(We live dangerously close to a busy road)
This afternoon I hugged Corrigan’s Early Intervention coordinator and told her how much we appreciated her work with our family. Corrigan is “aging-out” of Infants and Toddlers 0-3 and is moving into extended Early Intervention at the end of this month so today’s visit was the last with our current coordinator.
Big changes are on the horizon for our little guy and it is simultaneously exciting and terrifying. In the fall, Corrigan will slip on a small backpack and step onto a school bus. His developmental delays have qualified him for special education preschool and at the urging of all of his therapists, and the approval of his genetics doctor, he will be attending two days a week.
I can hardly think about it.
We probably haven’t done Corrigan many favors by keeping him pretty isolated these first three years. While typical kids catch 5-7 colds a year, Corrigan has had only one this year. He has never even had a cough. In just 6 weeks it will be two years since Corrigan had his last hyperammonemic event.
Maybe he has been so healthy because of our vigilance about good hygiene. Perhaps it is because all of our friends and family (and therapists) understand the risk of illness for Corrigan and stay away when they are not feeling well or someone they live with is unwell. (By the way, THANK YOU. Thank you so much for being so careful around our boy.) Maybe he has been so healthy because we are a mostly healthy family? Connor has never had a flu and I haven’t had it since I was a teenager. I haven’t had a cold in more than two years and I cannot remember the last time that Connor had so much as a sniffle.
I don’t know why. I know that I am thankful. Grateful beyond words and never take his stability for granted. Just this morning I woke with a start and had Corrigan’s emergency meds on my mind. It has been so long since the hospital had to order those meds mixed. Such a long time since we have smelled the medicine as it dripped into his body, scavenging the rising ammonia from his body. What if the medicine is expired? Does it expire? What if they stopped ordering it since we have not been there in such a long time? How do I find out what I need to know so that I can sleep tonight?
Because as stable as Corrigan has been we are not complacent. Just last weekend Corrigan slept through the night, until nearly 8am actually, and then at 11am he fell asleep laying on his bedroom floor. We were on-guard the entire day. “Does he look right to you?” Mark would ask me. We watched his every move. We know that despite our very best efforts he will get *citru-sick again.
So why am I sending him school? To a place teeming with viruses? Germs that his immune system has never encountered? Will he get those 5-7 colds in his first month of school? “Yep, he will” his doctor casually remarks “but send him. Send him. Seriously. This is a good thing, Mindy.” That is the consensus, that preschool will be such an opportunity for Corrigan to blossom. That spending time around peers will encourage his speech, build his confidence in his body, develop his social skills and self-esteem. School, on paper, is the best choice, we know it.
There is no reason to panic that any cold will cause him metabolic instability. He has weathered every fever and illness that he has ever had at home, without high ammonia, and we are soothed to know that he is strong and has handled what they told us, in the beginning, were terrible dangers for him. We are watchful, his new school has an RN on staff, the teachers will be well-educated on Corrigan’s needs and how to spot any signs of high ammonia. I will watch as his short little school bus pulls up in front of the house and the aide buckles him into his seat. He won’t cry for me (he has not a lick of “stranger danger”) and he will thrive but I cannot help feeling that things are moving too fast. Preschool?
Today I signed more papers. The transition requires lots of signatures. I met our new coordinator. We talked a little about what to expect over the next few months as we prepare for the Fall. IEP meetings, classroom visits and probably lots more papers to sign and when I waved to them as they left my stomach was clenched.
Things are changing, and I have to face it. No matter his disorder, or his delays..life is calling for Corrigan and he needs to greet it. My baby is going to school, people. I have three months to not think about it. Except you know me, it’ll be the only thing on my mind.
Edited to Add: My friend Katie, another UCD Mama, shared with me this amazing story of a little girl with Primary Immune Deficiency, whose risks from germs and viruses are FAR greater than Corrigan’s, and her family has encouraged her to live VIBRANTLY! Look at Tayla Kelley shining for all of the world to see, in SPITE of her disorder, on Dancing With The Stars..grab a tissue, you might need it! Rock on Tayla!
* “Citru-sick” is our term for when Corrigan’s ammonia rises and he is sick from his disorder(Citrullinemia). It helps to differentiate between “regular” sick (ie; colds, strep throat etc) and sick due to his metabolic disorder (a Urea Cycle Disorder). It is not a real term. Feel free to use it though!