The New Normal

Whenever you see families with special needs children (and I guess when people look at us), you wonder how they do it. How do they deal with the extra challenges day in and day out? The answer really is that you get used to doing things differently; it becomes normal. We have been tubefeeding for over a year to the point where going out and hooking up the baby while out and about is really not a huge deal. We have our extra bag and extra feed kit and it has just become part of the process.

A week ago, we decided to try giving Gabriel all of his food orally, since he was eating so well. We wanted to see what his benchmark was; I didn't really expect him to take everything, but I wanted to see where he stopped so we knew what to work toward. To our surprise, he has been taking ALL his calories orally. Every day. And so now we have to adjust to a new normal. One that doesn't included a food pump, feed bags and endless use of the Blendtec. We aren't tube free, he still doesn't drink, but all that is going through that tube is water and medications. Every morning I wake up and wonder if it's all going to just go away, but after a week, I think eating is here to stay.

So now we're trying to think more like those other parents. The ones that have always spoon-fed their children. We can't just hook him up to his lunch on the drive home from church; we have to make time and space to feed his lunch by spoon. I even packed up his pump and put it away, although we will keep it awhile in case he backslides. It's odd being the parent of a "special needs" child that will eventually outgrow his "special needs". You sit on the fence between the two, not really belonging to either group, but trying to understand the challenges of each. We'll keep trying. And in the meantime, hopefully Gabriel will keep eating!