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.
Tears. Tears. Beautiful entry. xo.
precioso… una situacion muy real
Deb I am glad this mom got to talk to you!
hi deb, i read you words and i feel like their mine.
i’m caroline, 35, mom of Milo 3,5 and Noé 21 month.
Milo is probably MPSII, we’re waiting THE phone call, but it’s been month that we are searching what is wrong with Milo, an Doctors tell us that he has MPSII.
They don’t think that Noé is concerned.
I’m french, so i’m already sorry for my english!
in our hell we ar lucky because in France you don’t have tou pay anything, even the travel to reach the hospital.
and i leave very near Paris so it takes 30 minutes to reach the hospital Milo will received ERT.
I see positive things where I can…
My days are wird, sometimes I feel invicible and sometimes I don’t know how to stay on my feet.
Sometimes i’m angry, sometimes I’m sad, sometimes I’m happy but I’m always fill with love when i see my sons.
when there’s love there’s hope, I think
I read a beautiful sentence and I try to translate, it says: ” you have to add life in your day when you can’t add days to life”
thank you for your blog, when I see Trey I feel better
Au revoir!
Caroline
Hi Deb! My son Mikey born on Feb 23, 2004, was dx May 2008 with Hunter Syndrome. When I first heard the word “Mucopolysaccharidosis” I was told by Genetics not to go looking for information until the blood work came back. However, I couldn’t help myself! I learned about your family at the first click! Trey and Mikey born days apart from one another and Mikey had simular facial features, blonde hair, larged head, same noise… made me want to know more about my son since I always thought it was autism! My husband and I cried for days and weeks until we found out what type. We all have been on the emotional roller coaster a few times. What a great MPS families we supportive, caring, and completly understand HomeLIve! Thank you for being such a strong women and having the Courage to keep pushing forward for Trey Sake and all our MPS children! Wishing for the best out come on Trey’s life journey with MPSII! “Everytime we have Taco’s I think of Trey!
Indeed, Deb! You’ll never be alone because you’ll always be surrounded by friends!!! We are your friends!
I understand this. Not sure what your beliefs are about God/no God, but I always felt that it was not God who gave my child his multiple disabilities (because no God could be so cruel), but after it happens, we have a free-will choice on how to respond. You become a conduit for your son’s higher purpose–to help others. For those who have a similar condition as your son’s, you are a source of support and advocacy. For others, you make them hold their children tighter, blessed for the things they don’t have to face with their kids who at the present time are only facing normal day-to-day challenges.