I remember the first time I held Adam like I remember yesterday. I bet it’s like that for most, if not all, first-time mothers. Before that moment, I had vacillated on whether or not I wanted to quit my job as a marketing director with a “Big Six” public accounting firm to stay home and be “just” a mom. But 30 seconds with him and I knew. I was certain that corporate America couldn’t compete for my heart even a tiny bit with this squishy and warm, ten-pound ball of flesh who already turned his head in my direction every time I spoke. One minute old and he knew his mother. And I stayed awake that entire first night to feed him and hold him and watch to make sure he didn’t quit breathing. And the next morning I started crying. Not from sadness. The opposite actually. I sat in wonderment and joy at the reality of this new life. Surprised that there was this part of my heart that up until this moment had been closed – the mother part, apparently. I worried that one day he might get picked on at school, or have his heart broken by some sassy little brunette. I contemplated the worst – what if he was to develop a debilitating disease, or get hit by a drunk driver or heaven forbid, get abducted? My silly mind ran wild and the reality of parenting hit me like a brick in the best and worst of ways. And my heart was opened and raw. And it was amazing.
So, I quit my job and went from having plenty of money for indulgences such as vacations, pedicures, dinners out and unlimited new clothes to $25 per month for myself. But it was worth it. I remember such gratitude that Scott and I actually pulled it off. We were poor as dirt, but for us it was right. So, we honestly lived near the poverty line but were as happy as happy gets Adam’s entire first year of life.
Trips to Costco that used to take me 30 minutes turned into two-hour ordeals because Adam was such a flirty baby – always smiling and squawking at any stranger who’d give him the time of day. He was adorable with a fuzzy head of hair, huge brown eyes and the chubbiest cheeks any mom could hope for. And he knew that if he was persistent enough he could win the heart of even the most distracted and grouchy customer in the store.
He was jealous too. Whenever he saw Scott and I sneak a kiss, he revolted by wedging himself between the two of us and pushing us apart while screaming. When Scott and I were sufficiently far enough apart, he’d reach his arms up to be held and once in my arms, look at Scott with his triumphant, “I won,” expression.
He loved the dog. He loved other kids. He loved to play catch. He loved it when I sang “You Are My Sunshine.” He loved to show off and he loved praise. He really enjoyed yelling, “Boo!” to anyone that entered our home and laughed til his face turned blue when they feigned being terrified. He loved being rocked to sleep every nap and every night. I loved that too. He loved spooning and never saw a day or night in the crib his entire life. He loved riding on the back of my bike in his baby seat and running mischievously from me at the store. He loved books and Blue’s Clue’s, Elmo’s World and music. He loved going to Grandma and Grandpas and playing hide ‘n seek with them and I remember thinking to myself, “how in the world can a baby develop SO much in just one year?”
And it’s awful because just one year is all we got. It’s all we had before autism stole his smiles and restful nights’ sleep. It came like a thief and stole his desire to learn and his curiosity and motivation. It stole all of his language and all of his flirting at Costco and replaced it with unnatural sounding shrieks and crying and toe walking and hand flapping. Hide’n Seek was replaced with supposed indifference and sadness. But I’m glad I remember that first year. It’s all we had but we remember it well and I’m so grateful.
And we will never give up. We’ve recovered much of that mischievous baby that was lost. But there is mourning. Still. Last year on two separate occasions, Zac who is two years younger than Adam came home from hanging out with sets of brothers who share the same age difference. The first time he came home from hanging out he said to me, “Mom….Jacob and Derek are so close. They have each other. But I don’t have Adam. It’s not fair.” And then much to my surprise, my 12-year-old preteen crumbled in sobs. And I crumbled with him as he mourned and grieved for the loss of his brother. A brother that he would never ever know the way he wanted to. I knew how I had grieved but at that moment it was painfully apparent to me how much Zac had been grieving all of those years too. A couple of months later when he returned from hanging at Aiden and Abbott’s place, the same thing happened. He didn’t even have to say word this time. We just cried together.
I’m sorry Zac. I’m so sorry for your loss. You deserve that relationship. I feel it too – every time we’re with Uncle Tony and Aunt Sara’s family. Your cousin Garett is just one year older than Adam. He’s riding motorcycles with his friends and deer hunting with Grandpa. He plays quarterback on the varsity team and knows how to fix the truck he bought with his own money from life-guarding. He’s got goals for college and back-talks to his mom. He does all of the things a 16-year-old should be doing and although I rejoice for Garett, I grieve for Adam. I feel your pain, my sweet Zac and I’m sorry.
But there are reasons to rejoice. I’ve contemplated on several occasions if I could trade Adam’s autism in for all the lessons we’ve learned as a family from caring for him if I would do it. I never used to hesitate. My answer was always an unequivocal, “Hell Yes!” Because Adam has truly suffered – we all have. And if I could take it away for him, of course I would. Forget the life lessons and increased compassion and all that bull crap. If I was given a magic lamp, my first wish would have always been “Take me back 15 years and PLEASE take the autism away.”
Now I’m not so sure. Adam is developing at unprecedented rates. He’s become motivated and curious and for the most part, he his happy. He doesn’t appear to suffer the way he did as a younger child. He sleeps and eats well. He’s learning. He WANTS to learn. I’m homeschooling Adam without the assistance of tutors for the first time in our lives. It’s a humbling, beautiful experience every day. Really. Adam is a joy to teach. He loves me so much. Every morning I’m greeted with a smile and more days than not, he pulls me to the classroom and gets his materials out so that we can get busy. And I can honestly say that spending so much time with him has turned out to be one of the most tender, surreal and gratifying experiences of my life.
And I watch my kids. And I know they wouldn’t be the kids they are today if it weren’t for Adam and his influence on them. They protect him. The other day a kid called someone a retard on the playground. It took my daughter exactly 20 seconds to put this kid in his place. He begged her not to tell the teacher and she agreed only if he promised to never use that word again. Way to go – you feisty 8-year-old, you!
And Zac. He’s definitely become the teenager that I’ve been warned of for so many years. But he’s a friend to everyone. He could care less what you look like or what your academic and athletic skills are. He’s blind to your lisp or your developmental delays. Ethnicity and religion don’t matter to him. He stands up for the little guy and has more compassion than I had as a 20-year-old. He’s the “big brother” of the family and although his teenage personality threatens me to an early grave almost daily, he is one of the most sincere, selfless 13-year-old boys I know. And I think in large part, we can thank Adam for that.
I can’t imagine my life without all of the amazing parents I’ve met precisely because of autism. I watch you with your own children who have autism, Down’s syndrome, cerebral palsy, Rhett’s syndrome and many other disabilities. I see how you sacrifice and advocate and fight for your children. And you are an inspiration to me. I feel blessed to call you friend. And I think of all of the many tutors and therapists and other professionals who have everything in the world to do with the progress Adam continues to make. I recently learned that a honey bee creates only ¼ of one teaspoon of honey over his entire lifetime. But collectively, and working together, a hive does amazing things. Thank you all of my honey bees. You’ve all uniquely contributed to Adam’s success of today. I love you and I will always be grateful for you.
I rejoice today at the opportunity to be a mother – four times over. I am thankful for them all. Today my heart is full of gratitude for Adam. That he has unquestionable innocence and absolutely no malice. What an honor it is to be his mother. Today as we drove to El Pollo Loco (which he requested by bringing me an El Pollo Loco mailer), he tapped my arm, then touched his seatbelt and said, “I have my seatbelt on.” WHAT?!?!?! This is a miracle. Not only was it important to him that I knew he did what he was supposed to, but he articulated it to me. The small things are the HUGE things when autism is part of what you do.