Jacob & Lili

Jacob & Lili

Monday, November 19, 2012

My Dirty Little Secret

It's been a while since I've posted. Life has been nonstop. But then when isn't it?

Jacob's last trial was Udi's Gluten Free Bread. Udi's uses egg whites in their breads and come scope day I was a little nervous. We had already tried whole eggs with miserable results. But in the end, he passed with flying colors.

Last year around this time he had wanted to trial pumpkin in the hopes of having a pumpkin pie. Problem was that I didn't have enough ingredients in his diet to make anything remotely resembling a pumpkin pie. This year, however, things have changed. We are now trailing pumpkin. I have made pumpkin bread, pumpkin muffins, pumpkin pancakes (not a favorite) and pumpkin cookies. I have made pumpkin smoothies and pumpkin ice cream. And so far, I do think we are going to pass pumpkin.

Frosted Pumpkin Bar
After his last scope the doctor gave us the go ahead to stop one of his day feeds, 3:00pm. We are hoping by spring that he will no long need his tube and maybe just maybe we can remove the tube by September 2013! We have come a long way. While I celebrate his success, I know that there are other kids out there with EoE who haven't been nearly as successful. I wish I knew why Jacob is succeeding while others are not. Then I could wave my magic wand.

Lili has been feeling nauseous. I'm beginning to wonder if we need to do another gastric emptying study. Maybe her new hormones are slowing her stomach down even more than usual. Do we wait it out? Or put her through the hoops?

After a full trimester, she is finally settling into middle school. There was some raised voices (yes that would be me) and some tears (yes that would be her), but she finally found her groove. In January, her class will be going to Yosemite and so I will have to coordinate all her food but I know in the long run it will be a great experience for her.

So what's my dirty little secret?

I have failed my kids. I know logically I haven't. That the issues they have are not my fault. Not my intention. But I think it's the burden that we special needs mom's carry. Every time I get a new report, diagnosis or idea, I wonder why I can't have the normal kid. Then I feel resentful, "How did this happen?". Then I feel guilty. "Things could be worse right?" That annoys me because saying that doesn't make the situation magically go away. And then one of them does something that reminds me why I love them. But then another report comes in and it starts again.

Our lives are not normal. Our week is filled with appointments, fights, and questions. Our friends, we find out, are not our friends really. And our true friends are those we may not even ever meet but support and understand us.

After a year, or two or three, our life is now our normal. The frustrations, the exhaustion, the small victories, those are our normal. The chaos, it's normal. Our life is normal....sort of....

The Maupin's

The Maupin's