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Thursday, 17 September 2009

Is there no reprieve for Ethan?

Here we are once again...

Sunday we had a huge annual Vaags BBQ gathering outdoors and we delighted in celebrating a "growing" family based on the five siblings (and their parents) who journeyed here from Holland sixty-one years ago. Five siblings have turned into a gathering of nearly 130 people! Can you imagine knowing that you played a part in the existence of 130 people? Never underestimate the significance of your presence here and the mark you are meant to leave behind!

The weather was beautiful, the food looked amazing (I could only eat the egg-free, mayo-free potato salad that I brought and some of the fresh veggies but the rest looked sooooo good!!). Ice cream cones were served for the kids along with dozens upon dozens of baked goods.

I behaved and did not eat ANYTHING other than what I COULD eat. When cheating on this diet means four days of Ethan screaming and writhing in pain, nothing looks yummy enough to be worth watching someone else suffer because of it.

Ethan was beautiful for this event and he had even slept SEVEN HOURS STRAIGHT the night before. Oh yes, this was a glorious day to be celebrating indeed! Being an afternoon gathering, Ethan missed his nap but remained in pretty good spirits. When we got home, the evening progressed as it has the last few days and we figured all went smoothly despite being surrounded by all of his allergens.

However, that night, Ethan was quite restless again and when he woke up in the morning, I knew right away something was not right.

First of all, his mood gives it away. He is usually happy, energetic (a little too energetic) and just overall in good spirits. But Monday morning he woke up just screaming and the day persisted with constant crying, whining, poor sleep and his skin breaking out.

To make matters worse, Monday night I bought a chicken from Costco looking for an easy meal due to the rough day we'd had. As I am about to serve it up, I read the disclaimer on the packaging stating "may contain fragments of shellfish, wheat, dairy, soy and or nuts."

Are you flippin' kiddin' me? It's a chicken! Do they let the chickens wrestle with the crabs before cooking 'em? Or do they bake some cookies before getting thrown in the roaster? Or hey, what chicken doesn't like a good milkshake before D-Day?

Too tired to make myself anything else, I trusted that the "may contain..." words were merely warnings to cover their own bums in the RARE occasion that someone MIGHT have a reaction.

Well, considering Isabel had a 0.2% chance of CMV affecting her as severely as it did, and with Ethan falling into the tiny percentile of children who are SEVERELY allergic to so many things, I should really take those "may contain" and other "small chance" warnings as down right predictions!

Monday night goes even worse than Sunday night. Tuesday all day I am trying to walk around the house with a crying and screaming Ethan holding on to my leg and Anika who is trying to negotiate "going outside, mommy. Skitoes are bad, mommy?" Yes, Anika, the mosquitoes are very bad.

Today, Ethan is the worst yet skin-wise but his mood seems a little better. We bathed him with some hydrogen peroxide only to watch all of his pussing open wounds turn white with signs of possible infection.

I can only imagine his threshold for pain. Duane suggested a wet-wrap tonight and thank God he did. Ethan actually relaxed in my arms as I nursed him just now and he breathed deeply... things you don't realize have changed until they return to normal.

And I am left wondering... was it being outdoors for so long during the worst of all allergy seasons on Sunday? Was it being around his allergens? Was it the kidney beans in my chili we ate for supper Sunday night? Was it the Costco chicken or the new tortilla chips we bought that also contain a disclaimer of "may contain..."? Am I eating too many tomatoes lately? Did something contaminate his baby food I made? Is he developing an allergy to the Corn Thins he soooo loves to eat?

What more could he possibly be allergic to? What more do I need to cut out of our lives? And I am TERRIFIED about this H1N1 flu and the potential devastating effects it could have on someone whose immunity is so compromised.

Surely God has made him strong to endure such things? Surely God's plan for him will include changing other people's lives because of his outlived suffering? Surely God would not have me lose my only son? And yet, all of these things have happened to others and these things WERE part of His plan, whether understood or not.

I don't want to be afraid anymore. And yet, if I am not afraid ENOUGH, will I jeopardize Ethan's life? Do we live in isolation until he is stronger? Or do we surrender to God's will and TRUST that LIVING life will mean an outcome that will bring glory to Him in the end?

These last few days have felt near impossible to put one foot in front of the other. Thriving plummets to sheer survival mode mentally and emotionally. Bless my father who came by this morning to watch the kids so I could just get out of the house for a little bit. He took one look at me and said "maybe you'd prefer to nap this morning?"

Thanks... I think. Either I look that bad or my dad knows me that well. Perhaps somewhere in the middle? (weak laugh)

So may you join with us in prayer as we praise God for the answers He has given us, for the healing He has granted Ethan in the past, for the strengths He has given Ethan to-date and for the privilege of loving him as our son. Join with us as we also pray that God bring more healing upon his brutally marked body, that he offer Ethan reprieve from his suffering and the promise of a long, healthy and fulfilling life. And that we give thanks for every moment we have with him even if they are exhausting. God bless you all out there. I love you so dearly for journeying this with me.

1 comment:

Anonymous said...

What a sweet little love he is. This is a really tough journey you are going through. I'm sorry you are experiencing this. I admire your faith, and will keep praying with you for Ethan and for you and your family as a whole.
Your Cousin,