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Mom's Cafe

A group for Mom's who like to vent and talk about life with DMD kids

Website: http://health.groups.yahoo.com/group/MomsCafe/
Members: 125
Latest Activity: Oct 23, 2017

WELCOME!

WELCOME!!! If you are a mom with a DMD/BMD kid (of all ages), you are more than welcome to join us and enjoy the fellowship, the friendship, the love, the support that each mom deserves.

Discussions

Facebook Parents of DMD Support Group

Started by Jessica Argueta Tucker Mar 14, 2012. 0 Replies

Our other children

Started by Geraldine Coolidge. Last reply by Grace Marks Mar 7, 2012. 4 Replies

Muscle Clinic

Started by Geraldine Coolidge. Last reply by Trinh Nguyen Feb 20, 2012. 4 Replies

Comment Wall

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Comment by vilma rodriguez on July 24, 2011 at 3:52pm
Angie: Those are very wise words because we need to understand everyone deals differently with DMD. Sometimes people are scared to what tomorrow will bring, but your boy is going to be your best encouragement because their inner strength will carry you thru. Enjoy the precious moments to the fullest and do not loose hope. Put God first and He will carry you thru.
Comment by Angie Doub on July 14, 2011 at 7:57am
We have been living with DMD 16 years now.  When we found out that Austin had DMD it was horrible.  My husband could not deal with it.  All I wanted to do was know everything I could about DMD.  My husband on the other hand wanted to know nothing about it.  I turned to family and friends and of course my church family.  It took my husband several years to come to terms with this monster of a diease.  It takes men a little longer to deal with things.  Remember we are made of steele (moms).  Men can not handle things like we can.  Yes, we hurt very deeply.  These are our sons!  Dads cant deal with the pain after all this is their son as well.  They want them to be strong, ball players, race car drivers, and all the things they think a boy should be.  We want that as well but we know how to accept our sons just the way they are.  My son has played baseball, raced his wheelchair, and is very, very, very strong (it may not be physical strenth) but he is the strongest person I know.  My husband is a good dad to Austin and our daughter Casie.  We have been together 23 years now (yes there have been ups and downs) I am so thankful that I gave him time to deal with this monster because I think that Austin would have missed out not having dad around all the time.  Give the men in your life a little time to deal with things and maybe things will work out.  I know from alot of my friends living with DMD that sometimes it is best to just walk away (and sometimes that is all we can do) but please give everyone in your life time to deal.  We all do it differently and at different paces.  I know that I have said alot but I hope it will help one of you out there.  Love your sons with all your heart and soul because life is very short for all of us.
Comment by Trinh Nguyen on July 14, 2011 at 4:47am

Hello,

I like this group. I am reading moms' comments here and can feel supportive a lot. Yes, as Vilma said he needs us to be strong so that he can be strong. Appreciate yr words.

Trinh

Comment by Dee on June 28, 2011 at 4:45pm
Recipes for our Son's cookbook was lanched and you can order it today from Amazon.com...this cookbook will benefit PPMD 
Comment by Perlita & Gordy Hains on June 20, 2011 at 2:16pm
sorry - i haven't been on in a while -  miss catching up w/ other DMD moms.  Levi is 4 1/2 and stable - no steroids yet!  Our 2 older boys (and Levi) will be attending conference this year w/ us for the 1st time - I'm a bit nervous for our older sons (11 & 9)... how do I prepare them for what they may encounter?  we have been very honest w/ them but don't discuss"life expectancy" issues, etc.  any advice?
Comment by Amy Sienkiewicz on June 19, 2011 at 11:11pm
Hang in there Joanne. Sending prayers your way!
Comment by Joanne Ewins on June 19, 2011 at 4:35pm
Thanks for everyones comments.  Sorry for going on and on before didn't realise at the time how much I had said.  Feeling more positive and much better now.  Very nice to get such support from people. Just wanted to say went ice-skating yesterday with my daughters vision support group they meet up very occasionally. We all went including both my sons.  Young man in charge of rink got Robert on ice in wheelchair  he said they do it all the time.  It was fantastic he had so much fun it was great to see.  I think this put the smile back on my face.  It was a fun afternoon.  Definately needed this. 
Comment by Sharon Kippers on June 15, 2011 at 2:31pm
Just wondering if anyone else is going through this. Lately my oldest son Shaun is being very angry and moody and will just not listen. I know that prednisone can cause these behaviors but this is just getting out of hand. Trying to stay patient with him  could he be realizing that he is different he is only 4
Comment by Kathy on June 14, 2011 at 9:03pm
Hang in there Joanne.  We are all here for you!
Comment by Andrea Cleary on June 14, 2011 at 8:21pm

Joanne,

Feel free to share with us (me) any time you need. It's not the same as having a supportive partner, but like you said, sometimes we just need to get it out. I had big marital problems too, had counseling, but men just don't understand how hard it is to be a mother, especially to DMD kids. And it's so hard for them, the guys who won't /can't talk about it. They just retreat into "the cave", as I like to call it.

You have a lot to deal with alone. I bow to you for your strength and courage. It's so hard to stay in the here and now, enjoying things as they are when our minds want to (and sometimes have to) jump to the future.

Please hang in there Joanne. We can do this, all of us. For the boys.

Any time you want to talk, I will lend you an ear. Warning...I'm known to do a fair amount of complainging myself, and you may not get a word in edge-wise!

Andrea in Montreal

 

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