Thursday, December 2, 2010


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 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, 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? 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. 


  1. So true Steph - I have seen this small community of tubie moms grow rapidly and it's so nice to have such great support!! Since I created Allie's blog, I have met so many wonderful, strong and helpful mom's out there (including you)!!! I love your thinking of the "mental gymnastics" - your right, it's a constant balancing act and honestly it get's quite tiresome but we trudge on for our kids. Ava is so adorable and so is her big sister!!!

  2. I love your "it is what it is....and it's OK" philosophy b/c it is mine too! I understand how hard the not knowing can be. I too have this strong internal instinct that something is wrong beyond Kylie just not eating and live in fear waiting for the other shoe to drop. Sometimes I feel like people look at me like I'm that crazy mom who just wants something to be wrong with her child, but I really don't. I just want a name for what is already going on. I worry that one day they will figure her out and then say that "if we only would have known....but now it's too late to do anything to fix it". I love the emerging tube feeding community and awareness. Sometimes talking to other moms of tubies is the only time I feel completely normal.

  3. I didn't realize I could post YOUR blog to my facebook or I would have done it that way. But I stole it instead. I hope you don't mind. You get the words out in a way I can't seem to.