I have been thinking about this for quite a while. Don't get me wrong, living without Joseph's feeding tube would mean living without Joseph, not an option. But I feel bad for all of the things he misses. When I found out I was pregnant I looked forward to sharing holidays, birthdays and vacations with our family. I still love the time but it is somehow different.
Let's start with Halloween. Even if we bought all the candy at the store, he would not take a bite of any of it. Not one thing. Then comes Thanksgiving. Turkey, dressing, mac-n-cheese, mashed potatoes.....nope not a bite. Christmas is here now. No candy, fruit or nuts in his stocking. New Years comes and goes without the traditional good luck meal. Birthday time.....not one bite of cake. Easter time.....same story yet again.
Some of you reading this have experienced this but for those of you with children who eat in the traditional way have no clue. Don't get me wrong, having the G tube means having Joseph because without it he would die from dehydration. Yes, you read that right, he would DIE.... To have a child who doesn't eat by mouth is an emotional roller coaster (this is without any medical issues added). Think about the joy and pleasure you feel as you enjoy a great meal with friends and family....Joseph has never experienced this. And that makes me very sad. It makes holidays different for me. Simply said, I want so much for him to eat, I want him to enjoy food. My close family is really great. They don't say the stupid things like, "you have to MAKE him eat", "when will the tube be gone", and the ever famous "I bet I can make him eat". For that I am grateful. They even tube feed him from time to time.
So where does all of this leave us.... Joseph's tube is here for as long as he needs it, if that means forever, then forever it is. From now on we make new family traditions. We continue to give him the choice to eat but do not force it.