Chasing "Fine"

Dear Addie,

Something they don’t tell parents when they start this journey is just how many times they will feel positive they're doing this all wrong. I’ll admit I was somewhat naïve in the beginning. I saw all the reports, the word “severe” written clear as day. The vast array of delays, but somehow thought “Sure we’ll just need some extra therapy and then everything was going to be just fine.”

Fine. Everything was going to be fine. What did that even mean - fine?! There are about a thousand different therapies & diets to try, doctors to visit, and a mountain of opinions to hear, but not one single individual with autism is the same so it’s a wicked game of floundering through trial & error straight out of the gates. So when do we get to “everything being fine”?

Life keeps pressing forward and we discover that highs and lows can be thrown at us within the same hour and no matter how hard we try, we might never be as prepared as we need to be for anything. We can get close, but we are just always going to be surprised for better or worse, and dare I say most recently for the better baby girl! You’re really making some great strides these days and we have surely celebrated them all. I’m confident that the "living in the moment" mantra was truly created for this journey Addie.

First words, sipping from a cup, eating with a fork - these were all seriously like parade worthy moments for us with you! Something we might have just jotted down in a baby book and seemingly glossed over with your brother and sister. Not that those moments weren’t special with Clara or Gabe but somehow your moments felt truly glorious for all the hard work and time they took and oddly in the back of my head yet moved us another step closer to that old friend of mine - fine.

The reality is that living in the moment is almost perfect, and in a predictably unpredictable journey, you’re pretty much forced into it for lack of a better term! But while we celebrate the smallest of accomplishments with extraordinary joy, it doesn’t relieve the uncertainty of your future that can still wake my mama heart from sleep in the middle of the night. That, well that’s heavy.

There’s a heaviness here. Living in the moment doesn’t mean we don’t carry a lot of weight. The weight is our fear, challenges, and worry that often sits with me in the quiet of the night when the structure and routine of our day have gone to bed. Sometimes I feel like I could add “world-class weight lifter” to my resume. I mean what does it say about me that Dateline or some other murder mystery soothes me to sleep better than the silence, and the wandering thoughts about the future which leaves me anxious and wide awake? Riddle me that.

Life is funny the way it works though. When we were in your earlier years of diagnosis like the 3 -6 age range these thoughts just weren’t there. Our biggest worries were navigating kindergarten or 1st grade. Now somehow at almost 10, I feel like a scholar of all things Addie, but yet still searching, maybe even more desperately now, for our “fine” because yes at 10 I feel like we are knocking on adulthood's door for you.

Addie, I've lived enough life now to say, most often, there are no concrete answers to some of our deepest worries. Life is pretty grey actually, but I think I can speak for most special needs families when I say we live on a little thing called hope. And sometimes the hope you’re looking for is just as easy as opening a door.

This brings me to our past weekend.

A few years ago I left a rather frantic and dare I say desperate message on what has become our beloved Camp Bluebird’s voicemail. I didn’t have any structure that you seemed to be craving lined up for the summer and we were just weeks away from needing it. Now I know this might come as a shocker but autism camp is kind of slim pickins at least around here. The stars somehow aligned and 3 years later I'm happy to report we are still going strong there and you seem to truly enjoy your independent time away when summer camp rolls around.

The thing I didn't realize when I opened that door all those years ago was that hope was waiting just on the other side in a passionate vision for this little camp. It was as if I had found a map to something better than that "fine" that I had been chasing. An idea that “severe” didn't mean you couldn't live a dignified and meaningful life. You to could have work opportunities and live your independence away from mom and dad just like your brother and sister will eventually do, but all with the supports you needed if necessary. An idea that you were going to be so much more and deserved so much more than just fine.

Some might call it wishful thinking to put so much faith in a vision, but this weekend we opened that same door that helped us in our time of need for the last time because Camp Bluebird was officially being moved over to a new farm property. A property that you may call home one day.

I watched your big sister and brother who happily volunteered their weekend gather up toys, take apart play yards, and vacuum up a lot of rice. Ah yes, rice. The greatest sensory fun that ever existed. It was that or this place was running a part-time Chinese restaurant and I was completely unaware?! But all joking aside, watching your siblings helping out with something that benefits you in such a special way - heartwarming might be an understatement. It's truly a feeling of love that could make my heart burst with pride and joy. One Team, One Dream live and in action.

Addie, You will open many doors in your lifetime, the flip side is you will also close them, but remember just because a door closes doesn’t mean it’s all over - not even close! It just means something better awaits you.