I guess today is going to be tough. Wyatt is going to get his first set of night splints. I guess reality is really setting in. We have also started to go through the pgd/ivf process and for the first time I started to blame myself. I hadn't really done that yet. We have known the dx for almost a year and when the genetics counselor would tell me it is not anyone's fault, I looked at him and thought "No f@#$ing kidding" we have no control over our genes. But then yesterday I was feeling sorry for myself and my husband because to increase our chances to have a child without DMD we had to go through all of this ivf stuff. I know it is a choice and God will only give us what we can handle but it is just hard to accept it. My husband, always supportive, told me that if I ever apologize for this again or blame it on myself that he wouldn't talk to me again.He said, That we have a wonderful child with DMD and we are happy and we are doing all of this because we want to add to our happiness and surround our little guy with more love. I just wish that would sink in. Thanks for listening. It's nice to have somewhere to go to talk to people who have been through the same thing.

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Hi Jessica,
I am so sorry! There is not one thing I can say to make it better and the reality of it is that IT IS NOT FAIR AND IT SUCKS. But, the other realities are that there are many blessings we have as a result of this diagnosis. I listed a few on Seph's anniversary date a week ago on his CB. But the reality is that we love deeper, we fight harder, and we care about others more sincerely because of this disease. I can't imagine how hard this is for you as you begin the pgd/ivf process, but you know why and you must remember the blessings, so that Wyatt will understand that too one day.
Praying for you today, Lori
Never feel guilty for any of this.
It's not your fault.
Jessica:

When Kory was diagnoised 10+ years ago I had the exact same feelings. I blamed myself. I went and had my daughter tested and she wasn't a carrier. Then nothing would satisfy me more than to have myself tested. I thought some how I could take the blame off if I tested negative. I wasn't a carrier but I didn't feel any better. Then I started really thinking I must of done something wrong!! It was actually worse after I tested negative. I was really blaming myself. I basically didn't want to live anymore!! I wanted to curl up and die myself. Then suddenly one day I woke up and thought about how Kory was a blessing to us. He changed me in so many ways. He made me love deeper than I ever thought I could. He helped me in so many ways. He's gone now but will live forever in my heart. I look at sweet little Adam who is healthy and thank God for him. I was told when I got finally got pregnant with Adam that there was a pretty large chance that he too would have DMD. I had 2 miscarriages before I finally got pregnant with Adam. I decided that I wanted him regardless. I went the test free route while I pregnant this time. I was terrified when I had the ultrasound and found out he was a boy but I was still hopeful. Thankfully he is healthy. Kory loved him so much and Adam helped me so much in getting through losing Kory. I look at Adam and see so much of Kory in him. I think of the love that Adam & Kory had for each other. It was so amazing!! I know this is hard but hang in there. Cherish ever minute and have no regrets. I know first hand that it is easier said than done.

Kim
Xavier was diagnosed with DMD on our daughters first birthday, so we did not have to go the pgd/ivf process for a second child, but I have to tell you. On the worst day of our lives up to this point, we went home and had a birthday party. And life went on. For me, I thank God for having my daughter in my life. She helps to keep my life stable and "normal" and to keep Xavier "normal". It's a rough road and we all "blame" ourselves, no matter what our husbands tell us and what we tell ourselves. We all have moments of weakness. But remember if you had it all to do over, even knowing all the pain we go through...would you really not want to do it all over again? Can you imagine a life without knowing Wyatt? It's worth the ride and this next baby that comes into your life is going to be the icing on the cake and everything you've been missing and didn't know it. Take the morning to yourself, you are allowed and always feel free to vent with us that go to that dark place too...and then go make a baby that we can all celebrate with you!!!!

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