The Beacon (Part 1)

Dear Addie,

A couple months ago I found myself in a doctors office exhausted, frustrated and completely spent. Tears streaming down my face as I sat in front of a doctor intended for you. I think it was safe to say he didn’t see me melting down coming. We all have our moments my love.

It was a regularly scheduled appointment with a very good doctor at that we’ve been seeing for almost 3 years. Our “quarterback” in our journey if you will. A doctor who has seen your ups and downs, and on this day you just happen to be in a manageable mood; accepting of your surroundings and giving minimal push back. A good day in our books.

We were led back into a room, not like a typical doctor’s stark white sterile fluorescent lite setting - no, it was a carpeted, dim small room with toys and a coloring table to help ease your anxieties.

You sat sorting crayons by color, scribbling each one on a piece of paper before it was strategically placed in a row next to the others before it. I sat with the doctor discussing the concerns I had, as my emotions slowly rose to the surface. Next thing you know, I was a full blown water feature. Seemingly unaware of my meltdown, you continued to sort your crayons.

I felt lost.

We had done anything and everything possible in terms of care and treatment, but we were still in complete disarray. Growth spurt? Hormones? Change in schedule from the holidays? Your fight or flight mode was heightened these days, potty training was in complete regression and the screaming was worse than ever. I had no idea what was going on, and quite frankly we needed someone to throw us a lifeline at this point.

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I’m pretty sure this was the point when he looked at me like I was having a nervous breakdown - and I probably was, or at least riding the edge of one. Then he said in the calmest most sincere manner, if we could get into see this one person, she may be our beacon that we so desperately needed. A person he tremendously respected professionally. A set of fresh eyes to our journey.

Only catch (of course there was a catch right?) was that this so called “beacon” was no longer seeing patients. Ah, that almost felt like something there, but then very quickly felt like nothing.

But how did we get to this point?

Addie, this journey no doubt has brought some of the most joyous moments I’ve ever felt. Blessings run wild, but they come with another side that not many talk about.

It’s really, really hard, and there’s no such thing as a rest day. Every single day is a full plate of education for us, learning something drastically different than the day before.

Your struggles are 100% real.

The outward distress of you tensing up, screaming, crying, hitting over a sensory assault of some sort - I can’t even begin to fathom the pain that causes you internally. As a parent it’s heart wrenching and very stressful.

I cry. A lot. Now I’m not a sobbing mess everywhere I go (I can pull myself together), but alone in our home I cry.

I cry because there are so many times when this mama, who like most, would claim they have a PhD in their child knowing any and everything about them, and yet I have exhausted my ideas on how to give you the help you so desperately need. Clearly I’m still working on my post doctorate now.

We’re armed with an extraordinary amount of knowledge (it comes with the territory), but with a spectrum disorder it’s a giant hybrid game of life and chance.

Honestly one of the toughest things we’ve experienced is when doctors say “she’s a complicated case.” This phrase has been uttered by numerous doctors and therapist on a number of occasions over the years. Those we look to for the most guidance. (Side note: this is not an anti-doctor or medical field statement. Even holistic approaches had opposite effects than we expected for you). Now kudos to you for being unique baby girl, but those are probably the last words anyone looking for guidance is hoping to hear.

So there we were leaving the doctors office still “a complicated case” only now with a long shot of our potential beacon seeing us.

Feeling defeated I called daddy, emotional and sobbing. You see that particular day daddy was out of town at a very special meeting that could fit a few important pieces of our puzzle together.

In a million years you would never believe what happened next...

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To be continued.

Love,

Mom