Today my Bodey is 2. I want to begin to share his story. Truthfully, I've been unsure if I want to. I wonder if I want to put myself out there again. I wonder if anyone wants to hear it. I fear shame and pity. But I feel called to share. And so I'm listening to that call. I'm saying yes to this invitation I have received by being the mother of my beautiful Bodey.
And so I share that you may learn from him. That you may be encouraged in your own life. And that if you feel up for it, you will walk along side of me as I navigate this story, this journey.
When we learned Bodey would be joining our family, it was a surprise. It was early 2014 and we were still deep in the fog of grief. I could barely think about a member of our family not ever physically meeting Ethan. I felt a disconnectedness early in my pregnancy. In hindsight, I was just sad and tired. So tired. At my 20-week ultrasound I intently focused on Bodey’s heart. Though the tech told me it was too early, I saw 4 chambers and breathed a sigh of relief. I barely noticed that the tech left the room, came back and did some more measurements.
As I stood in an exam room waiting to see my OB for my regularly scheduled appointment, I had this deep knowing come over me that she was going to tell me they found something going on with his head. The last time I had that feeling I was walking Chase in the hallway waiting to speak with Ethan’s doctors when he was inpatient at Children’s Hospital of Wisconsin. I had this knowing come over me that they would tell me their final decision was not to offer him a heart transplant. My OB walked in the room and told me that Bodey had slightly larger lateral ventricles in his brain. I knew all about the heart’s ventricles, but had no idea what the brain’s were all about. She went on to say that his anatomy was otherwise perfect. Sometimes they see these slight variations and they would just watch them. As we left the office, I casually mentioned this to Erik. I think in that moment we both ignored the concern this type of information may typically bring.
As my pregnancy continued, Bodey was monitored. I even spent my 39th birthday in the same office with the same perinatologist that diagnosed Ethan and did my amnio. He too felt this was a transient case of mildly enlarged lateral ventricles. Again, news that allowed me to push aside any real concern. I consciously chose not to have an amnio because it would not change anything. Erik and I barely spoke of what could be wrong with Bodey. This was so very unlike us. We spoke so in depth about Ethan all the time. It was like our hearts and minds could not handle another child with an unknown future. We barely breathed any of this news to anyone.
I was so nervous the day Bodey was born. I barely slept the night before. It was like my body new something, my conscious mind did not. I shivered on the table as I was prepped for a c-section. The doctor played Dave Matthews in the delivery room and the mood was light. After Bodey was born he cried and then had trouble breathing. Again, this was chalked up to a difficult transition from a c-section. He was taken to the NICU where he easily recovered. After the attending doctor learned about the enlarged lateral ventricles and Ethan’s history, he ordered a MRV and echo. The echo was perfect. They did find some abnormalities on his head scan. Since he was so new, they could not make any definitive diagnosis. They said it would take time to figure out what was going on, but that he was otherwise healthy and doing well so we were cleared to go home.
I looked over at Erik as the neurosurgeon was talking. His face was white. Another child with an unknown something? Are you kidding me? Some kind of cruel joke. I had struggled so with God and with God’s love. Just two years after Ethan died, I felt dropped again. Dropped in the midst of another unknown. We took Bodey home not breathing any of this information to anyone. It would be a day-to-day learning, observing Bodey and figuring out what might be next.
As time progressed, we noticed that Bodey was not developing typically. I picked up on it very early on. Doctors dismissed most of my concerns saying he was so young. I knew different. I wanted to believe them. Finally a couple days before Christmas 2015 we learned that Bodey has a very rare form of Congenital Muscular Dystrophy (CMD). So rare, there is no treatment and little information about it. So rare, they would not have found it on an amnio or micro array. So rare, I have only met two mothers with child with Bodey’s same diagnosis. So rare, a doctor we met with told us we should fund a mouse study. This is a very preliminary way to understand a disease and it’s natural progression. Discouraged does not begin to describe our feeling.
Here’s the thing…in the last two years we have fallen in love with Bodey. We have fallen in love with his smile, his cuddly nature, his happiness. He is full of joy. He is determined. He is feisty. He wants to move and communicate. He loves us. He laughs with delight when his brothers play with him. He has stretched me when I thought I was already all stretched out. He has challenged us and pulled us once again into another world of rare diseases and of families fiercely advocating for answers and help.
There is no cure for Bodey’s Muscular Dystrophy. He will have a life of challenges. We don’t know what his future looks like. We are actively learning and at the beginning stages of looking for ways to advocate for research. We are also learning acceptance. We fought so hard for Ethan. We expended every resource and then some for him. I’m wondering if this time I’m being taught to be still. To just sit in this. To listen. To be okay with the unknown.
Bodey is my invitation. My invitation to find God’s deep love in the stillness of the unknown. He’s my invitation to love again amidst the unknown. He’s my invitation to be still and know…that I am loved. That I am held. That our family is held. My invitation to be stretched, to slow down, to think differently, to make my world even bigger as I learn about other children similar to Bodey. It’s not an invitation that I wanted, but it’s one I have and I’ve accepted.
Every hard thing is an invitation. Every hard thing is a chance to see things differently, to look for goodness and love in unlikely places. It’s an opportunity to make a change, make a difference. It’s an opportunity to see life differently. It’s an opportunity to learn more about who God is and what this life is all about. I don’t believe in coincidences. Though I wouldn’t choose this, I’m very certain on some level I have. I’m certain Ethan is in this. I’m certain God’s Spirit is in this too. And so I watch and I listen.
I distinctly remember sitting in the lobby at Boston Children’s Hospital watching parents with children like Bodey. I would think to myself, at least Ethan can tell me he loves me. At least he’s totally typical neurologically. At least I don’t have do deal with that….and now here I am. Dealing with “that”.
Life is full of gifts, often disguised as invitations dressed in pain. I’m so thankful for my beautiful two year old who invites me into life deeper still. I don’t know where we are going, but I know it’s going to be a great ride. Ethan’s life made our lives so rich. Bodey’s will too. And we will love him fiercely, just like we do all our boys.
Happy Birthday Bodey! We love you. You are a gift. Thank you for inviting us to see more, to love deeper and to live ever more present and thankful. You are a great blessing to our family. We look forward to watching you grow into the Bodey you were created to be.