I have said it many times before, but when Amelia was diagnosed with this horrible disease, the whole family entered a whole new world.
We met people that are so amazing and so wonderful that unfortunately those in the "normal" world will never experience these people.
It is people that also have a child with a terrible illness.
It may be one that could take the child to a special place far away at any minute.
It can also be an illness that makes them worry about that child's future.
Who is going to look after them when I am gone?
It is grown adults that choose to "work" with these kids and try to help them to communicate, move and integrate into society a little easier.
It is a shockingly low wage, but a role they seriously "glow" like a bloody angel from.
It is siblings of these children who know more than they should about life and death.
Their own worries and concerns are only exasperated by living with someone they adore and yet constantly hearing about those that have moved to the better life so much earlier than they should have.
It is a constant check on the emotional health of your special needs child and their siblings.
Amelia knows she is sick.
Amelia knows there are Ataxia Telangiectasia children dying.
She knows A-T kids die at different ages.
Her younger brother does too.
You just can't keep it from them.
We are so lucky to have found the "secret garden" that is Amelia's school.
We ALL feel welcome and loved.
Parents and staff and children smile.
Like seriously smile.
The world is different there.
Everyone appreciates every single minute of every single day.
Tom chose to spend his "curriculum day" there during the week.
On Saturday morning, we received news of one of Amelia's friends passing suddenly the night before.
It is kind of not sudden when you look at his disease, but it is sudden when you were talking and laughing with him a week earlier.
I broke the news to Amelia the only way I knew how.
I told her as gently as I could.
My very own child asked me, "Is that what is going to happen to me?".
Then I held her while she cried.
Rest In Peace Jordy.
Thank you for loving Amelia.
She adored you too.
