More on Hope

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.

Wah.

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

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15 thoughts on “More on Hope

  1. Egg, wheat, dairy, soy and nuts??!!! Ack! What a long list!

    My son, Peter is allergic to peanuts. He’s like a little dog…if he is given a new food when we are out somewhere, he will sniff it and ask me if it has peanuts in it. (Especially if it is a cookie or candy.)

    I am praying that you find peace and comfort while clinging to “the rock that is higher” as you are caught up in the day-to-day management of all of your “A” disorders. Hang on girl!

  2. Great post. Heightened awareness, yes, but where is the line between heightened awareness and neurosis. And I mean that in a self-deprecating manner! Before I had children, I used to think modern parents were crazy, and I’d never be like that, we all need to chill out, get back to the basics, etc. And of course now, I basically the poster child for hyper-vigilance with respect to the allergies. And the grandparents think we’re crazy! I’m like: have you seen anaphalaxis???? Anyway, sorry for rambling.

  3. “Hope…is a mode of knowing, a mode within which new things are possible, options are not shut down, a new creation can happen.” A thought from NT Wright, from his book “Surprised by Hope”

    Praying for you and your family this morning.

  4. oh, love. can you find some room to breathe? can you go for a walk in the sun? can i help? there’s so damn much on your plate. (dumb pun honestly unintended).

    sending love and the message that i’m still here for a babysitting gig or an allergan free dinner date. (one of my best friends’ sons has a similar allergy list. she can help me cook!)

    hugs

  5. Ah, friend. I am sending you every ounce of love and light I have in me. It’s a considerable amount (you’ll just have to trust me on that one).

    And the walls having a blog bit – you might be on to something there. Yikes. The walls would totally rat me out.

    xo

  6. I’m glad you linked to the previous post about Hope’s allergies because I had missed that one. Poor baby! I’m so glad you discovered the cause, although I can only imagine how hyper-alert you must be because of it. Like you said, it’s the managing that can be overwhelming. My thoughts and prayers are with you. xoxo

  7. Oh girl, I can relate to this on a lot of levels. Although we don’t have the “A’s;” There are months when it’s one thing after another with my husband’s health. He has lists of things he cannot eat as well…amazingly though, I can see how it has kept all of us healthier (and thinner! 😉 ) because of the list. Not easy, not fast (food), but healthier.

    Every time he gets ill with a cold, the flu, any kind of stomach or fever related sickness I get that feeling you described because I know each thing has the potential to lead to so much more. It tends to pass much quicker now through the years as I’ve learned how to rest in God’s presence and look for His good in each situation; but I know that rush, that panic, that disappointment, that exhaustion…and that hope, that peace, that joy that God is at work and has us in His hands. The love between us is sweeter because of it. As I am sure yours is and will be with your girls.

    No superwomen or men here either. Sometimes I think it’s almost easier…some will strive for that until their dying breath. Praise God for hope (& Hope!)

  8. Precious Hope. Jeneil, I’m praying for her, too.

    “… those who hope in Me will not be disappointed.” (Isaiah 49:23b)

    Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through Whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, Whom He has given us.” (Romans 5:1-5)

    Love, Joy, Peace, Grace, & Hope in Him!
    K.

  9. Wow this all sounds so familiar. Daniel had the eczema like poor Hopes picture. He was allergic to eggs. Zachary has the really severe allergies, but only to milk and eggs. I nursed him and actually continued to by elimating all of that from my diet. It was hard but can be done. I couldn’t get him to drink any soy formula though. I’m so glad you found a way that works for you. There are lots of great cookbooks out there now.

    Daniel had the asthma. He has outgrown a lot of it, but last week it showed itself again and he went back on the nebulizer. I remember when the asthma was so overwhelming. This to will get better. Really.

  10. I’m so sorry that you’re dealing with so many allergies with Hope! Have you considered NAET for her? http://www.naet.com. We’re about 12 or 13 treatments in, and it’s too early to tell if it’s going to really be what we’re hoping it will be, but as far as I can tell, it especially is good for those really obvious things–and you’d be able to tell if it’s helping. I’ll keep you posted.

    Thank you for sharing your words and the video about hope. Those stressors are always there… sometimes I wonder how long one can endure, but hope is powerful, isn’t it?

  11. Pingback: Perfect Patient « Autism In a Word

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