For the most part, we live a normal life, and Williams syndrome is not a daily part of it. In fact, when we initially met with Clare's new ENT and went over her medical history with the nurse and the doctor, I never once stated the words "Williams syndrome." I completely forgot to tell the doctor that's what Clare had and forgot to write it down on any of the medical forms. (As I remarked to Shawn later, the doctor was probably wondering what these parents were so freaked out about with anesthesia!!)
But then there are times when one thing after another reminds me over and over what challenges Clare (and us) face. This time, they came in threes.
It started on Sunday. We had a busy day, including visiting Jamie's new school. Since Jamie's current school ends at kindergarten, we are sending him to a different school come fall. The only thing left to do was to physically visit the new school with Jamie. They had an open house on Sunday afternoon, so we all trooped out in the snow (once again!) to visit. Shawn and I both liked the school, and Jamie is excited to go there next year. (Although I don't think he will know anyone in his actual class, he will know other children that attend the school, so he is excited about that.) We met the first grade teacher, saw the classroom, and explored the rest of the school. I have nothing in general against public schools but our preference is to send our children to a Catholic elementary school if we can afford it, they will get a good education, and we like the staff, teachers, and environment (yes, to all three right now). However, Jamie will have to take a test (called a "readiness test") before he can enter the first grade there. Shawn remarked that he wished Clare could also attend this school, but we know that is a scant possibility. In fact, when researching the local Catholic schools, I had a conversation with the principal of this particular school regarding Clare. She was very forthright (which I appreciated) and told me that the school was not equipped to adequately educate a child with Clare's disabilities. Clare would not necessarily be refused admittance, but they did not have the resources to educate children with special needs. Before Jamie started private preschool, Shawn and I had discussion after discussion regarding school choices for all our children. Part of me really wants them all to be in the same school; but, at the same time, if public school is the only option for Clare, I do not want Jamie to go to public school just because that's where Clare has to go. I prefer sending our children to a Catholic school - our faith is very important to us, and I want my children to have the foundation of a solid Catholic education. So I still personally struggle with the decision we have made to send Jamie, Simon, and all other children to private school while navigating the public school system with Clare. It's easy to second-guess your decisions as parents, especially regarding such important choices as education. I just keep hoping we are doing what's best for everyone.
After the end of this long day, Clare had a meltdown before bedtime. I let the kids choose between a cookie or piece of chocolate for a treat. Jamie chose a cookie and Simon chose chocolate. Clare, however, chose both. When told that was not an option, she lost it. We ended up carrying her upstairs in a full fit of hysterics. She was so upset, she was choking and gagging. I finally was able to get her to settle down by laying her in her bed and rubbing her chest. She threw another one today at Jamie's school because she did not want to leave to go home. It took her most of the 25-minute ride home in the car to calm down. Then we had another one after dinner because she wanted to take a bath right away. I never know what to "blame" her tantrums on. I know she is only 3 1/2 years old. I know she is tired at the end of the day, especially after a long day of school. Clare does not nap anymore, so she does not get the rest I think she needs. She had that nasty stomach virus which threw her off her regular schedule for more than a week, and it was somewhat of an adjustment to go back to school after the weather-extended Christmas break. I know of many children with Williams syndrome who have to go on medication for anxiety, etc. I do not believe in any way that we are at that point with Clare, but it does scare me when she gets so out-of-control, and we struggle to help her regain that control. All I think about is her heart working overtime to pump all that blood! I am not sure what the answer is here, but we keep plugging away.
And, finally, Clare's new speech therapist, Judy, hit us with the startling news that Clare's feeding skills are on the level of a 6-9 month old. We knew Clare had some issues with chewing, but had no idea how bad it really was. Part of me is relieved to hear this because it explains so much about how Clare eats and what she prefers to eat (no more feeling like a bad mom because I let my daughter eat macaroni and cheese, cream cheese wraps, and cheese puffs every single day). But then the other part of me feels like an even worse mom because we've had no clue that Clare's oral skills were so poor. As Judy stated, after Clare's surgery, "we have a lot of work to do." Clare's tongue-tie contributes a lot to her poor skills, but she also does not use her molars to bite or chew. She relies on her front teeth for biting and mashes and "gums" her food, rather than chewing it, before swallowing it. We are still seeing so much progress with Clare's speech after months of working with Judy. (Such as, this is literally word-for-word what Clare yelled down the stairs to Shawn after lunch today - "Daddy, you come back here! I am talking to you!") I am praying we see the same progress in her feeding after the surgery. (And I won't even go into the whole insurance issues of making sure we have some sort of coverage for continued weekly therapy - if you've been there, you know the headache we have ahead of us.)
I had an e-mail conversation with a good friend (whose daughter also has a heart condition and has some other challenges as well) about being selfish. I try to be grateful that all this has nothing to do with her heart and is not a life-or-death situation. But I wish that, for once, everything else would go smoothly as well.