#1 There Will Be Triggers
This is a big one for me. I’m a happy, optimistic person by nature. Not much gets me down. But there are times when I feel discouraged and it can be triggered by the slightest thing.
For years it was going to the park. I would get there and watch all the other kids run around and climb things without any trouble at all. A few years later, it was seeing how my son couldn’t keep up with his peers while playing games or sports. As he’s gotten older, my trigger has become watching his classmates grow taller. My son hasn’t experienced much of a growth spurt because of the chronic use of steroids needed to manage the disease. Year after year he just begs and pleads to be tall enough to hit the height requirement at our local amusement park. Year after year it is a struggle and all he wants is to ride the big roller coasters.
Going through that causes a hurt that you feel deep inside. When your child begins to notice , it adds another dimension of pain. A pain that you not only feel, but also ache to take away from them.
#2 Time is Precious
As Chris Jones, another Duchenne parent, so eloquently put it, having a child with DMD is like “having a baby made of sand.” The disease can progress at a fast pace, opportunities to make memories slip right through the cracks, and we know our time with them is finite.
When a Duchenne diagnosis hits, many parents turn to Google for answers, and immediately get slapped in the face by the brutality of the diagnosis. There is no cure.
When my son was diagnosed, the callous neurologist said to me, “Go home and love him.” Obviously, that’s not what I wanted to hear. I wanted to know that there was something I could do, that I could somehow stop time.
The Duchenne diagnosis has changed my entire perspective on life. Before my son’s diagnosis, I was the parent that thought, “Someday we will do that.” Now I seize any opportunity I have to travel the world, make incredible memories, and cherish the time I have with my son.
#3 You’ll Feel Helpless at Times
With a devastating diagnosis like DMD, there will be times when you feel helpless and even hopeless. You’ll hear all sorts of buzz regarding clinical trials that’ll get you excited and make you start to feel hopeful. You’ll wish with every fiber of your being that your child will qualify for the trial and that the medicine he gets will protect him from this horrible disease.
There will be moments when, instead of wishing you could undo the damage that’s already been done by Duchenne, you’d give anything just to stop the progression of the disease and be thrilled to accept things right were they are. The sentiment, “I wish I could just pause time and my son could be this age forever,” will take on an entirely new meaning.
It’s important that when you have these feelings, you allow yourself to feel them, to cry and even break down if you need to. Just make sure that you don’t allow yourself to stay down. Get back up and find something joyful to do with your child.
#4 You’ll View the World Through a New Lens
There is just no avoiding this. You are forever changed as a mother after your child is diagnosed with Duchenne. You will see the world through a completely different lens. If you have ever read, “Welcome to Holland,” by Emily Pearl Kingsley, it will resonate with you so deeply. If you haven’t read it yet, I urge you to spend a few minutes of your time to read it right now.
A Duchenne diagnosis will cause you to have, what seems like, an endless amount of thoughts, worries, and concerns running through your brain. If you happen to find out that you’re a carrier, like I did, there’s another level of guilt added that never seems to fade.
You’ll fight for a reason to hope for the future, yet have to make sure you maintain a level of realism. For the rest of your life, you will wish for a cure and that it will arrive in time to benefit your child. You will become an amazing researcher and find yourself teaching doctors about the disease.
You will fight. You will cry. You’ll show more courage than you ever thought possible, and you’ll hold your child a little bit longer. Just know, you’ve been blessed with an incredible child to learn from, grow with, and love.
#5 Learn to Live in the Present
As I mentioned earlier, my life perspective was a typical one of, “Someday we will do those things.” After the impact of the diagnosis settled in, my perspective changed to, “Now we will do those things.” DMD has a way of completely changing your life, typically for the worst, but causing me to reach this understanding was clearly a positive.
Now, we travel, live in the moment, appreciate the present, and understand that we won’t always have that opportunity, so we seize it while we can.
Tomorrow isn’t promised to anyone. Unfortunately, accidents happen and our lives can be changed forever. The same mentality exists with Duchenne.
We don’t know exactly how rapidly the disease will progress or all of the ways it will manifest in our individual lives. Let’s take advantage of each and every opportunity while it’s available to us. Duchenne has allowed for many more on-the-whim road trips and even travels around the world. We’ve met some phenomenal families along the way and I’ve been able to experience and appreciate my son for the amazing boy that he is.
As you get through each day, know that there will be triggers, challenges, setbacks, and days when you feel totally overwhelmed by Duchenne.
Take it one day at a time, Mama. You got this!
To read more or follow our journey, go to https://joyinjacksonsjourney.com/