Wednesday, November 17, 2010

Bad Phase...

So we're in this really crappy phase where Ava vomits when she cries hard. Not with the whiny sniffling cry that most kids do, but when she really cries. It's been happening a few times a week and it is exhausting for all involved. It's happened twice today.

Every time Ava starts to cry...for whatever reason...I grab her and run to the tile. If I can at least minimize the clean-up, it makes it a little easier to handle and it tends to be a little less stressful. I try to get to the sink or a bathtub, but that's not always possible.

She is also starting to get a cold and I've found that when she is "snotty", her stomach tends to be a bit more sensitive to her crying spells.

The hardest part...she's a toddler...and toddlers cry...about everything! But it seems to only be when she's really hurt or really upset.

So, now what I do is start analyzing my formula. I drive myself crazy with, "What did I change?" "Did I use too much (fill in the blank)?" "Is she sick?" "Did I feed her too fast?" And the biggest question..."Are we heading into another period of vomiting and another symptom?"

You see, it's not easy having a child like Ava. Granted, there are children a lot sicker and worse off than her, and there are parents dealing with WAY worse things everyday than what we deal with. There are children dying and suffering and being tortured through surgery after surgery, being stuck with countless needles, poked and prodded, and just being alive every day is excruciatingly painful for some children.

But having an undiagnosed child is rough. For a long time, we would obsess over every little cut, bruise, and bump. Were we watching the progression of her "disease", or did she just bump her knee on the slide? 

What we've found over the last couple of years is that most of these things have nothing to do with a disease process and are just Ava being a kid. But we just can't get away from that little voice in the back of our heads that asks, "Is tomorrow gonna be the day that the other shoe drops?"

We believe we are past the life and death stage with Ava, but I do always secretly wonder if tomorrow her kidneys are going to shut down or is her heart going to stop... As parents, we all worry about our children, but not in the way parents of a special needs child worry. The worry is different. It's not better or worse...just different.

Most parents worry about their child fitting in, doing well in school, being happy, not getting hit by a car... Special needs parents worry about things on a whole different level.'s exhausting. I'm exhausted to my very core. My soul and spirit are tired. I'm just TIRED and I sometimes wish the whole situation would just go away. At this point, there is no light at the end of the tunnel.

With an undiagnosed child, there is nothing to put your arms around...nothing to understand...nothing to look forward to. There is no way for us to have any idea what life will be like. No disease to predict a path of progression. No timeline and no timeframe.

The divorce rate in marriages with an undiagnosed child is something like 90%. The financial and emotional stress is unimaginable and indescribable. The entire family suffers. Siblings feel neglected and marriages are put on the back burner. Mothers feel helpless and fathers can't fix it. This also takes it's toll.

We just aimlessly continue on. We do tube feedings and hope that one day Ava eats. I'm a pretty positive person and I try to put a positive spin on things, but just gets to me. I'm in the stage where it's just getting to me. The vomiting gets to me. I HATE it and I don't deal with it well.

So I try to give myself permission to HATE this whole thing. I give myself permission to be angry about it, and I allow myself the acceptance to know I'm not a bad person for it.

I know this is just a phase I'm in, I know it will pass, and I know that Ava is worth every tear I've shed.

It is what it is...and it's OK.


  1. Hang in there Steph. We're thinking about you all the time...


  2. Steph... You are NOT a bad person, you are a TERRIFIC mom and we love you! Love, Chris and Gary

  3. I can really relate to your post. I still wonder about the little things and how they relate to my daughters undiagnosed disease. My daughter is 14 and very unique, each new thing that comes up brings on the stages that I have gone through in the past 14 years.