Year in Review - 2019 Highlights

Dear Hope for HIE community,

2019 was an incredible year for our organization. We grew to serve over 5,000 families worldwide, which brought upon wider recognition from our clinical partners, opening doors to collaboration.

Recognized by Facebook for Community Building

We began the year being recognized by Facebook as a leading community on their platform at the 2019 Facebook Communities Summit, as one of 400 hand-selected attendees.

HIE Awareness Month

We selected the theme of "Hope Never Ends" for our 2019 HIE Awareness Month in April and had unprecedented reach and participation. Hope for HIE board member, David Ford, worked with legislators to recognize April as HIE Awareness Month, and hosted a delegation of local families to be recognized. We spent time on April 20th honoring and remembering the legacies of our HIE children taken too soon on HIE Remembrance Day. We told the stories of over 500 families through social spotlights, our HIE Remembrance page on our website, and video stories across our social channels.

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Surviving the Holidays

The holidays can be a hard time for families of children with special needs.

Running around to visit family, often toting extra supplies with you, talking about the realities our children face and playing the never-ending comparison game when being around other children all adds up to extra stress. Add that to the extra to-do list of holiday shopping, cooking and errands, and the holidays can feel less and less joyful.

Ellen Seidman, who runs the blog "Love That Max," talked with Hope for HIE about how to survive the holidays. 

 

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Just Say HI!

When Scott and I decided to move to Los Angeles over three years ago we weren’t too sure about what to expect. It was scary and unknown. What we found were the some of the best therapeutic & medical resources in the country and a village of other families just like our own. Families who could relate perfectly to our journey. And it helped us to feel “normal.”

What I also found was anonymity. Because while I had my village, I was also in a city with millions of other people. If you know me, you know that I love being outside and I love walking. And when we were out walking around in a city with millions of others, no one paid any attention to us. I walked down to the same grocery store in my neighborhood several times a week for over two years. And no one ever learned my name, and I never gained familiarity with the employees or other patrons there. And I loved it. I needed it. I needed to be unnoticed. Los Angeles gave me anonymity and time and space to grieve and start to heal. But then things started to change. The grief softened, we found our groove with Elodie, and Dutch came bouncing into our lives. It hit Scott before me, but we both got to a place of no longer wanting such anonymity. We missed home and everything that comes with “home.” We missed our South Louisiana community and everything that comes with being part of such a special place.

 

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Sharing Accurate Information about HIE

HIE is tricky. There is a vast spectrum of outcomes, no two injuries present that same way, and for many, you won't know how HIE fully affects a child until they are much older because of how brains develop. For some, it will be obvious in the first few months, for others, it may take years until they reach school age, and for some others, they may question if something is because of HIE or just a nuance of who their child is. 

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Welcome to the Island

There's a famous poem that circulates often within the special needs community called "Welcome to Holland". Many of our families find solace in that poem, and many do not, and a few have created their own.

Here's Nick Burton's version, "Welcome to the Island".

When you're going to have a baby, it's like planning a fabulous vacation trip—to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michaelangelo’s David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, in midair, a hole opens in the plane's fuselage and you and your spouse are ripped out.

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