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But So Our Path is Laid….

September 20, 2013

“I don’t like anything here at all.” said Frodo, “step or stone, breath or bone. Earth, air and water all seem accursed. But so our path is laid.”
-J.R.R. Tolkein

I have been struggling lately. I don’t know how we got here. I don’t know how everything suddenly became such a dramatically uphill battle. But here we are, and I just don’t know what to do next.

Mary’s doctors are coming up empty handed. They all think it’s mitochondrial disease. Well, all of them except for the mitochondrial specialist, and that has to count for something, right? That new team of specialists I wrote about in my last post has discussed Mary’s case. Right now they can’t help us…. The exome sequencing is coming up with no solid leads…. I can feel the doors closing and the walls moving in. It’s as though I just can’t breathe.

Because if it is mitochondrial disease, then what? What happens to my baby girl if she has a degenerative and potentially fatal disease with no cure? And what of my older two? Do they have it too? What am I missing? Do I stand to lose all of them? You see, this is where my mind spins when I get into those dark places. The sheer terror consumes me, and then I try, I try so hard to reason myself out of it with science – with facts. The problem is that the science keeps pushing me down the same dark hallways.

Mary’s aide told me that she has had to do the heimlich on her multiple times during lunch at school. She is aspirating more at home, and snacks in the car have become largely off-limits. This feeding issue, swallowing or whatever, is getting worse. And now, she has started breaking her glasses again – usually a sign that she needs a new prescription. I’m hoping that this hasn’t worsened, again,as well.

She had another psych eval yesterday to renew her prescription for services. Because of the new DSM V, she received a new diagnosis – “severe autism.” Not just autism, not just PDD, but “severe.” Just words on paper. Just nomenclature. Just a means to an end. But to see it, written there, it still felt like a punch to the gut. I still think “profound” would be a better description, like mild, moderate and profound hearing loss. “Severe” just sounds so, well, severe….

Her new physical therapist showed me her testing scores yesterday. Apparently she is so far behind her “peers” that she doesn’t even register on the charts. This new therapist looked at me quietly and tried to lower my expectations for therapy. “It would take a jump of more than 11 points to measurably change her quality of life.” I looked at her, nearing a point of anger at all of it, “She needs this. Just do your job. She can do this. She needs this.” She doesn’t know Mary. She doesn’t know the road she has traveled. She doesn’t know the miracle working PT from Early Intervention who got her to walk when others cautioned she may never do it. She doesn’t know how determined my girl is. But, to her credit, she took me at my word. 24 steps, up and down, one hand on the railing; 2 full minutes on the treadmill, and one adaptive tricycle ride through the building’s hallways later, she returned Mary to me, completely exhausted and mid-meltdown. But you know what? She went back today, after having already had a PT session at school and worked just as hard with another PT, with a smile on her face. Determined and strong – that’s my girl.

Today friends started asking me again about how she was doing, have the doctors figured out the test results yet? I wanted to sound bubbly and optimistic. I wanted to give them an answer. But I had nothing. And when they pressed me, just a little more, I felt that same familiar knot in my stomach. “Well, what do you think?” one of them asked. I just don’t know the answer to that. The truth is, I think this is mito. I become more convinced of that each day. But what that winds up meaning for our family, I have no idea.

I came home today to find our new handicap parking permit in our mailbox. The local state senator took care of it for us, so I have it now, just one week after finally mustering the nerve to submit the application. I am grateful. Grateful that someone took the time and streamlined a beaurocratic process for us. We still had to have her neurologist sign off on the application, have it notarized, etc. But it’s here now, and it’s in my car, and it’s permanent. I am grateful to have it. Grateful that it will be a shorter walk to carry Mary across a parking lot. Grateful that I will have the extra space next to the door to pull her stroller up to the car. Grateful that there will be a few less lanes of traffic to navigate across with Joyce, given her seemingly constant near misses in parking lots. Grateful that it will relieve some of Troy’s anxieties about getting his sisters across said parking lots. But I hate it. I hate that little blue sign telling the world that my kid can’t handle the distance. I hate the looks I know I will get from judgmental folks who just don’t get it. I don’t want it. But my back can’t take another year of carrying a four year old, low-tone autistic child who barely supports herself while I hold her. And my son can’t risk his own life one more time trying to pull his other sister away from an oncoming car. So we will use it. But I will still hate it.

I’m still trying to figure out what kind of a tale this is. I’d like to think it will have a happy ending. That through sheer determination we will come out the other side of this as a whole family. That my kids will all grow up, happy and healthy. That faith and guts will get us through this. I have to believe that the darkness is temporary, fleeting. And that’s a whole lot easier to do when I can sit back and listen to Mary squeal and laugh at the mesmerizing reflection of her own hands in the shadows on the ground. There’s a lot of meaning hidden in that seemingly simple moment.

“Yes, that’s so,” said Sam, “And we shouldn’t be here at all, if we’d known more about it before we started. But I suppose it’s often that way. The brave things in the old tales and songs, Mr. Frodo, adventures, as I used to call them. I used to think that they were things the wonderful folk of the stories went out and looked for, because they wanted them, because they were exciting and life was a bit dull, a kind of a sport, as you might say. But that’s not the way of it with the tales that really mattered, or the ones that stay in the mind. Folk seem to have been just landed in them, usually their paths were laid that way, as you put it. But I expect they had lots of chances, like us, of turning back, only they didn’t. And if they had, we shouldn’t know, because they’d have been forgotten. We hear about those as just went on, and not all to a good end, mind you; at least not to what folk inside a story and not outside it call a good end. You know, coming home, and finding things all right, though not quite the same; like old Mr Bilbo. But those aren’t always the best tales to hear, though they may be the best tales to get landed in! I wonder what sort of a tale we’ve fallen into?”

“I wonder,” said Frodo, “But I don’t know. And that’s the way of a real tale. Take any one that you’re fond of. You may know, or guess, what kind of a tale it is, happy-ending or sad-ending, but the people in it don’t know. And you don’t want them to.”
― J.R.R. Tolkien, The Lord of the Rings

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4 Comments leave one →
  1. September 20, 2013 3:08 am

    I am praying for strength for all of you. Never stop believing and pushing. It is the only path. Sending you many positive thoughts. xo

    • September 20, 2013 3:09 am

      Thanks Karen. And thanks for setting a good example with that little blue sign. I was thinking of you when I had to get it. xoxo

  2. September 20, 2013 6:41 pm

    I am sorry things continue to be so difficult for you all and your sweet little girl. I wish I had some helpful words, I just wanted you to know I am here, listening.

    • September 20, 2013 7:58 pm

      Thanks Linda. It will all work out. She has so many people praying for her. Sometimes Mama just needs to blow off some steam. It’s good to have friends like you guys listening. Thank you. xoxo.

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