I got a call today. It was a long distance call and I thought it was a telemarketer. I was about to tell this woman I was busy, when she said she’d read my blog and she had some questions about the IT trial. She has a son with MPS II. She wanted to know what effects I am seeing in Trey as a result of the trial. I told her what I’ve observed, as well as what other parents have reported and what tests have demonstrated in the kids in the trial thus far: stabilization, no further decline, IQ’s going back up, an improvement in behaviour and hearing… Silence on the other end. Then the sound of tears. Then more silence. Then an apology. I’ve become so accustomed to talking about the trial (and MPS), that I can talk about hydrocephalus, brain decline, clawed hands, enlarged livers, hearing loss, hearing aids, and the list goes on and on and on… that I don’t always remember the effect of my words. When this woman’s son was diagnosed, she was told her son was going to die. I just told her that there’s something out there that could keep him alive. I’d cry too.
It brought me back to all the other parents I’ve spoken with upon diagnosis. I’ll never forget the first time I spoke with DK, Robb, Jamie, Sarah, Jen. They contacted me when their kids were diagnosed. You get this call from someone you don’t know, often at an unexpected time, and within seconds, not even minutes, you’re sharing your utter breath-taking devastation and deepest fears. There’s no point beating around the bush because you’ve been there. Hell. And you know what it’s like. You can’t breathe, you can’t sleep, and you don’t know how or why to go on.
I’ll also never forget the first phone calls I made. I was drowning and grasping for anything or anyone to give me some air. Simon, Marie, Kirsten, Carolyn. I have made my share of calls, sobbing, because I didn’t know how to dig myself out of this deep deep hole.
I am glad this mum called me. It takes courage. And it gave me pause. I’ve posted many many times about my gratitude for this trial, for life, for Trey and my family, but this post of gratitude is for my MPS community. For answering the phone and listening when you didn’t know who I was. For sharing your story, experience, advice, and knowing, year after year. For making me feel I’m not alone and crazy. I love you.
The above picture is DK’s son Tyler. Beautiful.
