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.
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.Read more
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.
HIE (Hypoxic Ischemic Encephalopathy) is one of the leading causes of Infantile Spasms, a rare but potentially catastrophic form of epilepsy. In 2019, Hope for HIE was invited to join the Infantile Spasms Action Network to collaborate with other patient groups, researchers and clinicians to move forward research and awareness so patient populations can be educated on what IS looks like and seek quick treatment.Read more
In 2018, a member of Hope for HIE's community connected our organization to TREND Community, a company that was started by two moms who had originally connected through a Facebook group dedicated to a specific diagnosis each of their children shared. Over the last several years, these two moms saw the qualitative data that was shared about the condition and was leading to better treatment options for their children. Thus, TREND Community was formed. An organization focused on "turning anecdotes into evidence".Read more