It’s been three years, one month, and a few days since I fell to my knees on the emergency room floor and knew she was gone.
Around the anniversary of my daughter’s death, just a few weeks ago, something new came to me while living in her memory. I was thinking about a moment in the Pediatric Intensive Care Unit, several days after her open-heart surgery. Her breathing tubes had been removed, her tiny chest stitches were beginning to heal, and she was awake and responsive and beautiful. At one point, during the doctor rounds she made a noise I can only describe as that of a small hissing kitten. Her mouth was open to cry, but try as she might, a sound barely came out. I asked the doctor what was happening. She explained to me that she was crying, but that she had no voice. Her vocal cords were likely damaged during the surgery, and it was hard to say if they would ever be the same again. Apparently, and especially with very tiny patients, this damage during heart surgery is a fairly common thing. The nerves that control our vocal cords follow a path down our airway and then wrap around the aorta. Avoiding them during heart surgery is nearly impossible, and in my mind, probably the least of their concerns during the process. That didn’t make it any less heartbreaking to think she might not ever have a voice of her own again.
I could focus on the fact that I lost my daughter when she was only six months old and tell you about the gigantic crack that left in my heart. I could tell you about the terrible agony I feel knowing our family photos will always be missing one or how awkward it can be to answer the question when people ask, “How many children you have?” I could tell you in detail how it feels to watch your baby lay in a hospital bed after open-heart surgery afraid to hold her fragile body but desperately wanting to do so. I could tell you about grief, and how uninvited it comes knocking on my door still and how it shifts and changes and won’t let me be. But. Maybe this second cup of coffee is giving me extra attitude – or maybe I just really want to live in the joy of right now – but today I just don’t really feel like talking about the saddest part. I’d rather tell you about her life, and her beautiful heart, and how her short life breathed new life into mine.
She was never supposed to be here. I mean, she was, and then she wasn’t. We were so excited to be having our second child, a baby girl this time. She was dreamt about, and even announced. However, all of that was overshadowed a little over halfway through my seemingly perfect pregnancy. I was sent to a specialist to have something checked out and after lots of blood work and ultrasounds and an amniocentesis that nearly made me faint it was determined that our baby girl had a chromosome disorder – Trisomy 18 – and that she would not survive. I was six months pregnant. And now I was shell-shocked.
My life as I knew it changed completely in an instant. I stopped dreaming of her. I stopped planning the nursery and thinking of names and picturing her sweet face swaddled in my arms. I felt numb, and alone, and broken-hearted. I became quiet and reclusive and still. Strangely, the only person I felt really comfortable with was my twenty-one month old son. His world was simple and sweet and he was the only one who didn’t want to talk about it. The specialist prepared me that I might miscarry at any moment. I took a leave of absence from my career and woke each day wondering if the baby inside me was still alive. It became day after day after day of waiting for what would surely happen, until we found ourselves just days away from my official due date. If she was born alive, she would probably only live minutes, maybe hours, possibly days. There was no need to bring a car seat to the hospital.
The morning she was born and they placed her on my chest alive, I didn’t know what to do. There was only that moment to be in. I didn’t shed a tear as I held her and cautiously loved her- waiting for her final breath. Lots of checking and re-checking and monitoring her. That room was so quiet. Everyone was so quiet. Before realizing it, the minutes turned to hours and hours turned to days, and soon we looked at the doctor on staff and asked, “What now?” She replied “Now, you take your baby home. Where is your car seat?”
Our sweet girl lived a very normal and uncomplicated life at home. And we tried our best to do the same and to ignore the big mean elephant that had moved into the room. She was, for lack of a better term, an exception to the rule of her diagnosis on so many levels. She never spent a moment in the NICU and came home without a single wire or monitor attached to her little body. But that’s just the thing with chromosome disorders, there is just no way of knowing what kind of mess the extra or missing pieces has created inside. As the months went by, and she began to grow, her heart could not keep up with the stress of the large hole inside it. We found ourselves in the hospital again – this time handing over our tiny girl to surgeons who agreed to try and fix her heart and who wanted to give her every fighting chance at life that they possibly could.
Life is really beautiful. There are hard things – so many hard things. We are so incredibly thankful for that time with our daughter, especially considering we weren’t even guaranteed a minute of it. That surgery didn’t fix our baby. Her heart was repaired, but there were still so many unknowns. And even after we were home, and she was comfortable and happy, something took her and she couldn’t be saved.
As I reflected on that post-op moment in the NICU, it dawned on me how beautiful that little anatomy lesson truly was and how much it played out in my life after her arrival. I don’t feel like the same person I was before she entered my life. In fact, sometimes I think of that girl as an entirely different person all together. Like going through that, still going through that, has awoken the version of me that demands more out of life because I’ve seen firsthand how fragile and temporary it all can be. This woman has a stronger heart and a stronger voice. It’s really crazy beautiful, isn’t it? We know our voices rise when we feel passionate about something close to our hearts, but to now realize that God so intricately designed us so that our voices and our hearts are actually physically intertwined is such an amazing thing. My daughter came into my life and was gone so quickly, and yet God used her short life to change mine forever. And when her heart no longer beat and her voice could no longer be heard, he made my own heart and my own voice stronger.
What a beautiful heartfelt sharing of the heart. I am so blessed having read this and I am so thankful for you sharing your heart.
I am a mother of two adopted children and have faced and still face the feelings you have shared. My child that is medically fragile is still hanging on and has his ups and downs.
My children, theirs and our struggles, have changed us forever and taught and continued to teach us so many lessons in this life we would have never had an opportunity to learn. We have been told how powerfully our children whose fragile lives change those that have an encounter with them. They leave a profound mark in this world and have a calling on their lives that only they are able to be called to do.
Blessings and hugs to you for your post. I was having a hard time this morning and this post and open sharing has touched me.