I can honestly say that I would not love my middle son, Wesley, more if he had a complete set of chromosomes. He would not be more my child if he did not have a diagnosis of autism. He is my joy and it is a privilege to be his mother.
Once in a while, though, my mind wanders to wonder what life would be like if he did not have multiple diagnoses. What would it be like if he did not have a different doctor appointment every few months? What if he didn’t need to go to a special school? What if he didn’t have a feeding tube? What if he could speak with words? What if he didn’t have melt downs and hurt himself? What if he was born typical?
I took this picture just before Disney Live began. I think it is a safe assumption that he was the only sixteen year old in the place screaming at the top of his lungs every time Mickey Mouse came on stage. Every. Single. Time. His joyful noise comes from the depths of his soul and it is magnificent. This photo reminds me that love is felt and not spoken. Love is shown and received in the little and sometimes silent places in daily life. Yet, it also brings my mind to a place in a parallel universe where, perhaps, special needs is not part of my family’s constitution.
He almost looks like an average teen ager in this picture. I see the slightest glimpse of how he would look if he did not have special needs. Had he been born differently, Wesley would be in tenth grade. He would have his drivers permit. He would be wrestling with math and how to talk to girls. He would roll his eyes at me and think I am very old.
I wouldn’t have to change his diaper or tube feed him. He wouldn’t need a wheelchair to be pushed long distances or to get on the school bus every morning. He would not need several medications twice a day. There would likely be no IEP or SLP, OT, and PT. He would not listen to the same Andy Grammar song over and over and over for years and years and years and no other music. Instead of Blues Clues he would be watching action movies or science fiction. He would play video games. He would hang out with his buddies. He might even play a sport or musical instrument.
But that is not where I live. From time to time my imagination visits there but it does no good to sit in that place for long. Instead, I try to make it better where I am. I refocus on the fact that he is precisely who he is supposed to be. I see all he does instead of that which he cannot do. I see abundant, unconditional love. I see God in my beautiful son.
My ability to alter my focus to not dwell upon things unchangeable began in the United States Air Force. My father joined before I was born and for much of my childhood it was all I knew. It is a challenging way to grow up. We moved every three years. Friendships were fleeting and my father was gone a lot. I was the constant “new girl.” Before I graduated high school I had been to six different schools. By military standards, however, that wasn’t so bad.
Often we would arrive at the new base a few days before our furniture. My parents would make it a game and we would pretend we were camping. With only sleeping bags and pillows we would all gather in the living room. There was no television or radio – just my parents, my brother, and me. It is one of my fondest childhood memories. It birthed in me the ability to turn an inconvenient situation in to a glorious adventure.
This notion became part of who I am. In college it hung in a frame by my door:
Growing up a Military Brat I learned respect, duty, and honor. I understood at a very young age that complete strangers are willing to leave their families and, perhaps, die to protect others. I learned it before I could even hold my own head up as my father was shipped to Vietnam and missed the first year of my life. But I also learned resiliency and efficiency. I could blend in to my new environment quickly, including adopting the local accent. Much of my survival in school was based upon that ability.
Part of that survival was also figuring out how to find and focus on all the reasons being where I ended up was actually better. Even the smallest blessings could sway my attitude toward our latest station. I can so clearly remember learning to like a new place simply because the swings were a little higher than the last base. I couldn’t change the place in which I found myself but what I could change was my perception of it.
The lesson of making a place better was one I carried with me into my adulthood. It became the mantra and saved my mental well-being when I found myself in situations beyond my control. Like the child growing up on bases across the country, I have throughout my life been thrust into situations beyond my doing or control. My life has taken paths through the worlds of special needs, addiction, and suicide. Not one of those destinations had anything to do with my behavior nor were they consequences of my actions. They simply happened to me. It is a life I did not choose but, rather, was chosen for me.
As a child and even now I could spend my time wishing I was at the place I left behind but it wouldn’t change where I ended up. I would simply miss out on all the wonderful things about my new adventure.
I discovered this writing by Emily Kingsley soon after Wesley was first born. Everyone’s journey is unique but this was true to my heart.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
How many times in my life have I landed in unknown territory? How often has life taken me on a detour to a place I never imagined nor wanted to go?
I inhale. I exhale. I grieve. I cry. I mourn. I pray. I stand back up. I learn the new language. I discover who I am in the present situation. I look for whatever is lovely and noble and true even in the midst of seeming hopelessness. I seek out the positive no matter how hidden. I am relentless in my pursuit to make it better because I am there.