We are a medical family but we are lucky. Even though we have been through a lot at the end of the day we are still holding our son. We get to bring him home, sometimes it takes a while but he gets to come home. So many of the families we have met are not so fortunate. So many parents have had to say goodbye to their babies too soon.
We are lucky. Our son, though he has a life-altering condition, is not developmentally delayed. He may not be ready for school (in fact we have been discussing home-schooling or at least exploring the possibility of an aide if he attends school) but he is exactly where he should be developmentally. We do not have to see PT, OT, no early intervention clinic, no speech therapy. He knows his letters, his numbers, his colours, etc. He is learning to dress himself. He is starting to recognize letter sounds and combinations. He is potty trained. So many of the families we have met do not have this. So many kids have to go through these additional therapies on top of dealing with all the appointments for their illness.
My son has an invisible illness. Unless he is actively seizing you wouldn't know anything was wrong. Even when he does have seizures they are like the ones you see on tv so many people do not recognize it as a seizure. When he had one in the library a few weeks ago I heard a child ask his mom, "Mommy what is wrong with that boy." The mother's response, "Oh he is just having a tantrum." It was in that moment that I realized what other people see.
When Isaac is cranky and not listening, people simply see a defiant toddler. They see me give in to his tantrums, he doesn't get a spank or a time out. I give him ipad time, read him books, or give him a new craft to do. It isn't that he is being naughty (although sometimes that is the case) it is often that he has been having multiple absence type seizures. His little brain is overloaded, his body is exhausted, and he feels like crap. He needs some quiet, some calm, some rest. When he falls from a seizure and has his eyes, tongue, and head deviate to the right; it might look like he is just having a fit. Especially when I get down and roll him on his side, often talking to him and begging him to stop. When we attended a church event this past weekend, people from our congregation saw Isaac. The most common comment was "He looks ok." Yes he does, his seizures were so out of control this week he ended up in the hospital sedated just a few days before, he doesn't look any different.
This makes it hard, it makes me feel like we are imposters every where we go. I feel like the other medical families see us as "normal." When we present at clinic, or in emerg, or even up on the units they see a healthy, happy kid. It makes me feel like I have no right to be part of their world. I feel like I do not belong with them. I feel like I can not share my woes with them, or cry on their shoulders. So many of them have things so much harder. Yet when we show up at a playgroup, or library time, in swim lessons, or an indoor play area; we are the weird family. Other parents do not want their kids to play with my child who tantrums and misbehaves. They do not want to talk to me, I am the crazy helicopter mom.
So this journey is lonely. I have some really amazing friends and family that have stood by us and I do not mean to discount them. I am lonely. This morning something as simple as Isaac didn't pee, he hadn't peed since yesterday before nap time, it had me spinning in a cloud of anxiety and fear. I know his creatinine had been elevated from his last lab test. I know his kidneys have been working harder since his liver was damaged and any medications he is on are metabolized through his kidneys instead. I also know he had a rough week and maybe just hasn't been eating or drinking enough. So on the one hand I literally thought his kidneys must not functioning properly. On the other I was trying to be logical and talk myself down. I didn't know where to turn. I wanted to run him back to emerg, I wanted to demand tests to check his kidney function. I wanted to cry and curl up back in bed and pretend nothing was wrong. I wanted to check with my group of other medical mamas and see what they would do.
All I can say is... I have never been more grateful to have to clean up pee from the floor.
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