PPMD Community

New Normal

I guess I'll start this one.

I lost my 16 year old son to DMD March 31, 2007. It has been very hard, he is missed each and everyday. We are learning to live the "New Normal" but, we will never be the same. He was an amazing kid and just knowing him blessed our lives.
I have continued being a part of the PPMD family because... it's not over yet, there's still no cure and I know my son would never want us to give up.
The PPMD community has been a big part of the healing process. They have let me share my memories of my son and many of it's members have offered support when I needed it the most. I know it's very hard for some to even look at my postings, but for those who have and offered support, I thank you. My hope is that in some way I can give back by offering help and support to others as well. God Bless all of you.

Sincerely, Mary

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Permalink Reply by Tanya Fleming on July 31, 2008 at 11:47am

Mary how do you cope on the bad days. I can be laughing one minute and crying the next over something that was good. Most days are ok, but lately I have been wanting to cover my head and just stay in bed, even though I can't. What do you do to bounce back? If you want to share?
Thank you
Tanya

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Permalink Reply by Mary Sahagun on August 1, 2008 at 12:27pm

Hi Tanya,

I sent you a private message.

Tanya Fleming said:

Mary how do you cope on the bad days. I can be laughing one minute and crying the next over something that was good. Most days are ok, but lately I have been wanting to cover my head and just stay in bed, even though I can't. What do you do to bounce back? If you want to share?
Thank you
Tanya

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Permalink Reply by Tanya Fleming on August 7, 2008 at 4:12pm

Thank you Mary.

Mary Sahagun said:

Hi Tanya,

I sent you a private message.

Tanya Fleming said:
Mary how do you cope on the bad days. I can be laughing one minute and crying the next over something that was good. Most days are ok, but lately I have been wanting to cover my head and just stay in bed, even though I can't. What do you do to bounce back? If you want to share?
Thank you
Tanya

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StaffPermalink Reply by Pat Furlong on August 7, 2008 at 7:20pm

Hello Mary,

How many times have we wished for 'normal' since that day Duchenne first entered our home and then with each 'new normal' our heart breaks and stsrengthens and breaks again. I have been asked many times why I stay and my answer is just like yours. I'm going to work with my family to EndDuchenne.

You are in my thoughts.
Pat

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Permalink Reply by margaret kopp on April 20, 2009 at 1:34pm

Hi, Mary,
i,m so very sorry for your loss.
my daughter had told me about it.
you dont know me, i just signed up on this site
my name is marcy, i am a grandmother ,
my 9 year old grandson has DMD.
he has been in a wheelchair now for 3 years, its been really hard seen him go through all this.
he spends holidays with me, and just about every weekend, also he is with me all summer.
there is not a day that goes by, knowing that we will lose him, i keep trying to prepare myself for this,
i cry every time i even think about it,
my daughter is trying her best to deal with all the things that come up,
but i know it is very hard for her, not having anyone to talk to,
that understands what she is going through.
it would be a great help and a blessing , if you could e-mail back and forth, she needs someone right now,
and i think it would do you some good too.
my daughter is 25, her name is Corrine.
also it would be a big help to me to understand better the things we have to face in the coming future,
and the things we can do to make his life happer and easier.
my 9 year old grandsons name is Elias, he only has a couple friends.
its very hard for other kids to understand what happened to him, so they keep there distance.
there are aso many questions and no one to answer them.
we have been going through this all alone, other than doctors,
so it will be blessing if you can share your sons life with us and we can share my grandsons life with you.
thank you so much , mary
god bless you, i will be keeping you in my prayers.
marcyk13@yahoo.com
marcy

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Permalink Reply by Mary Sahagun on April 29, 2009 at 10:51pm

Hi Marcy,

I sent you a message....to this account....marcyk13@yahoo.com

Mary

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Permalink Reply by Jennifer on May 3, 2009 at 8:37am

Words cannot express my sorrow for you and others who have gone through this terrible tragedy. My son is 15, inflicted with DMD, and I'm already grieving because he is experiencing decline in his health. God bless you and your family.