Have you heard of Marie Kondo and her method of organization? Marie Kondo is an organizing consultant and author of the best-selling book, The Life-Changing Magic of Tidying Up. Her method encourages getting rid of physical items that do not bring joy into your life.
At Families for HoPE, we have nearly 1,000 HPE families in our database, and as we review each record in our database, we recognize that every child and HPE family brings great JOY into our organization, our lives, and our world! We are keeping all of your records because you’re important to us, and we want to stay in touch with you.
As a result, we are embarking on a project to review each database record to ensure that we have the updated and most current information for your family. Volunteer Theressa Newlin (HPE mom to Tyler from Texas) is coordinating this project, and if Theressa reaches out to you, please know that she is doing so on behalf of Families for HoPE.
If you would like to update your family’s contact information or provide new or additional information related to your child, please feel free to reach out to Theressa at Theressa.Newlin@FamiliesforHoPE.org.
In December 2008, my Zoé was born, and I found out a few days later that she had semi-lobar holoprosencephaly. As soon as I could, I jumped on my cell (this was before smart phones, just think looking something up in a 1″ x 1″ little screen) to try to find anything I could about HPE. Shortly after that, I had found out there were three types and that was pretty much all I could find. No Facebook group I could find, just a little girl in Europe. For about a year, that is all I could find. As a single mom, hospital stays were long and very lonely).
Growing up, I dreamed of being a race car driver, and when that dream became a reality for me, I knew that I wanted to make a difference and be known as a man and driver who stands for something. In 2006, I met a little boy named Sammy Harley who taught me about having HoPE.
My mom is a pediatric nurse, and Sammy was one of her special patients. After meeting Sammy and being touched by the heartwarming stories of other children with HPE, I offered my race car as a vehicle for helping to raise awareness and inspire HoPE.
In 2012, I joined the board of directors of Families for HoPE, and I currently serve as President of the board of directors. It is my privilege to lead this organization, and I hope I have made a difference in the lives of these incredible HPE families because they have most certainly made a huge difference in mine.
The blades of the grass softly whispered their song in my ear, as I laid sprawled out on the checkered cloth, enjoying our teddy bear picnic. Momma made our childhood magical. From tea parties in the garden, family night games of drawing in the dark and Red hots in our hot cocoa while we stared through the skylights waiting to see a glimpse of Santa’s slay.
Daddy read every book series out there in the 80’s to my baby sister and I. You see Little House on the Prairie was my favorite. My momma fixed My sis’ hair like Laura Ingalls and I always looked liked Nellie Olson. I guess that could be why it was recommended that I revisit kindergarten for the second time. To learn better social skills. Apparently I thought I was the teacher.
That same year my older sister Christie was married in March. I was dripping in cream lace and peach flowers. It snowed that morning.
Now there is only 3 of us siblings at home. By the time I was 10 my brother moved on and I became the oldest.
I debated my way through jr high. Danced on the hearts of many in drill team and in my senior year was captain of the cheerleadering squad.
The van was bulging at the seems. My Nellie belle, a 71 VW bug, was in tow behind. Off we went to Southern California from suburbia, conservative Idaho. Nothing could have prepared me for that eye opening experience into the world. I graduated co-valedictorian with a degree in Interior design.
I tempered with fate, falling for business in front and party in the back, criminal boy.
4 months later pregnant and married. Then 4 years later contemplating suicide and drowning in depression. I tidied up and threw away the debris. My little boy, Gavin and I had a vibrant new beginning.
My heart flutters, swooning over the freckled faced red head. Was it Love at first sight? Matt and I met on June 9th, a month later at minor league baseball game I was wrangled into playing a game on the field. Guess what’s in the box! The last box was a ring, Matt was on bended knee in front of a crowd of thousands professing his never ending love to me. A month later we were married in a funeral home. We drove away hearing the clanging of tin cans behind the hearse.
Shortly after Samis 2nd birthday the Economy tanked and we moved half way across the states to Texas. The next to come was my Izzy bug. Now there’s 3. We were happy and fulfilled. Life was planned out, little did I know that God had other plans. After a failed vasectomy, we were expecting our 4th child.
I stood there knowing that was the last time I would see my daddy. His raspy voice said I love you and drive safely. 26 hours later we pulled into the driveway. At 11pm the call came in, daddy was no longer in pain. We honored daddy by naming our 4th child after him, Charliedawn.
Early Wednesday morning my husband and I were crammed on a small bench in the NICU. The sun filtered in warming the ice cold room.
The room became a blur, my head was spinning and the tears stung my cheeks. Words were spewing out of their mouths like lava hitting the ocean; vegetable, no quality of life, will NEVER know who you are and won’t live past 6 months. Our world fell apart.
The phone rang, on the other end was the PICU Hospitalist. My breathing quickened, my heart sank and the words “nothing more we can do” echoed in my ears. However by the end of the day Charliedawn starred death in the face and screamed I’m not done yet! It’s my birthday and I made it to 1.
Shortly after Charliedawns trach surgery, the 3 kids and I crammed into the mini van and ventured out to the next chapter in our lives.
Cactus and rocks as far as you could see was our landscape of our future.
Maybe the journey isn’t so much about becoming anything. Maybe it’s about unbecoming everything that isn’t really you, so you can be who you were meant to be in the first place.
Families for HoPE, Inc. is a 501(c)(3) nonprofit organization formed to address the needs of families and children diagnosed with holoprosencephaly (HPE) and related brain malformations.
Deeply committed to raising awareness of holoprosencephaly, a group of HPE families in Arizona are joining together to host an awareness event and fundraising walk on November 9th 2019. The event will be held at Power Ranch Park 4546 E Haven Crest Dr Gilbert, AZ 85297
While I’m preparing to complete the 2020 conference registration for Dorothy and I, we were talking about last year’s event. 2018 was my second conference. The first was in 2008 when Chloe was a baby, and I learned so much about HPE and about my granddaughter.
Like a lot of families, when we got her diagnosis, even though the doctor told us not to go home and google it, we did. It was scary seeing “the worst”. Then we went to the conference and learned that it isn’t all gloom and doom. I met a young lady that at, I believe, 6 years old told her doctor her name and said, “I have Holoprosencephaly”. I was just learning how to say it and still look it up to spell it.
In 2018 Dorothy and I had the opportunity to attend the conference again. This time it was at Great Wolf Lodge in Mason, Ohio as it will be in 2020. The chance to see families I met in 2008 and to meet new families was too much to miss out on so we loaded up and headed north. I’m sure some of the families got tired of me and my camera. I took hundreds of pictures during the conference. Some of the kids became favorite subjects of mine and if you see the pictures you know why. I think it is the eyes.
Getting the chance to watch these families (mostly the kids) interact was worth more than any registration fee. I got to meet some great people from as far away as Holland. Miss Kate and her family became friends who we still stay in touch with. Unfortunately, Kate and the crew will not be able to attend the 2020 conference, but we look forward to seeing them again in 2022. Last year’s conference gave us the chance again to learn more about these amazing kids (I guess I should say people as some are adults now). The speakers that come are some of the most knowledgeable in the field and give families hope instead of just telling parents how short their life will be.
As I look back through these pictures again, I see children interacting with their siblings and other kids. I see wonderful smiles on faces that can light up a room and make you smile on your worst day. Our children are full of life and have purpose.
At the 2018 conference I also attended as a vendor. I make vinyl decals and through my decal booth, I met even more of the families and learned some of their stories. While designing decals to fit a specific family, we would talk, and I got the chance to learn about them and their child. I wouldn’t give up that opportunity for anything.
On top of the invited speakers, they had an evening just for them to go, relax and get to know each other more. The guys, well we had an evening to go and see one of the best collections of classic cars I have ever seen and to bond and get to know each other better as well.
The facility has a great pool area where the families got the chance to go and spend time relaxing and be with old and new friends. It’s also right next door to Kings Island Theme Park. Some of the families and a lot of the older kids made a day of it on the rides there.
Overall, the conferences are great experiences for families. There is no better way to learn about Holoprosencephaly than to be in a building with a group of families who are going through the same thing as you. I am so looking forward to attending in 2020. While I’m thinking about it, I want to say thank you to everyone who had a part in all the past conferences and for those who are working so hard already for the 2020 event.