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Sherri,

First I want to say that I am sorry that you are going through this and that it has come down to this great sadness for you.  I know I have gone through some horrible times, and my drug of choice was alcohol.  It's legal, easy to get without a script, and could numb my anxiety and depression when I would go home from work.  It made things easier to deal with.  Have a couple glasses of wine at night and everything seemed to be okay.  I decided to totally stop drinking because I noticed that I wasn't getting everything done that I had to and it was an infringement on my enjoyment of life with Nicolas.  It wasn't a total out of control issue, but I realized I wasn't dealing with my life in a proactive way so just stopped everything altogether.  Since then, I have been able to get my family's affairs in orders, such as schedules, etc., and have been able to spend better quality time at night with Nicolas.  

I believe for more severe cases of depression, it's a good thing to see a counselor, psychiatrist or psychologist, but to see someone who can talk with you and not just subdue your symptoms with drugs.  Although in some cases, I can see where medication may be necessary - but again, the therapist should be spending time with you and hearing you out.

As for the guilt, I think as moms we feel guilty at certain times no matter what.  Add a child with a disability, and that amplifies the situation.  I was genetically tested, but it took several years for me to get up the courage to get this done.  I found out I'm not a carrier, but it didn't make it any easier.  I thought of what I did or didn't do when I was pregnant.  I also believe that there may be a link to DMD if you have a high stress pregnancy.  My son was premature and I was on bedrest because of leaking amniotic fluid.  I still to this day believe that that has something to do with Nicolas having DMD.  I've spoken with other parents with sons who have DMD and they were premature, or have had other stresses during pregnancy, but they're not carriers.  I believe there is a direct link here.  So I still feel guilty at times.  However, I try to make sure that Nicolas now has the best life he can have and that he is treated as normally as possible.  I make sure to spend time with him and talk with him, especially listening to him and his stories.  I never want to waste a weekend (I'm a working mom - which can be even more guilt ridden), and take him places.  Life is so hard as it is.  So instead of saying no to playing a game or putting a puzzle together after work when I'm tired.  I buck up and do it, and the result is I get to see my Nicolas smile and interact with him.

I have older kids so Nicolas is the only one at home.  I don't have to deal with him watching his siblings play and do things he can't.  BUT, he's in 3rd grade, and we have some pretty serious discussions about recess and how he can't join in to play with some kids because they want to run around and he can't.  this hurts like hell.  But I don't let him see that.  I tell him of other games he can play (Simon Says, Red Light Green Light, Mother May I), plus there's sidewalk chalk and bubbles that the school provides for Nicolas.  Even though you need to let your other kids get out there and play - maybe have them play with your son first for about half an hour doing the things he can do - and then while they're running around, being kids - you take your son and have quality time with him doing some sidewalk chalk art, or a puzzle or something.

Sherri - no matter what, if you're a carrier or not, don't let the guilt and depression get the best of you.  No matter what - you are a mother to a magnificent child who needs you and depends on you, and most importantly, loves you unconditionally.  What in the world is better than that?  I wish you the best Sherri!  And by the way, your son it beautiful!!!  Consider yourself a very lucky mom to have him in your life!!!

Nope, I wouldn't beat yourself up too much over the telethon.  I remember hating it when i was a kid for the same reason - it interrupted my shows!  the funny thing (well not so funny) was that when Nicolas was diagnosed it was only a couple months before the telethon if that, and I watched the whole damn thing!!!  we even kept the t.v. on when we slept and i woke up a couple times to watch it!  I cried because it was all so new, and to see everything televised in front of me that I had taken for granted as a kid, was a lot to handle.  But I made myself watch and get through it.  The next year, we went to our local (Chicago) station and helped out at the telethon and were even on t.v.  It all came full circle. 

How old is Jordan?  I understand the hand coordination stuff.  I got Nicolas a hand held bubble blower, but he's 9 and still likes that stuff.  anything outdoors he loves.  Except he's been getting really tired lately so we keep at a minimum.

I did the genetic testing because we already have heart disease in our family, and I realised I need to make sure to take care of myself and be here for Nicolas.  And I also had the same hard time with the doctors here.  I was asking his pediatrician for 2 years before I finally sat her down and made her LOOK at how he ran and got up off the floor.  Before that, she told me developmental delay.  It's dumbfounding that doctors never seem to really listen to the parents concerns.

I'm glad you found this website - it truly helped me through a lot and continues to do so.  We're all in the same boat and all part of a family that we never wanted to be part of.  But at least we have each other to lean on for knowledge and compassion and understanding.

My son was diagnosed at 4. When the doc told me it came
From me i was mortified that i did this to my son.
As the years went by i tryed alcohol to forget i tryed
Blaming god and fighting with my husband. But once I
Faced it and realized i couldnt have changed it i forgave
Myself.

So sorry - I think we have all been there at times as well! Anyway, I like Michelle's suggestion to get involved with your local telethon. I truly feel there is something therapeutic about getting out there are doing something! We are super involved with our local MDA, thru telethon, fundraisers, MDA Shamrocks. I know it is hard to make that step, but I feel it has really helped me! Best wishes!

When my son was diagnosed my mother refused to believe it came from her side of the family and tried to blame my husband. It turned out that I am the first carrier and my daughter is the second in our family. When my mother finally understood it started with me she told me, "you ought to be ashamed of yourself!"  I do not feel guilty because I had no idea I carried Duchenne. I do not blame God either. It just was fate and bad luck that this happened. Anyway, I raised my son the same as my daughter, that he would get his University degree and work. He is 31 and contracts at Microsoft as a software engineer. Get past the guilt--life is too good to waste. There are dreams to dream and new dreams to replace those that cannot be.

Yes Ann, how dare you damage your own DNA while you were in utero, that was very wicked of you!!! (joke, in case you haven't already choked on the amount of sarcasm in my remark). Just goes to show some of the ridiculous  attitudes that people have. It is especially hurtful when coming from our own family and supposed friends, never mind strangers.

I commend your strength in raising a fine young gentleman. I only hope I can do the same.

Andrea



Ann Avery said:

When my son was diagnosed my mother refused to believe it came from her side of the family and tried to blame my husband. It turned out that I am the first carrier and my daughter is the second in our family. When my mother finally understood it started with me she told me, "you ought to be ashamed of yourself!"  I do not feel guilty because I had no idea I carried Duchenne. I do not blame God either. It just was fate and bad luck that this happened. Anyway, I raised my son the same as my daughter, that he would get his University degree and work. He is 31 and contracts at Microsoft as a software engineer. Get past the guilt--life is too good to waste. There are dreams to dream and new dreams to replace those that cannot be.

Dear Sherri,

Even if the test shows you are a carrier, you could ask yourself the question "where did MY condition come from?" and you wouldn't be blaming anyone, would you? So go easy on yourself, friend.

I am a carrier, and the mutation started in me, and will end with Simon, 2 generations and "it's" gone, POOF! Why? Doesn't matter in the least, it just is what it is. Why did one of my sons inherit the faulty gene and the other not...pure hazard. 

Our job is to love these boys to bits, and to spread the word about Duchenne.

Don't beat yourself up, you need the energy that it wastes to love your kids and yourself instead, fully. Maybe your son can't do everything, but he can do other things. I could skydive, rock climb, or cross the English Chanel doing the back stroke, but I don't.

Instead I read in the sun with a full sugar Coke or occasional glass of wine, l listen to the boys giggle and squeal at the local pool, and I POWN (is that how they spell it, whatever it means) when we play cards together. 

Look closely and you will notice that Jordan's smile is the biggest and brightest out of all the "normal" kids, right? I'll take "exceptional" over "normal" any day!

You made Jordan to be an exceptional human being. GUILTY AS CHARGED, YOUR HONOR!!!

A.

p.s. We will support you in this.

Andrea, hats off to your spirit. Though this is all mother stuff but i think spirit has no gender. Fantastic, i can say that am a father of an exceptional son.

I think i need to speak to you again soon.

Yep, it's not a mother or a father thing, it's a LOVE thing.

Don't get me wrong, everyone has some really dark moments (you can read my blog at www.drydrowning.blogspot.com) , but it's not worth the wasted time dwelling on them. Each moment is what we make it, and then it's gone.

How are you doing Sherri?

A.

Anup Kalra said:

Andrea, hats off to your spirit. Though this is all mother stuff but i think spirit has no gender. Fantastic, i can say that am a father of an exceptional son.

I think i need to speak to you again soon.

Hi Sherri,

First off I want to say you should not blame yourself, we all went through it and probably go through the guilt again.  But you have to be strong and push through.  Through research that I have do through my family I can trace DMD back through my family about 80+ years, but the only one confirmed was my Uncle Sam who died when he was 16 in the mid 1960s.  When I was pregnant with my 1st child (my daughter) myself and my mother were tested and the results came back negative. I then went on to have another child my 1st born son who is not affected. My 3rd child, a boy who is affected, he has a duplication of exons 10-11. We found out by accident,I brought all my concerns to my pediatrician and she said he was fine not to worry about the DMD he was just a little behind and he will catch up. When he went into pre school he was being evaluated in school because he would not talk to anyone he did not know.  He was diagnosed with Selective Mutisim, the doctor who diagnosed him with SM, sent us to be tested again for DMD just from my history of DMD in the family.  It came back as being positive of me being a carrier.  This was all done in a matter of 3yrs. (we were a little busy hehe). We then went on to have another boy 3yrs later which was by accident, he also has DMD.  My point being please please take care of yourself, if you need to talk, turn to this website.  We are all here for you.  We have all been there, as far as guilt that I carried I have buried it so far it will never rear its ugly head.  You have to live each day to its fullest enjoy your kids and your marriage. Stay strong and stick together.  If you need to talk you can call me at 908-789-2186 or email me at ginamanning@comcast.net.

Remember when you vent on here it is very therapeutic to yourself and others.

Regards

Gina Manning

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