Comments on: A Community Divided

By: Christie Thompson

Christie Thompson — Wed, 01 May 2013 23:12:11 +0000

As another SMA Type 1 family I can agree with you on every statement. It’s sad we can’t all support whatever choices others make. In the beginning I was totally against trache but when the moment came for that decision we did what we thought Zac wanted and its worked out for us. We have received many comments that “letting him go” would have been better for him. I beg to differ. In the beginning our doctors told us there was no “right” choice and every SMA child is different. Regardless this is a cruel painful experience for anyone and we should all support and stick together. Stop by our Facebook page Prayers for Zachary if you get a chance. He was diagnosed at 6months and trached at 8 months. February 28th we celebrated his first birthday!

By: Denise Karabinus

Denise Karabinus — Mon, 29 Apr 2013 19:01:54 +0000

This is so well written and thought through. I have benefited greatly from the on line SMA community and have not seen or experienced any of the negativity that I have heard has existed here in the past. I have felt much support, positivity and learned a lot from the forums. I joined this community in June 2012 and our son lived for nearly 7 months and died on Jan 2nd. 2013 using a NIV palliative approach. Perhaps the community is evolving and learning from post like these? Maybe we are learning to be more supportive and keep harmful negative stuff out of it. I hope so. Thank again for your posts they are clear and educational. I appreciate your perspective.

By: Marietta Engle

Marietta Engle — Tue, 01 May 2012 14:03:00 +0000

So well written Audra. We’ve only been diagnosed for about a month and half and I’ve just started to realize the tension between the groups after I joined some of the support groups. I’ve been following Avery’s Bucket List and I’m so worried for them. Their happy attitude has been such an inspiration for me this week but after reading the comments and backlash from some of these other families, I am thrown to the floor again by the sadness. There’s not even safety and understanding from the SMA community and once again I feel so alone and sad and scared. I wonder how much of this tension has in itself kept SMA quiet, because these decisions we have to make, well they aren’t things you want to talk about out loud, so is that contributing to the SMA silence and lack of awareness? I love my daughter so much I just want her to be home with us.

By: Sheree Norton

Sheree Norton — Thu, 19 Apr 2012 16:36:10 +0000

So beautifully stated. Just today, I broke down reflecting on all the decisions we have made for Savannah and questioned have I made the best of them for her quality of life. When I saw this today it was a God send because I am uplifted that as you stated “quality of life is subjective”. So, I need not worry am I being judged by others or ponder the decisions I have made for her. My intentions have always been in her best interest and our love for our precious girl. Thank you for your courage and genuine love for the SMA community.

By: Megan Morseth

Megan Morseth — Wed, 18 Apr 2012 19:43:29 +0000

Our dear friends’ sweet baby girl died of SMA less than three years ago. I know for a fact that they miss her desperately every single day. How she lived is so much more powerful and meaningful than how she passed. To judge her family and the choices made (and I use that word “choices” with great reserve. The decisions made by SMA families are so limited) does little more than inflict additional pain where there is already so much.
Perhaps every parent in judgement of one-another should reflect carefully on his or her own behavior. I’ve always believed that those who so harshly judge are often those most deserving of close inspection.

By: Andy's Auntie Audrey

Andy's Auntie Audrey — Wed, 18 Apr 2012 19:04:28 +0000

I too am sickened that ANYONE who has seen SMA in action and the effect it has on both the child and the families could even have such a vicious thought enter their sphere of consiousness. Andy was one of the toughest little fighters I will ever have the honor of meeting or calling family, no one fought harder to try to save him than Alan and Audra nor could they have done more in their circumstances and the hand they had been dealt, and for that I know Andy is very proud and when the most difficult choice came at the end Andy took the necessity for them to make that final decision away and made it for them, while we all held him as he decided to leave. The only thing I can think (not having read the post) is that this woman is so angry at her situation and the helplessness she feels that she wants to lash out at anyone, perhaps because she feels she should go the road of palliative care but doesn’t have the courage and is angry with herself. I don’t know but really SMA is the problem here and all families concerned need to support each other REGARDLESS of whether you agree with their choices or not. Thats my thinking anyway.

By: Kristen

Kristen — Wed, 18 Apr 2012 18:30:37 +0000

Sure your heart hurts that this had to be your blog today. Thinking of you. xoxoxoxo

By: CATHERINE DUNLOP

CATHERINE DUNLOP — Wed, 18 Apr 2012 15:18:53 +0000

AUDRA,

THANK YOU FOR YOUR INSIGHT AND CLARITY TO YOUR EXPERIENCE. I AM UTTERLY STUNNED AND APPALLED THAT A WOMAN WROTE ON FACEBOKK THAT PARENTS OF DECEASED SMA BABIES HAVE “MURDERED” THESE INNOCENTS. I AM THE GRANDMOTHER OF SWEET ZANE WHO PASSED 2 WEEKS BEOFRE PRECIOUS ANDY. THIS WOMAN LACKS HUMANITY AND SHE SHOULD REFLECT ON THE TYPE OF INDIVIDUAL SHE HAS DISPLAYED HERSELF TO BE. SHE NEEDS TO REALIZE THE INCREDIBLE PAIN SHE HAS CAUSED SO MANY LOVING PARENTS!! GRIEF AND SADDNESS VISIT US ALL AT SOME TIME AND THE LOVE AND SUPPORT OF OTHERS GUIDE US THROUGH. WHEN SHE FACES SADDNESS, WILL SHE HAVE THAT…SHE NEEDS TO REVIEW HER LIFE.

CATHERINE DUNLOP

By: Meredith

Meredith — Wed, 18 Apr 2012 12:09:38 +0000

Could not have said it better myself. Every time I hear someone complain about a parent who chooses palliative care, I remind them that that is their decision for their child, not yours. It is no different than people saying to a parent who takes more drastic measures that they are only prolonging pain or that the quantity of life is not as important as the quality of life. We cannot judge one another. We are in this together. We must support one another’s decisions and fight against this disease that affects us all, not each other.

By: Angela Birkle

Angela Birkle — Wed, 18 Apr 2012 09:44:15 +0000

Well said Audra. So beautifully and eloquently put. Unless you walk a mile in anothers shoes you cannot judge. Regardless what we face as mothers we each make the best decisions for our children at the time. Andy is one lucky boy to have such a wonderful mother who lived him and did right by him during his short life and who continues to do all in his memory now. God bless you and your family Audra. And thanks for sharing something so personal. xo