A Series of Emotions

So this summer was wonderfully fabulous and I kept thinking to myself...it's too good...what's going to go bad??? You know what I mean. When life is sailing by to easily. Well, of course you know Mr. Hayden started acting differently. It scared me to death. No one thought much of it but my parents until our concerns were confirmed with behaviors not normal to anyone, especially Hayden. Within a 2 week period, Hayden's body was completely rebelling against him and he had almost no control over most movements and motor skills. I was feeding him, dressing him, brushing his teeth and doing everything our most healthy and wonderful son had been doing since he was 2.
After many many tests and much more time than anyone deserves to spend in a hospital, Hayden was diagnosed with a rare brain disease called Moya Moya Disease or Syndrome. It causes the carotid arteries that send blood flow to the brain to shrivel or clamp off and eventually lead to death. Hayden had been having mini-strokes because of lack of blood flow to the vessels in his brain. This horrible disease is of course much more detailed, but as they diagnosed him, the brain surgeon decided by Hayden's angiogram that they couldn't waste any more time and Hayden needed the surgery as soon as possible.
On Sept. 8, they bypassed an artery that supplies blood flow to the scalp and sewed it to a severely affected part of the brain. Pretty straight forward. Now we wait. It will take 6 mos. to a year for the vessels to revascularize deep into the brain and make new blood-flow networks that should be there. The ones caused by Moya Moya shouldn't be there. So... we wait.
Hayden will have an angiogram next august to see what is happening in there and if he will need to have the left side of his brain operated on. ( This would be a completely different surgery, much more involved) He is doing really well. All of the horrible affects from the strokes are gone. He has a little weakness in his left side still, but we are so grateful he has more or less returned to "our" Hayden.
Now, this was just a run-down of a horrible and trying time in our lives. I would love to say I was so faithful and optimistic through it all, but I was not. It is absolutely terrifying to watch your child deteriorate before your eyes and have no idea what is happening to your baby. Even after they have found answers. These answers were not ones that we are okay with, but we are so grateful to wonderful Dr.'s, surgeon's, family and friends who have helped us walk through this fire. We are grateful to Heavenly Father for allowing us to return to "normal" and have Hayden home and seemingly healthy, but...sadly I feel I have not learned much. I am trying to be strong and brave but feel kind of crumbly inside. A little broken. I know there is a plan. I know we have been given this new spirit that will join us on earth soon, at this time, for a reason. She is supposed to be a girl and she has already blessed our family and has helped her mother the last couple of months, more than she'll ever know.
We are blessed. I am thankful. How fragile life is.

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