First Day

Kyle had his first day of preschool----

 

I am a horrible mother---I didn't put him in cute clothes (or even a coordinating outfit--maybe because I didn't dress him), I didn't have time because we were rushing to pose him well or write a cuter sign. But we did document it. And he was excited. 

In reality it has been a whirlwind 10-ish days preping for this. He was put on a wait list in March. When school started,  I thought he just wouldn't get in. Then we had surgery and several weeks of recovery and then we know we are moving from this house in March and he won't continue. So I thought, oh well! After his surgery though we got a call that they had a spot and it snowballed from there. 

So he started today. Neither of us remembered to say goodbye to each other---we were both distracted. The only one who was upset was Aiden, he wanted to stay. Aiden was also upset when we picked Kyle up, he wanted to stay and play on the playground. So I think that it was hardest on Aiden :)

There are several things about how the school is run, that I am not jumping for joy about. But I think that is because I don't like being told what to do and I am not really a joiner. (are you all surprised). They are so far nice enough, it fits our budget, they will work with his medical needs. But it is affecting his ability to nap and they treat him "special."

They talk about his "special snacks," his "special cupboard," his "tricky tummy." Honestly, I know they want every child to feel special---but I want him to be less special. I want Kyle to be normal to blend. I also feel uncomfortable with losing control---my control. 

It is my control. I am the one who has taken him to every doctor's appointment (except one where I was having a baby---literally---see this post). I am the one who has consulted on every procedure and test results. I have read the chapters of medical text books that our GI doctor has mailed me. I have research clinical trials. I have filled every prescription. When he breaths in his strange pain rhythm, I know. I have fought for him to get the right drugs when he is in pain. I have held him when he has screamed and writhed in pain. I have charted every intake/output for months. I have taken the g-tube class. I have changed every button. I have been there every time he has been under anesthesia, every scope, every same-day surgery, the traumatic ng tube, the trips to the ER after the g-tube, reminded Evan of every dosage of every medication when I am unable to do it myself.  I have spent every night in the hospital that he has. I have fixed every special meal to take to feeding therapy. I have gone to the nutritional clinic for a 3 hour appointment. I have filled out every form, every medical history. I have picked up every order of his special formula (except one) and placed every order for his home health supplies. I have made every call to the insurance company, scheduled every medical appointment. I have researched recipes, food plans, food triggers, read labels. I pack extra snacks in my purse everywhere and consider the menu at every event and restaurant. ME! 

And I don't say that to be proud or toot my own horn, it is my job as his mother (Evan takes all my venting phone calls, all the wrestling, math teaching, Wii playing, gives all the blessings, and holds me up so I can fulfill my role. Sometimes Evan even carries me while I carry Kyle).

When my pediatrician saw him for his 4-year checkup he said, "I know it has been quite a project, but he is growing." That child, that boy, that is my project. It is through my diligence, attentiveness and sheer will that has gotten us to this point. I have taught him about his food trigger to dairy (which he tells everyone--although he often has to be reminded if he can eat gluten or not). I have taught him the foods that make him sick. He is my good kid that knows to ask before he eats anything away from home, he knows that it is no big deal to eat things different from others. He is smarter than a "tricky tummy" answer. 

That is the control I don't want to give away. I want to control his health, his food, and how he is treated about it. That is what makes me uncertain, sick to my stomach, and just overwhelmed by a feeling of dread. He is a brave boy. He deserves all the credit for putting up with it. He deserves all the support for the chronic pain, discomfort, and confusion. He is strong. He is capable. He is amazing. I have been blessed beyond belief to have him.