Broken. Pieces Missing. Spaces Empty.
Two and a half years ago, when Mikayla was about two weeks old, we sat in a doctors office and the Pediatric Cardiologist told us there were some problems with Mikayla’s heart. One problem in particular was a red flag that pointed toward her having “a syndrome”. He didn’t name the syndrome because he didn’t want us to worry. Apparently he’s never used google.
I cried. I remember kissing Mikayla and hearing the doctor say, “It’s very important that you know this is not your fault.” Those words would bring comfort in the months ahead. Something about a medical professional saying “it’s not your fault” stuck with me more than hearing the same words from friends or family. He didn’t know me. He didn’t know anything about what I did or didn’t do throughout my pregnancy yet he still knew there was nothing I could have done to either prevent or cause this diagnosis.
As soon as we got home from the appointment I googled “branch pulmonary stenosis” – the red flag. And, what do you think came up? Williams Syndrome. It fit. I knew it as soon as I read the description. I realize you can research any number of random illnesses on the internet and find a way to diagnose just about anyone, but I knew this was the answer. Call it a mother’s intuition. Or perhaps I’d just been around enough newborns in my life to know that Mikayla was exceptionally difficult.
In those few weeks between the cardiologist appointment and a confirmed diagnosis from the geneticist it felt like I was just holding my breath. Everything was put on hold. I didn’t grieve, I didn’t rejoice, I just existed day to day…waiting.
When the geneticist called us to come into her office to receive Mikayla’s test results we knew that the results were positive. At that appointment everything shifted. I was no longer just waiting, I was acting. What’s next? What other tests need to be done? What other doctors need to be seen? Physical therapy? Feeding therapy? Our lives went from waiting to hurricane in that one conversation.
A diagnosis like this means that there is a fight ahead. As a mother you focus on fighting for your child and everything else is shoved aside.
In that instant our lives changed forever. The child that I had carried for 9 months, planned for, dreamt for, was not the child I held in my arms. Please don’t misunderstand – I’m not at all comparing this to losing a child. To lose a child is a pain and loss and grief that I cannot even comprehend. But I did lose. I lost my plans and my dreams and my expectations.
Without even realizing it my mind took the pain, grief, fear, loss, anger, disappointment, questioning and packed them in a tightly sealed rubbermaid tub and placed that tub on the farthest shelf in the darkest corner where it would sit, unnoticed, for about two and a half years.
I don’t remember feeling any of those things in the beginning. I remember being tired, mostly. Mikayla’s first year was tough. There was a lot of screaming – mostly from Mikayla, a little from me at times. I remember feeling different – like I was constantly wearing a giant sandwich board that read “I’m different. My child is different.” I also remember feeling strongly that Mikayla was created whole. She was created to be just what God planned for her to be. She is perfect and complete just the way she is.
Is she different? Yes. Will she face struggles and challenges in life that most people don’t have to face? Yes. Is she broken or sick or lacking because she has Williams Syndrome? Absolutely not.
Mikayla had two or three appointments every week for those first months. Either a test or a doctor visit or therapy session – one thing after another. When she was about 10 months old she started out growing many of her medical concerns and the appointments became fewer and farther apart. Right about that same time I went back to work. I started my part time roll on staff as the Children’s Director for our church.
As soon as I had a bit of breathing room from Mikayla’s demanding needs, I filled it with another demand. I worked in this roll for a year and a half before I realized I desperately needed that breathing room. I had not recovered from those first difficult months. I had not allowed myself to slow down and be quiet long enough to heal, to process, to grieve.
I resigned at the end of July and the past few months have been wonderful. I have been physically busy – training for and running a marathon, keeping up with an extremely active toddler, volunteering at church – but mentally and emotionally I’ve been quiet. The stress and pressure and mental work is gone.
I don’t know if it was the quiet or the running or both but something knocked that old, dusty rubbermaid tub off it’s shelf and spilled it’s emotional contents onto the floor of my brain. For the first time since Mikayla’s diagnosis I realized that I needed to grieve, that I had experienced a loss and I needed to allow myself to feel that pain and anger and disappointment.
For me, this process only lasted a couple weeks. Postponing the grieving process meant that I was in a healthier, well rested place and could think through my emotions and feelings clearly and in a more rational way. It also meant that I was in a season of life where I was surrounded by a close circle of friends that truly love me and truly love my child and even though they weren’t aware of the process going on in my brain, they were there, they were with me.
It may not be like this for everyone. Everyone grieves and processes differently. For those two weeks I felt broken, like some pieces were missing and spaces were empty. For some, the feeling of brokenness may last much longer, but there is healing ahead.
In her book, Bittersweet, Shauna Niequist writes, “what is empty will be filled, what is broken will be repaired, and what is lost can always be found, no matter how many times it’s been lost.” Beautiful words of encouragement and hope.
I still feel different in many ways, but I’m thankful for it. The things that make Mikayla different have brought us to new things, new people, new experiences. She has a natural ability to attract attention (aka – she’s a show off) that has started many conversations with lovely strangers. She is constantly surprising us with her two-year-old craftiness and gifting us with her smile and her singing.
Life will get easier. For us, we take things a day at a time, we keep lots of breathing room in our calendar, we still have more doctor appointments than most people, and we approach planning and dreaming for Mikayla’s future differently than most parents (a blessing in disguise, I think, but that’s another post altogether). We adjust, we cope, we make do until one day we realize that we are living life and it’s beautiful and sweet and full.