My son was recently diagnosed with DMD. It has been very hard on my family and also Ryan (my son). But today was the hardest of all days, my son asked me today if he was gonna be in a wheel chair. I didnt know what to say and I still dont as if it wasn't hard enoug to recieve the news of his diagnoses but how do you tel your son yes baby one day that will happen. my heart broke all over again. I need to know will I ever find peace in this will I ever stop blaming myself or always wondering why me why my baby. Any advice would be great.
Hi Jennipher, my son Kyle was diagnosed (out of the blue) at the age of 5, he is now 9. He's an amazing little boy who has done everything he's been asked to do including 2 muscle biopsies (for PTC124/ataluren study) - one of which he even asked for a "bolt" design for his scar (the movie Bolt was big then) - of course the surgeon was not able to do that :-); but I've found that most of the time he's the one that keeps me smiling. I always hated it at first when people would try to be spiritual and tell me that Kyle was given to us for a reason - I do think that is true now. He's doing really really good right now and requires no assistance and still is able to play baseball, basketball, and football. This could all change next year in 5th grade and as these activities get more competitive. He has been on deflazacort since diagnosis and on the PTC124 since about 6 months post diagnosis. PTC124 is in the process of being approved by the FDA - but is considered orphan drug status, which is good. When we get asked questions, we give one quick short answer and don't dwell on it. If he asks another, we answer. We haven't been asked very "deep" questions yet, but at our recent clinic visit he did keep asking why he has to keep seeing the doctors. I just couldn't get it out so the doctor just said, Kyle, you have a muscle disease, and that was that. That's all he needed, or wanted to know, at that moment. I have never doubted my ability to take care of him. It's been hardest probably on my husband and my daughter (now 16) - they both have hearts of gold and at times you can just see their hearts tear just a little more. I"m not sure my husband has accepted it yet (and yes, it's been 4+ years) and that's been hard - but I also didn't say "in good times and in bad, in sickness and in health" just because it was the thing to say at our wedding... which by the way will be 20 years tomorrow :-)... Wishing you peace in your heart. Donna
Jennipher-We used strollers for long walks or shopping, didn't need wheelchairs till around 10yrs. they do have different severalties some can walk longer. did use braces for awhile, mostly for a standup table I made to help him stand up for longer periods, kept him straighter longer, didn't use it much on our younger son and has worse sculiosis. Hardest part is trying to keep doing things to help them keep muscles limber and not seeing improvement.
My son is 6 1/2 he was diagnosed early in life as he required a genetic testing due to not eating well or growing well. He had no signs of MD. He was diagnosed when he was 2 and we and the geneticist were so shocked. We were originally told he had a less severe form, but that does not seem to be the case. He can walk, but only on flat surfaces- he is in kindergarten and uses a power chair while at school. we take a stroller or the power chair whenever we leave the house.
It is such a roller coaster- I am glad you have some support. Sometimes I tear up and the oddest things. I am not bitter (may have been for a short time), but I do not feel I have total acceptance or ever will- but I do feel comfortable with that........ I mean he is my baby and this is not the life I want for him. I do not have another choice, so I cry and at times sob (let yourself be mad- you must let it ou) and then go on enjoying the "new normal" life we do have. I am thankful for many many things,but I do not think I will ever be able to say I am thankful for DMD.
try to keep in mind they ask questions because that is what kids do and I think the questions that they ask hurt us more as a parents as the answers are usually very emotional and tough for us to say out loud. We always answer my son's questions as honest as possible, he is the kind of kid that asks a lot and wants to know the details- sometimes I worry we give him too much info. One day I cried in front of him and he asked why (after watching him struggle to play on a jungle gym with a bunch of other children)- I told him I was sad about his muscles and he told me not to worry that is why there are wheelchairs. His answer was 100% accurate and he went on smiling and playing while I of course cried more.
Just know that you are not alone....... we are all walking a journey that was not planned and we all have very similar feelings and coping mechanisms. some days are going to be bad and some really bad- as long as we do not loose sight of the goal to have a happy life wiht our kids I think we can come out on top, even if it means we have to live with that nasty old DMD.
Donna, Congrats on the 20 yeear that is amazing I hope you have many wonderful years to come. In a sad way these replys are helping me understand more and really openmy eyes to the DMD world. Thank you
George, you sound like you have been an amazing dad to your sons. They are very lucky to have you in fact every parent on here in an amazing parent making a difference for our children to have the best quality of life.
Evelyn, I am so sorry about your son MD does not run in my family. and still dont know if our baby is going to be at risk. It is so hard to stay positive sometimes when all you see or hear is bad. I am doing the best but I do not accept DMD anf never will this is not the life for my baby. I have Ryan when I was young and still provided a wonderful life for him and to find out after 6 years that this is what is gonna slow us down is so unfair. I hope that gets easier all the pain the crying have to explain to family and friends. some days I dont even know how I am gonna make it, how am I going to show my son that everythng will be ok and in reality it is not. Ryan does not know that this could take his life but he is always asking me about god and heaven and on those days I just wana die. he asked me if there was a phone in heaven so when I die he can call me and all I could think of was how muchI wish they did so I would never have to say good bye. I know I am getting ahead of myself but my mind wonders and tortures me. I am so sorry to hear about your son and thank you for responding and once again adive is wanted!!!!!
I am deeply sorry that any of us have to deal with DMD. You will give hime a good life- I know it. Even if you feel like crawling in a ball and feel unable to go on.
I accept this for me, but not for my son- does that make sense? I know I have to go on living and carign for everyone-making the best life I can for all involved......but I will never not wish that he has DMD- there is not a day, hour or second that goes by. It goes without saying I would take on DMD instead if I could. Sometimes I am comortable with that or pretend to be be- ha! And other times I am not at all comfortable with any of this.
Your son asked a tough question- I still cry thinking about that one. The God and heaven questions are the worse- It is so hard to answer when I too question my God and my faith even know I should not, but I am the Mommy and I cannot help longing to "fix" or "cure" him. again- back to accpetance.
I really am trying to be a good example and show my son that it is sad and we can talk, laugh, and cry about DMD, but that life goes on and and we MUST LIVE with DMD and live a full life- even if it is way different then I had pictured. In private I am still morning the life I had thought I would have, that is what I keep from my son and others and probably always will- it is just for me. A few weeks ago someone asked me about my hopes and dreams for my son- all I could do was cry- I had no words. I thought damn it! This disease has robbed us all of sooo much and I am NOT going to let it rob us of what we do have and spend time dwelling on what can/will be (of course my mind tortues me way too often and I go back to those scary thoughts). I really do try to live day by day or moment by moment- on a bad day it could hour to hour- Yikes! I am working on those hopes and dreams and still cannot really put them into words. I read positive comments and stories on here and elsewhere and feel inspired. Honestly- I am very inspired by my son and all of the kids/adults with DMD and other disabilites. My son is my hero and I love living life with him and showing DMD that we are fighting this disease by trying our best not to let it limit our options or make us think there are things we cannot do. Maybe that life I pictured is not really that far out of reach afterall.
Getting the diagnosis is so hard. When our son was diagnosed, I felt like the air had been sucked off of the entire planet. I faught just to breath for a week. Some of the things that we have done for our son is to focas on the things that he can do. He loves to draw and color, so instead of investing in sports gear, we have purchased all kinds of crayola fodder. an eisel, paints, large paper, etc. we also have gotton him a kindel fire, as he loves playing the puzzle games. We are trying to teach him early to focus on the posotive..and trying to do so ourselves, although I absolutely understand how difficult that can be. You and your son will be in my prayers.
I have struggled with this myself my son is 7 years old and he is still using a walker to get around. Until last summer he didnt really understand what was really going on with his legs. He went to the MDA camp in ga. And all he could say to me was these kids arent like me they are in a chair then i had to explain to him that sooner or later he would be in a chair but its not for a lack of us trying to keep that from happening soon. He has actually used a chair for a few weeks and now he is okay with the idea of being in one.
As for a peace of mind i hate to say this but until theres a cure none of us will ever have that or will ever stop blaming ourselves due to we gave this gene to our little boys. I wish there was a easier way to look at that but the truth is really scarey and really upsetting. I love my son as i know you love yours and as long as we take each day with them as if it were the last then they will never regret anything and neither will we,