An Extra Dose...

I have a friend named Ali. We write each other emails multiple times a week, it is our own private, 2 member support group. We each have sons who have anaphylactic allergies and sons with chronic medical conditions. So we understand each other. We can talk to each other freely about our fears, our concerns for the future (teenage boys...) and offer support when the other is feeling particularly overwhelmed. We keep each other updated on medical appointments and are uniquely invested in the others children, we swap resources and recipes and vent when we need to. I am so grateful for her.

Last week I was updating her on Ben's dismal results from his updated allergy test he had done. During a skin prick test a tiny amount of the protein is put under the skin. The inflammation level is measured where the allergen was placed. The scale ranges from 1-5 meaning a 5 mm round welt would indicate a serious allergy. Ben's welt to peanuts measured 16 mm. To say he has a serious allergy then is an understatement.
He also remains allergic to eggs and all tree nuts as well as dogs and cats. Dairy was cleared for allergens but after introducing it to his diet were cleaning up diarrhea all week so that excitement was short lived.

I received true sympathy from my friend as she knows exactly how I feel. And we were so hopeful that these tests would show positive changes.

Every Mother worries about her children. Car accidents, chocking, falling out of trees...but everyone around children knows these are dangers. In thinking of a comparable analogy I thought it would be like cyanide. Of course no one gives this deadly poison to their children. It could be lethal in minutes. But what if one day it wasn't dangerous anymore, in fact it was delicious and desirable and it was everywhere. All the kids were eating in in chocolate, granola bars, sandwiches...the children were all fine with consuming this now. Except your child. It remained just as poisonous as ever to your child...but now you are all on your own...trying to keep your child away from it. It is, a lonely and frightening place to be.

This fear is something we talk about frequently. As LDS and Islamic women we are both very devoted, through different faiths to God. We wonder together often... as we both tend to worry more than average anyhow why God thought it best to give us children who needed an extra dose of that worry. I am still unsure. I hope I am the best choice for Ben's Mother. I am certainly grateful for him, and He knows the degree to which I love him. But I am all out of Worry. Because then their is Jacob.

Jacob has a genetic disease (I don't even like writing that...it sounds so ominous). called Von Willebrand disease. He was diagnosed at a few months of age after the pediatrician wanted further tests done for the size of the hemotoma's on his head after he was born.

(Von Willebrand disease (VWD) is a bleeding disorder. It affects your blood's ability to clot. If your blood doesn't clot, you can have heavy, hard-to-stop bleeding after an injury.

In VWD, you either have low levels of a certain protein in your blood, or the protein doesn't work the way it should. The protein is called von Willebrand factor, and it helps the blood clot, when this is absent or not working properly then it effects the bodies ability to stop bleeding".

Jacob usually has purple marks on him, evidence of the small bumps that react dramatically in exaggerated bruising. A bruise large enough for someone to say "oh my, what happened to his poor forehead" was nothing more then bumping himself on the table. I don't think about it very much because there is nothing that I wouldn't be already doing to prevent it, short of putting him in a helmet and a bubble.

Then he fell down the stairs.

The stairs are always my fear. The are steep and end in hard ceramic. I hate them.
Then my baby fell down them because I thought the gate was closed, so did he...
He pushed on it to tell me he wanted down and head first he went. The gate was closed, but not latched shut all the way.

My heart was in my throat as I flew to the top of the stairs. Everything I had read about VWD came barreling into my thoughts. Could he hemorrhage, what if there was internal bleeding that I didn't know about, had he broken something? At the top of the stairs I stopped short. He was laying on a track of soft diaper packages that Ben had put together of too small diapers that I had left by the door to return to the store. Relief isn't even close to what I felt as I imagined the impact the solid stone floor would have had. He cried for a few minutes, demanded more then a few kisses and he was off again.

I wrote what I have finally learned, to Ali after that incident. Really we are quite fortunate because as God sent us children who needed an extra dose of our worry, He sent an extra dose of his angels as well.