Living Duchenne: My Year in Review


Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, Living Duchenne.

Living Duchenne: My Year in Review  

Well, it seems that 2012 was not the end of the world. But it certainly tried its best. It was a year of drama. Or maybe it was a year of melodrama, real drama's poor cousin, who tries so hard to look big and important at the beginning but whose efforts always manage to fail to impress. Melodrama is what happens when a crisis lands unexpectedly in your lap and then mostly evaporates even as you flail around trying to fling it off. Melodrama casts a shadow much larger than itself and irony lurks around in it, waiting to jump out and yell "boo" as soon as you're not looking. Melodrama always leaves me with a kind of aftertaste of something plasticky and sort of fake. It's like a personal, non-public hype. It swoops in, seemingly to no purpose, while irony leaps out to have a laugh at our expense.

On New Year's Day of 2012, as my sister was wrapping up a nice long visit at my house, we got a crisis that kept her with us until June. We spent the coldest days of a warmish winter tending livestock and trying to get the police to do their jobs. Well, at least the livestock fared well. We nursed those four horses back to health and found them all good homes with honest people. We met some really nice veterinarians and some helpful sheriff's deputies who couldn't, in the end, help very much. The horses mainly needed grain and consistency. I still don't know what happened to the crooks who had defrauded my parents and abused the horses. On the other hand, I didn't really want to know more about them and the law has bigger fish to fry. Sometimes a fizzle is a good enough way to end.

With that crisis settled, it was clearly time to move on to the next one. Since no single catastrophe could top a combination of livestock and criminals, our next situation involved a mixture of showing our house on a local charity homes tour, public speaking, and a badly sprained toe. I got some crutches and wore my flip-flops and spoke about Duchenne. Folks listened very politely and some of them may have even sympathetically donated a few dollars toward Duchenne research. We raised some money for the local charity that runs Rain's Medicaid waiver support. There was a lot of "oh, you live in that house!" and a small uptick in drive-by architecture tourism. There was no uptick in actual clients for Scott's architecture and design business; it wouldn't have been ironic. Scott filed his paperwork to close the business a little later in the year and immediately had two good client prospects.

Then it was summer. Our whole state, nay the entire region, went up in flames while the bordering areas suffered under parching drought. In order to accommodate others, we did our family road trip in reverse order from the way we had planned, with the fun stuff up front and the dutiful relative-visiting and unbroken three-days' drive at the end. Though, in fact, our relative-visiting turned out well and we were grateful to have a increased sense of mutual respect and connection from it. 

It's another of the unlooked-for gifts that Duchenne has brought to our family. When we sit down with Grandpa Tom, Scott's father, an amazing transparency, a kind of everyday-mystical layering becomes visible. Grandpa Tom simultaneously sees Rain as he is, while seeing his own little baby, Scott, as a grown father. And not just a grown one, a good one. And he sees Scott's big brother, Marc, who had autism, and the whole arc of their relationships together. Scott and Marc, as they are and were, Rain as he is and will be. Scott as a parent of a son with special needs mirroring Tom as a parent of a son with different special needs making different choices in a different world. Layers of unspoken respect and love seem to drift down out of the tree-filled sky while Rain quietly plays amongst the scattered acorns and moss or sits, very still but very snugly, on Grandpa's lap to hear a story. And Grandpa turns to Rain and calls him "little buddy" in a voice so full of tenderness and care, and turns his eyes up to Scott for a moment, full of old grief and regret and pride and concern and a love so deep it takes my breath away to see it. We are lucky in this moment and grateful. Rain brings a deeply healing spirit into our family while seeming sweetly and completely unaware of the grownups' deeper currents. I feel so blessed and lucky just to stand on the banks and watch the waters wash by my men.

And then autumn was upon us again with the busy meaninglessnesses of school and schedule and rushing here and there like squirrels before the first snowstorm. I was diagnosed with an obscure and very scary sounding autoimmune disease. They told me that there was nothing they could do for me except to give me steroids and that I should go home and cope. Irony just couldn't resist stepping onto the stage before her cue and chuckling maniacally. So I freaked out and lost a little weight and got a bit depressed and saw a lot of doctors for a while. And then my doctor said that really my fears were overblown and it probably wouldn't make much difference what I did so long as I was able to muddle my way through daily life. So I gained back some weight and didn't take steroids and another big, scary crisis shuffled its way out of the limelight and became just another shadow in the receding dimness of melodramas past. It didn't really amount to much after all.

After that, my brother-in-law, who is much older and more experienced at these things than I am, went into the hospital one night in early December. He has had, for a few years now, a kind of cancer which has eaten his entire immune system despite his best efforts to get by on the bones of his old good health. Paul remains in the hospital to this day, having undergone a leg amputation, every kind of antibiotic known to man, frequent dialysis, and daily PT. He celebrated his 60th birthday in the hospital on New Year's Eve. 

And so, 2012 is swept into the wings and the stage is cleared for another exciting year. Since our house is accessible and Scott's office is available, we're hoping to make it into a temporary apartment for Paul and Laura to stay in when Paul is released from the hospital and while their house is renovated for accessibility. Paul is getting used to his new status as a person with a disability. When his nurses ask him what he'd like, he tells them that he would really like "a million dollars and a pony." Well, he knows that a million dollars is not possible for our family. And a pony is out of the question. Last year started with a pony (or three) and you see where that got us. I'll set him up with Rain's therapeutic riding center. Membership has its privileges but a pony is going too far.

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