We're in need of some Superheroes!
Guest post today! I asked my friend, Ric, to share with you her son, Brody, and their journey with Duchenne muscular dystrophy. If you are unaware of Duchenne, here's a snippet from the Parent Project Muscular Dystrophy website:
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.
My Internal Battle of Hope and Reality
In college, a professor once told me that writing was not my strength at all and that I should communicate in a different way. So, whenever I am asked to write something I get a pit in my stomach. There are so many eloquent pieces of writing out there that it doesn’t seem worth trying to measure up. So this is my disclaimer that I am not trying to be a writer but share with you a perspective of my life…today. You see, that brings another problem. My perspective on my life, children, marriage, family, work, friendships, etc. can change daily. Although there may be an overall prevalent feeling, my emotions vary from day to day with even the exact same situations. So these are my thoughts as I sit at my desk on my lunch break with an enormous amount of work surrounding me.
Monday: I am grateful to wake up in the middle of the night to take Brody to the bathroom. It would be so much easier to put a pull up on him but he so much doesn’t want to wear them.
Tuesday: I am grateful there is enough medication in every prescription and supplement bottle that I do not need to call a doctor or pharmacy for refills. It would be so much easier to have them all run out at the same time.
Wednesday: I am grateful that I did not make it half way to my own school to realize that I forgot to take his wheelchair out of my car last night and he won’t be able to get up the stairs of the bus or have it for school. It would be so much easier if we had a backup chair for my forgetfulness.
Thursday: I am grateful that Xbox exists when the weather is nice and my other three children are outside riding bikes and playing tag. It would be so much easier to live somewhere cold year round so that outside play was not an option.
Friday: I am grateful that Brody’s great teachers allow him to invite a friend to play computer at recess so he is not at risk for injury on the rowdiness of the playground and so grateful that all the kids want a turn to hang with Brody. It would be so much easier if there was a way for him to be out there and not just sitting and watching kids run around.
Saturday: I am grateful that Brody woke up without red marks or abrasions on his feet from his braces rubbing the wrong way even though his feet are sweaty and stinky. It would be much easier if braces could be stiff enough to hold the stretch but flexible enough to provide wiggle room and not hurt his skin.
Sunday: I am grateful that there is research being done to try and find a treatment or cure for his terrible disease. It would be much easier of there was even one and if it would come fast enough.
And EVERY day, I wake up with my heart filled that Brody woke up too when so many other kids with Duchenne did not. My heart breaks knowing that I will be part of that subgroup one day...again. I know what it is like to lose a child already. Coffins should not be made in “smaller” versions.
And EVERY day, I am grateful for this amazing life I have andknow there are so many people less fortunate than me or my family. There is always a “it would be much easier if…” in every situation but life is not easy! The greatest and most valuable lessons I have learned have come from difficult decisions, tragic events, unexpected friendships and love, the kindness of strangers, and unanswered prayers.
My sweet, red-headed 8 year old son was born with a terminal disease with no cure, no treatments, and no standard of care. The internet told me to be prepared to watch every muscle in his body degenerate and to spend my time loving him before he dies. And yes, I know “life is terminal”. Many people remind me that “none of us know when we are going to die”. I am really never sure how to respond to that except to say how I feel. I have 6 kids (1 in heaven). Why I feel like I have to qualify the “six kids” statement is a whole other topic for another day. I don’t worry when my other kids fall and scrape their knee that they may have broken a bone that could prevent them from ever walking again or cause a blood clot to get loose and kill them. I don’t worry that my other children won’t fall in love because they won’t be able to even hug their significant other if they were lucky enough to find someone who was willing to overlook their significant physical and medical challenges. I don’t worry that when my other children throw up, that they are actually going into heart failure earlier than expected. I don’t worry that when my other children are sleeping in that they may have passed away in their sleep. And I am not naïve; I know some tragic accident could take one of my other children, I have read My Sister’s Keeper.
The reality is that Brody will probably never get to experience driving, proms, graduations, getting married, children, jobs, or other major life events. Although, there are some DMD boys that have experienced some of these things, there are so many that have not. What I “naively expect” for my other children, has become a daily internal battle of hope and reality when it comes to Brody. There is hope in turning on Facebook to see a handsome boy with DMD in his wheel chair in his cap and gown. It makes me wonder about what it took to get such a great picture. Do they have to have a special cap and gown that won’t be too long to get caught in the wheelchair but still be long enough to look right? Did they have to bobby pin the cap on extra tight because he won’t have the arm strength to raise his arms to straighten it if it starts to fall? Was the venue that the school chose to have the graduation handicap accessible for all parts of the ceremony or what special accommodations had to be made ahead of time so he would look as normal as possible? There is extreme happiness that their son woke up that morning, alive, for his graduation day. And there is extreme sadness because that same Facebook feed of my recent posts for the day shows a mom sitting next to her 8 year old son’s grave.
I think that I remain pretty positive overall. I am a laid-back control freak. I love to laugh. I love to love. I strive to choose the perspective on most days that leads me to being grateful, happy, fulfilled, loved, and even lucky! I have most definitely been lucky enough to win the lottery when it comes to the people I have in my life, the opportunities I have been given, and the memories that I’ve made. I can tell you this…there is never a day that I would be willing to trade my incredible life!
Support Brody & his family by joining them Saturday, June 8!
Brody's Superheroes 5k run/walk
June 8th at 9:00 in West Chester
go to http://brodyssuperheroes.org/ to download a registration form
* Registrations received by May 25th will guarantee a t-shirt for the
event. Registrations received after May 25th until the day of the event
will likely get a t-shirt the day before or day of the race but will
definitely get one after the race if we have run out.
For more information about Duchenne or to make a donation visit http://www.parentprojectmd.org/