It’s 2:00AM. I’ve been dozing off on the couch in the living room next to my son’s makeshift bedroom that we’ve created for him. It used to be the playroom. We like having him here because he’s close to where we do most of our life—the living room and kitchen. My husband is sleeping upstairs in our bedroom and will come to switch with me soon. Our nurse cancelled tonight and we are all too familiar with these shifts. It’s in the quiet of these nights that I do so much of my thinking.
I was always one of those girls who wanted to be a mama. I enjoyed babysitting. I deeply invested in the families that I cared for. I was a nanny. I was a preschool teacher. I loved being around children. It felt natural to me. I was passionate about inclusion and teaching children with special needs, never in a million years thinking that I’d be on the other end of that conversation. I read ‘Welcome to Holland’ with such a deep admiration for those parents never realizing that I would be one. This isn’t the story that I would’ve chosen for myself but I do find myself thankful that Someone chose it for me. Of course every moment of every day isn’t that way.
Motherhood for me has been learning to live in the tension. My husband and I adopted a sweet girl when she was one and we’ve strived to live in the tension with her story, to honor and mourn the loss that our precious girl experienced (loss of first family, loss of birth country, loss of friendships and caretakers) and to celebrate the beauty of being together as a family. The one couldn’t exist without the other.
When we found out that our son had a cystic hygroma at my 10 week ultrasound appointment, I cried and cried and wanted it to all go away. It did. It resolved itself and we were released from the maternal fetal medicine clinic and no longer considered high risk. For the remainder of the pregnancy, I lived in the tension. Hoping and praying that he would be healed while also wanting to prepare myself for the alternative. I couldn’t imagine that my future would be full of countless specialists appointments and testing, months of hospitalization, five weekly therapy sessions, phone calls with nursing agencies and insurance and equipment companies. I wasn’t prepared for equipment alarms, trach changes, Gtubes coming out, turning a home into a hospital. Never did I imagine my future would include an undiagnosed genetic disorder and a long list of diagnoses.
Never did I imagine the strength that this motherhood journey would instill in me, the advocate that I would become, the contentment in the simplicity of time with those I love, the delight in milestones reached, the peace regardless of the circumstances. My life has been changed.
Here I am, in the midst of it all, with my heart being pulled in so many directions. I don’t want him to suffer, and I long for him to have friends and to be seen and to be loved for who he is. Do I grieve because it’s sad? Or do I celebrate because he is fearfully and wonderfully made? He brings us such joy and has taught us to love so deeply. I ache when I see other children his age, hear them talking and see them running around. But I rejoice when I reflect on exactly how far he has come, how far we have come, and on this beautiful life that we have. Am I sad that my children can’t talk to each other? That Eli isn’t able to chase Zoey around and drive her crazy like a little brother should? Or do I smile when I watch them together? I know that communication is so much deeper than talking to another person and they are each other’s favorite friend. Their relationship is simply perfect. Can I rejoice and grieve at the same time?
I cling to the hope that one day, all things will be made new. Because of that, I can treasure my children for who God has created them to be. I can grieve and simultaneously be thankful for our story. I can live in the tension. I can do things that I never imagined or expected. You can, too.
Lizzy and her family live right outside of Raleigh, NC, She is a part-time working mama, part-time stay at home mama of a spunky 4 year old and a precious 2 year old. Lizzy enjoys connecting with other mamas of children with medical needs and can be reached at email@example.com.