2 years ago I was going through some ruff times. I was trying to do it all. I have 5 children all together 3 with DMD. There was a school nurse that asked me a question that I will never forget. For one did I know what birth control was and why did I decide to have children. She thought it was irresponsible to continue having children after I found that my first son had DMD. She wanted to know why I didnt abort the other children when I knew before I had them that they Could possible have DMD. I was just wondering if any one else has sufferd abuse from schools also.
Was I wrong to have children was I irresponsible. Was I just thinking about myself when I had children. How do we get over the guilt of being carriers and get on with our lives?????? This disease SUCKS!!!!!!! Why do we feel so helpless and so alone.

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Comment by Veronica E. on February 23, 2009 at 8:38pm
I'm absolutely shocked that someone would say such a thing to you! I knew I had a family history of DMD (three uncles with it and a couple of cousins), but I was given incorrect information about testing and thought that without a living carrier in our family to test, I couldn't know for sure if I was a carrier or not. During my pregnancy, I found out my carrier status could be determined with a good deal of accuracy after I was pregnant, so we decided to do carrier testing, with the thought that I probably wasn't and it would be one less thing to worry about. I found out when I was 16 weeks pregnant that I was a carrier. I would never terminate a pregnancy, so we prayed a lot, cried a lot, and had a beautiful son Max, who, we now know, has DMD.

I've thought a lot about this, and I do have some guilt, and I pray that Max will never be angry with me or think I was selfish. I've learned from my mom's brothers that they had a good life, and they wanted to be here. And if my grandma had her first son with DMD and decided not to have more children, my mom and her sisters and brothers wouldn't be here. If my mom decided that same thing, my beautiful sisters and myself wouldn't be here. And, of course, my precious children wouldn't exist either.

As far as God's part in this, I found great comfort in the book "When Bad Things Happen to Good People." The view of the rabbi who wrote the book (whose son had the premature aging disease progeria) was the God didn't make bad things happen to good people. Bad things happen because people have free will and choose to wrong others (violence, wars, etc.), or because nature is without morals (hurricanes, vicious childhood diseases, etc.). I know many Christians don't share this particular view, but the God I believe in would never cause children such suffering. What God does is give us strength and comfort in our times of need.

Sorry to go off topic a bit there! I would definately complain about that awful nurse!!!! Hang in there!
Comment by Cheryl Markey on January 28, 2009 at 10:19pm
Well, if we go and visit the Christian Family Group here on PPMD, I have read that God doesn't make mistakes...I will admit even though I believe in God....I do find myself questioning him of why he would allow any child to have any type of terminal illness.....it is one's own decision to have more children whether knowing they could have DMD.....I tried for many years to become pregnant, miscarried my first child, then Adam to be born with DMD, I didn't decide to not have anymore children, I have only been pregnant these 2 times and have never taken birth control. That nurse was way off base and it is none of her business why you had more children knowing they could have DMD also. Instead of questioning you on why you had more children, with having DMD boys, she should of been asking what can I do help you, to give you a mommy break, etc.. Adam having DMD is a new mutation, how was I to know he would have DMD, maybe I shouldn't of gave birth to him either ( if it were that nurses decision, almost sounds like she should move to Japan or China where disable children aren't welcomed and are aborted all the time, or even female babies are aborted ), just because our children were born with DMD, doesn't mean they shouldn't be here ( maybe they are the ones that really know what life is all about, I see them all with this same smile, they never or hardly complain about stupid things that we all complain about, they are happy despite what they have to endure daily, they are to teach us a lesson to be happy, but, I feel my son has done well living in our society that focuses too much on being perfect....that word needs to come out of the dictionary as nothing is perfect, just think if our society took just as much interest in our cause and other causes that steal love ones daily from their families instead of plastic surgery trying to get the perfect size boobs, perfect nose, getting rid of wrinkles, our job as parents is made harder due to the image society has pushed on us tha we all should look like this and that, these people are unhappy with their looks, they have plastic surgery, our boys can't walk, they can no longer lift their arms to hug us, what do they have, we all just have hope and faith that the CURE will be found soon, the same things that parents wanted many years ago, the CURE is the same thing we all want.
Our boys are so much stronger than we are, many do not talk about their feelings as us moms would like them too, but this goes back to them being males.....males don't communicate like we females do, they are little men....do your husbands talk openly about their feelings, not so like you do as they are males. I do know when something is bothering Adam and I leave the door open and always have that if you need to talk I will be there to listen, he eventually comes and talks to me. And they do try and protect our feelings along this Duchenne Journey that we are on!
I hope all has been well with you and your love ones coming into the end of this week!
Comment by Shannon Thomas on January 27, 2009 at 7:43pm
Remember that your children are a gift from God with or without Duchennes. We are truly blessed despite this disease! This life is hard but I love my boys and I wouldn't trade them for anything!!!
Comment by Jenny Garofalo on January 18, 2009 at 9:55pm
ARE YOU KIDDING ME???? My heart is breaking for you right now. as a mom of a DMD boy and as a nurse, I am so angry that anyone would say such a thing to you, especially a health care professional whom you intrust your children to. It is no ones business but your families the chioces you have made. I hope to goodness you reprted her to the proper people, principle and superintendent. please do not let this go by without action being taken. God Bless you and your family.
Comment by KarstensMom on January 15, 2009 at 1:20pm
As a non-carrier mother of a DMD boy I have been told that there is very little chance of having another DMD boy....but who knows for sure? Who knows what can happen? I'm not a carrier, I never suspected this could happen to my child. Should I have known I was born with "bad eggs"? Was it irresponsible of me to have a child? Of course not. Knowing what I know now, I have many more things to consider before having another, but that is my decision to make and no one elses. Next time someone says anything like that to you, I hope you say "HOW DARE YOU JUDGE ME", and report them to whoever you can so they don't have the opportunity to subject anyone else to their asinine behavior. That just makes me so mad, as if we are not hard enough on ourselves already..to have someone else put in their unsolicited 2 cents! Ugh!
Comment by Janine on January 10, 2009 at 2:42pm
While the choice you made may not have been what I would have chosen it is your choice to make. What I feel was wrong is the school nurse saying anything at all to you. It is none of her business, and totally unprofessional to voice her opinion to you. I would have gone to the next school board meeting to make a very public complaint about her comments.

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