Strength That Few Have
I held her in my arms in the rocking chair gently rocking back and forth; the weight of her body putting my arm to sleep as I sang her a lullaby of my own making. She opened her eyes for a moment to look at me; then she gasped as her lungs filled with fluid, and she was gone. I knew as I rocked her that this would be the last time that I would ever rock my baby to sleep; I knew that this was goodbye; I knew when I began rocking her that she would die in my arms.
Before I had children of my own, I thought I understood what it meant to be Mommy; I thought I knew that there would be tough choices to make, that there would be certain things I would have to give up, and that it would take a lot of strength and courage to be the best Mom I could be. Other moms had tried to describe it to me, but the truth is that the amount of strength and courage that it takes to be a mom – even on a good day – is unfathomable until you have children of your own; having a child with any sort of special needs multiplies the need for that strength even more. Before Lynnea was born, I, of course, never could have imagined that after only 20 short months with my child I would have to hold her in my arms knowing that I was rocking her to sleep for the very last time. Her lifetime was filled with moments that constantly challenged my ideas about what it meant to be Mommy.
I remember taking Lynnea to the ER for the first time. She was seven days old. Someone handed me a small stuffed teddy bear; I stood there silently holding it, watching as doctors and nurses frantically rushed around my baby doing all kinds of horrific things to her. I overheard their conversations, but at the time I wasn’t yet fluent in “doctor speak” so it was like listening to a foreign language with the occasional word or phrase sounding familiar. I heard the phrase “heart murmur” being thrown around, and moments later a doctor informed us, “We think there is something wrong with her heart. We are not equipped to take care of her here. We need to send her to a hospital with a NICU. Which NICU do you want us to send her to?”
After making the first of many snap decisions about the medical care my daughter would receive, I watched as she was taken to another room so that they could try to place a breathing tube. Ten minutes later a nurse told us that, “The doctors are having a really hard time intubating her. You need to come now to be with her.” This was doctor speak that I understood: “You need to be with her now” clearly translated to “We don’t think she’s going to make it and you should come to say your goodbyes now.” This was the first time in Lynnea’s life that we were “told” that she wasn’t expected to make it through the night (which, for the record, isn’t something that gets easier to hear no matter how many times you hear it).
Very early the next morning we met with a cardiologist for the first time. I listened as intently as I could in my panicked and sleep-deprived state as she explained how a normal heart functions; she drew a picture as she spoke to make it easier to understand. Then I listened as she began listing off the abnormalities that had been found with Lynnea’s heart. The list went on and on, and I remember wondering to myself somewhere in the middle whether or not there was anything “right” with Lynnea’s heart. It turned out that Lynnea had a severe complex congenital heart defect known as hypoplastic left heart syndrome (HLHS), which on a very basic level, meant that she was trying to survive with half of a heart. Lynnea fought an uphill battle from that moment on, with one thing after another not going according to the doctors’ plans.
This meant many long hospital stays. During these stays, I lived with Lynnea in the hospital, and our older daughter, Ashlyn, lived with my parents. In order to try to compensate for this division of my time and attention, my parents brought Ashlyn to the hospital to visit nearly every day, and once a week when no one else was available to babysit for Ashlyn during the day while my parents and husband worked, she would spend the day with me at the hospital. Entertaining an almost-2-year-old in the hospital is challenging to say the least – certainly not the ideal setting for childcare – and keeping Ashlyn happy was made even harder by the fact that Lynnea remained in the Pediatric ICU because she was very unstable. Thursdays were my day with Ashlyn, and March 5, 2009, happened to be a Thursday. It also happened to be a day that again redefined my ideas about exactly how challenging parenting can be at times.
After spending an hour-and-a-half trying to convince her to take a nap in the family lounge without any success, Ashlyn begged to go to the hospital playroom to play for a while. This sounded like a good idea, but I insisted that we go to Lynnea’s room to check on her first. I walked into Lynnea’s hospital room and was surprised to see a group of doctors gathered around her bed. I looked at my watch to confirm that it was indeed too early for afternoon rounds. I continued to look around the room and try to assess what was going on while Ashlyn asked me when we were going to go to the playroom. The nurse came over to me and calmly explained, “Lynnea’s EKG was doing some strange things. Fortunately, the cardiologist was in the room when it started happening. Now we’re just trying to figure out what her heart is doing and trying to stabilize her again.” I nodded to the nurse as Ashlyn again asked if it was time to go play a little less patiently than the time before. I sat down in the rocking chair and explained to Ashlyn that Mommy needed to stay with Lynnea to talk to the doctors for a while. I handed her a small toy from in my purse and she managed to entertain herself with it for a time. As I sat there, I noticed that the crash cart and emergency intubation cart were parked there beside my rocking chair; I knew that these things belonged in the hallway, and the fact that they were at Lynnea’s bedside was a very bad sign, but I couldn’t risk alarming Ashlyn, so I sat there calmly with her on my lap desperately hoping that my parents would come soon to take her home with them for the evening.
Within a few moments it became clear that Lynnea was not stabilizing, and the decision was made to place a breathing tube. Since I had no desire to watch as my baby endured an emergency intubation, and this was something that Ashlyn certainly didn’t need to witness, we moved to the hallway, bringing the rocking chair with us, sitting right outside the door. By this time, Ashlyn had stopped asking to go to the playroom and began dozing off in my arms as I rocked her.
There was a steady stream of doctors heading into Lynnea’s room, and I could overhear the attending doctor at the nurses’ station making phone calls to everyone on the cardiology team with a sense of urgency that made me uneasy, “…Yes, you need to come now, we need you here. It’s Lynnea.” It didn’t take long before I saw every member of the cardiology team filter into Lynnea’s room one by one, and as the door would open and close I would catch a glimpse of them frantically bustling about at her bedside as she went into cardiac arrest. I didn’t believe that my day could get any worse. And then Ashlyn woke up and proceeded to throw up on me. There I sat, helpless as my baby fought for her life; helpless as my toddler puked all over me.
Having moments like that continued throughout Lynnea’s life; each one making me a little bit stronger, while at the same time breaking my heart a little bit more. There aren’t words to describe most of them – there’s no way to accurately capture how it feels to watch your child cry silent tears while her eyes beg you to make the hurting stop and to take the breathing tube out of her throat; or, what it’s like to sit at your baby’s bedside for 72 days wishing for the chance to snuggle, but only being able to hold her hand and stroke her hair; or, how hard it is to watch your child lying naked and lifeless on a hospital bed, while a machine pumps blood in as fast as she is bleeding it out; or, knowing as you ride in the back of an ambulance that, this time, your baby isn’t going to come home with you again – no, those things cannot really be shared.
A few days before Lynnea’s fifth heart surgery her surgeon stopped by her hospital room to talk to me about the procedure. We talked for a bit about what the surgery would entail. By this time, I was having a hard time trying to constantly stay optimistic about her prognosis. In an attempt to try to be encouraging, he said to me, “You know, I’ve known a lot of parents of these HLHS kids, and I’m often impressed by them. They are phenomenal individuals – you are a phenomenal individual – with strength that few have. I would never want to parent a child with this condition.” I sighed heavily and after a long pause I replied quietly, “But what if I don’t want to be a phenomenal individual – what if I just want to be a Mom?”
I realize that there is a lot of irony in my reply to the surgeon; being a mom generally does mean being a phenomenal individual and becoming a person beyond any expectations we may have had at the beginning of things. As parents, we never know what is going to be expected of us, and it is impossible to know how strong we really are until the need for that strength arises, and then, somehow, against all odds, it is there; we are strong, and we make it through whatever comes.