Sending my kids off to kindergarten has been a milestone I have thought about since the day I brought them home from the hospital. I know that's odd to think so far ahead. But I clearly remember walking through my front door with my first child and immediately saying to my husband, "can you believe in just 5 years we will be registering him for kindergarten?!" And while I've had those typical mom thoughts of wanting to turn back time, and keep them young, sending my kids to school, never stirred up such feelings of anxiety and dread, as they do right now.
The most obvious problem, and maybe other parents caring for kids with medical issues can relate to this. Separation anxiety. Yes, I am attached to my son. Attached in ways, I'm not to his older brothers, who have not faced similarly terrifying health concerns. It's not that I can't leave his side. I've been food shopping without him, ran errands without him, been to my own doctor appointments without him. No problem. But we're talking full day kindergarten here. 6 hours straight, away from him with high potential for injury, and pain induced episodes. There's the lunch room, recess, gym class, free time in the classroom, not to mention just tripping and falling. Its hard when the world around them is their worst enemy. It's hard to let go and hand his care over to other people, when I have been the one doing it all these years. It's hard knowing that if something should happen, I will not be the one comforting him through spells and seizures, I will not be the first person he sees when he regains consciousness. This tears me apart.
Then my mind starts to spiral. What if he loses trust in me because I'm not there? What if he feels I left him when he needed me? I know when I say these things out loud, or type them in this post it sounds ridiculous. I also know that if another parent came to me upset over these same things, I would tell them that after all the years they have been by their child's side, through the doctor appointments, the testing, and the spells, the value of that can not be taken away by simply going to kidnergarten. Nothing takes away from all the love and care they provided for their child. The bond that formed through all of that, is unbreakable. And I truly believe that. So why isn't that enough to get me through these last few weeks of summer vacation leading up to that first day of kindergarten?
I've done what I can to rectify these feelings. I've met with the principal & staff, and been in contact with the principal throughout the summer in regards to Brayden's condition. We've implemented an action plan if a spell should occur, they will have a 504 plan in place starting on the first day of school, with a para professional to shadow him throughout the day. His classroom will be located right near the nurses office, it will be air conditioned. His schedule is being planned to incorporate snacks and down time so as not to tire him out quickly, the list goes on including a plan for indoor recess on hot days. The steps the school has taken to ensure his safety and well being are beyond anything I could have imagined. So why is this still too hard?
Easy. It's hard because he is my child. It's hard because I am supposed to protect him. It's hard because IBHS is not well known, or understood. It's hard because I can't say, "Oh, here is this magic pill you can give him to ensure he won't struggle to breathe and have seizures while he's in your care". There are so many reasons why this is hard for me. All I ask is that its harder for me than it is for him. Because, I can handle the stress and anxiety as long as I know, he doesn't have to suffer that on top of the IBHS.
~Jennifer
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