Until All the Pieces Fit

Holy moly. Another year has come and gone.

While I long to make goals for myself as a person, you know, fitness goals, financial goals, faith based goals, etc, all I can seem to focus on, as usual, is autism.

How far my sweet son has come in the past year. But what can’t put my mind at ease is how far we still have to go.

Sometimes after a really great day, Jackson’s smiles, high fives and quirks seem to bring so much joy to so many people, and my heart is filled with so much gratitude and hope.

Then, in that very same day, his world can be turned upside down and even those we’re closest to can see the overwhelm and confusion that autism drowns him with.

It’s exhausting trying to explain the behaviors. The why’s. The antecedents. The crazy, yet insanely simple causes for those meltdowns.

The holidays, the breaks in routine, the simple, unexpected errands and visits from family and friends can bring him joy on one occasion and turn his world upside down the next.

I can typically predict how to help him through these circumstances, but sometimes he has such a long stretch of reacting “normally” to the unexpected, that I let my guard down. And that, my friends, is when his autism seems to rear it’s ugly head the most.

The second I think we can lead our lives like a “normal” family. Like I don’t need to prepare him days ahead for a simple family gathering. Thinking he’ll be able to tolerate a room full of gifts at Christmas time and ecstatic, energetic cousins and the world will fall into place around him and all will beautifully go as we’d dreamed. It doesn’t. Usually. Most of the time. Really never if I want to be honest with myself.

I’ve let go of my original dream. You know. The one you first have when your child gets diagnosed.

The dream where you will fight with every fiber of your being to “rid” your sweet child of this diagnosis. To beat autism. To be the one in a million who has that child who eventually no longer meets the criteria for the diagnosis because you are those rock star parents who do every single thing possible to beat autism.

I’ve finally come to terms several months back that that is no longer a realistic goal for our little family.

Most nights I wake unable to sleep and immediately grab my phone searching for the next answer to our most current autism struggle.

When most moms are scouring Facebook or Pinterest, I’m researching support groups, therapies, or the latest autism research. Always looking for how I can be a better autism mom the next day.

I remember researching developmental milestones when Jackson was a baby. I’m a pediatric nurse and also have a degree in child and family development. I have all those milestones engraved in my brain, but those milestones don’t match up with my child.

Yet I indulged in all of it, the best I knew how, never to have thought my education and experience with children had not come close to preparing me for what was next for us.

Now our goal is achieving quality of life within this new, amazing, and extraordinary community I’d never imagined I’d be part of. But it is more than okay with me. I guess. Sometimes. Not really. Finally. I think it just depends on the day.

But I am finally coming to terms with the amazingly beautiful child my son is. Though some days I’m still really angry about all of it.

But I’m proud, too. I’m proud of the person Jackson is BECAUSE of autism. And I’m proud of who he has helped myself and his father become. People we could have never been without autism. I’m proud of the person Jackson is, not the child I dreamed he would be.

In reality, he’s so much more than I ever could have asked God for in a child.

He’s my greatest teacher. He’s the person I look to each day to find joy. And hope. Inspiration. Relentlessness.

He’s the purest example of kindness and he loves bigger than anyone I know. He cares and feels more deeply than I will ever be able to comprehend.

His commitment and passion to those he cares for shows how overwhelmingly faithful his heart is. He overcomes adversity daily and fights through challenges that I sometimes think are too great for his sweet soul to handle.

His darkest days eventually lead us to light. A light I couldn’t see at first and wasn’t strong enough to accept.

I can now grasp the lessons of the darkest days, for I’ve seen the light that eventually comes.

If I’m patient enough, the hostility of those days always makes sense, eventually. God is working through him and through us. The beauty that’s come through the burden. The hope that we’re able to shine on those that feel the overwhelm of the newness of the diagnosis. And the loneliness of it. None of that wisdom could be achieved without anguish.

So, I don’t feel bad for sulking in the beginning.

I forgive myself for the days I’m weak. For the tears I still cry on hard days and for the anger I sometimes have for the despair I watch Jackson feel. But I relish in the hope that no true beauty and achievement could enlighten us without the struggle.

Nobody promised us life would be easy and we definitely can’t count on it being perfect, but we can always trust that it will be worth it.

So, as I’m still not strong enough to fully embrace the magnitude of the diagnosis, the what if’s and the depths of the unknowns that his future holds, I guess my key word for 2019 continues to be “hope”.

Ye,t I think if Jackson were able to communicate his desires to me, it would be his wish to maintain “perseverance”.

His struggles become more obvious as he’s now a six year old kindergartener who’s capable of understanding how different he is from his peers. He consistently tells me after meltdowns, then heartfelt apologies, how he’s “a different kid”.

I’ve asked him many times where he’s heard that, and he always tells me, “I just am, Mommy. I’m a different kid.” And that’s the best way he can explain his struggles to me.

I guess I want him to explain to me that he heard it on the playground or from a good friend. Anywhere, I guess, except from his own heart.

I guess because I’m not ready to open that can of worms in trying to explain to my amazing child exactly why he’s different and exactly what it is that makes him so exceptional. And what makes the simplest of things so hard for him that come so naturally to his peers.

So, I suppose this will be the year I pray for the strength to explain it all to him in the most perfect way. In a way that will allow us to move forward and conquer our fears together. In a way that will help him empower his strengths and not cause him to focus on his difference.

I pray in 2019 that every autism parent allows enough grace in your journey to appreciate the beauty of what makes these babies so amazing.

May we hold tight to our faith, whatever it may be, and find the joy that comes tenfold each day.

I pray we have the patience to handle the imperfection of our children’s seasons and the boldness to demonstrate the importance of advocacy…until all the pieces fit. 

Written by, Lynn Reasons

Lynn is married to her best friend and greatest teammate as they raise their sweet five year old, Jackson, with high functioning autism. Lynn loves her new role as a school nurse and now three years in to their autism journey, is passionate about helping guide newly diagnosed families through the beginning of theirs.

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