The only way you can truly understand what it's like to send a kid with Mito to school is to have a kid with Mito going to school. There are tons and tons of "illnesses" or "conditions" that will make a child have trouble at school and I'm not discounting any of those. A Mito kid is different b/c they can be fine right now and be in the hospital by bedtime or be fatigued and sick when they wake up and by afternoon they are up, running, playing and laughing. They are unpredictable. When your child's health is unpredictable and you are sending them into an unpredictable situation with people who haven't spent the last 5 years watching every move they make, it's scary. I can tell you before Aly vomits and have a bucket to her in time, I can tell you why she is whining and clutching her belly, I can tell you why her cheeks are flaming red and if it's something to worry about, I can tell you why she is ducking her head and not making eye contact, I can watch her walk or run and tell you if she's too tired to walk anymore. Sure the teachers, counselors, assistants, etc all have a copy of the Individualized Education Plan and her Health Plan written by her doctor but have they read it? If they have read it, how many have they read this year and will they remember that the little, curly headed, blonde girl on the playground is the one that might be crashed in the corner if she gets too tired or hot? Do they care that because of getting overheated (along with many other things) that she will have stress on her metabolic system and cause more of her cells to die, which in turn causes her organs to die, which in turn causes...I'm not going there. I am her biggest advocate but I cannot be her biggest enabler. I've spent countless hours and days with her in a hospital bed, holding her down while she screams for whatever is they are doing to her, watched her be rolled away on a guerney to whatever surgery is that month but there comes a time when I have to let go and let her grow up. I'm happy that she's growing up, she's happy that she's growing up. This past year has been a relatively good year, much better than the past 4 for sure. She's stronger mentally and physically than she's ever been. I have to have trust and have faith that all is well and send her into the big world of school. She will have so much fun, meet so many new friends and make memories. If she is able and capable to do that then why take that away from her.
She is smart, outgoing (eventually) and friendly. She may be behind in her academics a little bit but after what she's been through it's expected. She is able to learn and learns fast. I pray (and pray hard) that she gets a teacher that will help and not hinder her. Her preschool experience was beyond wonderful, I never worried a single day about her. I knew she was in completely capable hands and that she was monitored every minute she was in that building. I would love to have the same confidence when I send her to Kindergarten but that's just not going to happen.
Someone (who's qualified medical opinion I trust completely) said to me the the other day "the kids that are pushed are the kids who thrive". I was having a moment of "do I push her too much? Do I not protect her enough?" Well, Aly is thriving right now and I definitely push her. There have been times when she was not thriving and there will most likely be times in the future when she won't but right now she is. I won't compromise her health by any means but if she is capable of being in a dance recital then I'll let her, if she is capable of going to Holiday World and riding rides then I'll let her (with heat precautions in action of course), if she wants to go to Gattitown I'll let her (even if she has to wear gloves b/c of germs). I cannot and will not live in fear of "what can happen".
All that being said, I've prayed alot of prayers about this school thing. I've always prided myself in my ability to NOT worry. My philosophy (on life in general not just Aly) is that I can't change it, I'm not in control of it so why worry about it? I contribute that philosophy to losing both my parents. God has a plan for everyone (whether you believe it or not doesn't change it), God's plan will come to pass whether we worry, cry, pray, scream, yell or have peace. I choose to have peace. That doesn't mean that worry or fear doesn't creep into my mind but usually when it does He does something small to show me that He's in charge, not me. When I signed Aly up for Kindergarten and I was worried and asking questions (that's not the time for questions about IEPs by the way) the person who happened to be sitting at the signup table that day was the Special Education teacher who was more than willing to answer some questions. Now that I'm worried about Aly's IEP (I'm not happy with it), Scotty hears from a family friend who happens to be good friends with Aly's new principal (follow that?) that she's been talking to the principal about Aly and showing her Aly's pictures and videos. The principal says she's gotten emails about Aly and that's she's growing attached to her already. To me that shows God's favor in Aly's life. He's proving to me (again) that although I have to go through the motions and fight for my daughter in the school system, He's going to place the people and move the pieces. For me, that is THE reason not to worry.
