In the spring of 2013, I sat in a circle on the floor at my then 2-yr-old’s preschool. My husband was just to my left. My mother, the preschool director, several teachers, and an endocrine nurse were also there. All eyes were on the nurse. There were no children in sight. They were all in their classrooms having their naps. We sat on the floor in the “big room” with an array of syringes and needles, vials and little square pads mimicking human flesh before us. Our purpose was to train vital preschool staff (and my mother) on how to administer his intramuscular injection of a life-saving steroid if my son ever had a medical emergency on their watch. We were all terrified, every last one of us. We all vocalized our visions of the worst possible scenario and all questioned their ability to follow protocol and administer the drug carefully and successfully should the need arise. We were trusting our fragile baby boy to everyday people with no medical training whatsoever. People who were just like us.
The year that followed was riddled with urgent phone calls from the preschool. We would rush to pick him up, often times administering his IM shot at home an hour or two later when his system finally bottomed out. After a few days in the hospital, we would return him to preschool as if nothing had happened. This had become routine.
About a year later, we all gathered again at the school to teach the staff how to use his feeding tube. New medications were added, dosages were constantly changing, and new rules and restrictions were put into place. With every addition and every change, his school accepted it all. They asked great questions and made every accommodation necessary while still helping him feel like a part of the group. They never complained. They never made us or him feel like a burden. Never.
Early on in this nightmarish journey, we started to notice the director had something develop on her hand. You see, our beloved guy had become tightly wrapped around her little finger, and that bond has lasted for years. Because of that bond, every new fear my husband and I were handed was quickly quieted knowing she was not only overseeing every detail of his care in the classroom; he also spent quite a bit of one-on-one time with her as the need for special care arose on a regular basis for one reason or another. It is an understatement to say this woman has been a grandma-best friend-nurse-personal baker-principal kind of guardian angel for the majority of his life.
At times, his health had deteriorated so badly we truly wondered if he would make it past his toddler years. But every time we thought we were going to lose him, he would rally. He came back fighting. And look at him now! This child who was once so sick and so tiny and so close to death’s door on countless occasions is starting kindergarten in two weeks!
So now, as we approach this milestone, our hearts are breaking and our minds are panicking as we realize we are plucking our little boy out of the nest. We’re leaving the security of the people who know him so well, the director, his teachers, his “sisters” and “cousins” as he calls his best friends who have put up with his antics and accepted him… He will be gently plucked from one nest and carefully placed into another. One with equally amazing teachers and staff (this we already know from experience with our older son). There will be a learning curve, which is scary, but we know we will get through it. If there is one thing we’ve learned… we can make it through anything.
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