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.
