The Beacon (Part 2)

Dear Addie,

Now where was I? Oh yes, we had just left the doctor’s office with a piece of paper that he gave us. On the piece of paper was the name of another professional that he said would be a “beacon” for us if there was any way to get in to see her, which was going to be quite a trick since she was no longer seeing patients.

So, as we walked to the car I had a massive swirl of emotions – on one hand, I felt excitement that there was a glimmer of hope that there was someone who our current “quarterback” felt could help guide us, and yet on the other, I felt guarded against that hope because there was so much risk that we wouldn’t ever get to meet her, and even if we did, would she really be able to provide us with any new guidance?

We sat in the car. Choking back tears I called daddy to tell him how it all went.

*** Side note: if you haven’t figured it out yet I’m emotional, I cry a lot, especially when it involves my children, I'm tired and frustrated.

Ok, back to the call.

I was excited to tell dad that the doctor had a new recommendation of someone we should try and see – a “beacon” as she was described. But getting to see this person was going to be no easy task, as she wasn’t seeing patients anymore, and as one of the world’s leading researchers in the area of Autism and Developmental Delays, she is nearly impossible to get an appointment even if she was.

As I was rehashing the story to dad, hearing my own words, I began to get more and more discouraged, and by the end I was crying (again… my goodness momma – get it together!). I didn’t even say her name. I just said it’s not even worth getting our hopes up, because it’s not like we’ll ever get to see her anyway.

Here’s the truth baby girl, you were struggling. Struggling with just being. You were becoming more and more isolated, and having to constantly decompress in your room. We could hear your swing bounce from wall to wall for hours as you tried to ground and comfort yourself. You were struggling at school, acting out like we’ve never seen before. Throwing tantrums (and chairs!), and just really anxious and upset wherever we went.

Why couldn’t I make this better? I wasn’t looking for a magic “fix” (you’re not broken, I didn’t need to fix you), but I just desperately wanted guidance on how to help ease your struggles, help you swim to the surface for some air.

So while I sat broken, and telling daddy how I was feeling, he was in a faraway place having a very different kind of day than we were…

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Hi Ad -

Its dad – you know the guy who makes elephant sounds on command, and chases you around the house playing Frankenstein and tickling you? Yep, that guy.

I know the past several months (years really) have been really tough, and that in your bubble, your mind is working overtime to figure out how to exist in this place that you don’t quite get.

I know it’s tough not to be able to tell us what you want or think, I know you are sad and anxious and frustrated not to feel comfortable in your own skin, and especially the sadness you feel after you lose your shit “shoot” and then feel remorse afterwards. I can’t imagine how it feels to be you, and I am so proud of you for trying to figure it out.

As mom has been telling you in her letters, the past few months have been especially tough, and now that you are a big 8 year old kid, everything seems to be tougher and more intense. So the day that you and mom were at the doctors, I know it was a real disheartening message to hear that there may be an expert who could help guide us in a new direction, only to get discouraged about actually ever getting to meet her.

Well, the story takes a very different twist.

Because it so happened that that very day that you and mom were here in NC at the doctors, I was in New York meeting with some very special people. Let me explain…

You see my love, daddy gets to do something very special for his job. He gets to work for an incredible organization that is full of amazing people who are working hard every day to find cures for blindness. There are thousands of people going blind and we are working super hard to help them. The man who started my organization, who has gone blind himself, also helped support the start of another very special organization called… Autism Speaks. True story.

This special man has been very kind to our family, and knowing our story invited me to a meeting with some of the world’s experts in New York, on the same day that you and mom were at the doctor’s.

So while mom was telling me on the phone how defeated she was feeling, I was biting my tongue with excitement that I had news to share… one of the people I had met with in New York knew a world class expert that happened to be really close to us in North Carolina. “She is just amazing” they said, “She would be such a guide for you – a beacon!” (Ok, truth be told they didn’t use the word beacon, but I am taking creative liberty…). The only problem (you guessed it) is that she wasn’t seeing patients anymore, but they were going to see if she would meet us as a favor.

“Her name is…”

As I told the great news to mom, I wasn’t sure what happened. Did the call drop? There was no response. “Honey? Are you still there?”

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I could hardly speak. Did that really just happen? Dad just said the name I had written on the piece of paper. What just seconds before felt so impossible, was now undoubtedly going to happen. God works in mysterious ways my dear. Really and truly.

The stars aligning, a God wink, unbelievable coincidence, fate? Whatever it was, we were so ready to happily accept this gift of light! I would fall apart a hundred times over for a moment like this. It was as if we had won our own personal lottery.

We were going to meet the beacon…

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I love you.

Mom

“Even a glow stick has to break before it can shine.”