Three years – that’s a long time! I’m a neglectful blogger I admit. I’ve changed over the last five years since Liam was diagnosed. My words don’t come as easily as they once did, and sometimes putting things down on paper (or in this case online) brings a stark reality to what’s going on. I used to be quick with a joke or clever reference. I feel harder now and find myself emotionally isolating from friends and family often.
I’m constantly reminded by my kids and husband – this is happening to all of us, not just me. There’s strength together.
Finding happiness
I’ll start by saying Liam is happy, more or less. He’s still a goofball who loves to dance, even if he can no longer do it on two legs. He plays computer games like Roblox, is really great at impressions (you have to meet frat boy Kyle), and loves to make jokes. He’s still a Lego fanatic and I admit I overbuy that stuff because someday he won’t be able to build anymore. I’ve had to back off because I’m literally putting us in debt trying to give him everything.
We are doing more arts and crafts and even playing board games. Battleship is his favorite. Liam and I also sit in bed and share funny cat TikToks. He’s obsessed with cats ever since we adopted Sage.
He’s really a funny kid – he makes these crazy faces (where’d he get that from) and gets the giggles if anyone farts. Every since he was a baby, we’d talk about how much laughter he brought into our family and he absolutely still does!
He doesn’t have very many friends and spends a lot of time with Collin and me. He deeply dislikes school but the school says he does have a couple of kids he talks to during the day. Liam still calls me from the office every day begging I pick him up.
We don’t really get invited to birthday parties anymore or any other activities with other kids but the kids do show up to his birthday. For that I’m grateful. Shoutout to one mom (won’t call her out here) who always invites Liam and reaches out to me to ask how he can be included and supported. It’s a big deal to us.
Liam turned 11 in September.
Rolling with the punches
Everyone prepares you for your kids first step, no one prepares you for the last.
Liam lost his ability to walk this year. He can stand for a few seconds to use the restroom but not without support. He has a very nice electric wheelchair thanks to the folks at UMass and Children’s Legacy who for months worked on our insurance to make it happen. (His first chair was generously funded by some amazing people.)
With that, we’re seen a drastic increase in OCD – as they lose control of their body, they want to control other things, a very dumbed down way to describe what’s happening. He asks lots of questions and is becoming keenly aware of what’s happening to him. (We are chatting with his doctors about therapy). I can’t imagine having all that boy energy without being able to exert it. Unfair, that’s the word for it.
We redid the bathroom so he has an accessible shower and he can actually fit his chair through the door. We are in the process of getting a lift and a stander. (Insurance denied the standing function for his chair of course).
Trials and tribulations
After nearly a year and a half going back in forth to Arkansas we dropped out of the trial. To once again over simplify something medical, it just didn’t work. Plain and simple. My Dad was a godsend during this time, staying with the older kids so we could go together. We did live it up in Arkansas- staying at beautiful hotels and enjoying amazing dinners – thanks to the trial. We were actually regulars at some spots in a town we didn’t live in!
We also had an incredible care team in Little Rock who adored Liam. I feel lucky Houston didn’t have a spot for us. Arkansas Children’s was doing the same treatment but it’s was definitely less trafficked there and easy to access the hospital. We also switched to home care towards the end, and the nurse was lovely.
We always keep our sights open to trials. I’m more wary now though because Liam’s quality of life matters. Years of being devoted to a trial can be incredibly taxing. We’ll continue to look to our medical team for the right course of treatment and possible trials. We continue to go to Dr Wongs every six months and will continue as long it’s feasible for us.
Ohhh and we did get to Disney with Make a Wish this summer! I’m going to do an entire post on that!
Life isn’t always easy
I won’t divulge my older kids business too much, but Sam definitely struggles with what’s going on and we’re doing our best to support her. She’s a fiercely strong, loving sister who’s always taken care of Liam. You can only imagine what she’s going through. Logan treats Liam like any other little brother and doesn’t get too caught up in the future. He’s very present minded, a gift I wish I had.
Collin and I are surviving, going through the motions. Sometimes it feels so disconnecting moving on with this dark cloud constantly hovering. It will catch me off guard during the day or in the middle of the night and it’s like the wind is knocked out of me. But I gotta swallow it down and be tough for my family. I do break sometimes but try to stay busy doing stuff for them and with them.
Wrapping up
I feel I’m not as active as other parents with fundraising, setting up a foundation, updating this blog. Work is very busy but our needs are growing beyond our finances. I’m thankful every day we both have good jobs as I know other families only have one working parent or are single parents juggling all of this alone. But I plan to carve out more time for this stuff to support Liam and all DMD boys.
Actually wrapping up this time. We pray for a cure every day. We pray for our miracle. We pray for guidance to the science and medical professionals searching for a cure. We accept all prayers, good thoughts, warm energy for our son. I’m a Christian and trying to understand that part of me again but my faith definitely falters with the unfairness of this disease. My faith is mine and mine alone and not up for anyone’s judgment and that’s the same respect I give everyone in my life. We don’t discriminate and hope the united power of all voices will support our son and all boys suffering from DMD.
Woah that’s a lot of words. I need a nap. Bye for now but not three years.
The Liam Impact 