As most of you know, I follow thousands of children on Facebook who have very different diseases/diagnoses. I follow some with various forms of Congenital Heart Defects/Diseases (CHD’s) such as Hypoplastic Left Heart Syndrome (HLHS) and Hypoplastic Right Heart Syndrome (HRHS) to Tetralogy of Fallot and Ventricular Septal Defect (VSD) to a ton of others. I also follow a lot of children with various forms of childhood cancer from Ewing Sarcoma, Neuroblastoma, Diffuse Pontine Glioma (DIPG), Leukemia, and a lot of others. I follow some who have undiagnosed conditions and some who have rare genetic neurological conditions such as Krabbe Disease and Batten Disease. Some have muscular diseases such as Muscular Dystrophy.
One thing that I find that is the same with every single one of these parents is their love. Yes, their deep love for their child.
The smile on their face says it all. And even when they cry, I can see the deep hurt they feel. I see their child looking up at them with deep love.
Most of these parents aren’t looking for: “Thank you”, but I want them to know you are appreciated too.
“Thank you” for being a care giver every single day and rarely complaining. It’s not an easy life, but you take it on so well.
I say “parents” instead of just mom or dad as special need parents understand how much it requires a team effort.
You are amazing. You are inspirational. And you are just plain awesome.