Today is my Bodey’s fourth birthday. He is a gift I never thought I needed or one that could teach me so much. And I want to tell you what he has done to my heart.
As my doctor walked in to report the findings of my 20-week ultrasound, I had the feeling that she was going to tell me that they found something wrong with Bodey’s brain. I have no idea why that thought graced my mind, but it did. I have seen breadcrumbs like this the whole way. As if I was being prepared for Bodey. That’s another blog or book.
She opened the door, sat down and said just that – his lateral ventricles were enlarged. She apologized for having to share the news with me. She’d cared for me since my pregnancy with Ethan and I could tell she felt badly. She even muttered something about it being unfair. After further conversation she mentioned they didn’t really know what this finding meant, perhaps a developmental delay. She didn’t know. She did recommend a fetal MRI to look deeper. We proceeded with that and monitored him the rest of my pregnancy with no clear diagnosis or definitive concern.
Bodey was born with some breathing trouble, but a few days later we all went home together with plans to visit the neurologist six weeks later. In the next several months he did not develop typically and given my experience with Ethan, I began reaching out to the therapists that we knew to come see Bodey.
About a year later after several inconclusive tests and a few trips to the neurologist, we sought a second opinion. We sat in front of a neurologist recommended by one of Ethan’s doctors and she said, frankly and decisively, “you need to test him for a series of rare muscular dystrophies”. She went on to say that the group she suspected have a range, some children live a very short life, others live longer, and other still longer. She also said there was limited research and no treatment.
On Christmas Eve that year, Erik and I sat in our car, heat blasting and our kids inside our house with a babysitter waiting for the doctor to call. On our call she confirmed that Bodey did have a muscular dystrophy in the family she suspected. He was diagnosed with the moderate version. She gave us a few things we might expect, but she could not predict his life, what it would be like, or what his longevity would be. We got off the phone and went back in the house to get ready for Christmas.
So here we were being asked to love and raise a boy with a rare disease, with no treatment, no options, little research and an uncertain future. How could I let myself love him? How would my spirit have the strength to weather this? I was so tired from grief and illness. No treatments? I had just fought like hell for Ethan using all kinds of medical strategies and how I was supposed to surrender to this illness? Let it take hold, control? How would I tell people? What would our life be like?
Over the last four years I have let Bodey into my heart. We love him more than anything. He has helped to heal us. I have watched my boys care for him, protect him and love him. With each piece of equipment that enters our home, my heart hurts and yet it also leaps because we can help him some more. He looks so much like Ethan. It’s uncanny. And I’m sure no accident. It’s as if he’s continuing the refinement of our hearts that Ethan began.
Each day we walk in deep love, on the path of the unknown. It’s hard. It’s physically hard, emotionally hard and many days it feels horribly unfair for us and for him. Yes, my heart aches when I see a four-year-old riding their bike and carrying on full conversations with their mom. But I’m also aware that something deeper is happening here. Bodey is teaching us to hold our suffering and hope in tension. His life is not a mistake. He is not less than or other than. On the contrary he is a living invitation for us on a daily basis. I could write many chapters just about Bodey, but I leave you with four things he has taught me. Four things I’m very thankful for.
1. Bodey has taught me I still have fight left in me. When he was 18 months old we went to a family education day at a university with a NIH grant to study the family of muscular dystrophies that affect Bodey. I watched as those afflicted with the mild version not involving cognitive impairment advocated for themselves. I then walked into the adjacent room where kids like Bodey sat in wheelchairs with their care takers. Something was wrong with that picture. In his clinic session the next day I asked who was tackling cognitive impairment with this group of muscular dystrophies. The doctor’s longwinded answer basically said “no one”. I thought to myself, “oh hell no these kids are not being overlooked”. And so for the last two years I’ve been working on creating a research project for kids like Bodey. It’s slow moving and it’s going to be a needle in a haystack to find funding, but I will try. I still have fight. I know that is one of the gifts God has given me.
2. Bodey has taught me to open my heart again and to love bigger. He’s helped my heart expand in love and compassion for so many. He’s shown me the gifts and invitations that children and people with cognitive impairment call us to. He keeps peeling away my own limited thinking, my ignorance, my blinders, my prejudices, and calls me to love others better and bigger. Bodey is a child of God. Born completely perfect in God’s eyes. He is teaching and challenging those willing to see God in people of all abilities.
3. Bodey has taught me that that the world is NOT created for or accommodating of disabled persons. We talk about compassion, awareness of those with other abilities, and creating equality for all. But we have a long way to go. I can’t tell you how few places truly work for those on wheels. This has to change.
4. Bodey has taught me to surrender. Bodey has taught me to throw up my arms and release my control, my wants, my plans, my ideas, and my views to a God who sees the big picture. After Ethan’s death I was so angry. Ethan’s death dismantled my faith. Bodey’s life is now rebuilding it. It looks so different. I am meeting a compassionate, loving God. I’m surrendering to the mystery. There is beauty in the mystery. Think about that for a minute. There is beauty in the mystery. I cannot know God in my head. That didn’t work. Because all of this, it does not make sense. But in my heart, in my spirit, I’m learning to surrender to whatever I am called.
Bodey’s story has broken my heart. Just when I thought it could not be more broken. And yet, he is teaching me to rebuild it into a more beautiful form. He is a gift I would have never chosen, wanted and even rejected. But a gift I needed. A gift that was designed just for me. There are no coincidences, no mistake.
Our wounds are sacred. They are ripe spaces for growth. There is always something deeper happening within them. We just have to seek that meaning. And when we find it, we get to choose what we do with it. Choosing to say “yes” to Bodey takes daily grace and surrender. It takes me giving up things I don’t want to give up. But in this continual surrender, I am finding myself, my purpose and the love of God that can only be found in the broken spaces.
There is resurrection for all of us, in and through the places where we think we cannot stand. I wish I could introduce all of you to Bodey. On his birthday today I hope you will think about that which feels like a dead end in your life and consider that you can experience new life and resurrection through it.
Happy Birthday to my dear Bodey boy.
Thank you for coming to earth to teach us and accompany us on this journey of life.
I can’t wait to see what you accomplish in your 5th year.
I love you so.