Our Clairey-bear is 4!

It's Claire's birthday today. In some ways I can't believe it's gone so fast, and in other ways I can't believe how many things she's had to go through already in her short life. I wanted to tell her story here.

Day One

We were so excited to learn that we were going to be having our first baby. We'd been married a year and a half. It felt like we had waited forever because I had baby fever so badly. I felt really good and was finishing a semester at the U of A to try and finish my BYU degree. Our first ultrasound was a basic one, just to check how far along I was. Our second ultrasound at about 19 weeks was a little different. The technician was acting strange and said she had to go check with the doctor about something and left me in that little room. I was scared to death. Then they wanted to bring Ryan in before they talked to me so I felt like something was horribly wrong. What they told us was that our baby's head was over two weeks behind in growth than the rest of the body. They couldn't tell us what that meant, or if it meant anything at all. I came away convinced that it must just be a baby with a small head, no problem. But the lingering fears were still there, we still prayed so hard for everything to be okay, I still felt my stomach clench in fear whenever I felt the baby wasn't moving enough.

I wore this shirt when I was a baby - it is very fitting, for both of us.

My labour started with my water breaking at home. Ryan was tutoring French so I called him and he rushed home quickly. Then, since nothing was happening, we ordered pizza and rented a movie. We decided to go to the hospital at about 11pm. Since I was on "the drip" all night with nothing happening, they did a c-section the next day, April 14th. Claire was 8pounds 10 ounces and she was purple and screaming when she came out. It was such an overwhelming feeling, I couldn't believe it. I was so amazed at this little person and couldn't believe that just a moment ago she had been inside of me.

Claire at 2 months - good ol' Canadian Baby Pictures

They did all the normal tests and everything looked fine. Maybe her head looked small to other people, but to us she was perfect. She had one floppy ear that had been folded over in utero and it looked so cute. My biggest worry at the time was that her ear might stay that way. Claire was very fussy to begin with and we had to supplement her feedings at first with little medicine cups of formula.

Her first set of pigtails

Those first few months are honestly a blur. There was a lot of crying, I spent so many nights atching movies and walking the floor with her. I couldn't sooth her, I couldn't figure how to make her feel better. She slept almost all day, but was up all night. They said it was colic - we don't really know if that was it, or if it was something more. I didn't go out a lot because if she started crying out in public, the only thing that calmed her down was nursing and even that was hit or miss. I also just couldn't get the hang of breastfeeding in public.

We were feeling like everything was fine. We were rationalizing her inability to hold her weight on her legs or to hold her head up well because all kids develop at different rates. Her constantly crossed eyes were a concern but we thought the opthamologist would fix it. It really didn't click to me that anything unusual was happening until we saw her pediatrician at about 4 months. She suggested that things were not progressing the way that they should and ordered an MRI to see if her small head size was indicative of a larger problem. I was so angry at that doctor. I couldn't believe she would say such a thing to me about my precious daughter. Nothing was wrong.

We propped her up with several pillows for this picture,
but she sat up quite well.

So after the MRI we actually switched doctors, even though she did the right thing in telling us, it was just too much all at once. I'm glad now that she didn't hold back because it made me realize that something was going on. The MRI was so scary, we couldn't feed her all night and had to be at the hospital at 6am then they had to take her to a backroom and sedate her. Ryan had to go with her because I couldn't do it. I had to go in afterwards to help wake her up and I was so scared to hold this unresponsive, still half-sedated baby in my arms. I had no idea what was going on but I knew this wasn't how it was supposed to go. This wasn't how I pictured things happening.

Madeline - 1 week old, Claire - 2 years old

The MRI showed no abnormalities, but they said that since she was still growing it was difficult to say exactly. We have learned that it is probably the back of her brain that is affected because of her cortical visual impairment diagnosis. They may do another MRI in the future. The visual assessment came next, at about 9 months. This was the first in many diagnoses that we had to hear about Claire. It got easier to control my emotions but it just feels like someone is punching you in the stomach to hear these things about your little baby.

Claire loves to swing!

We had so much trouble feeding Claire after she started getting teeth because she was nursing but would automatically bite me every time I tried to feed her. She wouldn't take a bottle so we had to squirt formula into her mouth with a syringe because that was the only way we could get it into her. She ate her rice cereal but feeding has since been a huge issue. As she grew and needed more food, the feeding times became longer and longer. I felt like I couldn't take her anywhere or do anything. I spent a lot of time with her at home.


Just before she turned one, we finally got some good news. Her hearing assessment was normal. We had to take her to the hospital sleepy, but not asleep. They needed her to fall asleep during the test. Easier said than done...but it actually happened and they got the results they needed.


Shortly after that we noticed that she would drift off, stare off into space and be non-responsive. We had no idea what was going on. No one had ever mentioned the possibility of seizures to us. We were referred to the Glenrose hospital to see Dr. Andersen and he was the first person to actually say the words "seizure" and "cerebral palsy" to us. I couldn't believe my ears. I still felt like she would catch up, that she wasn't so far behind, that all kids develop in their own way and in their own time. That was a turning point for me. I really grieved after that appointment. I feel like, up until that time, I was in denial and this made it so real for me.

Claire is a professional pouter.

Seizures have been so scary for us. I feel so helpless when they happen and I can see my scared little girl, not knowing what is happening and all I can do is hold her and talk to her. They often happen at night or right when she wakes up and although her medication is controlling them now, they still happen every once and awhile.


Then began our struggle with finding the proper seizure medication for her. We had to do several EEG tests and discussions with the neurologist and weaning her off one medication while starting another one. Then her feeding became a real problem and we had the struggle of meeting with the Glenrose feeding team who wanted her to eat barium-laced oatmeal while sitting perfectly still for a video x-ray and offered us no help.

Claire is doing so well in her walker, she can move all around the kitchen.

Then we moved onto the GI clinic and the feeding tube option with her day-surgery that turned into a week-long stay at the hospital because of infection and complications. She got little blisters on her hand where they had the IV splint, she cried so much in the hospital and I stayed there, by her side the whole time, reading stories and watching Treehouse and trying to get her to eat and learning this new tube-feeding skill that seemed so scary but has become such a blessing.

I love when she gets so excited!

Then we've had our journey through the Home Care PT/OT, Edmonton Early intervention program, Glenrose 123Go program and so many different people coming in and out of our home, all offering judgments on what we're doing and giving us lists of therapies, strategies and techniques for improving Claire's abilities. It's all been very overwhelming and sometimes I just felt like telling everyone to get lost so I can just be Claire's mom instead of nurse, caregiver and therapist.

We've had so many pieces of specialized equipment from a bath seat, to a feeder chair with an adapted table, a corner seat, a walker, a high chair and now an adapted eating chair, a standing frame and a wheelchair. It seems like although there is a lot of good equipment that nothing is really built just for Claire. I've had to sew so many extra straps and pads and other things to accomodate her in each piece of equipment.

Shades Layton

It's been a real challenge to just enjoy Claire because we've had to deal with so many appointments, so many doctors, so many tests, so many assessments and explanations and research, etc. sometimes I feel like I'm really just getting to know her now that things have kind of calmed down.

After various meetings with neurologists, doctors and physiatrists we now have a compound diagnosis which includes all or any of the following: global developmental delay and movement disorder (the vague diagnosis), a variant of Rett syndrome characterized by a deletion on her 14th chromosome of the FOXG1 gene (the technical diagnosis) and cerebral palsy (based on observation). Depending on who we are talking to for educational coding or funding or just in casual conversation we have to decide which one we go with. It's all very confusing and I really don't care what name is put on it...I just hate not knowing what's coming in the future and no one can really tell us that. We're learning as we go.

When Claire is tired, she can sleep through anything and can fall asleep anywhere.

Through this whole explanation I haven't really said much about Claire. All that stuff has been dealing with the merely physical aspect of who she is. It is a big part of our life with her though. It's been tricky to get past all those struggles and see her for who she truly is. She has been so patient with us, me especially, as we've made our way through all of this. I know it's not over, we still don't really know what is to come and how we'll make it through, but I know that she is a strong person.

Claire meeting the horses at Hearts and Hooves.

I know that I love her and that God loves her. I know that she was sent to our family to make us better people and to challenge us to see life differently. I know that she forgives me for my crying and for my being upset with her when she can't help throwing up or being upset or other things. I think she deserves a better mom sometimes.


My heart is so full of love for her today. I know that she and Madeline have such a special connection and theirs will be a special relationship. I am so thankful for Claire's sweet spirit in our family, for her genuine enjoyment of music and silly sounds and the laughter of others.

Super model pose

I can't believe that 4 years have come and gone. She's going to preschool in the fall! I still call her my baby. I want her to know that I love her and that she is challenging me to be a better person everyday. I think about the resurrection and how I will see her walk, how I will hear her speak and be able to get to know her better and it sometimes makes me sad, like I am missing out on all of that here. But she has taught me how to rejoice over the little things like when she swallows a mouthful of food or holds a toy or sits on her own for a few seconds or even minutes.



So, today I want to say, HAPPY BIRTHDAY CLAIREY BEARY! We all love you so much!

Claire's hair is the stuff of legends


Tippy Tipperson