Life Goes On

We're all adjusting to this new curveball in Bean's life. Beans and I are both still grieving the loss of the most basic human instinct - to eat and to feed your child. He's coping as well as can be expected. He hasn't cheated at all, knowing that one cheat could be the straw that breaks the camels back and sends him into a severe reaction requiring use of his Epipen (shot), 911, an ambulance ride, and a lot of other scary things. And though he understands a lot better than when he was 3, he cries several times a day wanting to eat. I would have dreamed of this day a few years back when he refused all food. Now he finally wants to eat and all I can say is NO. As soon as I can I want to get him a GameBoy DSI with a couple of games (Bakugan? Pokemon? something he'll LOVE) that he can play only when Little Man and I are eating. It's so hard to feed Little Man, let alone eat myself, when I can't feed Beans.

Physically, he's doing a lot better. His skin is almost clear for the first time in weeks! His gurgly/choky throat is clear. He has no eczema on his ears. The dark circles that have lived under his eyes for a long time are GONE. The cough that bothered him all night every night is gone too. It's exceedingly clear that food and Beans do not agree with each other.

So, I tell my 9 year old who has just gotten his taste of being a normal kid and all that entails, that I know life isn't fair, but that I love him more than life itself, that I would never have been complete without him, and I'm right here with him. I hold him while he cries then he happily jumps into his computer games or an art project. I hear him sleep peacefully at night, and I know this is what he needs. Someday maybe food will be a part of his life, but in the meantime the g-tube and Neocate are literally lifesavers and we'll continue on with his normal life.