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Eleanora, our Rainbow Baby, Turns ONE

Our silly Eleanora turned ONE today. And, oh, what a year it has been! A magical, wonderful, challenging, learning, growing year it has been as a new family of four! Eleanora is joyful and silly, curious and eager, and in all her tininess brings levity to the unrelenting ravages of SMA and our helplessness to it. Though we didn't expect it, she has become our Rainbow Baby of sorts.

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Lana’s Last Wish

Sometimes people do things and we really just don't know what to say. This is Yolanda “Lana” Beeler. Lana has been a wonderful supporter of the Gwendolyn Strong Foundation because of the Gooden family (she and TJ Gooden worked together) and their darling little girl, Nora. 

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Special Needs School Letter

This is a letter we share with the parents at Gwendolyn's school at the beginning of each year. The purpose of this letter is, of course, to teach about Gwendolyn and her special needs. But, it is also to simply introduce inclusive language. Most parents want to be embracing and want to raise open-minded children but sometimes fumble and feel nervous about how to go about doing that for fear of offending. We feel that by talking about Gwendolyn and providing sample answers to the typical questions we get helps frame a positive discussion and gives parents an idea of how to navigate the disability topic. Because, in all honesty, there is nothing worse than a parent silencing their child's questions with dirty look and a scurry away — that only teaches that difference is a bad thing. Gwendolyn has been embraced wholeheartedly at her school and we truly believe it is because parents talked to their children about her in a positive way — not with pity or with fear but in a way that reminded children that on the inside she is a kid just like them. We have had many requests for this letter from other special needs parents and so we wanted to put it on the blog to help others in their quest for inclusion. 

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Gwendolyn Goes Surfing

Gwendolyn went surfing! Yes, surfing. And it was absolutely incredible! Afterwards we asked Gwendolyn how she felt and she said “adventurous!” Yes, our sweet butterfly, you are definitely adventurous! And, once again, you have taught us to quiet our worries and get out there, try new things, and have adventures — because that is what living life is all about. NEVER GIVE UP. NEVER GIVE UP. NEVER GIVE UP.  

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Acts of Kindness: Full of Life Flatbread

Sometimes the good in the world is just what we need. On a whim, we stopped at Full of Life Flatbread in the tiny town of Los Alamos and talked with people we will likely never see again. But their generosity and random acts of kindness brightened our spirits. On this journey with Gwendolyn, there have been many ups and downs, but people have been so incredibly kind and we are constantly reminded of the good in the world because of things like this. These reminders do so much in healing our hearts and helping us to carry on. 

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Autonomic Storms

We have been doing a lot of this after our trip up to Stanford this week. Gwendolyn deserved some relaxation — we all did. So a few days swimming in Carmel is just what the doctor ordered. Our Stanford visit did bring some possible answers — though not great news. 

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Team OWEN raises $100,000!

Four years ago, what started as a friend turning his endurance run into an opportunity to raise funding for the SMA cause in Owen's memory has now turned into a community, a TEAM! And They Are Incredible. In four years $100,000 has been raised. A city's half marathon has turned into an SMA event. Thousands have been inspired. SMA research and support programs have been pushed farther. The full impact is immeasurable. One thing is certain — we are completely blown away by the incredible support and positivity of everyone involved with Team OWEN!

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Gwendolyn Has A Collapsed Lung

Gwendolyn is in the hospital with a collapsed lung. There are still a lot of unanswered questions, we are waiting for results from a whole new group of tests to try to determine what type of infection she has, and we are taking things day by day. We are seeing some improvements and feel encouraged by Gwendolyn's overall disposition but we are hoping for more answers today and tomorrow. Here is what we do know and a sort of run down of events.