Posted Sunday June 01, 2014 by Melissa

Last week, I had a not so gentle reminder that this disease, and the medical trauma caused by attempting to treat it, still have a strong grip on my child.

20140531-230349-83029211.jpgI should celebrate – the end result was that his ears, nose, and throat, and his eyes are stable. They do not show the deterioration that Hunter Syndrome normally causes. But what did it take to get those answers?

The ENT appointment was unremarkable. But it involved an hour wait, thus causing the first wave of discontent.

And if that had been the only thing on our list, I think we’d have made out okay.

But he had an ophthalmology appointment an hour later. So we killed some time, played on the stage at Vanderbilt Children’s Hospital, got a snack. All was good.

When we first started the eye exam, it definitely took more coaxing and bribing and timeouts than typically is required which should have given me pause.

But then we got to the eye drops. I was hopeful that we could do it all without hands on restraint. We tried. But we should have tried longer.

Doctors and nurses aren’t always the most patient people. Even when they work in pediatrics unfortunately. And most have no real understanding of the medical trauma that children with chronic medical conditions endure.

So yes, we had to hold him down, while he fought, so much so that they suggested next time he be sedated. But the fighting is often the direct result of the restraint, not the purpose of the restraint (the eye drops).

And he finished the eye exam, after much work, awhile later. But the toll of the restraint, the prodding, the tasks then reared it’s head.

He had a complete and utter meltdown in the waiting room. Kicking. Screaming. Crying. Flat on the floor. Climbing over chairs. Running like lightening. For.a.while.

It was mortifying for the staff. The patients and families. His brothers.

I had to physically carry him out and to the car where I cried like a baby. The reminder that even in a child so miraculously improved, that the disease and it’s treatments take such a toll.

I hope and pray that this reaction does not set us back in the tenuous balance we’ve achieved for his infusions and other procedures, but only time will tell.

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3 Responses to “Uncontrollable”

  1. Sweet friend I wish I could say I was better about praying consistently for you and the amazing job that you are doing every day raising those boys. I will be better because flat out YOU AMAZE ME. You handle this life God has given you with absolute grace. Sitting in the car crying after carrying Case out of the office… I once cried because Maddie May would not carry the camera up the stairs because life in the apartment had taken its toll. Perspective. You give me perspective, and a mothering that I can strive for. And after that day, you still had the energy and love to host a house full of 10 year old boys like it was nothing. I am convinced that one of the reasons God gave you Case, is because He was giving Case, and all other Hunters kids, YOU. You with your big mama voice and your huge heart and your tenacity that I could only dream of. I am so proud to call you my friend. You make me a better person just by being an amazing example and I am so thankful for you.

    I love your family. I have loved following Case’s progress, and I will be better about praying everyday for simpler moments… moments when a doctor’s appointment will not have any conflict, days when appointments happen on time without an hour wait, and days that Case does not suffer anymore trauma and his precious mind and body are able to recover completely. Thanks for pouring these words out so we can all be just a tiny bit more aware of what it is like to be the mom of a child who spends WAY more time in a doctors office that the rest of us can comprehend.

  2. Erica J Thiel // June 1, 2014 at 9:34 pm

    While not a parent I so understand the last paragraph, experienced this very thing in a slightly different setting 2 wks ago, in a setting my nephew has been in with me dozens of times in the past 3-4 years. I also after getting out to my car broke down in tears, not at Zander but at what I could only imagine where people’s blind opinions and probable cruel words (it was a small Church event following closing Sun School class and Church so I also should have known better than to expect Zan w his High functioning autism to be able to tolerate a 3rd subsequent event with many people. He had done so good at the 2 previous sometimes I just forget there is autisms ugly rearing head and only look at Zan as Zan though.
    I am glad you guys made it through the day and know it doesn’t really matter what those other people thought. People need lessons in compassion, not judging and in understanding!

  3. I came over from Casey’s facebook page. Wow, it’s so unbelievably difficult. My son has a language disorder, but really it’s borderline PDD-NOS. Last year we had to have a cavity filled. Sedation meds did nothing. I was so sore the next morning from holding him down that I could barely get out of bed.

    I can’t even imagine throwing physical challenges in on top of it all. You are a brave and ferocious mama. One of the chosen ones. It sucks to be chosen, but here we are, huh.

    God bless you and your precious little boy.