My son

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Permalink Reply by Andrew Kerr on December 7, 2009 at 11:30am

Its tough, it really is. My wife and I did see a therapist after our boys were diagnosed.

The best advice I can give is to not concentrate on what may happen in 10 or 20 years. Concentrate on the now. He's a toddler and they can bring a lot of joy to your life. Our oldest is only 4, and while the delays are noticeable when you compare him to other kids, he's still a fun loving 4 year old. Nothing brings more smiles to all our faces than when I spend a few minutes rolling around on the floor tickling both of them. Live for those moments.

Permalink Reply by Allyson on December 7, 2009 at 12:43pm

Leslie, I am so sorry to hear how you are struggling. My son was diagnosed just over 1 year ago, and we were in the same place as you for a time. It is just so important to remember that even though this negative thing has happened, there are so many positives still waiting to happen! Andrew is right - your son is still the joyful, fun-loving boy you know and love! Take heart and enjoy the things happening now - don't miss any of the "now" by focusing on the "later".

And remember, everyone on this site is here for you.

There was a similar post here a couple of weeks ago at http://community.parentprojectmd.org/forum/topics/anyone-help-me.

Permalink Reply by irishgirl on December 7, 2009 at 1:17pm

Hi Leslie:
My son is ten and we have known about the DMD for a year and a half. For me, it's harder now than at the beginning because I think the world of my love - Liam! He is absolutely wonderful, funny and incredibly happy. I find myself waiting for him to get back from school so happiness can get into this house again. I am with you and know that there are good days and "DMD" days. How can we watch our child die before us? But before we go and sell our souls to the devil, keep in mind that we really don;t know how or when they will die. It may not even be by DMD. Life is precious although our kids have his God awful disease, at least they are not in severe pain with some horrid cancer. They can still be children and grow and live. If they did not have this disease, I know I would be so much more apt to take things for granted. This way, we will miss nothing because we will always be on guard or aware. We took our son to Italy last summer and it was so magical, but now as winter sets in, my mood gets much lower. I live in VA and it's been cold and rainy lately which doesn't help me at all. Just look and listen for that laugh and smile. I hurts and all this is SHIT! But our son thrives off on us being happy and rejoicing in the fact that we have him now.
Please, let me know how you are doing today!!!!! Noreen

Permalink Reply by Anne Hancock on December 15, 2009 at 12:58pm

Leslie,
I am very sorry for the burden you have. I have struggled with my son's diagnosis for a long time (we found out when he was four and he is now 7). I am seeing a therapist and it has been a good thing for me. Since you are doing this on your own, try to reach out to those around you. You need the support and you shouldn't do this alone. It is too much to bear. After years of working with a therapist I had a moment just last week where I was able to define what I have to accept about my son's diagnosis. I have to accept my roll as his advocate and care-giver. I am only just starting to be ok with that. I will never accept what this diagnosis means for him, but I can accept the job I have to do. I have the same tendency to focus on the end of the journey and not the here and now, but focusing on the here and now is all you have to keep you sane. Cherish each day and don't think too far down the road (easier said then done on my bad days). No parent knows what will happen to their children. Just love them.