited and laughed. I am learning, when the kids offer to help, to accept and appreciate the effort. Maybe it isn't done quite the way I would have, but it is done, and I will have a chance to do it again soon. The kids love mopping, helping wipe down the bathroom and putting away the silverware. Anna is getting really good at these chores!

As a result of our little "sweat shop" we have a freezer full of yummy desserts and Anna and Cooper have a tray of pie crust cookies. It was a great day.

Clare is continuing to adjust to school. This week, each day got a little easier. On Tuesday, she went to the classroom and played with the bubble tube for an hour and a half, painted a bus and laughed, hummed and clicked her way through music therapy. Wednesday brought her teacher for the first home visit. The teacher was awed by all Clare is doing. When she left, she said that she thought Clare had one of the most advanced early communication systems she has ever seen. Clare is smart. She knows what she wants and has developed a pretty complex system of pointing, gazing and making vocalizations to let us know what she is thinking. The trick will be finding an effective communication system for anyone to be able to understand, not just those of us who are close to her. On Thursday, Cooper, Clare and I met Clare's GRIT aid at the zoo and we enjoyed a beautiful fall day there. Clare loved the wind in her face and was continually squealing in pleasure. She also got the chance to ride the merry-go-round. She loved it.

And everyday is a good day when they are full of hugs from Clare. She squeezes hard!

Seeing Clare

2011-09-25T20:43:00.000-06:00

This hot weather at the end of September feels like a gift! We love how much time we are still spending outside. We are able to go for lots of walks, bike rides and trips to the park. Yeah! This was a slightly alarming sign we saw on our last trip to Fish Creek Park.

We have to drag Cooper inside at bedtime. He is having so much fun playing with his little buddy down the street - who has a sand box. They play hard and get absolutely filthy. He looked like a little hobo when he got home last night. Earlier this week Anna climbed into his bed and asked what was all over. It was full of sand. I didn't realize that he would go to bed with his head caked with it. He and his friend throw sand on their heads. I changed the sheets and Cooper grumbed. He said he was just going to get it sandy again because he liked it that way. It felt like a back rub. Yuck!

Hot days equal hot nights. Clare fell asleep pressed against the plastic at the bottom of her bed. She looked hot and sweaty!

It has been a good week. I try to keep our blog posts full of positive experiences and family events we want to remember, but I also wanted to share something I have been thinking about since shortly after Clare was born. Walking around with a child with a disability was a new experience for us. We noticed a lot of people looking at us differently. How do people view Clare? When we were at the water park earlier this month I overheard some boys call her weird. During the summer as she lay on some equipment to explore, several kids didn’t appear to see her at all. When they went leaping over her, one kid actually jumped right on top of her. Spencer has told me he avoids looking at people when he walks with her because he doesn’t want to see their stares. I’m the opposite, I TRY to make eye contact with people after I’ve noticed them staring at her – in an attempt to read their thoughts. What do they think when they look at her? I see an incredible, talented, loving girl. I see the many things that she can do. What do others see?

I know I have stared at people with disabilities before. I usually look with awe, amazed at how the teenage girl in the wheelchair is out with her friends, at how the boy with the walker can travel down the hallway without any support, how the girl in the adaptive seat is enjoying the park with her family. I look at the parents and feel a comeraderie. I stare, wondering if our future will look like that. I should attribute positive thoughts to people when they stare at Clare, but often I don’t. Often I worry that they are seeing her physical differences, all that she struggles with, all that she can’t do. What would make it easier? When you look at Clare, smile - at her or me. If you have a question, ask it. What would be ideal? See what she can do, not what she can’t. Instead of asking what is wrong with her, ask what makes her so amazing!

A Good Week

2011-09-18T21:00:00.000-06:00

A much better week for Clare. She is learning that her DS (developmental specialist - the aid who works with her) is not going away and will not be deterred by screaming, hitting, fit-throwing, etc. (Yeah, we saw some doozies last week!) So this week she started to settle in. The occupational and physiotherapist came and Clare showed off her stuff. She tolerated her stretches, sat independently in several different positions, stood in her standing frame and strolled across the room in her walker. The therapists were impressed. Then her vision specialist came again, but Clare had a much better time (she threw a killer fit for her last week.) Clare played with a slinky, explored a vision board with sensory objects dangling from it, listened to a music toy, manipulated a gel pack on a light box, and...

played with shaving cream on a light box. She gently touched it once, then started banging it. The foam sprayed everywhere. There were three adults in the room and we were covered - our hair, clothes and the carpet. (Next time I will suggest we do it on the hardwood.) Clare loved listening to us laugh and squeal. It was a good day!

Another thing I really like about Clare's new school program, is that all her therapists come to our home for their monthly consultation. Fewer trips to the hospital - wahoo! They bring toys and objects to help with the therapy and leave them for us to use. So instead of showing us what works well and then leaving me to find/make/buy it or feel guilty for not doing it - they lend it to us! Yeah! I love things that make life easier! I already feel like GRIT is helping to enrich Clare's life. We all feel so much better about Clare's school this week!

As a mom, one of my favorite sounds is that of my kids playing nicely together. I feel grateful that Anna and Cooper do that quite a lot. The past few months they have discovered the joy of lego. They love building compounds on the little green mat with a house, pool, garden, garage and vehicles. They play with it for a few days and then demolish it. Such good kids!

I am really impressed with Spencer. In the spring he signed up for the Bow 80 - an excruciating mountain bike race up and down five mountains (and not the small kind!) Spencer trained hard. He is in great shape, but he has never done a solo race like this before and he was feeling a bit nervous. But he finished it and did an incredible job - 6 hours and 10 minutes. I have never done anything like that and probably never will, but I am so proud of him. Way to go, baby!

(I don't have any pictures of Spencer riding, but here is one of us on a date night bike ride.)

On the Move

2011-09-10T19:46:00.001-06:00

We've got some new moves! This summer, Clare has started riding her bike. Sometimes I walk beside her and push her and sometimes dad holds on to her handle bars and they ride together. It has been great having another way to get around as a family. It is touching to see the look of pride and happiness in Clare's face as she rides. I think she feels like a big girl, doing the same thing as Anna and Cooper. (And yes, I know we need to get a helmet for her!)

She is also doing an incredible job walking. Earlier in the spring, we switched to a new type of walker. Then her therapist suggested we tried an arm gutter to help support her right arm. It helped, but she still seemed off balance so we ordered another arm gutter so she was more stable. They also made Clare a special neoprene mitt that allows us to velcro her right arm to the handle. With these supports in place, she is able to walk across the room with no weight bearing or balance support from me. I simply have to push the walker forward as the weight and coordination to move it, as well as herself, is still a little too tricky. It is phenomenal to see the progress she has made in the last six months!

Clare started her home-based therapeutic preschool program this week and it has been challenging. Clare doesn't adjust to change well - and there have been new people, toys and routines. We know this will be good for her and are hopeful as we ponder the goals we are going to work on with her therapists, but the transition is a little painful. This next week should be better!

Cooper continues to settle seamlessly into kindergarten. It is fun watching him come out of his shell as he runs out of class, calling to his new friends and jabbering non-stop about the games he played at recess and the centres he went to. It was quite funny the other day. We were hanging out at the playground, waiting to pick Anna up for lunch, when Cooper slung his backpack across his back with one shoulder strap hanging diagonally like a courier bag. He said, "this is how awesome dudes wear it." He makes me smile!

Anna is growing up. Despite the heat, she has worn skinny jeans or leggings every day this week so she could wear her boots. She has arranged a play date nearly every day after school. She is my little "teenage social butterfly."

First Day of School

2011-09-04T20:50:00.001-06:00

Well, it arrived. The day we've been both looking forward to and dreading. The first day of school. Anna wasn't quite as excited as she has been in past years. She enjoyed summer and knows the arrival of the school year brings hard work with it. Cooper, on the other hand, was thrilled. But he showed it in his own way. He talked about it lots during the days leading up to school, but I don't think he said a word from when we left the house until he was in his class room and his teacher needed him to talk to her. He did a shy little shuffle as we walked to school and kind of buried himself in his hoodie.

Anna was so happy to see all her old friends. When I picked her up at lunch she was very happy to be back and repeatedly told me her teacher is so nice.

I was able to go into Cooper's class with him for a few minutes to help him get comfortable. He felt pretty proud when he saw his coat hook, got his shoes on and quickly found the trains to play.

When the music started to shoo the parents out, Cooper joined all the other kids on the carpet and they got right into their routine of circle time. When I picked Cooper up, he was happy and already acting like a kindergarten student, talking about sitting "criss-cross applesauce", making letters out of lego, and talking about the centres where he had played. He told me about his new friends and asked how many more sleeps until he got to go back - dang long weekends! It was a great first day of school. The kids were happy, so mom and dad were happy. We can't believe how fast they grow up.

Clare doesn't start school until Sept. 6, but we met her developmental specialist, the lady who works with her every day. Her name is Ceri and she seems great. We are excited to see Clare's learning this next year! She has made such progress in her walking in the past couple months. She does quite well climbing up the stairs with support. She loves taking breaks as she climbs, playing peek-a-boo through the railing.

A Day at the Zoo

2011-08-28T20:59:00.000-06:00

We went to the zoo this week. We haven't been for over a year because the last time I took all the kids it felt really hard. Clare had seemed really agitated and the older kids didn't have as much fun because we had to try to keep Clare settled. But this trip was awesome! We were there for over four hours! Clare loves going for long walks, so a super long walk with lots of different textures to touch and sounds to hear was the perfect day for her. She especially loved listening to the loud jets flying low overhead and crying babies. She really enjoyed the butterfly room in the conservatory. Being surrounded by branches and leaves and having things zoom past her face seemed to really intrigue her. In there, she was content to sit still and look around.

Anna and Cooper talked me into a ride on the carousel. Clare and I stood to the side to watch. When the ride began Clare started belly laughing. She loved the spinning and music. It was such a beautiful sound to listen to as Anna and Cooper waved happily each time they circled around. More summer magic to remember!

After the carousel, we headed over to check out the tigers. We were just in time to hear the presentation. It was entertaining and informative. The kids were enthralled. Anna was even picked to act as the boar that the tiger ate for dinner. Cooper loved touching the tiger hide after the presentation was over.

Anna snapped a picture of Cooper making his evil bear face and sound effects. It was another great day!

Water Play

2011-08-21T21:12:00.000-06:00

Another year of swimming lessons at the Raymond pool complete. On the final day, when the kids got their progress reports, Cooper danced and sang with his little lisp, "I passed da test. I passed da test." The kids had a great time. Cooper was much braver this year and he had a great teacher. Cooper jumped off the diving board several times each day.

He did the front and back float. Near the end he even did it without help.

He became very confident and playful in the water. It was fun to see him grow.

Anna has always been brave in the water. She is a fish and had a great time. She was in the same class as her cousin Kelsie and the two seemed to love it.

The last day was a bit of a party. The waterslides were turned on and the kids had fun playing. It was the chilliest day - only 13 degrees. But you couldn't get those two out of the water. Anna's teacher told the kids they could go and warm up in the shower ten minutes before the class was over, but Anna joined Cooper's class and kept playing on the slides. We will definitely sign up again next year!

We tried to take Clare swimming on Saturday, but she wasn't feeling well and had to go home shortly after we got there. So she didn't spend much time at the pool - but she still got her water time. Clare has a love/hate relationship with baths. She hated them the first couple years of her life, but then discovered they were actually a lot of fun, and for the next year she would have a bath nearly every night, playing for an hour in the water if I let her. When she was casted this winter, she couldn't bath for 6 weeks, and I think she forgot how much fun baths are. She has been getting very upset during baths. But in the past month her passion has returned. She gets excited when we go into the bathroom and squeals with excitement when her toes first hit the water. She had baths nearly every day at grandma's house. Look at the happiness in those eyes!

Her new bath game is throwing water out of the tub. She cups her hand, dips it under the water and launches it out of the tub. And she aims. If someone comes in to say hello to her, she takes aim and fires and you get VERY wet.

Grandma doesn't have a shower curtain, so the whole bathroom was soaked. Luckily it is all tile, so it wipes up pretty easy.

Her face is covered with water droplets and she always tips her head into the water so her eye is submerged. You can kind of see it in the picture. She is a crazy lady, but we all love listening to the spontaneous laughter that erupts every so often as she plays.

Taber corn came into season while we were there. The kids had a great time husking it. It was so sweet and sticky that the silk would stick to our fingers. Delicious!

Playing in Southern Alberta

2011-08-14T15:52:00.000-06:00

Our first week in Raymond has been full! We have been hiking, biking, swimming, visiting parks and playing with cousins.

We met the Hayhursts and Aunt Tori in Waterton to hike Bear's Hump, eat ice cream and throw rocks in the lake. We saw a black bear as we drove into the park and then a deer as we were driving through town.

We had fun picking berries at a U-pick just outside Lethbridge. Is there anything yummier than sun-warmed fruit picked straight from the branches? We tried raspberries and saskatoon berries. Mmmmm.

Dad came down for the weekend and we had a full day on Saturday going to Writing on Stone Provincial Park then swimming at the Raymond pool to cool down.

We had such a good time exploring the hoodoos. Cooper was thrilled to lead the way, jumping and sliding along the paths. Anna wanted to show us all her favorite spots from her visit earlier in the year with Uncle Lee. It's great making fun family memories.

Our Stay-cation in Calgary

2011-08-07T10:05:00.002-06:00

We had another nice week, this one at home. We had to catch up on a few appointments and get some housework done, but we still found some time to play. We were able to get out and enjoy Fish Creek. Spencer goes biking there almost every night. So he is a great guide! On our date nights we have started going for a bike ride together. I love it. On the long weekend we went on a couple family hikes/walks/ bike rides down there. Dad knows all the single track paths and the older kids love exploring. During one of our walks, we came across a huge St. Bernard. It was very frisky and was barking and trying to jump on Spencer. The kids were a little nervous - to be honest so were Spencer and I. The dog was not listening very well to his owner and it took several minutes before he finally went off down another path and left us alone. Our own little "bear" encounter in the woods.

Anna and Cooper loved racing up the many steep hills in the park.

It was so hot this past week. When we got back to the van after one of our adventures, Cooper collapsed in his car seat and exclaimed, "I am sweaty like a hot dog." Hmmm, never, ever thought of it like that - but I guess hot dogs do look pretty sweaty when they are piping hot.

We are so lucky to have such a big, beautiful area in the middle of our city. It is so peaceful to spend an afternoon wandering along the paths. Clare loves going for walks there! She seems to love being surrounded by trees and seeing the river peaking through every now and then (although she sometimes complains in frustration at not being allowed to go lay down and splash in it). She often gets the giggles when someone comes running or riding past us. I think we are going to make a lot more visits there before the snow falls.

We also spent an afternoon at Sikome lake. The kids love digging to the plastic liner at the bottom of the sand and then building voclanoes, castles and special sand seats for themselves. Cooper wanted to be buried this time. Clare spent her time playing with her toys and Aunt Tori in the shade of her tent. Then about 45 minutes before it was time to go, I carried her down to the water. She quickly figured out what was on the agenda and started squealing with excitement. She was thrilled to sit in the water and splash for 20 minutes until she was blue and shivering. Then she hollered as I carried her back up to her tent to dry off and warm up. She is a girl of extreme emotions!

We had a fun week in Calgary - but we have packed and loaded up for a couple weeks at Grandma Jackson's and swim lessons at the outdoor pool in Raymond. The summer fun continues!

Another Trip to Surveyor's

2011-08-01T20:09:00.001-06:00

My mom and dad invited us camping with them. Yeah - another trip to the lake. But this time Clare got to go with us. I was a little worried about how she would do, but figured we should give it a try. Spencer had to stay home to work, but both my parents were there and Tori headed out so she could help too. It went really well. She spent time playing in her tent on the sand. She got the giggles good and I caught it on film.

Cooper was pretty excited that Emilee had brought this awesome dump truck to play in the sand.

Clare loves splashing in water - she usually has to be satisfied with just of glass of it. But she was thrilled with the opportunity to use a whole lake. She would sit and splash until she was shivering and her hand was blue. Then she would scream in complaint when I lifted her out of the water. Whoever was holding her was covered in water and sand too! She loved being there.

On the second visit to the beach, she was more comfortable and wanted to get right in the water. The tricky part was keeping her mouth out of the lake so she didn't inhale it.

Anna is turning into quite a little fish and had fun doing handstands in the water.

We played lots of games this trip - thanks to a few rainy, cloudy days.

And had fun building fires.

And sitting by them. The older two had lots more s'mores. Grandpa had a fun trick. He made colorful fires. It was neat seeing green, purple and blue flames.

For breakfast one day, Grandpa made special pancakes spelling the kids' names. Anna is going through a stage this summer, preferring to be called Hannah instead of Anna. She is such a goof ball!

It was another great trip!

More Summer Fun

2011-07-31T19:33:00.000-06:00

We can't believe summer is half over. We are having such a great time. A couple weeks ago, we went out to the waterpark in Okotoks. I wasn't sure what Clare would think, but she loved it! She stood, leaning against me, playing in the spray, until her legs were too tired to keep her up. She was drenched, but it was the 30+ day, so it worked out great!

Spencer discovered a new toy that Clare loves. He had a friend pick up a helicopter for him from the Stampede and was buzzing it over Clare's head. She does a great job finding it and following it with her eyes. She seems to like the sound it makes and the breeze that blows on her face.

Last weekend, friends invited us to their cabin in Montana. Unfortunately, due to Clare's complicated medical history, we can't get travel insurance for her and don't feel comfortable taking her out of the country without it, so she couldn't go with us. Luckily though, Grandma and Grandpa Jackson were happy to have her for a few days. They met us by the temple. I loved these pictures of Clare and her dad. We are so grateful for our faith that families can be together forever!

The kids enjoyed their first trip over Logan's Pass. It was slow, and there were several stops, but we enjoyed the amazing scenery!

We had such a fun weekend it Montana - motorbiking, skateboarding, lighting off fireworks, eating great food, shopping and playing at the lake. Thanks for the great time, Lees!

Camping at Surveyor's Lake

2011-07-17T19:16:00.002-06:00

We got to do it again this year! Mom called and offered to look after Clare for the week so I could take Anna and Cooper to camp in their trailer with my sister and their kids. We love doing it. We played in the water all day the first two days we were there. The weather was beautiful. Cooper loved riding in the inflatable car. He spent hours "driving" around the lake, making car noises and parking on the beach. All the kids had fun playing in the sand. Cera thought it was hilarious when we joked about her digging a hole to China, but a couple of their holes got pretty deep. Anna had a great time having her whole body buried in the sand - a first for her she said.

The kids love going for canoe rides - but Brandy had to do all the rowing as my arms are still a little wimpy after my break a couple months ago.

After dumping out a sand-castle shaped pile of sand, Cooper threw up his arms and exlaimed, "ta da!" I grabbed my camera and made him reenact it. Love it.

Anna had to work for her keep. She helped with dishes several times. All the kids were pretty helpful, got along well, and went to bed quite good. It was a fun trip.

The last few days were chillier, so we spent some time playing at parks, eating junk food and going for hikes. Cooper said he loved "hiking through the jungle because he could find lots of good sticks." He had a walking stick, a sword stick and a gun stick in his pile of stuff to bring home.

We had camp fires several nights complete with stories, music (thanks to a neighbouring camper who shared his violin) and s'mores, of course!

We had an incredible time again this year. Thanks so much to the Hayhursts for being so much fun, my parents for sharing their trailer and looking after Clare and our husbands who stayed at home, working, to finance our lives of leisure!

P.S. Spencer just told me a funny story. Cooper walked up to Spencer during the pre-bed routine, put out his hand and very seriously said, "I'm gonna go to bed really good 'cause I've got a big day tomorrow helping mom." The to-do list is long, however I think it may be ignored while we take a trip to the waterpark to enjoy the 32 degree weather. I wish Cooper really would go to bed good - but they are in their room being loud and silly. Spencer went in to quiet them down and questioned Cooper about his intention. "I decided I'll just sleep in tomorrow," he said. I guess I'm ok with that. Now I just have to get Clare to buy in to that plan!

Summer Fun

2011-07-10T22:22:00.000-06:00

There is an awesome wheel-chair accessible park at Henderson lake in Lethbridge that we love to play at when we are there.

Cooper didn't spend much time playing on the equipment. He liked chasing the birds and pushing his cousin Paxton in the stroller. He took a break from chasing the birds and I asked him to do it again so I could snap a picture. He refused saying, "I'm scared. The birds are starting to chase me." So instead he told me he was saving his cousin from the "creepy critters and evil birds." There were caterpillars and mosquitos everywhere!

Clare liked being able to roll up the ramps and explore the equipment. She also liked hanging with Auntie Jenn's puppy, Roxie. The smiles may have also reflected her Aunt's infectious laughter.

Aunt Jenn often paints the kids' faces when we are there and always does an incredible job. Cooper often wants to be a tiger and Anna likes being a super hero. This time she was Super-Hannah (the name she wanted everyone to call her by all week.)

Clare was having a lot of fun playing with her cousin Ryleigh so Aunt Jenn lifted her onto her cousin for a cuddle. It was pretty sweet.

I was having a busy mom moment this afternoon, doing a hundred things at once, when Cooper asked me for some lemonade. I didn't want a full pitcher in the fridge so I told him to mix up a glass. He did a good job being independent and quietly worked away on it. After a few minutes he complained that he couldn't taste it, so I told him to add a bit more powder, I continued with my chores and thought all was well until he complained again. This time I went over to check it out. I scraped his spoon along the bottom of the glass and easily scooped up a teaspoonful of powder. Yeah, the reason you can't taste it Cooper is because the powder burnt your taste buds off - man that looked like some strong juice. Guess he isn't quite old enough to make his own lemonade yet!

Family Reunion Time

2011-07-04T21:35:00.000-06:00

We love the Jackson family reunion. Grandma and Grandpa Jackson moved to Raymond last year and decided to hold the reunion the weekend of Heritage Days so we could tie some of the town's festivities into our family activities. It was a busy but fun week of family, food and fun.

We drove out to Writing on Stone and were amazed by to the hoodoos that seemed to pop out of the prairies. Cooper, Clare and I only stayed for a little while because Cooper was fighting a bug and I had a hard time four-wheeling Clare's wheelchair, but we had fun exploring the beginning part of the trail before we took off.

Anna had a blast - and Lee actually took them up for another few hours the next day. The kids swore they heard and even saw tons of rattlesnakes. I was a little worried until Lee assured me it didn't exactly happen that way. What? Anna being dramatic?

Clare discovered a new toy - and liked it right away. Thanks for sharing, Pax!

It was the kids first parade. Everything is more fun with dad around. He led the "candy, candy" chant and get the kids really excited. We had a good laugh when we realized the pharmacy float was throwing halls lozenges.

Later that afternoon, Uncle Keith brought his horse and buggy over and took all the kids for a ride around the block.

In the evening, there was a street fair with games and food. The kids loved panning for gold and lassoing wooden animals.

We had fun spending time with our relatives.

Going for rides on the neighbours Vespa.

There was lots of good food.

And lots and lots of love! There is nothing better than time with family. We sure love ours!

2011-06-26T22:10:00.002-06:00

It was a nice week. Here are the highlights: Anna and her friend started emailing this week. Dad snapped a picture. She looks so grown up working away on the computer.

We got some new dress ups this week. Cooper put on this helmet and posed for dad.

Clare got a haircut. We think she looks pretty adorable!

Cooper had his soccer wind-up and got his first medal. He was pretty proud of himself.

The neighbourhood kids put on a little production of The Three Little Pigs in our backyard. They started working on it over a month ago. We thought they would have fun for a day or two - but they got really into it. They wrote scripts, made costumes and spent some serious time practicing. Then they had several meetings about when they would hold the production and one day last week the kids posted this sign on our back fence. They said that admission was free, but that donations to the Children's Hospital would be accepted. A couple months ago, the kids held a craft sale and raised $7.00 for the Hospital. These thoughtful children decided they wanted to raise more money. And our kind neighbours and friends did donate. The kids earned $80! I will deliver the money to the Hospital next week! Thanks so much everyone! Through your generosity to the hospital, we feel your love and concern for Clare.

The play was well done. The house of sticks and straw were made out of Cooper's crazy fort sticks and when the wolf blew it down, the little pigs pushed against the sides and the house snapped apart. It was funny!

Anna was the narrator and read the story loud and clear. She is quite the performer! Cooper also did a great job being the third little pig. He looked great in Anna's pink shirt. We were proud of him because there were two other sets of parents watching and he wasn't shy at all! Good job, guys!

2011-06-19T19:53:00.003-06:00

Happy Father's Day to all the awesome dads in our lives! We are so grateful for all you do for us - the smiles you bring, the examples of goodness you are, the love you share, the Mr. Fix-it moments (especially with duct tape - the washing machine and rubber boot miracles), the bike rides, the slurpee runs, the baseball games in the park, the team lawn mowing..... It really is an endless list. You make our lives so much better! We love you!

Looking back through the last few week's worth of pictures - there are quite a few of Clare. Her days are happiest when she is feeling healthy, her seizures aren't too bad and she has some fun things planned to keep her from getting bored. We have been lucky to be involved in outpatient programs at the Rotary Flames House, a community based facility next door to the Children's Hospital that offers support to families of children facing progressive, chronic or life-limiting illnesses. Typically she goes there three or four times a month where she visits the multisensory room to play with one of her favorite things - bubble tubes. Usually she stays for an activity after. A couple weeks ago Clare met Jumpa Jousta, the clown, who came and played in the multisensory room with her.

Then, last week a volunteer brought in some dogs. Chevy, the chocolate lab, was very enthralled with Clare. He was tuned to Clare wherever she was and let Clare explore her face and feet. Clare was too busy scooting around the floor, playing with the curtains and banging the wall to cuddle too much, but she did enjoy patting the puppy.

Clare loves her new bike. It arrived a couple weeks ago, but with the yucky weather and the craziness of a house with a broken-elbow-mom, we just got the bike out and tried it this weekend. It was incredible. Clare was giggling, smiling proudly at herself and enjoying being outside. A much better reaction than her screaming and arching when they fitted her at the bike clinic! I have to admit, that I was a little choked up as I watched my little lady pedal up the street. I'm excited for Spencer to rig her up to our bikes to go on our first full family bike ride!

We have awesome people that help us work with Clare. Last week, Clare was having a really happy, productive day and Leigh Ann, suggested we try food play with a strawberry. Clare loved it. She spent a minute or two licking and scraping the berry with her teeth. It was a very positive experience. Feeding hasn't been as much of a focus this past year, as we have spent a lot of time working on gross motor goals, but I hope when she starts school in the fall, the aid can make some progress in this area.

One day last week, Cooper and I were walking home from dropping Anna at school. It was rainy and cold and I was hustling home. Cooper was lagging behind, so I turned around to see what was keeping him. He was stopped on the sidewalk. He looked up at me with a shrug, "Worm crossin'." So we waited for quite a while 'cause worms don't move too fast. Then we continued on our way only to be interrupted by another worm crossing Cooper's path. He paused for a few seconds, then said, "Oh well" and rode right over top of it. In his defense, it was very chilly out!

Spencer told me another good Cooper story. On Saturday, Spencer took the older kids to Canadian Tire to buy some bike tires. The kids were being turkeys, asking Spencer to buy them anything and everything that looked remotely interesting. Of course, Spencer kept telling them no, they didn't need it. Cooper seemed to understand, but with mild exasperation he said, "Dad, I wish my pockets were full of money out to here (hands stretching out as far as he could from his sides)." Don't we all, Cooper!

We are starting to get pretty excited for school to end. Only a week and a half of school left! (Did you hear that, Mr. Sun!?!)

Short One

2011-06-12T20:43:00.000-06:00

It was a rough seizure day for Clare today - so it is going to be a short blog tonight. Cooper is a neat kid. Tonight, Spencer pointed out how he enjoys the simple pleasures in life. He walked up the steps onto the deck as Spencer was barbecuing some hot dogs. He walked over to the bbq and paused to take a deep whiff. "Smells good, dad!" One day last week, Spencer used the zoom and caught these pictures of Cooper playing by himself in the slide. The pictures tell the story - but you can see, he had invented quite an interesting game.

Clare's speech language pathologist has us working with her on cards to help create a universal way for her to communicate if oral language doesn't develop (this can easily transition into a tech device - like an ipad). We use placement, color and saying the word to help her identify the card - but over the past week, I have seen her correctly use the yes card to answer questions several times. It is exciting to see the way her eyes light up as she realizes she has told us something and waits to have her "command" responded to. I think she really understands what she is doing. Next I will start giving her situations to say no and see if she can use both cards effectively.

Clare loves giving hugs to everyone around her. She reaches towards you and calls you with a pretty sounding song.

It was Anna's dance recital this weekend. She is a very talented girl and did a beautiful job. Dad has a video - but I haven't got it uploaded yet. I'll try to get it on in the next day or two.

Leaping Lizard!

2011-06-05T17:23:00.000-06:00

We went over to Grandma and Grandpa Richards for a while yesterday. Uncle Matt moved back in with them for a while. He loves pets and has a couple. One of them is a little lizard. He was so cool to touch. When he walked on your arm it felt like velvet sliding across your skin. Cooper was totally in to the lizard! He didn't take any convincing to hold the little guy.

Clare was having quite a good giggle listening to us all laugh and talk while we were holding the lizard, so we decided to give her a turn to feel him. She seemed ok with it.

Anna was a little more reluctant, but she finally decided she wanted to do it and she thought it was awesome! Now she is convinced we should get one. I think the fish are going to have to do for a while!

Many Helping Hands

2011-05-29T20:42:00.000-06:00

It has been a "count your blessings" kind of week. I have been pretty useless. I can do very little with my arms, although, thankfully they are past the point of constantly aching and now only hurt if I move them too far or use them too much. We are so grateful for all the help we have received this week. One day at dinner, we were listing all the people who had helped us. We counted over 20 people - and there have been more since then. So thanks to everyone who have brought meals, helped me take care of Clare, driven Anna to school, had Cooper over for play dates, picked things up at the store .... I really don't know what I would have done without all the kindness and generosity.

Last week someone had lifted Clare into her seat by the table and I was playing in water with her while Cooper wrestled with her on her other side. It was so cute to hear him lean over and tussle her hair saying, "That's my girl." Those two have a very sweet relationship.

And I am so grateful for all that Spencer has done the past week. He is tired after a day at work, but he gets home and quickly turns into Mr. Mom - changing diapers, feeding kids, running showers, getting kids in jammies and into bed. And he does it with his "Spencer finesse". Tonight he made the kids ice cream cones with his secret ingredient - black and red sprinkles between each scoop. Look at the smile on that face!

Ouch!

2011-05-22T16:57:00.002-06:00

Well it feels like summer may actually plan on making an appearance this year. The signs are starting to pop up. Mosquitos buzzing around, little sun burned necks quickly turning a coppery brown, watermelon in the fridge and Cooper's excited dash to the backyard when dad mentions mowing the lawn. Hooray!

Exciting new at our house this week - Cooper scored his first soccer goal. Unfortunately due to Clare's still nasty ear, she and I stayed home. But dad called to report the event. Cooper broke away, raced down the field, shot the ball and it got air, sailing into the top corner of the net. Then Coop ran all the way back down the field to give his dad a high five. Pretty sweet!

Clare also reached a milestone this week. Up until now, her braces have been one solid piece. But since she has made some pretty big gains walking, her neuromotor doctor thought it might be beneficial to her to hinge them so she could bend her ankle as she walks. It adds additional strength and balance demands and has required several visits to the orthotist as we try to trouble shoot pressure spots on the modified braces - but it looks like it is going to be a good thing.

So there have been lots of good things happening at our house this week, but the last couple days it has been a bit harder to keep the smiles on our faces. Yesterday morning, I broke my radial head - my right elbow. It was such a nice sunny morning that I decided to take Anna and Cooper for a bike ride/run. They love to ride their bikes with me while I jog around the neighbourhood. Cooper sometimes is a little ways behind me or sometimes he speeds up ahead of me on striaightaway paths but I usually avoid running right next to him because his stops and swerves are a little unpredictable. As we came up to the crosswalk by the Macs, he asked which way we were going. I pointed and kept going since no cars were coming. When I went to take my next step his little blue bike was right under me and there was nowhere for my legs to go. They tangled in his tires and pedals and I went down - hard - on my hands. I stood up, not feeling much pain yet, to check on Cooper and get us off the road. Cooper looked at me, a little put out that I had dove on top of him and made him crash. But he was tough, didn't cry and pedaled off when I explained we were going to cut our run short and walk home. I don't know if it was because he was upset with me, or more likely because he was feeling bashful having been involved in the accident, but he didn't have much to do with me until he snuggled up beside me for an extended cuddle on the couch before bed.

Anna has been a little mother to me since it happened. As we walked home, she offered to double me on her bike (which probably would have been even funnier to see than my actual crash), and kept sharing words of encouragement that we were almost home. She has stayed by my side most of the weekend, adjusting pillows, reaching things for me or rubbing my arm. I spent most of the day icing my elbow and hoping it would start to feel better. But when, at the end of the day, I still couldn't rotate my wrist or straighten my arm, Spencer thought I should head over to urgent care. My round trip took an hour and a half and I learned of my break and acquired a lovely sling. Hopefully it will start feeling a lot better in the next few days,

Spencer has been taking great care of me and the kids. He took Clare out to my parent's house for a sleepover. She had been crying and screaming a lot - she has a serious mom addiction and can't handle knowing I'm around and not picking her up and playing with her the way I usually do. So a visit to grandma's will be good for her and me! We are grateful for the many offers of help we have already received! We will do our best to handle this - but I am a little worried about how to do all that needs doing without my right arm.

Our Five-Year-Old

2011-05-15T17:16:00.001-06:00

Cooper turned 5 this week and woke up "feeling taller." He had a wonderful day. So many people thought of him - calling him, sending him cards and just making him feel special. He got a skateboard for his birthday and was able to go out for dinner at the restaurant he chose - East Side Mario's. He couldn't wait for his "real birthday" though, (a.k.a. birthday party.) He wanted an exact repeat of last year's party - the same lunch at McDonalds and the same Spiderman birthday cake. He did want to add a Spiderman pinata and a pin the tail on the donkey game. The party was a hit - Cooper was thrilled.

Cooper loved all the thoughtful gifts. When he opened one board game, he growled, "yes, I always wanted that!"

We couldn't find a Spiderman pinata, so my sister told me I should make one. It wasn't that hard and I discovered that homemade pinatas are much better for little kid's parties. It held up to lots of hits - but broke a bit with each smash so they kids felt like they were accomplishing something!

It was a great time!

A couple funny moments this week to remember. When we were getting ready for church today, Cooper went and chose his clothes all by himself. got his pants on and his arms in his shirt before coming to me for help. He usually needs me to help him a lot more than this. I complimented him on his big 5 year old getting ready skills. He responded by saying, "Now I just need to get talented at doing up buttons."

I also saw the power of advertising. They often play the Charmin commercial with the cartoon bear on the kids channels. I was doing some coupon shopping with Cooper and grabbed a bag of Charmin toilet paper. It's not a brand we usually buy. He looked excited and said, "Mom, that gets your bum really clean!"

One of the neighbour boys was over one day and the kids were having a discussion about who had a tougher dad. Anna piped up, "My dad fell off his bike and hit his neck on a log - and he didn't even cry. He rides his bike down 24 foot cliffs - and he doesn't even cry." Dad doesn't cry much - so he is very tough!

When Cooper and I get groceries he likes to try to convince me to buy treats. Often, when we walk down the dairy aisle, he begs for aerosol whipping cream. I am very cheap so my response is usually - no we don't need that. But last week, I was killing time at Shopper's Drug Mart after picking up a prescription for Clare and was waiting to pick Anna up from dance. I walked down the refrigerated aisle and saw the whipping cream on sale for 99 cents. I grabbed a couple. I was so excited to show Cooper my surprise.

Dad was pretty excited too!

We decided it was time to start weaning Clare from her afternoon naps. She is waking up earlier and earlier and she has school in the afternoon starting in September - so it's time. But after making this decision we discovered she is fighting an ear infection. She has been pretty tired this week and has fallen asleep on the floor a couple times - it's kinda cute! (By the way - I have learned that ear infections are pretty yucky when you have ear tubes! But as Shrek would say - better out than in.)

Happy Mother's Day

2011-05-09T06:57:00.001-06:00

It is such a privilege to be a mom! I had such a nice day. When I woke up, Anna and Cooper had several cards and a gift set outside my bedroom. Cooper's card had a picture of me with a few circles on my stomach. A belly button? No a picture of my tummy and him inside. Anna's card was full of sweet, thoughtful words. There were lots of cuddles and kindnesses throughout the day. Then Spencer barbecued and cleaned up a yummy steak barbecue dinner. Anna and Cooper set the table and put notes and streamers by my spot. They made me feel pretty special. Near the end of the meal, the kids wanted to put some music on for me. Dad took over and played Bruno Mars Just the Way You Are and we had a big family dance fest. It was one of those moments you try to take a picture of in your heart. I am so grateful for my family!

The dance soon became a sword fight.

Soccer started last week. Cooper was so excited. He put on his shoes and shin pads on Sunday and practiced lots until his first game Monday night. The games are a little mini family reunion. Uncle Ryan and Uncle Jon are the coaches and Cooper gets to play with four of his cousins. Soccer will be fun this year.

The farmer who owns the land has plowed over half the field they played soccer on last year, so Anna isn't playing this year - well not on a team at least.

Clare had a blast. She loved circling around the soccer field enjoying the bouncy ride. She also thought it was pretty hilarious every time I cheered for Cooper or the pack of brightly colored kids ran by her line of vision.

Clare is spending a lot of time in her standing frame most days. It is great. She loves to watch and touch the big TV screen while she is splashing in her glass of water. It gets every where. Notice the big drops on her face!

Cooper is a fun boy to hang out with. He said some funny things last week. He and some friends were drawing with chalk on the sidewalk behind our house. He came in and told me they were making a "hunormous" hopscotch grid with 100 squares! Then one morning he woke up early and crawled into bed with me and Clare. I asked him if he had any dreams. He said, "No I forgot to turn them on." This is what we saw out the window on Friday afternoon - super Cooper with his cape, flying down the path on his scooter. What a man!

Happy Thoughts

2011-05-01T20:59:00.001-06:00

This week Anna and I have been having some discussions about emotions. Several times she has told me that she is sad and she doesn't know why. We talked about all the reasons we have to be happy - that how we feel is often a choice. It isn't always easy, but we do have control. Many days this pep talk is as much for me as for her. There are days and weeks where being cheerful and positive is harder than others. But there is so much to smile about and be grateful for if we make the choice to look. I was reading a book this week that had a quote from The Secret Garden. It said: One of the new things people began to find out in the last century was that thoughts - just mere thoughts - are as powerful as electric batteries - as good for one as sunlight is, or as bad for one as poison. To let a sad thought or a bad one get into your mind is as dangerous as letting a scarlet fever germ get into your body. If you let it stay there after it has got in you may never get it out as long as you live.

So here are our happy thoughts for the week. Sunny days and popsicles. (Cooper told me he wanted to go outside and suntan. "I don't want my skin to be peach.")

Kites and the sound of laughing children. (Dollar stores also make me smile - where you can pick up a kite for under two bucks.)

The first bite of corn on the cob and giggling about the way it's juiciness can squirt you in the face. (Cooper LOVES corn on the cob and asks for it year round - so he is thrilled when it comes in season. We have snapped this exact picture every year since he started eating it!)

We had our appointment with the neurologist this week. Clare's seizure meds were upped quite substantially and they have helped reduce the number of seizures she is having, although she continues to have several each day. He said it takes up to a week for the medication to reach a stable level in her blood. So this week, in our house, we are happy about fewer seizures and using the power of our thoughts (and prayers) to hope for even better control over them.

Easter

2011-04-24T21:08:00.002-06:00

Traditions are an interesting thing. Sometimes they are passed down to you from a long line of family members, sometimes you thoughtfully choose them to incorporate into your life and sometimes they choose you. Last Easter we were at a cousin's house and she had made a milk jug Easter bunny basket. My kids loved it and decided to make their own. I was happy to help them with their fun one afternoon when Anna had a friend over. Last week, the same friend was over and all the kids informed me that we had forgotten to make our Easter Bunnies this year. We had? I didn't know it had been on the agenda. And a new tradition is born, I guess.

Cooper got a tooth pulled this week - he had banged it quite a while ago and recently the dead tooth had developed an abscess. It didn't seem to bug him but the dentist said it had to go. He looks so different with a missing tooth. A lot older.

As always, Easter morning was a lot of fun as the kids searched high and low for the goodies their bunny friend had left - lots of candy, some fun "eye-poppin'" pens, and some new spring jackets for Clare.

It was a good morning - but I was especially grateful for the chance to reflect on the real reason for the Easter celebration. I am so grateful for the atonement and resurrection of my Savior - for His love for me and my family, for His forgiving and generous nature and the way the atonement allows me to become my very best self. I am thankful for my knowledge of the resurrection and the hope I have to see my beautiful girl when she is resurrected and her body is once more in its "perfect form." What a joy it will be to walk and visit with her!

Spencer did such an amazing job building a "big girl" bed for Clare this week. He got together with one of his buddies who is an industrial designer and they added some acrylic sides to a really nice bed we had. It is exciting because it keeps her safe but she can look around her room and see the world the way any other 3 year old would. I also love being able to tip the side down and climb in beside her. I've been doing that quite a bit since we got the bed set up. Clare has been making a lot of good progress developmentally, but lately her seizures have really taken a turn for the worse. She used to have a cluster of seizures every two weeks at most, but since mid-March she has been having them daily - sometimes up to 10 or 15 a day. They are manifesting themselves in many different ways - sometimes she has a startle, other times her body stiffens, sometimes she acts really panicked and other times she is vacant and unresponsive. And the ones we hate the most are the ones where she stops breathing for up to two minutes. Yesterday, after nearly 45 minutes of non-stop seizing and wretching, we had to resort to spraying her rescue meds up her nose to get them to stop - a last resort. The increase in seizure activity makes me very nervous. I am a little scared that we are losing control of them. Clare's neurologist often tells us that the seizures don't hurt her - and thankfully they don't seem to set her back developmentally - but they do hurt her. I hate seeing the way her little brow furrows in pain when she is having a day of seizures, how she bites her soother and yells in frustration, or pulls at her hair and rubs her head, probably because of a headache. We are praying and hoping for the best. We will see what the neurologist says. We see him for our annual appointment this week.

Trying a New Walker

2011-04-17T20:59:00.003-06:00

Clare was having some happy time in her standing frame on Saturday morning and Anna was in the mood to play hair-do. Nothing like watching sisters get gussied up!

Cooper and I had some funny conversations this week. For the past year, whenever I asked Anna what she wants to do when she grows up, she says she wants to work at Zellers. I have been confused by that. We rarely shop there. I can't figure out the draw, unless it is the Peeps I bought them there last year after Easter. When questioned, Anna said it is because they have nice sliding doors and big, wide aisles. - can't quite figure it out. Last Monday, we were driving home from the hospital and passed the airplane outside the Military Museum. Cooper said he wished he was an "airplane flyer" and could go in it. I told him he could be a pilot when he grew up. Would he like to fly army planes or holiday planes? He said, "No I can't do that. I'm gonna be a Zellers worker 'cause I might see Anna. I'll have to ask her what days she works." My kids have big aspirations!

Then later in the week, he was satisfying his newly acquired Star Wars craving when he said to me, "You know what mom, Jabba the Hut looks like a croissant." I laughed. He kind of does. It's going to be a little easier to avoid eating too many of those buttery treats now that I think of them that way!

Since Clare's botox injections in January, she has been in an intensive physio program involving weekly visits to her therapist at the hospital and daily tracking of the specific goals we are working on. We focus on independent sitting, weight bearing while standing, supported walking and stretching. We have seen some pretty incredible improvements as a result of the relaxed tone from the botox, better fitting braces, and all the increased therapy work. She has showed an increased interest in walking but prefers to walk with us hunched over supporting her. Every time we put her in her expensive walker, she starts yelling, arching and refusing to walk. I have tried several different strategies to combat this with little success. We met with a different physiotherapist this week and she suggested trying one of the simpler walkers. I looked at it and thought, with its limited support, there is no way Clare will be able to use it. But we tried it anyway, and she did great. She didn't resist at all. I have to help her balance and help steer her across the room, but my hand is providing very little weight bearing support on her side. The therapist has let us borrow it for the month and if it continues to be successful, we will look into getting one for Clare. They could probably modify it so there is an elbow rest on the right side to support her weaker arm. This video isn't great because I can't figure out how to turn it side ways, but it will give you a little glimpse of how well she is doing - and we've only had it for a few days. I can't wait to see what the next months hold in store!

Fish and Bikes

2011-04-10T21:50:00.001-06:00

Another fun filled week. On Tuesday, Anna's class went on a field trip to the zoo. Anna loves to have me volunteer at her school and there were no appointments scheduled, so I was able to keep Anna company. We enjoyed visiting some of our favorite animals - watching a stork dance excitedly around some fresh sod, seeing the gorillas swing and listening to the lions roar (they seem much more active when it isn't as hot out, which is weird since they come from Africa!) Then, after lunch, we took a guided tour of the Canadian wilds. The lady was very interesting and Anna loved feeling the artifacts she shared. One thing we learned is that reindeers grow antlers in the summer. The male reindeer usually drop their antlers in the beginning of winter while the females retain their antlers until the spring. Are all Santa's reindeers girls? Shocking!

Anna and Cooper want a pet. "A hamster?" Anna begged. Not a chance! But then she asked for a fish. We already have a bowl, and since betta fish can survive in a muddy puddle, I figure they stand a good chance. So we made a trip to Petland to check them out and learn a bit about how to care for them. Now Anna and Cooper have to "earn" it by making good, mature choices for the next month and doing extra chores around the house.

Clare wasn't too interested in looking at the dogs, cats and birds - she was too distracted by the awesome fluorescent lights on the ceiling but she loved the fish. She wanted to touch all the tanks. They were the perfect height! She was not impressed when we had to go - but we had an appointment to get her fitted for an adapted bike. We couldn't be late!

Because Clare is only three and this is her first bike, the lady who was helping us tried her in a supportive tricycle. Her knees jammed up against the leg supports. So we tried her on their smallest bike. Her knees hit the handle bars on that one too! So we had to move up another size. She is so tall. Clare has trouble with new environments and takes a while to feel comfortable with new toys and equipment, so she had a good cry when we put her on the bike, but with her back supported, a butterfly chest belt and her feet strapped to special pedals, she was able to ride across the room as we pushed her. There will be other adaptations that allow her to ride straight as we attach her bike to mine or Spencer's to cruise around the neighbourhood. I think she is going to love it! It will be an amazing addition to our family this summer.

We snapped this picture of Clare chilling on the stairs this afternoon in her fancy new church clothes. She was actually pointing up at the bonus room. She is becoming a real TV head. She loves the big TV on as well as her little DVD player right up against her face.

Spring Break Wrap Up

2011-04-03T20:58:00.001-06:00

The rest of spring break has been fun. After a day of Clare's appointments on Monday, the kids and I loaded up and went to Raymond to visit Grandma and Grandpa Jackson and the Ehlerts. We watched the town's production of Annie, Get Your Gun on Tuesday night. The kids love going to plays and I thought it was quite well done. Then the next day, Auntie Jenn picked up Anna and Cooper for a playdate. The activity - picking up the winter's dog poop in her yard. She snapped these pictures and sent them to me with the title "might be the happiest poop pickeruppers I ever did see!" I guess we enjoy the unusual. It may have helped that they were paid with a slurpee and treat from the town pump when they were done.

Then Jenn painted all the kids' faces. Anna was a rock star, Cooper a pirate and Clare a bunny. They looked amazing.

We were supposed to go to Playtopia with the Hayhursts on Friday, but Cooper had an abscess on his gum, so we had to schedule a last minute dentist appointment. The cousins came to play at our house. Brandy planned a fun April Fool's treat. The kids made oreo/pudding dirt and planted candy worms and flowers in pots. They loved tricking me and Cooper when we got home.

Anna and Cooper enjoyed ANOTHER huge dump of snow.

The other morning I learned that Cooper has discovered the fine art of flattery. He loves pancakes, waffles, french toast, etc. for breakfast. On Saturday morning I had planned on making oatmeal when Coop piped up, "Mom, how 'bout some of your famous waffles?" Famous waffles - never heard them called that before. But it worked. He got those and my "famous smoothies."

At bed time on Saturday night Anna and I butted heads a bit and she ended up going to bed without a story. She came out shortly after I had tucked them in and turned out the light. She was apologetic and sweet and said, "Mom, we forgot to say family prayers." "Alright Anna, will you say them?" She went on to say a nice prayer. At one point she said, "Please help us remember to talk nicely to each other until (a pause as she thinks about how to finish this phrase she has started)... until we die." It sounded funny but it is something we are working on in our house.

Spring Break at Kicking Horse

2011-03-27T21:30:00.000-06:00

We just got home from an incredible weekend at Kickinghorse in Golden, BC. Our kind friends allowed us to use their condo again so headed up with Anna and Cooper this time. It was different from our anniversary weekend in February, but a ton of fun! We played in the hot tub - lots of splashing and Cooper had fun cooling off in the big pile of snow nearby.

We enjoyed taking the gondola up to the top of the mountain and having lunch at the Eagle's Eye Restaurant. The kids were a little nervous when we first climbed into the gondola car, but Cooper was hoping we could head back up at dinner time.

The morning ski lessons were full but dad did a great job teaching the kids. They learned how to "make a pizza" to slow down and stop. They figured out how to get up when they fell down and walk sideways when they needed to go uphill. They even learned how to shift their weight to change directions.

They enjoyed going up the magic carpet and got pretty good at getting on and off. Spencer and I were very grateful for the magic carpet. It was turned off for a while after lunch and we pushed the kids up the hill lots of time before we ran out of steam and Spencer convinced someone to turn it back on.

Cooper and Anna got pretty comfortable pretty fast and learned some fun tricks. Changing directions. Ducking.

And jumping.

Shortly after this video, Cooper said this little hill was kind of boring and asked Spencer to take him up the chairlift. The big hills were still a little steep for our little people, but Spencer said he would carry the kids' skis and they could hike a ways up a neighbouring hill that was a happy medium between the magic carpet hill and the big hills. Spencer was up top with the kids and I was waiting to help at the bottom. The plan was for the kids to snow plow down towards me. Cooper went first. He lined his skis up parallel, tucked nice and low and shot down the hill straight at me. Spencer and I yelled PIZZA in unison but to no avail. I panicked, not knowing what to do. If I didn't stop him, he would crash into a building a little way past me, but how would I stop him without doing damage to the two of us. I had little choice, I bent my legs and prepared to tackle my little speed demon. I caught him under the arms and took him down. He looked at me in shock. "Mom, you hurt my head." Sorry, dude! But he obviously was not hurt that badly because he begged his dad for a second turn. This time, I made Spencer do the bottom of the hill catch. (He did much better, catching Cooper and swinging him around in a circle instead of knocking him down and giving him a mild concussion!) Anna did great. She was quite controlled - snowplowing and changing direction to slow herself down.

It was a great weekend. We enjoyed a couple nice restaurant meals and some good laughs. A nice change of pace. Spencer was able to squeeze in a couple runs down the hill and I was able to do a quick one Saturday afternoon. I am still a little leary and it was my first solo run but I had fun. We missed Clare while we were away but were glad to hear she had fun at home with Elaine. She even took a trip to Wal-Mart and sat up like a big girl in the front part of the cart for the first time. She giggled and thought she was pretty amazing. She is! It was a great start to our spring break!

Our Little Twiggy

2011-03-20T21:03:00.001-06:00

Some weeks are really good and others are a bit more tough. For the past week Clare has just been off. She has had a horrible yeast infection on her tummy around her g-tube and has just been really unhappy. We really struggle when she gets like this. She doesn't have words, so the only way she can communicate to us when she is frustrated or hurting is to cry and yell. Which she has done this week. A lot. We aren't ever really sure how to handle it. We know she needs lots of love and requires lots of help, but we don't want her to lose the independence she has - she can do some things herself and she needs to be ok on her own sometimes. But it is hard on all of us to listen to the continuous yell in the background. So on weeks like this we give in to her a lot and wonder if that makes the problem worse.

Clare did get her casts off on Monday. She has great range and increased flexibility as a result of the botox and casting but she has lost a lot of muscle mass in her calves. When she does her supported walking, she really collapses and needs lots of encouragement to try to help support her body weight. The therapist says it will take at least as long as she was casted and her muscles were weakening for them to rebuild - 6 weeks. She is also hypersensitive to touch on her calves and feet because she hasn't had any sensory input for so long.

She IS enjoying the water again! She has had lots of baths and was able to go swimming twice this week. So fun! It is neat to watch Clare navigate through the water with her life jacket on. She has quickly learned how to twist her body and kick her legs to get where she wants to go.

All the kids love to lay across the lazy boy and watch TV. Clare was just chilling here.

Aunt Tori turned eighteen this week. Cooper and Anna helped me make Tori a car for her 18th birthday and we went and surprised her with a little impromptu party at Brandy's house. We love hanging with our cousins and have so much fun with Tori.

Anna had her first grade one field trip this week. They went to Heritage Park and spent the afternoon in the one room school house reliving a typical day for a pioneer child. Anna really liked dressing up and packing an "old-fashioned" lunch in a basket. She is so excited about learning!

Can't Wait!

2011-03-13T20:53:00.001-06:00

I can't believe it! Only one sleep to go until Clare gets her casts off. Spencer was carrying her to bed one night last week and she pointed in the bathroom, then at the tub, then at the taps. That girl knows what she wants. She doesn't love being told no, though. Tomorrow night, Clare, you are due for a nice long soak in the tub!

Clare is waking up around 6 am these days. You know she is awake because you can hear her thumping the head of her crib with the back of her left hand. Loud. I usually get up and close everyone's doors so we can all sleep or relax in bed a little bit longer while she is playing happily in her crib. Often the thumping wakes up Anna and Cooper. Those two quietly slip out of their beds and into Clare's. Many mornings I go in to Clare's room to get her up and am surprised by three happy faces. Nice way to wake up!

Just a random thought I had passing a young teenage boy this week. Do boys with Bieber hairdo's get a kink in their neck from holding their heads tipped to the side? Just wondering.

Cold Days

2011-03-06T20:53:00.001-07:00

What to do with MORE cold, snowy days? Well, there is always therapy. Clare is doing really well with her casts. With help she is walking up the stairs and around the house. It is another way for her to communicate what she wants as we let her "steer" our walking to where she wants to go - whether it is to her favorite toy, to sit in her chair or to her crib at night because she is so tired.

She got her last set of casts this week. These ones are neon green with blue dog footprints on the boot part of her cast. She looks pretty cute.

Anna and Cooper had a couple of really fun days building some awesome forts on the stairs. They tied a skipping rope across the banisters and then hung blankets on the rope. They filled it with toys, games and coloring stuff and played happily for hours.

Wrestling and "gun shows" are always a fun pastime when locked inside.

And play dates with friends and cousins helps chase away the cabin fever.

Our lesson in Relief Society today was very timely. It was based on a talk by Pres. Uchtdorf, "Of Things That Matter Most". Sometimes I feel overwhelmed by the many things that need to be done each day. Two quotes that really spoke to me were :

"There is a beauty and clarity that comes from simplicity that we sometimes do not appreciate in our thirst for intricate solutions."

"If life and its rushed pace and many stresses have made it difficult for you to feel like rejoicing, then perhaps now is a good time to refocus on what matters most."

I realize I need to simplify, try to decide what "matters most" and then pray for the strength to be "equal to the task". Our kids are such examples of the way we should rejoice. There was a magical moment last week when Clare was working with one of her aids and there was nothing that I HAD to do, so Cooper and I grabbed a couple games, climbed onto my bed and played. We enjoyed a couple rounds of Guess Who and Candyland then Cooper said he wanted to throw the cards and game pieces in the air. My initial response was, "No, we don't want to wreck the cards - let's play the right way and follow the rules." But I realized the cards would be fine and the point of a game is to have fun. So we let the cards rain down on our heads and used the box for a helmet as we tried to bonk each other with the hard game characters. Cooper was belly laughing and soon I joined in. It was probably the most fun I have had playing Candyland. In that moment we were rejoicing as we played and laughed together. Then today I was cuddling Clare in the lazyboy and she was reaching for one of her favorite toys on the ground. I leaned over with her so she could grab it. While she was bent over she saw something else that caught her eye, grabbed it instead and then couldn't stop giggling at her very tricky maneuver. We just laughed and nuzzled. Another moment to rejoice. Yesterday I had the priveledge to go out for lunch with a few of the moms I have met through various appointments I've attended with Clare. They all have a son or daughter with special needs similar to Clare. They are amazing women. I love getting together with them - learning from them and laughing with them. And I rejoiced yet again. Yes, there is much to do each day and many challenging moments, but there are at least as many of the magical moments. So I need to remember to notice and focus on them!

February Fun

2011-02-27T21:33:00.001-07:00

Another great week! I love repeating THAT sentence! We enjoyed the long weekend and everyone had fun on Monday - although not all together as a family. Dad got the chance to go ATV-ing so Aunt Tori came in to play with Clare while I took the older kids to a movie. The theatre was insane. We had planned to go to Tangled but it was sold out over 30 minutes before it started. So we got tickets for Gnomeo and Juliet then wandered around Chinook Mall for an hour waiting to get in line for the show. The kids had fun exploring the kids stores - Build a Bear and the Lego Store. Then we grabbed a notepad so we could play X & O's to pass the time waiting for the movie to start. I was worried the kids would get antsy - but we actually had a great time visiting and hanging out places we don't normally go.

The next day, dad surprised us with tickets to the Flames game (thanks Damon!) It was Anna and Cooper's first time going and they had a blast! They loved the treats, cheering, music and games/prizes during time outs. Cooper was totally enthralled by it all and at one point asked Spencer if the referees hands get cold when he noticed them shaking them after touching the puck.

Clare had a busy week with lots of therapy and appointments - but they were very productive. The most exciting one was the school tour. We have decided to go with GRIT which is a home-based program. She has an aid who comes to our home four days a week to work on a program set up in collaboration between a teacher, phsyio, speech and occupational therapist and our family. We have had such a wonderful feeling about the people we have met through the program and I was very impressed with the equipment and set up of the school when we went for a class this week. Clare can go to the facility several times a month. They have a beautiful multisensory room with many stimulating, development promoting pieces of equipment. There were swings, special trampolines and many other sitting, standing and walking aids that looked great for Clare. Cooper, Clare, Elaine and I all loved being there. We are very excited for Clare to be involved with such an amazing program next year.

She is having a great time exploring apps on the I-pad with her vision OT. Every time I tell dad about a new application Clare's enjoyed, I can see him itching to buy one. For her or himself? (just joking!)

Clare is worn out from all the phsysio, multisensory play and music therapy this week. She fell asleep in the chair listening to the music therapist at the Rotary Flames House this week.

It's lucky number 13 for Spencer and I. Monday is our anniversary and I DID feel very lucky when he came home earlier this month announcing his plans to take me away for a ski weekend to celebrate it. He even arranged the babysitting. It was an incredible weekend. We had such a good time hanging out., laughing, eating good food and skiing. It is such a recharge to get away and just enjoy being together. We have so much fun together! He really is my best friend.

I haven't skiied since grade nine - so I was a little nervous, but Spencer is so supportive and confident in me that it rubbed off. He got me geared up and we headed up the hill. We pushed off down the first run and it felt pretty natural. I was definitely a beginner, but I didn't have to snowplow - so that made me happy. I got a little out of control a few times - but no crashes. After a few runs we went to the top of the ski hill and made our way down. I was even able to manage an intermediate run without too much trouble. Skiing is a ton of fun!

Spencer has skiied a lot, but has only started snowboarding the last few years, so he wasn't too bored hanging out on the easier runs with me. We had an awesome time! Thanks so much to those friends and family members who helped make our amazing anniversary get-a-way possible!

Pretty Good Week

2011-02-20T21:19:00.003-07:00

It's been a good week. Valentine's was a lot of fun. Spencer and I have never made too big of a deal about Valentine's Day. Our anniversary is only two weeks later, and we'd rather spend time and do thoughtful things for each other when it isn't so busy/expensive. But this year, Spencer thought it would be fun to have a 'family love' celebration. So, Cooper and I spent the morning making chains out of Valentine colors, ribbons of hearts to write love notes for each other (thanks for the idea Auntie Jenn) and decorating napkins. It was fun and nice to reflect on how grateful we are for each other. Cooper gave me a good laugh. I asked him if he wanted to draw pictures for everyone or if he wanted me to write messages for him. He wanted me to write. He started with dad - saying dad was handsome and the best fighter. What more could you want in a dad!

Clare has had a better week. When she was discharged from the hospital she was on 1 litre of oxygen. In the past it has taken her several weeks to get back to room air and no longer need to wear her prongs all day. On Monday though, she was breathing really well and her activity level was very similar to before she got sick. When her respiratory therapist came to check on her later that afternoon, I asked her to check her blood oxygen levels. She did awesome. The therapist was comfortable taking her off daytime oxygen. I was so happy. It is so much easier not using oxygen during the day. Plus, it shows me how much stronger and healthier her lungs are than they were a year ago when it took so much longer to recover from a cold. Go Clare! Keep healing and getting better!

Clare got her second set of casts this week. She was incredibly upset for the first half hour while they took the old casts off. In fact, she was so upset that the therapist suggested we admit her to day surgery and sedate her. I remembered how much she enjoyed watching the credits on the VCR during her first appointment so I asked if we could bring it in. As soon as the TV was on, I wheeled it right up beside the bed and Clare instantly settled. She licked and touched the screen and let the two women who were working on her do whatever they wanted. She had her music and her rolling credits - she was fine. I was so grateful she settled down. Clare has so many yucky procedure done regularly- g-tube changes, heavy scaling at the dentist, casting, botox injections, etc - that I worry it is unhealthy to sedate for them all. So it is nice when we find something other than drugs to help her relax!

The new casts are pretty adorable. She ended up with one purple one and the other pink. Then the tech wrapped girlie camo print around the boot part. It looks like she has designer casts!

With Clare's botox treatments comes a very intensive physiotherapy program. Clare goes to the hospital to see a physiotherapist weekly for about 16 weeks over and above the other therapists she has seen since she was born. The goal is to really concentrate on stretching and improving other functional movements while the botox is in effect making movement easier without her muscle tone and tightness impeding her. I was given a workbook to document the stretches and activities we do each day. (Oh goody! More pressure and guilt!) But is has encouraged me to really pay attention to watch she does and push her to try new things. On Saturday, after I finished her stretches I stood her up beside the TV where the stand is at the right level for her to support herself. She was able to stand INDEPENDENTLY! It was only for 10 sec. And I had to position her legs to get optimal balance and her knees are at a wonky angle. But it is a start! She is doing something we were told she may never do. Things like this make us so hopeful for what the future may hold!

Then this morning, I set her down with her favorite toys and she seemed really interested in sitting up. She has been able to sit independently for a long time now, but prefers lying down. It is sometimes hard to motivate her to sit up. I glanced at the clock when she started playing. She sat up all by herself for EIGHT minutes this morning. I was so proud of her. She is getting so strong.

Clare is also becoming increasingly aware of her environment and is excited to explore it. This is a big improvement for her as she has tended to stick to those things she knows. She has discovered the silverware drawer. She loves it. It is noisy and means the silverware baskets in the dishwasher are full for every load, but she is really happy!

Hoping for another great week!

Parties and Homecomings

2011-02-13T22:10:00.002-07:00

It has been a busy few days. A few weeks ago we sent out the invitations for Anna's party so when Clare was admitted to the hospital, Clare's careworker, Elaine, offered to stay with Clare on Friday night so I could come home and help Anna get ready for her party. It was nice to take a break from the hospital but we were sad Clare couldn't join us. We had fun celebrating Anna's special day ALL weekend! On Friday night we took Anna out for a birthday dinner. She chose East Side Mario's because one of her friends told her they had a treasure chest where you got to pick your own toy. What a draw! Anna and Cooper were also pretty impressed with the all-you-can-eat bread and salad and the three little mini ice cream cones.

Saturday was Anna's birthday party. She played a big role in planning it. She chose the theme - a pj party and planned the games, crafts and treats. (On a funny side note - Anna has a very set idea on how we should decorate for parties. Since she turned 4 we have decorated with the same colored streamers strung from the ceiling with a bunch of balloons in the middle and streamers dangling into the doorway. So I had to make a quick stop at Dollarama on my way home from the hospital. I was trying to hurry so I could get home to see the family. I bustled through the isles snatching the items I needed. When I got home and Anna opened the "Happy Birthday" banner, I saw I had grabbed the wrong one. So we celebrated her birthday multiculturally with "Bonne Fete" decorating the wall. Sleep deprivation and trying to be quick is a bad combination!) The girls started off decorating pillow cases. Some of the girls spent half an hour drawing the pictures!

They played lots of slumber related games: musical pillowcases, sleeping bag relays, limbo, balloon stomp and of course, pillowcase races!

Anna was spoiled with lots of thoughtful gifts from her friends.

She made sure to thank them all as only a nearly seven year old can.

Instead of birthday cake, Anna wanted to make cookie pizzas decorated with lots of candy. They seemed to be a hit with all the kids.

It was a great party! Anna loved it.

I left right after the last mom came to pick up Clare from the hospital. Although she still needed oxygen 24 hours a day, increased suctioning and a couple oral antibiotics, we were comfortable providing all these things from home. We have learned to advocate for an earlier discharge as waiting for Clare to return to pre-admission oxygen requirements results in LONG hospital stays. (Anna is such a good girl and a huge help. I had tidied up a bit as the party was going on - but the house still looked like it had been full of 10 little girls. When I got home Anna had cleared off the table, gathered all her gifts and even swept the floor. She's pretty amazing!)

It was pretty sweet when I got to the hospital, Clare saw me coming from down the hall and started waving her arms and jabbering excitedly. Then she reached for me and kept pulling me in for big hugs. I could hardly hear what the doctor was trying to tell me because Clare kept cooing in my ear. Moments like that really make being a mom worth it. As I loaded Clare up in her chair getting ready to go, she kept squealing and pointing excitedly at the door. She knows what she wants and can effectively communicate!

We always have a bit of a honeymoon when we get home from the hospital. Clare is so happy to be free from the confinement of her hospital room that she giggles and is so content to just be in her own space. It is always such a blessing to be home.

On Sunday, Anna's actual birthday, we celebrated with a meal of her choice, chicken Katsu and iced brownies. After loading up with her third helping of dinner she said, "I am so full but it tastes so good!" It was a fun day with lots of silliness. Anna even found time to give Dad and Cooper a little dance lesson.

Clare has adjusted well to her casts. The biggest challenge seems to be the loss of bathing and swimming. We have had to resort to the sink for baths. Works ok when they are a few months old but it is a little challenging when you have a very tall three year old!

Our week ended on a better note, but I am ready for things to slow down a little bit. I'm not sure if it will happen, though!

Hello, Again, Hello

2011-02-09T17:39:00.001-07:00

The past week has been a tough one for Clare. She has been battling a cold - but even on antibiotics the cold seems to be winning. The fever has persisted and she has had to work harder and harder to breathe. So on Tuesday, we decided it was time to take her to the Children's Hospital. Her oxygen saturation was down when we got to the ER triage desk so they sent her right back to an exam room. Within a couple hours we had seen a doc and had a chest x-ray. They tried to load her with ventolin to help ease her breathing but it didn't seem to make a big difference and we had to turn her oxygen up even higher to keep her blood saturation at an acceptable level. They decided to admit her just before dinner and we were up in our room just after Clare's bedtime. She has RSV with a secondary bacterial pneumonia. The are treating her with a couple IV antibiotics, oral steroids for her lungs, lots of ventolin and oxygen. The night was hard - with lots of visits by the nurse to check her vitals and ventolin being given at least every four hours. The days are also hard. Clare feels pretty crummy and bored. She just keeps pointing to the door and yelling at me to take her out. But she got a good nap today and we have several of her favorite toys from home, a couple Baby Einstein movies and a helium balloon from some sweet ladies at Spencer's office, so we are making the best of it and hoping to get out in a few days. We are thankful for the very kind nurses at the Children's and also for the doctor's who take the parent's thoughts and concerns so seriously. It is empowering to have a voice in Clare's care. Thanks also to those people who are helping us take care of Anna and Cooper while Spencer is at work.