I have been part of a local mom's group for almost five years, and I have grown to count on my mama friends for advice and support through all of life's trials, and I've shared with them the joys of motherhood. When I told them the news that Max had Duchenne muscular dystrophy, I received an amazing outpouring of support, and I felt so fortunate to have these ladies in my life. However, as time has gone by, that support has waned, and my posts about various fund-raising endeavors, including Coach to Cure MD, were mostly unanswered. The straw that broke the proverbial camel's back was my post about Coach to Cure MD, in which I shared some deep feelings about Max's diagnosis. Out of 40+ members (and more than 20 views of my post), I received only three responses.

With tears in my eyes, I posted the following message:

I'm not posting this to make anyone mad or cause drama, but I have to tell you my feelings are hurt. Yesterday, I posted about Coach to Cure MD, and basically poured out my heart about my feelings about Max, and I received one pm and two responses (thanks to the three of you!), although there were more than 20 views. It's so hard to share feelings like that and make myself vulnerable, but I needed support, so I thought I'd try to get that support here. I have traveled through this mothering journey with many of you for more than four years, and to have such little response really hurt.

Perhaps you don't know what to say. I realize now in hindsight that there have been times in my life when I avoided someone who was going through a very difficult time, like a death in the family or a miscarriage, because I didn’t know what to say and felt awkward. Let me tell you, now that I’m on the other side of that scenario, I know how much it means to hear any words of support – doesn’t have to be perfect, and it doesn’t matter what exact words are used, just to have any response would be nice. For many of you, Max may be the only person you know with a serious disability -- actually, he's the only person I know as well. I don't quite know what I'm doing in these uncharted waters either, so maybe we can learn together.

There was such a lovely outpouring of support when Max was first diagnosed, and I still need that support, probably even more now that the dust is settled and I'm learning more about Duchenne. Perhaps it’s hard for people to make the mental leap to understand how devastating this disease is, since all you see now is a happy little healthy guy. He is just a regular kiddo, who is learning to sign, loves puppies and kittens, and is already quite skilled at taking his big sister's toys. And of course, I see that little healthy kid too, but my mind can’t help but go to the probably inevitable future, with steroids, slow but steady loss of the ability to move, wheelchairs, cough assist machines, breathing machines, etc., and all of the social issues he’ll face in school and in society at large, and the devastating fact that I may lose him before he reaches his 20s.

It meant so much to me to hear everyone say, "If there's anything I can ever do, let me know" when I first posted about Max. And I've tried to take you up on that offer, by asking for help with various fund-raisers over the past year, but there has also been very little interest. (Thank you so much to Heather and those who did donate or help pass the word along.) I understand times are tough, but even if you don't have $5 to give to Coach to a Cure, I would have so appreciated a "Good luck to ya" or a "Hey, I can't give, but let me forward it to my facebook friends, or people at work," or whoever, or just a message to hang in there, or you're praying for us, or something. (And some of you have indeed done that, and I thank you.) And maybe some of you are forwarding things on, or praying for Max, and I just don't know about it. If that's the case, I apologize. And a couple of you have been there for me emotionally in other ways, catching up at a lunch or talking to me at the Bounce, and that means a lot to me. And Kimberly, you know how much I appreciate having you as a friend and everything you do for us.

Perhaps people are uncomfortable being asked to give -- I know money is kind of a strange, touchy subject. But as I stated yesterday, the more I learn about Duchenne, the more frightened I become that there won't be a cure in time to help Max, and the more desperate I am to raise money. I hope you have patience with me for all of my fund-raising endeavors. I'm really not trying to be pushy -- there's just so much at stake.

Maybe it’s a mistake to post this, and maybe the hurt I feel towards the group is just a symptom of my anger and hurt about Max’s diagnosis. And you guys don’t “owe” me anything – I don’t want to develop an entitlement attitude, and I certainly don’t want Max to either. I just don’t want to bottle up all these feelings.

I hope I haven’t offended anyone. I guess I just wanted to make you aware of how wonderful support is, and how much I need it right now. My life has changed a lot in the past year, and since I’m working full-time, I feel that I’m losing contact with many of my friends, so the board is even more important for me. Sorry for the novel, and thanks for reading. ********************************************

I have actually received a huge outpouing of love from my friends. Many of them indeed said they just don't know what to say to me, and are not sure to act around me when they see me, and don't know how to respond when I post about Max. Others said they are forwarding info about Coach to Cure MD to everyone on their Facebook friends list and e-mail address books or making a contribution themselves. I feel that my message cleared the air, and I'm hoping my board friends will become comfortable around me again. I'm still the somewhat goofy mom they've known for years: now I'm just a somewhat goofy mom with a purpose!

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Comment by Wyatt's Mommy, Melissa on September 1, 2009 at 2:18pm
Veronica, I am so sorry that you felt "alone". There are days that I do too. But I promise you, that you are not alone. You can email me at 3400squarefeet@comcast.net anytime day or night when you are sad, mad, angry, happy, whatever. I will always respond. Our boys are about the same age (Wyatt is 18 months) and this journey is still so new for our family. Our 13 year old has a form of Autism that he was diagnosed with in 2005. Everyone that was my friend, or I thought that was my friend, all of a sudden had excuses why they didn't want to "hang out" with us anymore. So when Wyatt was diagnosed I wasn't surprised that our friends all of a sudden were too busy for us again. People just don't know how to react. We met a DMD boy a while back who is in a wheelchair.and my mother in law said, "Well Wyatt's case isn't that bad." People just truly don't understand what we are going through. Moms on this site have really helped me a lot, so remember no matter what, we are your "friends" and as a group we will fight this together. Your true friends will come around, they just don't know what to do. I have to educate my family and friends every single day! I'm thinking about you today, hoping that you are feeling better.
Melissa :)
Comment by Dee on August 17, 2009 at 11:59pm
I have to say that as long as I have been in the Muscular dystrophy community (well now about14 years)...I have found that you will find out who your true friends are amongst your neighbors, schools, work, church, etc..etc...and one thing I have leanred that no matter how much you want to do to save your child's life with all the fund raisings, you will find that with most, they will close the door on you. they will be weary of the "constant" asking on a daily basis even if it is just annually. Pretty soon, they won't even open your emails, they won't answer your phone calls, they won't respond to your postal mails.

I don't know why our family and friends get like this. Perhaps they don't know how to respond? Perhaps they are as afraid as you are. Perpahs they choose to continue to be ignorant about it. I don't know. I do know it is very discouraging and sad that they don't understand what YOU as the parent is truely feeling. IT does get very fustrating and depressing. It does.

SO my suggestion is this...don't hit the same people every year. Alternate with some and try to create a new fond of friends or whatever. But don't be so quick to ask, as much as you may want to. I understand the urgency...we as parents do. But they don't understand that because they are NOT in your shoes and they will never understand it until they have to personally experience it.

Most of my family ran. Got tired of it. I have one cousin who now just doesn't respond to me at all. Nothing. the sad part of it, is that she does not know I have not done any fundraising for several years now and she still chooses to ignor me and Tim. But that is her loss. Later, she will regret it. I can't talk her into anything or force her to listen to me as her cousin what our daily lives are like, never mind the fundraisings.

You will find a unique and wonderful strategy to resolve this issues amongst friends and family. It will come to you. Try not to get discourage...I know easier said then done. But look at it this way...God has a wonderful plan for YOU and your family. He has alot in store for all of us. And He will bless you in your endeavors to not only save your child, but the many out there. IT will come to you one day...like a light bulb. Just wait. Trust Him.

Safe hugz!
Comment by Tulika on August 16, 2009 at 4:42am
For what ever reasons we are in the lead of medical innovation. Most of us are reading about how doctors are working to fix defects in the myscle gene. Well if the science of exon skipping and stem cells, will hold good for the muscle gene it will hold good for genes which make one loose hair, detoriate vision etc. I have been able to successfully get people intrested if instead of just highlighting my pain I bring into the discussion how the medical research in which my kids is participating will help fix a issue someone else is facing. Thre is a huge potential of making use of science invovled with Duchenne help almost every individual.

One of my friends is having diabetes and followed the same pattern of very high initial invovlement then slowly loosing intrest. No cribs, he has his share of worries. However since I shared with him some of the developments on how stem cells are going to fix diabetes, this guy is seeking information on new developments, and looking for ways on how he can also help in any medical research.

I do feel that people will get genuinely involved only if they see a part for them. We have to do a little reorinetation and the participation will be there.
Comment by Jacobs Mommom on August 15, 2009 at 4:23pm
This disease will surely weed out the true friends from the fair weather friends. It's funny how people will give to cancer fundraisers year after year but seem to think one and done is all it takes for Duchenne?
Comment by Tonya on August 14, 2009 at 9:17pm
I too have also felt the same way about my friends. Honestly, I hear more from certain friends and less from others. I do feel like a lot of my friends either don't know what to say to me or I have one that continually talks about it and how lucky she feels to have her 3 healthy children. Obviously, I try to avoid her. It's amazing how people don't know what to say, I mean we are the same people. Yes, we have a very difficult situation to deal with, but we need people's support. I have found that I have a few very good, supportive and wonderful friends and a lot that just plain don't get it. I hope you feel better, thank you for sharing your feelings with us, we all need each other.
Comment by Jessica Rownd on August 14, 2009 at 6:14pm
I have felt the same way about some of my friends. Many have hung in there over the past 2 years but others just avoid the topic. It is definately going to be a long lifetime with our boys, and I know it is our hope that our friends will stand by us, atleast listen when we need an ear. It is good to know that we have each other here at PPMD, even though we don't live near one another, we are able to be a support for one another.
Jessica

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