As the executive Director of Jonah & The Whale Foundation, I would like to share with you, Jonah, for whom the foundation is named. He was one of the greatest human beings that I ever been blessed to know in my life. For someone who faced insurmountable physical and mental challenges, he knew and understood so much. Jonah loved with everything he had to give and he loved to be loved.
As his mother, I felt so much agony watching and feeling his pain throughout the three years of his life. My spirit ached as I watched him struggle time and time again to survive and rise above his suffering-his bravery throughout was astounding to me. I know the frustration of knowing your child better than anyone, knowing what is normal for them and what is not, what they should look like or not, and what every whimper every cry meant and yet being so unheard!
Jonah was Ignored to Death! He died at the hands of doctors who decided that because Jonah would never be the child that they wanted him to be--the child that made them look like heroes, that his life somehow was not worth saving or investing in. I know, first hand the frustration of trying to convey your child’s needs to ears that don’t seem to listen-until it’s too late! Jonah died of Advanced Dilated Cardiomyopathy and Congestive Heart Failure that was not detected until six days before his death. Ironically, when Jonah was born his heart was the only thing that was healthy.
I will never understand how a child born with a healthy heart and connected to a heart monitor and oxygen monitor his entire life could die from Heart Disease? I have questions that I will never get answers to and that hurts.
The inspiration for the Foundation came from that frustration. There were too many cooks in the kitchen and yet no one had a recipe! In other words, a lot of doctors knew something about Jonah but no one doctor knew a lot about Jonah. Because of this he fell through the medical cracks and it cost him his life. I learned so much from being a parent of a disabled and chronically ill child and I learned so much from the struggles of other parents of disabled and chronically ill children that I wanted to use my teaching ability to help others learn how to encourage and enable parents to better organize and better locate the appropriate information for doctor appointments, ER visits, and IEP meetings.
What is your story?
3 comments:
I was just playing around on youtube, and I came across the video posted about your son, Jonah. I was very touched by your story, and the foundation that you have created in his memory. Words can not explain what you must have and still go through everyday, but you are giving back to others and doing the work of God. Keep on this path, and thank you..
As with the other person who commented, i found your clip on YouTube and followed it here. The clip was beautiful and though hard to see the last few photos they were beautiful - he would be proud of the arrangements. As a mum of a 2 yr old boy and a 3 yr old girl i struggle when i see these clips - always cry. I dont understand why a young child/baby ever has to suffer and im sorry you had to suffer so terribly by the medical profession. What i have learnt from viewing clips and reading stories on these tragedy's is to follow my instincts when my kids are involved. If i dont think well enough to leave hospital then refuse to go, fight the whole way - never take what is said without a fight. Im very sorry you had to lost your sweet wee man, he seemed so happy in the early pictures and such a joy to have. You must feel honored to be a part of his short life . Keep up the great work with this site, you have done your son proud as im sure you are of him.
I don't know how you feel, but i get the failure of the medical community. We have had to fight for everything for our medically mysterious fragile son. We have a some what diagnosis because of the research we have done. I'd love to hear more of the knowledge you've gained...in guidance of my quest for our future. Thank you for sharing your story. I cried through most of the video. So touching!
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