Four years ago as my belly grew and my ankles swelled, my dreams and visions for our future were also growing exponentially. A lifetime of hopes and plans were forming into a tangible picture that revolved around happy healthy chatty active little boy girl twins. It was a beautiful picture and I was sure it was what my life was meant to look like. It was not an overly detailed picture but it showed a happy normal family.
When Max and Addie unexpectedly arrived nine weeks early, I had to sketch in a few additions to my picture. Same beautiful dream, I would just add in a short NICU stay off to the side. Three weeks later when we realized they were going to spend years on dialysis and require kidney transplants, it felt like my picture had been torn to shreds. I cried and grieved for my tattered picture. And then as I wrapped my head around this new obstacle, I got out some duck tape and tried to piece it back together. Okay, it was going to take time and be a little more complicated than I had thought but I clung to my wrinkled taped up diagram and it gave me the motivation to get the kids transplanted. I was determined. I would not let my dreams sit in pieces, I would tape them back together.
Of course in the process of getting kidneys and trying to arrive back at my planned destination, things got even more complicated. We were told the babies had severe hearing loss. The tears I cried smeared the ink on my precious picture. But I pressed on, sketched in some hearing aids and was convinced I was back on track. We endured meeting after meeting telling us about all the things Max would not be able to do and I really had to face that his life was not going to look like the little boy in my picture. And I made my peace with that. I tore off part of my picture and I allowed him to have a new fresh corner. I accepted that I was going to have a special needs son with cerebral palsy and that life with him was going to look very different. And it took time, but I made peace with that and reached a point where I was no longer sad that part of my picture had to be replaced with a new fresh picture. But, part of my acceptance came with the condition that the rest of my picture needed to stay in place. I would have a son with special needs and that would be part of our life and then Addie would have a normal and typical life that looked like my picture and Al and I would fulfill our need to have the 'normal' expected parenting experience through her.
And I don't think there was anything specifically wrong with that dream and vision. I feel like it was basically what all parents dream of and expect- a happy, healthy, talking, walking kid in normal classes, doing normal kid things. I don't think my dreams were WRONG in and of themselves. But there reached a point where clinging to my ripped, erased and scratched through picture was keeping me from discovering something better.
On Thursday as we sat at the Autism Center and they told us that they were diagnosing Addie with autism, I sat there with my metaphorical picture always in my head and I felt sad. For plenty of good reasons like worrying about whether this would make life more challenging for Addie... but I also felt sad because I could not figure out how to cram one more thing into my already so altered picture. I felt daunted by the task of getting her in enough therapies, but I also felt daunting by how was I going to maintain a 'normal life' and fulfill my vision as a 'normal mom' now with another diagnosis in the mix. Among all the emotions I was feeling was my fear of losing that picture. I was so convinced that the picture was beautiful and perfect and good, even though in reality it was so covered in smeared ink, eraser markers, crammed in additions, and thick layers of duck tape.
It took me nearly a week after getting that diagnosis and of staring at my picture and trying to figure out how I would fit this new reality into my old vision and then of feeling sad about the loss of another part of my picture before I finally grasped what God has been saying to me for a long time: Throw Away the Picture. Throw it completely away. And start over. Let go of the expectations, dreams, images and plans you had for your life and your family. And embrace new dreams, plans and pictures. Don't squeeze new blessings into old plans because they never shine as brightly when they are tucked behind tape crammed into a corner of an old vision. Take a fresh blank canvas and create an even more beautiful picture- not of the kids and life you had envisioned but the precious ones you have been given.
And finally I got the message and realized that as long as I was holding on to what I thought I wanted I wasn't allowing my life to become something better. So it took four years and more diagnoses that I could even list to finally throw away the picture I had of what my life and my role as a mom was going to look like. And in its place there is now a beautiful, undamaged, blank canvas. Now there is more than enough room for a precious little girl to have autism and still be everything we could ever want. There is room on my blank canvas for a little wheelchair, a breathing machine and a revolving door of nurses and therapists. On my blank canvas, I can become an awesome special needs mom without worrying about whether I'm still doing the 'normal' mom things I thought I needed to do or be.
And once I finally did let go of my tattered picture, what I felt was not sadness at all but great relief. And excitement. Instead of worrying about how to fit my life in, I was now free to just see how my life would turn out. When I was constantly editing my picture, I was preventing God from really painting the picture He had envisioned. I thought I was protecting something important but in reality I was preventing something amazing.
And so here we are. I have no idea what all the future entails but I know that life with a son with severe cerebral palsy and a daughter with autism and hearing loss will be challenging, rewarding, joyful, heartbreaking, hilarious and exhausting all the time. And I'm committed to figuring out who I am, both as a special needs mom, and as a person outside of that role- as a wife, daughter, friend and teacher as well. I started a new Facebook page devoted specifically to my role as a Special Needs mom because that is clearly going to be a huge part of who I am and because I genuinely hope and pray that our journey can bless others- those going through something similar, or just those who like seeing adorable kiddos experiencing real miracles. I also separated the page from my personal page because although I totally recognize that being a special needs mom is going to be a huge role in my life and clearly one of God's greatest plans for me, it is not going to be ALL I am. I want to maintain balance in my life and still find ways to connect with family and friends just as me and not as 'Mom to kids with CP and autism'. So I'm going to try and ensure that as I figure out this new picture, I figure out how to be the fighter and advocate that Max and Addie and the special needs community needs without completing losing the other roles I value in my life!
I wanted to share about my experience and how this new diagnosis has in some ways changed things and in other ways just helped me let go of something I should have done a long time ago. Partly just because I have always been open in sharing not just our medical updates but about the emotional journey it has taken me on. But also partly because in some ways this realization has everything to do with special needs kids and in some ways it is something I think everyone goes through in some ways at some time. Life rarely looks like we expected. Dreams change, complications arise and our roles and expectations adjust. And sometimes we get out our duck tape and press on. And other times, we throw out what was and embrace a blank canvas and look forward to seeing a new beautiful picture come to life.