Hi all, it's coming up to 2 years since we got our son's diagnosis. He is three, and we recently had another little boy who doesn't have DMD.

Usually I do fine and people are always commenting on how strong I/we are. But lately I am finding it really hard to cope. They say you are supposed to get what you can cope with in life, but I really feel like this was a mistake, I am not strong enough to face this and it shouldn't have come my way. My son was barely a year old when diagnosed and I'm freaking out that he's already 3. Time seems to be moving so fast.

When I meet other parents, they seem so amazed at how we cope, and it makes me think "Have I missed something? Is it my ignorance protecting me because the hard stuff hasn't started yet?" That scares me. This is probably our last year without treatment and I don't know how to face what's coming.

I got therapy and that did help me a lot and then I stopped because I didn't think I needed it any more, and to be honest I don't have the time now. I am trying to get through this on my own, I don't want to admit how bad I feel because I feel like I am letting everyone around me down and burdening them. It's like all I ever talk or think about is Duchenne, and I'm sick of it already. I keep going over the moment of diagnosis in my mind like a movie, as if I could have done something different and heard the doctor say something else. 

Sometimes I want to cry but the tears won't come. Other times I feel like smashing up the whole house. I lose my temper really easily with my kids, and they're good kids. My husband works extremely hard advocating and campaigning for our son (we live in Greece and care standards are extremely behind here) I don't want to weigh him down with how I feel. He has really worked hard and educated himself, while I have been left behind because I've been busy with the new baby. He mentions new research and I don't know what he's talking about. I feel like I am letting everyone down, at the same time the truth is I don't want to hear any more about DMD. 

Why am I feeling like this? How do I get through it? 

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Dear Omaira,

The simple, uncomplicated suggestion is "one day at a time". Even one hour at a time is enough. Deal with things as they come up, don't think too far in advance. Of course some planning is required and you have to think of the future, but when that is done, come back to now. See your kids, enjoy them, enjoy them interacting with eachother. Be thankful that your husband is keeping up with the research, don't blame yourself because you cannot right now with a new baby and a toddler.

Try to get a sense of humor about your anger, laugh at it. Give yourself a break about it, notice it, be aware of it. Of couse you are angry, it's like a nightmare that you can't wake up from and you have done nothing to "deserve" this. I think we all go through that. And at each new stage all the emotions come back around again.

You'll get up to speed on the research when the kids are a bit older. There are things going on behind the scenes in the labs that you don't need to know now.

I had thereapy too and it helped, just to have someone to listen, not my "regular" friends who just don't get any of it. I also started to meditate, which helps to bring me to  back to  the moment. Maybe take walks with the babies in a carriage, stop and smell the flowers, etc. Sounds cliche, but it works. Some people take antidepressants when they need, nothing wrong with that either if you need.

I'll friend you and we can talk privately if you like. For now I  say hang in there, and look up the poem Holland, I think that really helps to put things in perspective.

Andrea

 

You said you recently had a baby boy. How recently? Is there a chance that you may be experiencing postpartum depression?

Hi Janine, 8 months ago, so I don't know if it's that. I do wonder if I have some form of PTSD. I can't stop the moment of diagnosis replaying in my mind. I feel so useless, the house is always a mess no matter how hard I try and I struggle to give importance to daily chores. I feel like 'what's the point when this has happened?' I have started going to the gym though, because that has helped my depression in the past. 


Andrea, your Holland poem helped and I'm sharing it with others I know in Greece :) so true.... everyone is in Italy and I'm mourning for the first 13 months when I thought I would be there forever too. 

http://www.nlm.nih.gov/medlineplus/ency/article/007215.htm

 

Could still be it. Untreated postpartem depression can last for months or years. You may want to go see someone. It can't hurt.

My sons both have DMD. found  out Jonah had it in 2008 and Carter in 2012. I remember watching a football game that and as the leaves fell off the trees I could literally the weight of them and was feeling buried with them. In the real world I would probably have enjoyed such a day, but with depression sinking its claws into me as it does from time to time I felt overwhelmed.   My advice to you is to find a space and time that is only yours. No one is allowed in "your space".  and know you are not alone... we are everywhere suffering alone.

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