Sunday, August 2, 2015

1 in 60,000 doesn't feel so lonely anymore

Scared     Rare    Lonely    NICU    1 in 60,000    X Linked Hydrocephalus      L1 CAM

Can you relate to any one of these? This is what we were up against when our oldest son was born. A condition so rare that the genetic department in our clinic has never seen another family with this. Doctors told us to prepare for the worst. We made many attempts to connect with SOMEONE, ANYONE, else that may be dealing with this same condition. We just couldn't believe that we were the only ones out there. But all of our searching came up with nothing. NO ONE like our son.
 
Life was hard. We didn't know anyone else with a special needs kid, much less one with so many medical challenges. For 2 years we leaned on each other and God, because we had no one else. We got through life...some how. (looking back I really don't know how we did it)
 
Then one day last August, after blogging for a few months, and sharing our story on social media, someone got in touch with me and said there was a Facebook group with other families like ours!!!!! She accepted my request to join the group and I didn't sleep very well that night. I was up scanning everything in the group. Reading all the posts. Finding out where everyone lived and the ages of the boys. That day changed my life! 
 
This last weekend was another moment in time that I will never forget. 21 boys from this Facebook group, and their families, all met in person for the first time! There are other families that couldn't make it for various reasons, and  we were sad that they weren't there, but the ones that did make it had a great time. 

21 boys with L1CAM syndrome all in one place
I can still barely wrap my brain around how great it was. Our lives have changed so much in the last 3 years, and even more so since finding this group of families. It has saved my soul in more ways then they may ever know. Just knowing that they are there brings peace and joy to me. We support each other when one of our boys is having a bad day. When someone is in the hospital we pray. We go to each other for advice. We vent when doctors and therapists are not listening to us. And when a boy passes on to the next life, we are there for the surviving family members. We help each other in any way that we can through long distance. 

2 boys, 1 rare connection, forever friends

This picture sums up the feeling of the weekend. We all hugged as soon as we saw each other. We were all so excited to finally meet in person. Some of us sat back in awe. Some cried tears of joy. Some were thinking about the boys that have been lost to this disorder. We were all missing the ones that couldn't make it. We were all learning from each other.

Here is our son, Noel, with some of his new friends.....
Noel and one of his new friends
2 different boys that do the same things
Just 2 friends going out to eat
A parade of wheelchairs walking back to the hotel
I didn't want the weekend to end. I missed my bed, but wanted to stay and soak in the moments. I wanted to get to know the boys, and their families better. I want to bring them all back to my house so we can all live together. I want their boys to teach our boy. I want to do it again next weekend. I want to learn everything that they know, so we can do it too.

My heart is full. I feel so blessed to have these people in our life. No matter the distance, or year, we will see each other again, and we cannot wait! 
 
Here are what some of the other families have said...

"This L1 journey feels less like 1 and 60,000 and more like family."
 
"Arriving as strangers and leaving as friends."
 
 "Made our children feel normal, we were the weird ones"
 
 "Happy to find new lifelong friends/ family"
 
 "Meeting each other was wonderful, SeaLife was fun but sitting around while we visited and our boys played was priceless!"
 
Friends that have become family. 
 

 


 

 
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7 comments :

  1. I am sad to have missed it (the weekend)but so grateful that you had it. Just the start of so many more things to come.

    ReplyDelete
  2. My daughter delivered twins a yr ago Anastastia and Gavin, Gavin having the syndrome. My heart pours for her and her husband. She keeps me posted on information that finds about this syndrome.
    I am so very proud how the 2 of them handle certain situations and happy to see there is support for them.

    ReplyDelete
  3. My daughter delivered twins a yr ago Anastastia and Gavin, Gavin having the syndrome. My heart pours for her and her husband. She keeps me posted on information that finds about this syndrome.
    I am so very proud how the 2 of them handle certain situations and happy to see there is support for them.

    ReplyDelete
    Replies
    1. Please message me at tfelix1612@gmail.com with any questions, concerns, or to get connected with this group through Facebook

      Delete
    2. Please message me at tfelix1612@gmail.com with any questions, concerns, or to get connected with this group through Facebook

      Delete
  4. So happy to hear that Francesca! I would love to hear more and connect with you and your daughter. I can get you in touch with this amazing group through Facebook. They are very open and honest with any questions, concerns and to work through problems with.

    ReplyDelete
  5. So happy to hear that Francesca! I would love to hear more and connect with you and your daughter. I can get you in touch with this amazing group through Facebook. They are very open and honest with any questions, concerns and to work through problems with.

    ReplyDelete