As we've been ticking through the Spring, getting more use to our "new normal" of cooking, diets, and sensitivites, I've been in awe of how my 10 year old has handled himself through the ups and downs of this roller coaster. There is a huge emotional element to eating that we don't normally think about. I guess we do when we are on a diet to loose weight, but when you are told from a professional in the medical community that you can NOT eat this or that or your brain will swell, it brings it to a whole new level. You are not able at that point to break the rules, cheat a little, or have "just a bite" of anything you are sentenced to do without. As much as I would love to see the joy on my sons face as he eats a real chocolate chip cookie or oreo cookie ice cream, I can't even consider it when the alternative is medication that may or may not work.
He's a trooper through it all, he really is. He tries to stay positive and always tries to compliment my cooking when I try a new dish. Even if he does not like it he'll say "thanks mama for making it, but maybe next time we can try something else". He's so afraid to hurt my feelings. I love this little guy! His hardest moments though are leaving a birthday party where he had to pass on the ice cream & cake, or a teacher in a fun class I signed him up for brings ice cream sandwiches for everyone to suprise them, and he has to pass. He does this with grace and maturity, but when get gets in my car at the end of the day and shuts the door, he melts down....and my heart breaks. Living a life without is not easy for any of us, and for a child who already has challenges in other areas of his life, I see him often with that look of "why me" or "why do THEY get to eat everything and feel normal". I sometimes wish God would put this sentence on me instead of my son, let me take the brundt of this wave and allow him to not have to carry the stress of it. I try my hardest to make sure he has treats in the house, that there are snacks up at school he can have during parties etc., but I'm human and still forget to cover all my bases. I'm still learning how to navigate through this foggy world of new foods, new cooking, new supplements, etc.
As for his progress, he's doing great. He's able to focus so much better, pops right out of bed in the mornings, can carry on long converstations without fading out, and has made a great friend this year at school. It was hard for him to make deep friendships before because he had challenges with the give & take of relationships because his mind was always foggy. He still struggles in math and probably always will. I think he spent so many years in a fog tuning everything out that he now has a skill to do this that he pulls out of his back pocket during math, b/c it's difficult for him to grasp. He's no where near 100% yet and his doctor has told us we still have work to do. He's like an onion and we are just peeling back the layers only to find something new he has an issue with, so we address it, peel another layer back, and find something new. But with each layer comes healing, physcially and emotionally, and as I see his healing, have deeper conversations with him than ever before, and ride along side him during this journey, I'm getting to know the most amazing boy I've ever me, and feel simply blessed.
