Today marks the third year anniversary since I first lost a child from The Tribe.
It came unexpectedly.
Out of nowhere the news dropping heavy on my heart.
I never thought that I’d love another child as if they were my own.
But the real fact is I do love them all.
Each and everyone that we connect with on the special needs journey.
His name was Brayden.
His mother and I connected early on as our boys were roughly around the same age.
And although each of our children had a completely different diagnosis our pain and joy was universal.
We each faithfully read Caringbridge blog updates that the other would post.
We invested time in caring how each were doing, and more importantly sharing news of the day of how our children were doing.
Offering each other comfort, advice and support.
Although non-verbal Brayden spoke volumes with his incredibly sweet eyes that shined bright through his signature blue famed glasses.
I never had the pleasure of meeting Brayden.
But it didn’t matter.
Cracks where so many other children have also found their way into throughout the years.
Reading his mother’s words about the circumstances of his passing was devastating.
I sat at our kitchen table and just heavily wept for a child that was not my own.
I wanted it so badly not to be true.
Re-reading it over and over those words in disbelief like somehow if I read it again and again it would change and somehow bring him back into his mother’s loving arms.
But it didn’t change, no matter how many times I re-read the news.
From a long distance away I followed his mother through the words of her pain.
As she expressed the worst agony and deepest grief a person could ever feel.
I lacked proper words of comfort.
From afar I watched her struggle and grieve, and struggle some more with things like finding what to do with the medical equipment and devices.
It’s hard to find yourself after what defined you was caring for a medically fragile child every moment of the day.
Our identity becomes our children.
We lose ourselves while caring for them.
And when they are gone our existence seems insignificant.
But as the warriors that we know how to be, she turned her tremendous sorrow into efforts of helping and reaching other families by starting a foundation to assist other families.
Three years later her heart equally as crushed and forever broken - a mother’s wound that will never heal.
I sense in her words to this day how paralyzed she often feels.
People might not realize that this is something that you will never get over.
You can never get over the loss of a child.
Losing one from The Tribe never becomes any easier either.
Inevitably because of our children’s fragile and beautiful existence there will be many we lose from The Tribe along the way.
There have been several since Brayden; Izak, Santana, Tripp, Ashley, Sam, Laiken, Gavin… the list is long but I remember them all, each and every one and have cried countless tears over.
Some of their mother’s have stayed actively involved in the special needs community, where others have pulled away feeling like they no longer belong to The Tribe after their loss.
There is no right or wrong way to grieve.
No right or wrong way to move forward the best and only way you know how.
And that will inevitably look different for each member of the The Tribe after the loss of a special needs child.
It’s a part to special needs parenting that isn’t always openly discussed, but that always exists.
While the outside world may think that our children are in a better place or even better off because they’ve been released from their conditions and afflictions – The Tribe knows otherwise.
We know the world is a darker place without them.
Through it all we will always offer endless and unconditional love, support and understanding to each other.
The loss of a child with special needs is not an event.
It is an indescribable journey of survival.
Have you had to leave a venue early due to lack of suitable changing facilities?