Hi my name is Gisel and am a carrier mom, I didn't know I was a carrier until my son Dylan was born actually we didn't know that Dylan had DMD until a month after he passed, that same day I found out that I was a carrier. We had our 3 year old tested right away and he is not DMD. My problem is that I very often blame myself for being the reason why Dylan is gone. I know it isn't but I do it. I also find myself allowing David to get away with things that I would have never let him do before Dylans birth and passing. Sometimes I feel that my marriage might begin to suffer. Does anyone have any advice for me?

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HI,
I think your emotions are quite valid. You have just experienced a great loss. You need to let yourself greive. Cry and be mad and angry. Its natural. I am a carrier mom and have two sons diagnosed. I see a therapist and take an antidepressant to deal with the guilt. Not sure if that is the answer for you, but it has been for me.
My heart is with you girl!! Stay strong.
Thank you so much for your advice I have been trying to keep myself really busy with my 3 year old, and home , and school but it isn't enough because late at night I don't have any of those things to do. So yes I do believe that am going to need to start seeing a therapist.
I know that for my friends who have lost children, attending a support group for grieving parents was very important. Sometimes these resources are not well publicized. I would start asking about how to connect with such a group at your local doctor's office or hospital. You could also try online if your town has a program through their public health department. Your doctor or midwife who attended Dylan's birth should have a recommendation for a social worker or counselor who works with parents of babies who have died. And of course, there is the option of church/synagogue/mosque/spiritual group. Very good luck to you. You are not alone and it is not your fault.

In fact, Dylan and you have just given me and my family a gift by sharing a little bit of his story. Our doctors have scoffed at my theory that my grandmother's brothers died in infancy because of their DMD. With your story, I now feel completely validated in counting 6 generations of Duchenne in my family. And no one knew all that time because the Only Person who does not have/carry DMD in all those 6 generations is my brother. Even if they had tested him when he was getting diagnosed with Cerebral Palsy, he's clear so they wouldn't have tested my mom, my sister or me anyway. There is just no way to know about Duchenne until one little angel baby comes to earth and shows us.

Thank you for sharing a bit of your story here. Much love to you and your family---
hi my name is vilma and i have a 21 year old ismael with dmd. feeling guillty is normal but you can turn this around into a positive experience for you.first your faith tells you that Dylan is in a wonderfull place where he is not suffering and that you will see him again someday. you where not the reason he is gone duchennes is and that's why we are joining this parent project to end it, but until this happens we are going to loose some of our precious children and we need to focus on what's important family and quality of life for this children and their siblings.you are Dylan's mom but also David's and you have a loving husband that also needs you .I learn from my son to focus on what i can do and dont dwell on what i cant . Dylan want to see his family be happy and content allow it to happen some times guilt can keep us from being happy but remember Dylan wants you to be happy he will always be alive and a part of all of you, is going to take some time but with love, patience and lots of prayers it can be done. if you need to talk you can contact me i understand your feelings i've being there.

my love and prayers are with you and your family
I've been right where you are. When Kory was diagnosed, I rushed to get my daughter tested to see if she was carrier. She was not. So even though I did not plan on having any more children; I decided that it would make me feel better if I was tested. I was tested and I was not a carrier. I thought this would make a difference. However, it made no difference at all. I was actually more depressed because now I didn't have a reason why. I felt guilty more so than if I had been a carrier because there had to be a reason. At that time, I didn't want to have to face the death of my son one of these days. I thought that if I could just disappear it would go away. One day out of the blue I finally woke and realized that I had no control over any of this happening. It wasn't "my fault". In reality it did cost me a marriage but to be honest he wasn't the right one. I had 2 kids with him and he turned out to not be there for any of us when the push came to shove. So I ended up meeting my current husband who is such a wonderful man. He took care of Kory like Kory was his child. he was always there for me and Kory. We ended up having my sweet little Adam. Luckly Adam does not have DMD. Kory's gone on to heaven before me but someday I'll see him again!! My life certainly didn't turn out the way I intended but I'm thankful for all of my blessings. Kory, Adam, Kellie and even the 2 babies I lost through a miscarriage are my life. Kory opened my eyes to so much. I can honestly say that I wouldn't be the same person I am today if the good Lord hadn't giving me my sweet & precious Kory. He was wise beyond his years and had the courage that I can only dream of having. He was strong & tough even though he had MD. He is an inspiration to Adam, Kellie, me & Howie because we had the honor of calling him our son or brother.

Dylan is another one of the Angels watching over us. David will always have his little brother watching over him. Kellie & Adam will always have their brother watching over them. I believe this with all of my heart and soul. I'm keeping you in my thoughts and prayers!!

Kim
hi my 7 year old son has dmd we found out when he was 4 when we were told i felt gulity. when i was tested and it came back that i was a carrier i felt more guilty because i have 4 daughters my 15 year old is being tested in april i hope and pray none of my daughters are carriers but if they are i no we will get thought it.
Honor the memory of your Dylan by being the best parent you can be to David. You did not intend for you son to have duchenne. You are to blame for nothing. I wish you the best.
Thanks sooo much Jennifer, I have been going to therapy ever since I read out loud what I wrote on this page. Am now really getting to understanding that it was not my fault Dylan had DMD just like its not anyones fault that am the only carrier in my family. Its just one of those things that instead of letting it break us down we just gottta somehow break threw and move on and become a better , and stonger person than we were before. Yes your right the only way possible to honor my Dylan is to be the best parent that I could be to his brother David. Since for the 3 1/2 months that Dylan lived we gave him our all. Day and night we were the best parents that he could have ever had, so we need to do the same for the David. Once again thanks sooooo much!
Gisel
Gisel, I have an 8 year old and a 5 year old with DMD and a 1 year old for which I am waiting the results for. I found out my sons had DMD when I was 6 months pregnant with my 3rd boy. My nephew who is 4 is also affected with DMD. Both my sister and I had no idea we were carriers either. I am so sorry about your son Dylan. I understand you perfectly, but remember it is not your fault, you did not know you were a carrier. Remember there is a reason for everything in this life. Maybe you can try talking to a family therapist about your feelings of guilt or a priest or preacher. How old was Dylan when he passed if you don't mind me asking? If you think your marriage starts to suffer look for professional help because your other son needs you. I mean, I am nobody to talk, I have had a rough year myself. Shortly after I gave birth I started taking an anti-depressant called Lexapro with a low dose that my doctor prescribed and that has calmed me down alot. It was alot to take in in one year. Dalila
No advice except you already are aware of this behavior so you can change it :-) I have a question for you...Are you a better mom or worse mom when you have feelings of guilt? Does guilt help you be all that you can be for you and your family? You are a blessed mom to have a 3 year old and a marriage. Uplift Dylan's memory, find the good and go on...Both you and your family deserve the BEST you!

Sending lots love and light your way ;-)

Misty VanderWeele (Luke's Mom)
vilma rodriguez said:
hi my name is vilma and i have a 21 year old ismael with dmd. feeling guillty is normal but you can turn this around into a positive experience for you.first your faith tells you that Dylan is in a wonderfull place where he is not suffering and that you will see him again someday. you where not the reason he is gone duchennes is and that's why we are joining this parent project to end it, but until this happens we are going to loose some of our precious children and we need to focus on what's important family and quality of life for this children and their siblings.you are Dylan's mom but also David's and you have a loving husband that also needs you .I learn from my son to focus on what i can do and dont dwell on what i cant . Dylan want to see his family be happy and content allow it to happen some times guilt can keep us from being happy but remember Dylan wants you to be happy he will always be alive and a part of all of you, is going to take some time but with love, patience and lots of prayers it can be done. if you need to talk you can contact me i understand your feelings i've being there.

my love and prayers are with you and your family

Vilma, you are an inspiration.  I had 2 sons as well, and they are now RUNNING down the streets of Gold!  I am a carrier of Duchenne, and there is no family history of it.  My sons were diagnosed in 1990 and 1991 at the ages of 5 and 2.  I had taken the 5 year old to dr after dr, to be told all sorts of reasons why he wasn't doing the things motor skill wise that he should have been doing at his age.  I heard everything from "diaper waddle" to "flat footed".  It was very discouraging. Actually finding out the final diagnosis was a blessing, because at that point we learned what we were dealing with, and that is always better than the unknown.  I went through every stage there was out there, from denial to anger to self pity to ok...bring it on.  Without my faith, I would have been lost.  My sons were very bright, and asked questions all the time.  All I knew was to be honest with them, and tell them as much as their little brains would absorb.   The one thing I learned with them was that it didn't matter what they couldn't do.  They were more interested in what they could accomplish.  Yes, they wanted to be able to keep up with the other kids, but really, who was it that wanted it more...them or me? When my oldest son passed away, he left a huge legacy behind.  We lived in a small town, but there were more than 700 people at his funeral.  He was in the show choir at his high school, was the choir king, was in the all state choir, and sang in a barbershop chorus.  He received most improved choir member two years in a row, and had a scholarship to OSU in vocal music.  This all with a lung capacity that was 46%.  He was amazing, but his faith was even more amazing.  The one thing I have to be thankful for is that when he did pass away, it was very quickly, a blood clot to the lung which killed him instantly.  He was not sick prior to this, and he did not suffer.  That was August 2006.  I still grieve for him...but I know where he is, and I know I will see him again.

My youngest son, Jeremy, was his own person as well.  He had a totally different personality than his brother, but just as amazing.  He even got married just after he graduated high school.  This was particularly difficult for me, because I knew that he would lose his health insurance benefits and would only have state medicaid to rely on, but I had told him his entire life that he was just like everyone else, had the same desires and needs, and then at the age of 18 I was trying to change the rules.  He RAN into the arms of Jesus on March 1, 2009.  Once again, he left his legacy, his heart, his friends, but he did it one his terms, very quickly.  We aren't sure if he had a cardiac arrest, or if he had a pulmonary embolism, but he went quickly, without being sickly.

I grieve for them on a daily basis.  But, their wit, their personality shines on a daily basis.  They taught me so much.  They taught me that you have to choose your battles,  everything can't be a battle, and make sure you have your guns loaded when you are ready to fight.  Your fights come with schools, insurance companies, people who lack understanding, and people who are just down right mean.  The one thing I know is that they still live in my heart, as well as everyone they came in contact with.  I have a daughter who is 28, and thankfully she is not a carrier.  She has blessed me with 3 beautiful grands, and I am able to absorb my time with them and my job, while trying to help teach others how to be an advocate for their kids.  Working in the field I do, every day I get the opportunity to share the knowledge I have acquired over the past 21 years for the benefit of others.  God bless each of you...



vilma rodriguez said:

hi my name is vilma and i have a 21 year old ismael with dmd. feeling guillty is normal but you can turn this around into a positive experience for you.first your faith tells you that Dylan is in a wonderfull place where he is not suffering and that you will see him again someday. you where not the reason he is gone duchennes is and that's why we are joining this parent project to end it, but until this happens we are going to loose some of our precious children and we need to focus on what's important family and quality of life for this children and their siblings.you are Dylan's mom but also David's and you have a loving husband that also needs you .I learn from my son to focus on what i can do and dont dwell on what i cant . Dylan want to see his family be happy and content allow it to happen some times guilt can keep us from being happy but remember Dylan wants you to be happy he will always be alive and a part of all of you, is going to take some time but with love, patience and lots of prayers it can be done. if you need to talk you can contact me i understand your feelings i've being there.

my love and prayers are with you and your family

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