I am a mother of two girls. I have a sister and two brothers. My sister has recently been diagnosed a carrier of DMD and her two sons have DMD. I have recently received my results and am also a carrier.
About my family:
My daughters are my life as my nephews are my sisters. We were raised to say "I love you" and mean it. We were not a perfect family but we were surrounded with love and surround our kids with love every day. I enjoy scrapbooking with my eldest, 4-wheeling with my youngest (she is just like Dad) and spending time with my family.
Thank you Tina for replying.Today i am very low and living two hours drive away with my own children at school etc it is hard to be able to visit as often as i would wish.Just having a safe environment to communicate and learn at my own pace is great and knowing people here think as i do is a relief i guess.My best friend died feb 2009 and that support i miss a lot --especially now.So many things go through your mind,don't they?The ripple affect it has seems to increase with time.But just making contact here i know will help us all.I am a nurse but feel useless with my lack of knowledge.Life teaches you new things everyday and i know strength will follow.But it hard somedays to see ahead.I will log in every few weeks to keep in touch.The rawness of it still alien for now.I have sat here crying,smiling and thanking God for the gift of human resilience i read on blogs and pages.Up until last October a parellel world existed to my own safe place and i am ashamed of my ignorance of it.Now i am in it but my sister and her husband live it 24/7.Take care,Ger.xx
Hi Tina--Thanks for replying so quickly. I have to say that already I feel better. I have always thought that aunts play a unique role in the lives of the children they love, but perhaps mine is a bit more unique than most. As the youngest of 2 in my family, my brother is 12 years older than I, so it was almost like I was an only child. He and his wife were married 7 years before my niece was born, and she was really almost like my own. My sister-in-law went back to school after her birth, so I kept her a lot. She is very much like me (both good and bad!) and we have a great relationship. I was the one she always came to, always trusted, always believed in--sometimes to the dismay of her parents. Now that she is older, their relationship is wonderful as well, but ours has always been constant. It is now her child (so really my great nephew) who has been diagnosed with Duchenne's. Like her, he has always been "my boy" and--though they live almost 5 hours away--he has always been a regular visitor with me and my husband. We married only recently so I have never had children of my own. Jake is our absolute heart and is spending the week with us this week. He will go home on Friday for his birthday party; he turns 5 on Dec. 17. The entire family will then be back for Christmas. Even though the grandparents live in my town, I inherited the family home, so this is always the center of operations it seems so we are blessed to have them right here quite often. As I said, things are still such a blur for us, and we are seeking out anything and anyone we can find to share in this battle. Thank you so much for adding us to your prayer list, as we do believe that God is in control of this situation. Please be assured that we are praying for you as well. Do you guys talk often here? Or ever do group chats? Do you share research findings or is it more support for each of you as you support the other members of your families?? If you would, just kind of fill me in on the process and procedures; I truly want to be a positive member and do my part to help. Thank you again; I look forward to talking with you more. Have a good evening.