At first, I wanted to run when my mom gave me the news that I didn't want to hear. "Trenten has Duchenne muscular dystrophy"... In my 20 year old mind I truly thought that if we didn't talk about it then it wouldn't be real. That is simply not the case, how young and naive I truly was. Hearing those words cut me so deeply and changed me in ways that even 10 years later I still don't fully understand. Telling Mike the diagnosis of his first child, his first son was by far the hardest thing I've ever had to do(well besides admitting to myself that Trenten has DMD). You know immediately your dreams and hopes and visions are shattered on the spot. We were devastated, we couldn’t comprehend the fact that our son, our nephew, our grandson, our perfect little miracle would end up in a wheelchair and his life would be cut short. But that’s only part of it, and I’m beginning to realize the actual reality of this disease.
Duchenne Muscular Dystrophy (DMD) is not only the most common, but also the most severe form of MD. DMD affects approximately one out of every 3,500 male births worldwide, (and, more rarely, can affect girls) who cannot produce dystrophin, a protein necessary for muscle strength and function. As a result, the skeletal muscles in the body gradually deteriorate over time. While two-thirds of DMD cases have a family story of the disease, Trenten is among the one-third who have no such history.
Many people incorrectly assume that a child with Duchenne will lose the ability to walk, and nothing else. But nothing could be further from the truth. The reality is, Duchenne affects pretty much every single part of their body. Think about it – there are muscles in our legs, our arms, our torso, our neck, and of course our heart and diaphragm are muscles.
There really is no way to sugarcoat the reality of Duchenne. It sucks. Big-hairy-balls-kind-of-sucks. It’s not as simple as just never being able to walk again – if only that was the case. It affects everything, from the way our kids live their lives, to the extra care needed by us (his parents). It affects our family financially, emotionally, and mentally.
Mike and I never asked for Trenten to be afflicted with such an insidious illness, and Trenten most certainly never asked for it. And yet here we are, having to figure out how in the world we are going to pay for expensive medical equipment, breathing machines, air ventilation units, modifications, wheelchairs, accessible vehicles, treatment, and therapies, many of which we don’t receive funding for. Our son will eventually need a bed that turns him throughout the night, a bed that we will probably never be able to afford as they cost tens of thousands of dollars. Trenten needs a wheelchair-accessible vehicle, and they don’t come cheap. Nor do the modifications on existing vehicles. We recently had our van modified and it cost $22,000!!! Most families don’t have $1,000 lying around, let alone $22,000. And yet we figured out a way find that money just so we can transport our son from one place to another. Next is a handicap accessible house and I have absolutely no idea how we are going to pay for that and it terrifies me.
I think one of the most heartbreaking aspects of having a child with DMD is the affect it has on Trenten and the rest of our family. Gone are the normal family activities, like bike riding and hiking and snow skiing . Partaking in any of those activities would mean that Trenten would have to sit out and watch or stay home, it's just not fair. Trenten is now 12 years old and is fully reliant on his wheelchair. Which is more than he was even just a year ago. It won’t be long before it will all be too hard and that is a really scary reality that we as a family are faced with daily.
It’s often difficult for extended family and friends to understand the difficulties in our lives compared to theirs. I think it’s safe to say that anyone who doesn’t change when hit by something like DMD is both inhuman and devoid of all emotion. I have changed, I’m not the person I used to be. I miss the person I used to be, but I know I will never see that person again. Whereas I used to be happy and carefree, now I’m just scared and sad. And I’m on a mission to give my son (and my other 2 children) the best life possible, even if that means upsetting others in the process. I’ve learned that life is not a popularity contest, but I’ve also learned that life is short and uncertain, and time is too precious to waste. Even though it’s reported that kids with duchenne are living into their twenties and thirties, that seems to be the minority. The fact is, many kids with Duchenne are dying while they’re still kids.
Duchenne means a lifetime of doctors, medications, appointments, school struggles, expenses, and heartbreak. It puts mothers and fathers under stress that no marriage should have to try and survive. It means siblings get left out, pushed aside and ultimately left behind by their brothers illness. Duchenne alienates family members and rips apart friendships. Duchenne hurts, both physically and emotionally. It is a backache from too much lifting, and a headache from too much crying. Living with Duchenne means heartache, helplessness, fear, and grief. It is a lesson on patience, acceptance, and loving even when it’s hard. And it gets breathtakingly hard, for all of us.
So if you are a family member or a friend of ours, please try to remember what we going through. Please remember that we need your support, and we need your love. Most of all, we need you there when times get especially tough or overwhelming. Please don’t judge us, and don’t put such high expectations on us, and please try to show both understanding and compassion. Let this blog be a turning point for you, so that you now truly understand what “living with Duchenne” means and use your knowledge to make a difference. And never, ever, ever make us feel bad because we’ve changed and are no longer the people we used to be. The more understanding and support we have, the more awareness and funds we can raise, and the faster research will progress. And the easier our lives will (hopefully) be.
Until next time...
Jeri
