I’ve been inspired by Jen. Her son was relatively recently diagnosed with Hunter’s. And in hers words, it’s not getting easier. Everyone told her it would get easier, and it’s not. I’ve been thinking about her so much, that I’ve been inspired to write a blog. Thinking back to our experience, Simon and Marie Ibell were our first glimmer of hope. As I’ve mentioned before, until then, I was drowning. If you’re the kind of person who wants children, when you start getting closer to the time that children will be a reality, you think about it a lot. What you want to do with them, what your parents did with you, how you want to do this parenting thing, your hopes and dreams for your child… your hopes and dreams. So this thing, your hopes and dreams for your child, start happening longggggg before your child is ever born. My initial hopes and dreams for Trey were smashed so long ago that I can’t even remember what those were, so I will use Avery or Sadie as an example. The second music goes on, Sadie is dancing. In the van, she screams for music until it is turned on, and if it’s not loud enough, she screams for it to be louder. So, I picture her as a dancer. Avery LOVES Roald Dahl books, all the word play, and he is very very intellectual, so I have pictured him as a lawyer (very good debater too :)), an actor, a writer, and so on and so forth. Ahhhhh, I do remember hopes and dreams I had for Trey. He is such an awesome athlete and was so coordinated from such an early age, we pictured him as some kind of athlete. Those are just a few examples of the hopes and dreams and wishes I have for my children.
Then you get told your kids has MPS. What? What does that mean? Their hands will curl and claw (so much for volleyball and hockey), their bones won’t grow properly so their growth will be stunted (so much for basketball), their heart will fail, they may become severely mentally impacted and their airways will fail, which is usually how they die. So much for life. That is when you want to curl up with your child and die with them. There is no hope. No reason to live. All your hopes and dreams are gone. Completely. So where do you go from there?
I don’t know how we moved from there, really. I think it took a long time and I don’t know how it happened. Time, maybe. Thoughts about Trey could make me so hopeful and so depressed at the same time. I love him, so every little thing he does is brilliant. The first time he makes it to the top of the playground structure by himself is so exciting, the look of pride and happiness in his eyes. His first steps, first words, setting the table for dinner, learning to pee on the toilet, reading a book with him when you can see in his eyes that he just made a new connection, or hearing him say a new word for the first time, etc etc etc. Those gave me a reason to live. But the very second those excited, life loving thoughts came into my head, other thoughts, negative ones, which weren’t there before the diagnosis, popped right in there with the good ones: “How many more milestones is he going to reach? That other kid who is younger can already do it, is Trey falling behind? His brother can already do this. Is Trey’s brain affected?” Before, when Trey was first diagnosed, those second, negative, thoughts flattened me. Like deflating a tire. We’d be at the playground or on a playdate, trying to have a good time, Trey would do something exciting or cute, and as soon as the second thought popped into my head, my whole mood would be ruined. All my thoughts were consumed by fear. And since those kinds of moments with Trey happened regularly, I spent most of my days filled with fear, depressed and void of hope.
Then I spoke with and met Simon and Marie Ibell. I was so excited to meet them, I had to calm myself down before walking into the coffee shop. Others, who knew about MPS and had met Simon and others affected by MPS warned me. He’s shorter than other people and has a different, distinct look. Yeah, they were right. But none of that mattered. Simon was a living and breathing adult with MPS II whose mum had been told 6 times that her son had less than a year to live. Simon had a University degree and held a job and was genuine and kind and wonderful. Simon was hope wrapped up in a person.
I held, and still do hold, onto that. Simon. I also held onto the words of a close family friend. I can’t explain it, but he has a connection with Trey. He is also just this wonderful man and father and person. It just feels good being around him. He told me that he believed we would have a couple of rough years, but we would be okay after that. I had no idea what he meant. ERT, treatment, wasn’t a few years away (it ended up being only one). Nothing big, no huge information was a few years away that could change our lives, and it wouldn’t take that long to adjust to diagnosis. I didn’t understand why he said a few years, but I held onto his words. I’ll never forget them. And they’ve come true. It was a few years.
I read books. ‘The Power of Your Subconscious Mind’ was one I held onto. I watched ‘The Secret.’ I have a dad who, when you call him in the morning and ask how he’s doing, he tells you: “11/10.”
But it has been hard holding onto hope. Doctors have crushed our hopes. MPS “experts” have told us to go home and enjoy Trey’s last years because he has a severe form of Hunter’s. Experts. They have no idea how much power they wield over parents’ fear. For me, it’s been about pushing the BS that some have doled our way out of my mind. Permanantly. And that has not been easy. I recall one day my dad noticed I was elsewhere. I was in my head somewhere else, not playing hockey with my kids like my body was doing. He asked what was up and I told him that some doctor had said something (I can’t even recall what I was told in this instance this has happened to me so many times) that scared me. I was in the middle of bringing myself back to wholeness, peace, harmony, believing in Trey.
When Trey was first diagnosed, finding the peace and harmony… making this world a safe and okay and even enjoyable place to live in didn’t take moments. It took monthes or even years. Now I still have moments of fear, as I mentioned happened with our osteopathy visits back in December, but I am able to bring myself back from fear far quicker.
So Jen, I don’t know how to do it. I only know what worked for me. But I do know that it started with Trey. That beautiful brilliant wonderful little guy who I believe is going to reach for and catch the stars. Just like Simon did.
