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: 114

Reply to This

Replies to This Discussion

Yes, I wish DMD had not become part of our life, but like Garth Brooks says: "I would have missed the pain, but then I would have had to miss the dance"

When we found out about Roland having DMD 6 years ago we recognized that this was the plan God had for his life. The road has not always been easy, but it has drawn us closer to God and closer as a family and that makes the road easier to travel.

We have been blessed so many ways because of DMD. My husband had been working out of town prior to us finding out about Roland. While we were going through the testing he found a job at home and was very open with them about the possibilities we were facing. They told him they were a family oriented business and taking care of his family would be supported. We have been so blessed by his company - anytime he needs off for Doctor visits, Make a Wish Trip, Field Trips or anything to help Roland, all he has to do is ask and they are fine with it and he has never lost pay! What a Blessing it has been not to have to worry about time off.

Our Church Family has been a great support system for us. Their prayer and encouraging words makes our road easier to travel. They also Blessed us by raising the money and providing the labor to add on to our house to provide Roland a huge bedroom and bathroom which had made our life so much easier. God is very important to our family and how can you not smile when you see Roland sitting in his wheelchair at church singing Praises to God.


We have also been blessed by a great School. I am an Early Childhood Teacher and my campus was a great encouragement to me especially in the beginning as we faced DMD. Not only my campus but our entire School District has supported Roland my raising money for MDA every year when we have our walk fund raiser. Our District of about 1500 students has raised nearly 15,000 in the past 5 years.

This year the High School football team gave Roland a jersey and invited him to sit on the sidelines at the first football game and that is where he spent every game all season. It was such a blessing to watch the High School boys come off the field and High Five Roland and see the coaches making a point to talk to him before and after the game. What other 4th grade boy has ever been a part of the High School Football team? When Baseball season came around, Roland got really involved with it also and we were able to follow our team into playoffs, even though they did not make it real far. At the end of the year at the Athletic Banquet - the Athletic Director recognized Roland as their Number One Fan. That was a very proud night for Roland. What a blessing it is for us everywhere we go to see kids of all ages recognized Roland and say Hi to him. He knows he is Special., even though he is shy and doesn't always like the attention from people he does not know. LOL

DMD has made us slow down and enjoy life more. Yes, we stay busy but it is doing things we want to do. We recognize the importance of doing things as a family and making as many memories as we can. It has helped me learn to not worry about the small things. It drives me crazy sometime to see people get so upset over little things that really don't matter.

When I get down and sad thinking about what DMD means and the sadness that comes with it, all I have to do is look around at all the blessings it has brought us, and how strong we are because of it and it brings back the smile and I know their is nothing we cant's handle and God is with us as we travel the road of DMD
Holly,
I loved reading your post. I am so happy that your family has recieved such warmth and support and love. Roland is truly blessed...especially to have great parents like you!
Great post, Holly! I love that Garth song! Thanks for sharing and reminding me about all the good things that come about in the face of adversity. You have been so blessed by your community and church--how awesome for your family.
LOVE reading the positive and uplifting posts--y'all keep it coming!
Here is another song that Garth sings " standing outside the fire" the video is about a boy with Down Sydrome and how even though he is different he can accomplish things. So see us parents of DMD boys are standing outside of the fire, which in my mind is a blessing, because if we were standing in the fire our lives would be consumed by it. But since we are not inside the fire we actually have a chance to look at things in a different light and have a different attitude about everything. The little things that no one else would normally pay attention to, we have the chance to make a big deal out of. So sit back families and be ready to be amazed by these wonderful boys and young men. Get ready set go!!!!!!!
Reading this has made me stop and smell the roses. My Grandson Logan was diagnosed on July 2, 2008, with DMD. I have to fight back my tears everytime I look at him. I want to savor every moment I have with him. I am new to the PPMD Community and find comfort, hope and strength in the stories.
Once again, Tanya, you have managed to encourage with your postive attitude! I know I have heard that song and think I recall even having seen the video but never got what the song was really about. I just sing along half the time and don't really pay attention to the words of songs! But now, every time I hear that song (which won't be often since it's a bit old=(, I will think of you and all the rest of us who are "living the life!" I quote that b/c lately that is what Wyatt will say to us --"Let's live the life, Dad!" which is sitting in the hot tub eating popcycles!! We all get such a kick out of it but it is a sweet reminder for me to not take things for granted and "live the life" everyday with my whole family!
To Janet: I am so very sad to hear of your grandson's very recent diagnosis and hope, no, KNOW that you will find strength, hope and knowledge through the parents and information you find on this site. My mom has always said that there is strength in numbers and she is right! So, a big welcome to you--you have hit the mother load by finding this site=)
I am grateful for my connection with you all. I am so very grateful for my life and the ability I didn't know I had to manage pain, suffering by laughing and goofing off, by picking fresh tomatoes off the vine, by bending the rules and enjoying life while it is here and it is peaceful. I hope I can let that out and not be bowled over by the chaos of life, of being late for work, for all the superbly unimportant things I still see waiting for me every day. I hope I can appreciate my children more and not get stuck in how things are more difficult for me, because it's more difficult for our whole family, but most importantly, for my son. I am grateful for my son's golden smile and his happiness in this moment. We all only really have this moment. Every day I try to choose happiness .
Hello Julie,

I often think about the years before I heard the word Duchenne and honestly, I cannot recall what they were like, what I was doing or how it felt. Duchenne seemed to invade my home, my every thought, everyone I knew and especially my little family. In every aspect of life, I saw Duchenne first. The smile was gone from our family. I found myself always thinking ahead to college, career, family; wondering if the Chris and Patrick worried about these same things. I worried about Jen and Michelle all the time, wondering what Duchenne would do to them. In retrospect, I wish I would have used those 'clear eyes' drops. I wish I would have worked on my smile. Duchenne is heartbreaking, watching, waiting, hoping, crying, worrying and finding hope once again make days difficult if not impossible. But there are rewards - our children/our heros and everyone in this community, the wall we can lean on.
Sincerely,
Pat
Isn't it just strange or weird that it had to take something like this to get our attention and teach us things about life that maybe it would not had before if the disease did not affect the family. Yeah...maybe there are alot of "super mighty mom's" out there and its just hard to admit to it at times-but it's there...silently, but joyfully.

Reply to Discussion

RSS

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

Members

Events

© 2019   Created by PPMD.   Powered by

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