Hope’s latest blood test confirmed that she still has very severe, multiple food allergies. I was really, really disappointed. When your child has allergic reactions to foods with egg, wheat, dairy, soy and nuts – sometimes by simply touching them – it’s not always easy living. This is what food allergies have done to Hope.
We’ve also been concerned for some time about Hope having difficulty breathing. (One trip to the ER a few months ago yielded a verdict of bronchitis). After a scary episode one night last week, I took her to the doctor again. They took one listen to her lungs, and the next thing I knew I was loaded down with a pediatric mask and chamber, 2 inhalers, an action plan, a prescription for Singulair, another EpiPen, and a children’s book called “The ABC’s of Asthma.”
“Oh, and I’m sending you to a dermatologist because it looks like she has alopecia,” tossed out the doctor as she noted a couple bald spots on Hope’s head.
I joked to my friend that my family has growing a list of “A” disorders – autism, allergies, asthma, alopecia…
It could be worse. So much worse. I am so thankful that the medical issues for both our children are relatively benign and manageable.
But sometimes we get weary and overwhelmed in the managing…. Whenever we leave the house we are always on high alert for Hope, looking for foods that could possibly send her in to anaphylaxis. Now we must also be aware of triggers that may leave her struggling for breath.
And it goes without saying that the autismometer is always in gear for Rhema who never stops moving and seems to have no sense of danger or boundaries. Even in our home, we have to be on high alert. Rhema has the physical ability and sense of independence of a five-year old, but her mind has not yet caught up to the way certain things work. I know many can relate when I say, if the walls in my house could speak, they would have a fascinating blog.
Just before Brandon returned home from his deployment to Iraq in ’05, spouses in the unit were encouraged to go through “re-integration training.” I re-call the instructor giving the following scenario:
Imagine you are driving along in your car, listening to the radio. You go through a green light, and someone in a car perpendicular to you runs a red light. You hit the breaks just in time as the car races by barely missing you. Your heart is pounding, your throat is dry. Even as you resume driving, your breathing is fast and your heart is racing. Imagine living in that elevated state for a whole year. That is what it has been like for your deployed spouse in the war.
I think, to some degree, that scenario fits anyone who loves and cares for someone who is ill or disabled or has special needs. You may get used to it, but the stressors are very real and very constant. Sometimes the first step is simply recognizing that the stressors are there.
(For me that means saying out loud that Superwoman doesn’t live at my address. And, oh yeah, Superman doesn’t live here either so maybe I could cut the man some slack.)
Anyway, Hope is her name. And she is the best stress-buster I know. Just when we feel stretched to the limit… with one look, one word, one smile, one giggle, one song, she gives me and her Daddy a heaping dose of Hope.
From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I. Psalms 61:2
“It Might Be Hope” – Sara Groves