Before I chicken out and go on to other things, I’ll tell you a bit more of our story, knowing that the subject matter is controversial and may lead me to practice my If skills:
“If you can meet with Triumph and Disaster
And treat those two impostors just the same …”
With many places I could begin, I’m going to take an excerpt from our Caring Bridge pages (these posts won’t be chronological anyway) shared with friends and family during heated times. Our story, however, begins wayyyy before then.
If you skip the excerpt, don’t miss the Death was Too Natural section below.
* Excerpt Begins *
SuzMom Update (and a bit of history) … Sep 24, 2008 5:22pm
The update first: The prednisone is wearing off … sigh … or should I say, has worn off. And they can’t give her any more at this point, nor is there anywhere to go on the topical steroids (she’s at the top level of Ultra-High already) hence the trip to Duke.
With the flare back, Winter has such itchies, and it has crossed into pain, especially on her face. Thrice a day treatments with triamcinolone ointment (a fairly strong one for her face) for two weeks is the doc’s orders (along with all her other meds, and the ultra-high topicals) until we can get to Duke … or at least closer to the day we leave.
A bit of history …
It wasn’t until Winter’s first birthday and the introduction to “real foods” that the problem arose. Over the course of her early life it was clear she was allergic to many foods, so we took out, rechallenged, put back in, rechallenged and put back in foods depending on how each round of testing came out. (That sounds so easy in one sentence, but believe it took years!)
In the middle somewhere between then and now, the testing showed she was reacting to some degree to ALL the foods they tested her on. Environmental testing showed the same … everything.
“Live on Mars and drink water” was the advice that year, but of course it was followed up with:
“That is impossible,” and I quote, “The child has to eat.”
So, we developed two nutritional plans … one for baseline and one for flares. The only other option, her IgE levels elevated, “might be” IVIG treatments. Researching that out, we decided to try everything else we could first.
So, bouncing between allergists and dermatologists we have tried everything they suggested only to come full circle with no long-term relief. She’s been on almost 25 rounds of antibiotics and 6 – 8 bursts of prednisone in her short life. And yes, I know, that’s a lot. But they were her only choice to keep a’goin’ so we chose life over political/green/natural/alternative correctness (which we tried that, too, just so ya know. 🙂 )
The indoors and outdoors make her itch, but the heat makes her miserable. So we are thankful Autumn is in the air for Winter! 🙂 Although it doesn’t stop the itch, she can go out and play with friends and enjoy the beautiful days of Florida Fall.
We all wonder if our trip to Duke will bring us back to the idea of IVIG treatments, but at least if it does, we will know in our hearts we did everything we could first. But I wonder, are IVIG treatments an “allergist” thing and since we are seeing a “dermatologist” will they say that’s not the way to go? Oh, how I wish those two groups of specialists would start talking together!
Maybe the answer is in IVIG or some derm treatment they suggest in North Carolina. But either way, we know our Real Answer, our Ultimate Answer, is in God, His Word, and His promises!
As a friend from South Carolina said, He will turn our MAZES into something that AMAZES!
Amazing grace, available to all, God is just waiting to receive our call!
Noah found “grace in His sight” … maybe because he was looking for it …
More grace, Lord, more grace!
in His love,
Death was Too Natural
Sharing that excerpt (one of 100’s I could share), I worry I’ll get slammed (again) for all those meds, all those meds, all those meds. But if this can help one person, a little worry will bring me to my knees. A good place to be.
Please know, we tried going the natural route. We spent so much money on the natural route and the natural result would be: she would die. Naturally.
I like natural. But death was too natural for me.
I’m pausing behind the screen because that sentence causes a lot of pain.
We were criticized for not staying natural – but would they have come to her funeral?
And I had two itchy, anaphylaxing children, with differing needs. My plate was full. I didn’t need criticism. I needed support.
So Many Choices
It was hard, but I had a choice to make.
Oh, I had so many choices to make back then.
Choice after choice after choice.
And at the end of every choice, at the end of every attempt, at the end of every doctor – both traditional and alternative – was the conclusion:
“This is beyond my scope.”
And beyond that statement looming death.
Have you ever been told, as a parent, that everything you do that other parents do, like
- feed your child
- clothe your child
- let your child play outside
- provide activities for your child
- even the way you house your child
- the medicines you use
- the medicines you don’t use
- the choices you make
- the choices you don’t make
…could and might kill your child?
And natural living would mean a natural death. So we had to go unnatural.
But Aren’t We Supposed to Hate the Big Pharmaceuticals?!
Are the pharmaceutical companies the enemy? Or is death the enemy?
Please, don’t condemn anyone for turning to doctors and pharmaceutical-produced medicine.
They save lives.
Not permanently, of course – none of us are saved from death in this life unless God does an Enoch or Elijah thing again. Or we happen to be alive when God’s Big Reveal takes place.
God uses pharmaceuticals to keep us here, if only temporarily. Just like natural medicine. They are both temporary fixes to an eternal problem.
“All things were made through Him, and without Him nothing was made that was made.” – John 1:3 NKJV
The friends who walk with us and the few who stayed with us – what a gift! – love us just as we are, un-natural and alive, and I’m so thankful, so very very thankful.
To life. L’chaim.
It’s Your Turn
Have you ever had to take a stand against popular opinion, or a growing trend, for a greater good?
Do you have someone in your life who feels the pressures of living up to an arbitrary standard?
Encourage them today. They need it. Believe me, they need it.