It’s taken me 11 days to come full circle and be capable of putting my thoughts into words, in hindsight it’s best that I wasn’t able to form sentences on paper in the moment as usual because emotions tend to get the best of me and I come across as either a raging angry psychopath or a blubbering therapy seeking mess. So here is my therapy, putting the words and feelings onto paper that I could never say out loud all of the doubts, the aching and pain, all of the incredible endless joy, every moment I want to remember and even the ones in between that I don’t like to say out loud, all of it.
You see 11 days ago on September 9 my son turned 14. For those of you who don’t know me, my family or our story this seems like a usual event, a so what occasion that should’ve passed with cake, possibly some video games and whatever it is typical 14 year olds do for their birthday. Here’s the BUT though… It wasn’t that way at all especially inside my Momma head and inside the walls of my Momma heart. So I invite you for a few minutes or however long it takes you to read in these words to step inside my head, to read the ups and downs that plague my sleep patterns and churn worry in my gut. Here is a few moments of what hours of thinking in the middle of the night produced.
You see Shane was diagnosed with autism when he was almost 3, my husband remembers the day exactly and probably the precise words the Dr. said. It wasn’t a monumental moment for me. I know with those words our lives were not to be as planned, I knew that Shane was different but I also knew he wasn’t less and that I would give my 110% for the rest of his life so that he could be all that God intended. Fast forward though 11 years of therapies, doctors, a bonus epilepsy diagnosis with a few big seizures along the way, a battle for the history books with a few teachers and even schools, years of sleepless nights, sickness and immunity problems at every turn, Dr. visits, and life as we know it. Here we are and those are the technicalities of it all, but always only half of this story.
For every year that passes I wonder how much longer I will do the things a 14 year old mother doesn’t typically do, how long will we have to bathe our son? Will he ever learn to independently brush his teeth or put his clothes on correctly? In one breathe my heart shatters into a million tiny pieces and in the next as my lungs fill his smile lights a room. His sense of humor and joy come unmatched, and so the ups and downs of our days flooded my mind in triple time the night before his birthday I lay awake still at 3am pushing the swing back and forth in my mind… up, down, back, and forth. For every crack there is a glue that holds me together and the list goes on.
He clings to me with terror in his eyes when there is a loud noise or someone in a restaurant has a birthday, but he tells me I’m beautiful even when I’m a legit hot mess.
He still has accidents and needs us to help him in the bathroom something the parent of a 14 year old never intends on doing, but he giggles uncontrollably when the dogs get a bath or the cat sneezes.
He weighs less than his 11 year old sister and gets sick very easily, but never complains ever.
He would walk away with a stranger and has no sense of danger whatsoever, but he remembers names of people and pets forever with only 1 meeting.
He will wander away into the neighborhood or anywhere if we aren’t alert and watching every single minute, but he loves church and Jesus so purely that he will stand when no one else is, sing his own words and not even look to see if anyone cares.
He doesn’t yet write even his name or care to try, but he cares so deeply for his sister that he can’t stand when she’s away even for the night.
He is so scared of things like rubber gloves, needles, the unknown and things he isn’t familiar with he will scratch and pinch us trying to escape or get away, but he will sit patiently for hours with us at sporting events without one single complaint.
He has to be helped with nearly everything, told to eat and put to bed each day, but his prayers are worth more than gold and his hugs are priceless.
He doesn’t have a single genuine friend, has never been invited to a sleepover or a birthday party, but he loves the movie theater and plays and can memorize lines and music quicker than anyone I know.
He throws a fit when he has to go to school, when he can’t have his iPad when he wants it, has to get dressed or do the things he doesn’t prefer, but he has never called another person a name and doesn’t know what judgment is.
He freaks out when the end of the train comes, his favorite songs end, when a cartoon is over or when we have to leave somewhere he loves, but he loves our pets beyond measure and still misses the ones that have gone to heaven.
He gets nauseous on airplanes and obsesses over so many things, but he loves to travel and experience new places.
He doesn’t like to have conversations with kids of his own age aside from his sister, but never gives a thought to what others think of him.
This list could go on forever but now you have an idea of what keeps me awake at night. So where is my focus, because if you’ve ever read anything I’ve written you know that my life is about perspective. I could so easily focus on the things before the BUT. I could fall into depression knowing that it is quite possible we will care for Shane for our entire lives or I could see and focus on the other side of the coin. The side where we know he is a gift from God. The side where I pull up my big girl, momma pants and get it done. Day after day, struggle after struggle I choose to focus on what’s after the BUT. I focus on a heart so pure he can’t stand to hear someone say the word stupid, I focus on a boy that doesn’t realize how far behind he is because he’s busy loving us and enjoying the sunshine. I focus on a boy who is genuine and will someday become the man God intends him to be.
So on that 14 birthday we did celebrate with cake, chocolate to be exact. BUT Shane didn’t eat any because for the first time in his 14 years he was excited to open gifts, and that friends is progress. In my mamma heart it is the glue that holds it all together, tiny steps forward and razor like focus on where we’re going not where we’ve been because I am capable of doing the things I never intended on doing. I’m capable of wiping that butt forever if that’s what I need to do as long as I focus on what’s after the BUT. We opened presents with excitement, joy, got overwhelmed when the candles were lit. We went to Home Depot to look at and open and close the washing machines, because we know they spin and how they work and we don’t care who stares at us when we spend 30 minutes just looking at them. We got overwhelmed when we brought home balloons with the cake and had to put them all in sisters bedroom so we didn’t worry that they would pop. We went to get smoothies because they are Shane’s favorite, we went for sushi because it was his day. We hung the swing we bought him that he still won’t swing on and we played with his new bowling set. As we tucked our 14 year old in that night after brushing and flossing his teeth, washing his face and helping him dress for bed, my heart was full. Not like a typical mom of a 14 year old teenager but in the way God intended because this is our journey and clearly it is not meant to be the same as any one else’s.
Am I broken? Yes, Absolutely. Who isn’t? But, I’m also glued together with smiles and moments of joy and know that I am more beautiful with thousands of cracks than without. If it weren’t for the moments that break me, that shatter my soul, bring me to my knees, awake at night with worry I wouldn’t be as strong and as resilient as I am. I am thankful for the joy and mostly for Jesus because I am fully aware that without his grace and forgiveness Id need a strait jacket. I know that 15 is coming, quicker than I’d like. It will bring high school and so many things that will
come before the BUT, some I don’t even dare let cross my mind yet. I can only rely on my faith and the fact that we will continue on, not just until 15 but for the next forever as long as we are allowed.
–Until Next time Aspen