PPMD Community

Information

Grandparents

Members: 36
Latest Activity: Jan 15, 2016

Comment Wall

Comment

You need to be a member of Grandparents to add comments!

Comment by Sandra M. Lazenby on November 11, 2011 at 1:06pm

Wondering if there are lots more grandparents out there and if there has been a post since 2010?

 

Comment by Marilyn on January 25, 2010 at 11:54am
To all,
Just take one day at a time, and enjoy your grandchildren. It's hard not to worry and hurt for your kids. Everytime I see my grandson and daughter/son-in-law, I go home feeling empty and wanting to take their pain away from them. After a couple of days I go on like normal. We have to go on for our kids. No one on the outside has any idea of the day to day challenges, you can't expect them too. My brother had DMD (I was for years younger), 3 cousin's and an uncle. There has been a lot of big changes since then (therapy, meds, comfort, and breakthroughs), but we are still struggling to hope... there will be huge break throughs in our children's time, you have to keep the faith. My grandson is 15 years old, he has a wonderful attitude. He is out in public a lot, I think it's a good thing for him. He notices the stares, and rude people, but he is learning to handle it. What a good person he is, he has empathy for anyone that looks injured or hurt, his mother just had Spinal surgery and he is so caring and tries to keep his mother from doing too much, he thinks so much of his parents and is thankful everyday for them and we are all thankful to have him in our lives, they do a lot together and have fun with each other. He has friends and he is happy. It's hard to tell what he is really thinking, and sometimes I wish I could ask, but I think it's best to wait for him to start the discussion if he feels he needs to. Every night I go to sleep thinking about them and every day I wake up thinking about them and in the middle of the day I think about them. It's hard not to. Just keep loving them and try to be as normal as possible. It's not that it gets easier, I think we just get use to the idea that this is the way it is (but there is hope), but we can't give up for their sakes. I hope that what I have said will help in some way, at least you know how other's in the same situation feel. No one on the outside will ever get it, so don't expect them to. Again, keep the faith....
Comment by Jacobs Mommom on January 25, 2010 at 11:10am
Well I tried to bump up the Grandparents page to the main page so we can get others to join but it didn't work:(
I am the MomMom of Jacob, 9 1/2 years with DMD. He was diagnosed when he was 6 1/2. He is still walking and doing well. He needs 44 skipped if it ever comes to the US. But he doesn't look like my Jacob anymore and the steroids have definitely changed his personality. He used to be a happy little boy saying hi and have a good day to people since he could talk but now he mumbles and doesn't like to go anywhere, most of the time is angry at the world and hasn't grown in 1 1/2, put on weight, grown alot of hair and of course the cushionoid face. It makes me sick to see what he has to go thru. He has a scooter but doesn't like to use it out because he hates it when everyone stares at him and he feels self-conscious. He's one smart cookie and in someways that makes it harder because even though he doesn't want to talk about it he knows more than we think, I'm sure.
I usually get him every weekend and I'm worried that I won't be able to handle him once he's in a wheel chair. Then what!
I get thru it by planning our fundraiser. I'm also trying to get a global fundraiser together that all of us grandparents can participate ini. If you are on FB please join the group Grandparents Against Duchenne and you will see my idea posted there. I've talke to Ryan and it sounds like a good idea and should have the items taken care of within 2 weeks.
I'm the type that has to keep busy or the depression will set in and I won't be of any good to anyone so that's what I do:)
Comment by Rosina Anglin on January 19, 2010 at 5:17am
I had 3 brothers, a cousin and an uncle with DMD and it's still hard for me to accept that my little grandson Max also has it. He will be 2 in April and will be seeing Dr. Wong in May. My consolation is that I grew up with 2 of my brothers and my cousin and although it was hard at times, they had a very happy, good life. They once told me when they were in their late teens that they liked their lives and were glad they were born. We did all the things brothers and sisters do, laugh, play and on many occasions fought. They inspired me to read things that I would never have read on my own. they added so much love to our lives. I keep praying a cure will be found soon but until then, I'll just love him to pieces and be there for my daughter and son-in-law.
Rosina
Comment by Carol Ann O'Malley on January 15, 2010 at 10:12pm
Thanks guys for your words of support, it's good to know Ihave someone to talk to and that you understand, so many friends and family cannot comprehend what is going on. Jack is not on steriods at the moment but I think the next visit to the hospital will determine whether that is the next step again. Thanks once again, will be on here again soon. Carol
Comment by Peggy on January 14, 2010 at 8:10pm
My grandson Wyatt was diagnosed when he was 15 months old and he is now 3 1/2 too. It is very hard to see what my daughter and husband are going thru but with all our help and prayers and the research our boys will have a chance. I love every minute I'm with him and I take one day at a time. Sometimes I just can't believe he has this and I think maybe they are wrong. All I can say is our kids need our strength to help them get through this. My grandson just started steriods the first of January, we will see how this helps him. My daugther said she can already see some changes, good changes.
Peggy
Comment by connie watkins on January 14, 2010 at 7:18pm
Carol Ann...One fof the hardest tihings is that as grandmothers, we have to hurt twice...our child and our grandchild. But hang in there...it gets easier as the shock wears off and grace kicks in. Connie
Comment by Carol Ann O'Malley on January 14, 2010 at 6:29pm
My Grandon Jack is 3 1/2, he was diagnosed with DMD 18 months ago. I am still in shock with the news but he is such a beautiful child he keeps me going. I am glad my daughter told me about the Grandparents group, just to know there are olthers going through the same emotions. Ours lives have been turned upside down as I am sure you all have experienced the same thing, trying to support my duaghter and son in law as well as trying to keep myself from going under. Jack is doing ok at the moment but I know the time will come when I will come to realise that it will take it's toll. I keep praying and hoping that research does hold the key. We were lucky with an early diagnosis before any more children came along and for that I will be eternally gratefull.
Comment by connie watkins on May 19, 2009 at 5:46pm
My grandson, Seph, has DMD. He is seven and we have known since he was about 4. He lives next door so it is easy to spoil him. He see Dr. Wong and so for(PTL) is is doing fine but I will tell you this...he has begun to realize that he has MD and that is hard. As long as he didn't seem to know or at least verbalize it, it was easier to pretend. Of course he hasn't realize all the if ands or buts, but nevertheless, I dread the day he ask me about it. But we will handle that also because our Lord will give us what we need when we need it and I truly believe that.
Comment by Cathie Bullis on May 15, 2009 at 8:58pm
Laurie,
I am so glad you wrote and put some of your thoughts down. It's relieving to hear from another grandmother. You are right, it's sad everyday and it's a struggle with every turn of this illness and in obtaining what these young boys need.

If I lived closer to the east coast, I would indeed welcome a friend who's grandsons have MD. I am so sorry that two of your grandsons are ill. I wish you and your family all the best in this fight.

Cathie Bullis from California
 

Members (36)

 
 
 

© 2017   Created by PPMD.   Powered by

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