I had a piece planned out I wanted to write about services provided (or not provided) by the County, but a different piece was planned for me.
This past week, the Angelman community lost two angels. I can't find the words to convey to all of you what this does to a parent. I know we can all imagine what hell these angel families are enduring as we all grieve with them, but when you are raising a child with the syndrome the pain is that much fresher.
One angel was in his 20s and passed from a cancer that was found too late and another was under 10 and passed in his sleep from what is believed to be seizures that had a life of their own. While AS itself is not a fatal diagnosis, the repercussions of the symptoms can be lethal. By the grace of God, we are not dealing with seizures yet although that status could change at any point and while it is possible we never will, statistically the odds are against us. The cancer diagnosis coming too late is the second time this year we lost an angel, quickly, to a secondary diagnosis that the lack of communication and "typical" symptom presentation make a very real reality.
I try and take peace in the fact that angels that pass are not suffering, that they are home where they can walk and talk and play and sing, without seizures, without bodies that just won't cooperate. It doesn't ever ease the pain in my own heart having to face a reality no parent wants to face. This early end of life is possible for everyone, but we walk this life with the cards stacked against us.
This is why I spread the word, why I tell others about my son and his diagnosis, why I won't ever go quietly away. Not until this syndrome can be treated. Not until the research we so desperately need funded happens, not until I can hear my sweet boy's voice create real words, voice his likes and dislikes, his needs and wants. I *want* this child to drive me crazy with endless discussions about topics important to children. We take so very much in this life for granted as we travel through each day. We rarely stop and think about these situations until we are smacked in the face with them.
Please pray for our angels and the families of the angels who have earned their Heavenly wings this week. Please spread the word, share Will's story and his beautiful face. Fundraise, advocate, ask questions. I want Angelman Syndrome to be something that almost everyone knows when they hear it.
Fly free sweet boys, free of the restraints your human bodies placed on you. While we never felt your hugs or heard your sweet giggles, we are all part of a bigger family, brought together by something we never wanted but we will all fight to diminish. To your families, your loss is something I can't even begin to imagine. You are in my thoughts, prayers and heart. I know firsthand the reality behind the smiles. I live it every day, I walk with you and I am here to hold you up if you need it. God speed.
We go through life so often
Not stopping to enjoy the day,
And we take each one for granted
As we travel on our way.
We never stop to measure
Anything we just might miss,
But if the wind should blow by softly
You'll feel an angel's kiss.
A kiss that is sent from Heaven
A kiss from up above,
A kiss that is very special
From someone that you love.
For in your pain and sorrow
An angel's kiss will help you through,
This kiss is very private
For it is meant for only you.
So when your hearts are heavy
And filled with tears and pain,
And no one can console you
Remember once again.....
About the ones you grieve for
Because you sadly miss
And the gentle breeze you took for granted
Was just......... "an angel's kiss."