It's really strange lately. I feel like this small community of tubie moms are coming together and really trying to help each other out. Lots of blogs have started, awareness sites have been launched, and I'm starting to see some familiar names pop-up on various sites. We're a small group, but we're strong!
Most of these families have stories that far exceed ours in severity. Many of these children have life-long disabilities and conditions that require, literally, around the clock constant care. I'm also finding that most of these tubie kids have tubes as a result of their primary condition, with the tubes put in as a result of not being ABLE to eat.
But I think what strikes me the most is how STRONG these moms are. I like to think I'm strong and determined, but I'm not sure I would be in some of these more dire situations.
I CAN say that all of us moms are tired and weary. We trudge on knowing that tomorrow probably isn't going to be much better or easier...in fact, for many of us, we know tomorrow might actually be worse. We go to bed exhausted knowing that it will all still be there for us to deal with in the morning. For some moms (I'm thankfully not in this group), the care continues on hour after hour throughout the night as well. Year after year passes and the intensive care continues.
Every parent with a special needs child goes through what I like to call "mental gymnastics". It is a constant balancing act that our brains go through on a daily basis. Each mom's dialog is different. Mine goes something like this:
If I feed Ava 8 ounces now, I can do the next feeding at 1pm, but wait...that will interfere with nap, so...I could do a half feeding before nap and half after nap, but then I'm too close to the mid-afternoon feeding which messes up the before bed feeding and I can't put her down on a full stomach, wait...do I even have enough formula to make it through today? gotta make more, do I have enough fat in this blend? did I put in the multi-vitamin yesterday? I need another Omega-3 source, now an orange veggie, a green veggie, OK...more green veggies, is that too much spinach? wait...no more Vitamin A, skip the cod liver oil, did I oil my syringe, that tube doesn't look very clean, do I have enough formula while we're out? should I feed her now or wait until we get home? OK...I'll do it now so it can settle a little before nap...OH NO! please don't throw-up!
For most parents, life eases-up on you as your children grow older. We raise them to be independent productive members of society. We know that they will leave one day and have a life beyond us. Get married, have families, excel in careers. But for some families, this will not be their reality.
As far as Ava is concerned...we don't have any reason to believe she won't be in the "independent productive member of society" group. However, there is always the constant nagging feeling from not knowing what's "wrong" with her. Does she have some sort of a condition that is going to amplify? Will it be something that will have life-long consequences? We hope that her hunger drive will "wake-up" one day and we can all have a good laugh and some fun jokes about the "tubie years", but I'm not sure I really believe that will happen. I think that something is truly wrong with her, but because she is so young, I'm not sure we've seen the full impact of what it might be.
At this point, only time will tell how this saga is going to turn out. In the meantime, we love this amazing little kid and it's hard to imagine her being "normal".
It is what it is...and it's OK.