Have you ever taken a step back to just think about where it all started? Have you ever just wanted to sit down and write your story? I have pondered writing my story for so long and I suppose that one day I will but there is a certain fear in it. There is a certain distance in the words from the actual story. Is there really an adequate way to describe how I became the self that I am at this moment?
Ten years ago, this day he was placed in my arms and I had no clue where this child was going to take me. On this day ten years ago there was no autism and he was being taken away from me to go get an ultrasound of his abdomen because of the cysts in his left kidney. We were terrified thinking that he might only have one kidney despite the doctors words that, “so many people are walking around with one kidney and don’t even know it”. Little did we know that this would be the least of our worries.
It took me over a half hour to dress him. I thought that I would break him somehow as this is the first baby I had ever even diapered. I took such care and thought that he was the most beautiful baby in the world. As we strapped his tiny body into the baby carrier and left the hospital the world seemed so different. Everything seemed so fresh, so new. The next few weeks that followed involved a lot of recovery time from the C-section and exhaustion that follows having a new baby. Then two weeks after his birth my husband called saying, “don’t freak out, we are going to be okay. are you sitting down”. “yes” i said fearfully. “I just got laid off” he said.(it was the fall of the economy in 2008) I sat there holding this new baby in my arms, still unable to walk straight from the c section incision, exhausted, boobs still hurting knowing my recovery time would be cut short. Just three weeks later I walked into work on the psychiatric unit working full time while my husband stayed home with the baby fervently looking for a new job.
As I walked the hallway doing fifteen minute rounds and helping patients with their daily living actives like dressing themselves or showering i was still sore. I was still in pain and my emotions were everywhere It was the hardest three months of my life. But I survived it. I missed my baby.
After all the ct scans with contrast, ultrasounds and multiple trips to the Urologist out at children’s hospital in Detroit it was deemed that his cystic kidney was in fact alright and had died off. It would eventually be reabsorbed into the body and the other kidney had increased slightly in size as it picked up some of the function of the lost kidney therefore this was no longer anything that needed to me monitored.
Still a newborn i told my mom, “I don’t know when he is hungry he never cries”. so one day, i waited him out. One hour… two hours… three hours… four hours… still no crying… five hours… six hours… then seven… then finally as i stood there looking at him in his swing i knew something was up. I grabbed the breast milk from the freezer and fed him and he ate an entire bottle. That’s when I began to suspect that something was different.
Despite this I watched him grow and change and evolve. he would coo, smile and cuddle. Even to the point of calling things by name. he would say mommy, daddy, “ight”(for light). but still there were things. Like he would watch Nemo on repeat for hours transfixed on the colors. he only liked toys that had buttons and eventually, his words fell silent.
I was seven months pregnant for baby number two when I would get a name for it. He wouldn’t point at things and when I pointed at an object for him to look at he wouldn’t look. He seamed deaf when I would call his name. I walked out of that office with a diagnosis of Autism in my hand and the words even left MY lips. The ride home was silent as i would look in the rear view mirror at this perfect boy.
A week after his diagnosis Caleb was born a month early which meant a nicu stay and another C section recovery in the midst of the news. the next 6 years to follow would be the hardest years of my life. It was a colickey newborn that cried incessantly, insurance battles, phone calls, less than adequate therapies coupled with the basic uncertainties of parenthood, work, anger, love and everything inbetween. All this, with no help. We had my mom thankfully but she was often watching Aiden while I worked and David had branched out and found a job over an hour away from our home. Despite him being an architect and me being in mental health we were living in a trailer just to make ends meet.
But you know, looking back now these were simpler times. I remember being excited every night at 630 when david would get home and we would sit down together with a bottle of wine and watch the kids play in the living room while we watched america’s got talent together. I love the nights at home. I loved the evenings where i would close my broken mini blinds that really weren’t functional at all and block out the trailer next to us and pretend there was no world out there. i once closed the blinds and joked to my mom “i like my privacy” as we both peered out the large hole where the blinds had broken off at the neighbors illuminated windows across the street and we laughed and laughed. (Those blinds remained until we moved out). Those were my happiest times. I know it sounds strange to some but We live in a house now and ya know, there are some days that i still drive past that silly little trailer and miss it. I miss the sound of the train tracks just beyond the field right past our house. I would often sit at the dining room table with a coffee as i watched the trains go by and played candy crush for hours (long before social media took over the world) as the babies would sleep. I would often stop mowing the lawn to engage in conversation with the drunk next door about landscaping and the boy he was raising who eventually would become like a son to me as i often fed him and helped him with his homework. (Frank from shameless always reminds me of him). Its funny how you miss those things. I love my house now, its great, and our neighbors are great but 1600 square feet is a lot to clean and the therapists in and out everyday don’t leave a lot of room for down time. Plus with two floors its rare to have the family together at one time. and the obsessive autistic behaviors my son displays often has him changing the channel or turning the tv off mid show leaving all of us angry and the other children frustrated at Aiden as Aiden scurrys off to isolate himself from the rest of us i am left upset and torn. In the trailer this would have never happened. There was no room for isolation. It was simpler.
I remember praying incessantly for the therapies to start and for insurance to cover all the services he needed and now that they are here and we have been up and running for three years i cant help but be thankful but also a bit overwhelmed. Now, instead of wishing for them to be here sometimes i wish for them to just go away so i can have some time with my boy. I guess that phrase, “two sides to every coin” really rings true.
Now, I have younger moms coming to me asking for advice on apps to help with writing or letters. Which is a new development with my other typical children now entering into elementary school. And i cant help but think back to the scared momma i was. Just ten years ago, I didn’t even know how to dress a baby, clean a house, do laundry or even how to be content being alone. I thought life was so hard. But now, looking back I hear those words my mom used to tell me when i tried to rush my kids getting past that toddler phase, “You’re ganna miss this” she would always say and i never believed her. But today, I’m ganna say it one more time as I’ve been saying it more and more “Momma was right.”
I guess this is just a part of my story. But its a precious one. If i were to name it as a chapter in a book i would name it “the Best of the worst time”. Because to date, those times that i thought things were so hard and all the anxiety I battled over living in a trailer and what people thought about it I kinda miss that place. Those days are over now, my alcoholic friend passed away last summer I heard and the boy I “adopted” as my own is now in high school and “too cool” to hang out with an old lady like me. I guess you could say I did a small part in raising him. We have lost tough but i think of him daily. And as I look at my Aiden and my other two babies and where i am in life i cant help but feel thankful for the last ten years. With all of its ups and downs the things i have learned and the growth i have had is invaluable. and the biggest lesson i have learned is the lesson of family. Its about setting down the work and loving the people around you. Even if you find yourself sitting in an unfolded pile of laundry. The laundry will always be there but your child won’t. one day they will be heading to a friends house everyday after school and you wont see them until bed time and you will have to beg them to stay home and hang out with their momma. There will be a day that my daughter wont miss the bus because she wont get out of the truck because she “doesn’t want to see [her] friends today [she] wants to see them tomorrow”. Cherish it even when its hard. because like Momma says, “you’re ganna miss this”.
**This Post is dedicated to the boy that ten years ago on this day made me a momma and the best version of myself I could ever be. Aiden you are my world and momma loves you forever and always. Happy birthday even if you may not know what a birthday is. Today we celebrate you.**