Snow Day

It snowed.
It's freezing
School was canceled
Aidan wants to go into the hot tub
What's wrong with this picture?

Actually, nothing.
Moments before shooting this video, my daughter and I talked about how a year ago, one of us would have had to go in with him to hold him in case of a seizure. Today, we stood on the sidelines complaining about the weather like all envious Virginians who are not in Florida golfing.

  Aidan is the big fish in his little pond fending for himself.

Aidan is 12 now. He has had what I call "Hands-On" years and Hands-off" years, depending on his seizure activity.

These pictures are examples of hands-on years. (and if not "hands" then equipment such as a walker which we call Green Car or a wheelchair.)

I felt compelled to write about Aidan today because of two memories that came up on FB.

Both posted on this day, 9 years ago.

The first post in the morning read:

Aidan has an appointment with a speech pathologist today to find out why he his language has not developed. It's very frustrating for him, and sad for us. I do not want to hear bad news today, but we need to know how we can help him-whatever the situation is-I would really appreciate your prayers.

The post later that night read: 

It was a good first meeting with two Speech Pathologists. We learned that there is something wrong with the muscle tone and structure of his mouth. Maybe another issue that is more serious but I am hoping they rule that out. We hear back soon. But, we have help and a plan! He is sweet, intelligent and I believe he will soon speak. I can't wait to hear his voice and his first word! Thank you for your loving support. 

Oh, if only it were just week muscle tone and the structure of his mouth. This was all before his first seizure. We had a lot ahead of us...

After the diagnosis of Polymicrogyria and the reality sunk in and the acceptance came, I wrote this poem about Aidan while he lay asleep next to me: 

No words
Slow starts
Big smile
Melts hearts
Little words from little hands
A slight divergence from well-laid plans
Not always sure how to finish this race
God steps in
Amazing grace
No words
Slow starts
Big smile
Melts hearts

 There is a voice
that doesn't use words.
Listen
~Rumi

We have learned that love has many languages.

Sometimes the caregiving has been exhausting.

Loving and knowing a child with special needs expands your ability to feel compassion for the people in the world who are different and may not be readily accepted. 

In the early days, I clung to a few comforting scriptures including Psalms:34

Is anyone crying for help? God is listening, ready to rescue you. If your heart is broken, you'll find God right there: if you're kicked in the gut, he'll help you catch your breath. 

It's been a day of reflecting receiving Aidan's diagnosis nine years ago and all the ups and downs. 

I will count this day a good one. 

The next is a mystery.

I haven't heard his voice yet, but I've seen his heart

And I do know this: 

"There is a joy that is coming....