I hesitate to say “hate” because I imagine there are days in our future much more frustrating than yesterday. So I’ll save that for a special occasion. But yesterday, we had a slight crash from the previous day’s mini-success and then had more fall out from our physical therapy appointment. I remember what someone said to me after Colten was born. The gist of it was this:
It will take a while for this to sink in. You know, parents with children that have Down Syndrome seem to grasp the concept of having a child with special needs faster than parents of children with Spina Bifida. I think it’s because it literally stares them in the face every day and there is no escaping it. With Spina Bifida, once you move past the initial surgeries, there’s this period of time, for some of the kids, that they have a pretty normal baby period. Then things start to take shape around a year and all of a sudden, reality sets in.
As I mentioned before, we’re starting to see bowel issues with Colten. Then on Sunday night, we added flax oil to his bottle and it produced amazing results Monday afternoon (I’ll let your imagination fill in the blanks here – or not!). We were ecstatic! Between the flax oil, prune juice ice cubes, and some other assistance from below (to put it nicely), Monday was uplifting in this area. We have been really struggling to keep things moving for Colten and to finally get some relief – for him especially, was incredible! So of course, we gave him more flax oil first thing Tuesday morning in his bottle and waited, anticipating a repeat performance. It didn’t happen. That was discouraging. We were so confident that the flax oil was the cause of the new results – it was the only thing we had changed. And to see it not have any impact at all the next day felt like our balloon got popped. And another bottle with flax oil today produced no extra outcome.
Then Colten had his bi-weekly physical therapy appointment from EarlyOn Tuesday afternoon. He had a great appointment and April was impressed with the strength he is showing in his back, and his smarty-pants way of getting toys to himself (SEE VIDEO HERE). He still isn’t showing a strong “protective extension”, which is when a sitting child tips to the side and puts his arm out to help protect from crashing into the floor. He rolls over when he really wants or needs to, still struggling a little to get his arm out from under him and untangle his legs. He pushes up very well when on his belly and tolerates being there just fine. He sits up straight and tall and reaches for toys, and can even stay seated for a while when one leg is tucked in (this reduces his foundation and is a more unstable position, but will eventually allow him to sit “criss-cross-applesauce” – for the older generations, this is the more appropriate term used now for what you remember as “Indian style”). All was great with his PT appointment so far. Then, after some support in a crawling position that didn’t amount to much movement, she worked on getting him into a weight-bearing position – standing. That didn’t go so well. Most children will push through their legs from a few months old, when their feet touch a hard surface. Then around 6-9 months, they start to stand while being slightly supported or while holding onto something. Colten’s muscle development in his legs, or lack thereof, and his lack of sensation on his feet, make this task difficult. His right foot folds under him – I fear that if he does try to bear weight through that leg, his ankle will snap if he’s not flat on his foot. Even though he does “treadmill walking” on a regular basis, he’s not really walking – he sometimes lifts a leg and puts it in front of him (even more rarely taking weight on that leg), then the legs just drag back behind him.
So the PT mentions the words “standing parapodium” and “orthotics”. For some reason I felt like laughing when she said it. I still don’t know why! But it just sounds like a lot of contraptions for such a little man. So I jotted in my notes for his next clinic appointment at Mott to ask the Physical Medicine & Rehab specialist, Dr. Greene, about what steps we need to be looking at next. After the PT left, I re-read the session notes she left and had myself a little cry. This poor little boy is going to have to work so hard at these things we take for granted. I wish I could make it easier. I wish I could make it go away. I felt so bad that not only could my son not do what his body needed to do (back to the nether regions), he was going to have to struggle to get it to do what he wanted it to do (move). And I felt helpless, defeated, angry that my body caused this in him, sad, and just not ready to deal with all this equipment stuff. When Richard got home that evening, I shared the frustrations with him and we both had a little pity party.
But it’s hard to have a pity party. Some days you want to scream, cry, kick and wake up from a bad dream. Other days you feel like it’s just how it is and this is the new normal and this is ok. But even when we have a little pity party, I feel guilty. There are so many – SO many children out there with medical, emotional, physical or cognitive issues that far exceed what Colten will hopefully ever deal with. How can I feel sorry for us, or for Colten? Really, when looking at the many complications that some kids have, we are lucky. We are lucky he was born full-term. Lucky he’s so happy. Lucky he’s otherwise healthy. Lucky we have family and friends that are interested in learning about his needs and how to help support him. Lucky we have two other boys that adore their little brother. So we push the pity party aside and try to look on the bright side (go ahead, sing the song now). But you know, sometimes we just really dislike Spina Bifida. Good thing we LOVE this kid…