Tuesday, May 5, 2009


I've mentioned our great-nephew Jake a few times in the cyber pages of this site. He's a beautiful little boy who was born with Angelman Syndrome (AS) and agenesis of the corpus callosum (ACC), both extremely rare conditions.

Our niece blogs about his life on a semi-regular basis, chronicling both the good and bad. Her May 4 entry made me want to cry.
I have no doubt that miracles happen and that healing is more about a person's attitude and perspective than modern medicine, but I have come to the realization that Jake can't be fixed (his chromosome is partially missing). More importantly, I have come to accept that he is who he is because God wants him to be that way and that he was sent to me to help me help others. I am still figuring it all out and trying to find the best avenue to take. Obviously if there are new treatments and things along the way that can help Jake, I'm all for it, but I am done trying to fix/cure him. Does this make sense? I'm still figuring it all out. This is the best way for me to "rationalize" something that I thought (and sometimes still do) was completely unfair and unimaginable to me. He is my happy Sugar Man who continues to bring smiles to everyone every day. For that, I am grateful.
Jake does bring smiles to everyone everyday. Perhaps his purpose in life is to bring out the best in other people.


Anonymous said...

I like your writing. Peace.

Suzy said...

So sorry for this sweet little boy. I hope our pryers help.

Traci Skene said...

Pray that he remains healthy. It certainly is tough on the little guy when seizures or an infection land him in the emergency room.

But, to be honest, I only feel sorry for him when I use my own standards to judge his quality of life.

Jake is happy. Plus he's lucky to have been born to parents who love him dearly and give him the absolute best care.

I watch my niece and I wonder if I ever could do what she does every day. It's a staggering thing to witness.