Our son was diagnosed with DMD 5 1/2 years ago. A lot has changed since then - some things for the better, some for the worse.

Reading the forum, and seeing stories from new parents still brings a lump to my throat, and brings the memory back of the day our little boy was diagnosed......

Of all the things I remember most about that day the one thing that stands out was the feeling of impending doom, and the sudden quiet that fell upon our lives. So many websites were full of sadness and despair, and I seriously wondered if I would ever laugh again......

So I thought I would start a discussion for people to reflect on the positive changes that have occured in their lives as a result of their child being diagnosed with DMD (seems really bizarre to type that) so we can show parents that have just received the diagnosis that there are days when the tears streaming down your cheeks are from joy not sadness........

For me the biggest thing I am grateful for is that DMD made us all slow down and smell the roses. Had it not been for the diagnosis, I would still be working in HR doing 65 hours a week. A daycare centre would be raising my son, and I would have missed out on some of the most wonderful moments of his life.

I have learnt more about life and living in the last 5 years than I ever would have known had Mitchells fate been different, and I have met some amazing and inspirational people in the process (miss you heaps Pat).

My family are now used to coming over and seeing a mountain of washing in the laundry because I had way too much fun playing with Mitch on the playstation and forgot about the housework .

Were it not for Duchenne I would never have found myself being towed around the neighbourhood on rollerblades - by a ten year old determined to see how fast he has to drive down kerbs before I lose my balance and fall over......!

I have seen who my true friends are (the ones that bring you chocolate and coffee at 11pm when you are sitting by your childs bedside in hospital - or stop by at lunchtime to keep your son company so you can go home and freshen up)

But most importantly, I have seen how strong and brave my son can be when the odds are stacked against him. He smiles in the face of adversity and has tolerance and patience that is way beyound his years. (Sometimes when I dress him in the morning I am tempted to put his undies on the outside - because that is the dress code of all super heroes.)

So many people run through this world taking family, friends and their children for granted and I would have too had it not been for Duchenne.

So when we have days when Duchenne has got us down, I sit back and remember all the positive things we have learnt since Feb 2003 and try with all my might to flip the coin...........

Views: 177

Reply to This

Replies to This Discussion

Thanks for sharing this. Yesterday was one of those sad days for me--not for any particular reason, just a day where his diagnosis and prognosis got to me more than on other days. So as one who is recent to this world of DMD, I greatly appreciate hearing the positive and knowing joy is out there--I just have to open my eyes and my heart to see it!
I have to agree. It was only 9 months ago we received the diagnosis. Lately I find myself, while rocking Wyatt to sleep, with tears in my eyes. Just thinking of the future gets me down, it's is so hard to think of what is to come, when he is still so little and has so much left to live. Thanks for starting this, it will be nice to read about the other side of the coin.
Hi Julie,

Well...you know in parts of the "good old US of A" we have at times (no offense intended) referred to you aussies as "a little crazy". Looks like you are quite sane. And, you are maintaining sanity while swimming in the nutzoid world of DMD!!

You are an excellent example for those of us just beginning this journey.
Thank you for reminding me to smell the roses while I learn my way,
Thank you Julie,
that was very well put. It is something we all know but sometimes forget. Tomorrow when my boys (5and 6 DMD) are wrestling I am going to sit back and smile, maybe even take some video instead of screaming at them to stop and keep hands to self because all to soon I am going to want to give anything for them to be wrestling.
Thank you! tomorrow will be a roses day!
I am not a parent of a child with DMD, I have the disease myself. I'm 23 years old. Your post really spoke to me (almost literally) since my name is Mitch just like your son :)
These moods I find switch so fast that you can't even prepare for them. The positives in my life are their attitudes about their life, they know they are loved more then alot of children. The thing that really helped my boys was when they got their own power wheelchairs, now they dance, by spinning, we still take bike rides and with Dad in front Joshua and Justin in their power chairs fight for the first position the whole ride and Mom in the back making sure they ( the boys with their wheelchairs ) don't act like Dale Earnhart and believe me they will hit wheels and try to push ahead of each other it is so funny to watch. They act like they have not a problem in the world. I tell them things like you already have their drivers liscense and most boys have to wait until they are 16. Before these power chairs they wouldn't ever go outside and now they like to stay out there. They are the most positve people I know. I would not trade my life with anyone. I feel blessed to be able to raise these children. God will heal them all one day.
I loved this post Julie. I especially loved the part about ' being tempted to put his undies on the outside-because that is the dress code of all super heros'. That made me laugh and cry. Mitch is a lucky young man to have a mom like you, and you are a lucky mom to have a super hero like him as a son. My Baylor is definately my super hero. I think tomorrow I'll put his undies on the outside :)
Have a great day!
This is such a beautiful post!!!!! I too LOVED the part about the undies on the outside...my little 'superhero' changes identity daily...sometimes he's spiderman (and even attempts to shoot webs with disapointment when it doesn't work! LOL!), sometimes it's the Hulk, or Superman or who ever else is new. I get sad when he talks about his big super hero muscles, but it's not the muscles that make our little men strong...it's their big hearts and super attitudes.

The positive things:
My husband is even greater in my eyes and I appreciate him being my best friend.
Money and posessions mean nothing....who cares how big my house is?
Living life to it's fullest is NOW...let's skip out of work and school and do something fun! You want to go where this weekend? Let's GO!
I love that all those 'one day I want to' plans are in the making...
My family is #1...nothing else matters, nothing!
I think something we all are getting out of the whole DMD experience is the self realization that we are all made of something just a little more tougher than we thought. I remember I used to look at Mom's with special needs children and think to myself, wow, i could NEVER be able to handle a special needs child. It takes an exceptional parent to be able to meet the demands of children like that. But now I realize that it doesn't really take an "exceptional" parent, it just takes a parent who loves their children and realize that no matter what, their lives are in your hands and you have to do what you have to do to make sure they are taken care of. The "exceptional" parents are the ones who walk away...those are the parents that one must look at and ask "how do you do it?"
I definately believe my son having DMD has made a lot of positive differences in my life. DMD has made me a stronger person. DMD has drawn me closer to the Lord and I have learn to rely on the strength he gives me from day to day. I have met so many people I probably wouldn't have met if DMD hadn't struck our family. I am so thankful that we have each other here with the PPMD community and the MDA. My husband and I have grown closer. We have grown closer as a family in the immediate and extended families. Even though I hate my son having this disease, I am glad God gave us our beautiful son. He has given us so much joy!
You said it all. We do what we have to do, because of the love for our children. They need us.
and as far as the parents that walk away. I don't know how they can do that either?

You are so right about GOD being your strength, without him I could not do what I do either. He makes all things possible.
Thank You!! You have said it all.

Reply to Discussion


Need help using this community site? Visit Ning's Help Page.



© 2022   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service