In
August 2011, due to changes in her eating and breathing, Ella’s cardiologist
ordered an echo to check her heart function.
The echo revealed that the surgical repairs to her heart were no longer functioning
properly. We had to return to the
children’s hospital for a more thorough, internal check of her heart. A visit to the heart cath lab showed that the
pressure in her lungs was high. That
pressure combined with the failing repairs and her other inoperable heart
defects meant an extremely poor prognosis for Ella. The question my husband and I had feared to
ask before – would Ella need a heart transplant? – was now something we hoped was
even possible. But would the high pressure
in her lungs almost ensure the failure of a new heart, no matter how healthy
that heart may be?
For
the second time in our lives as Ella’s parents, my husband and I felt the floor
drop out from under us. Not only was
Ella in heart failure again, but at that moment in time, no one was sure if
there were a damn thing that could be done about it. We were advised, in not so many words, that
we should prepare for the possibility that nothing further could be done surgically
and that we’d have to take Ella home to make her life as comfortable as
possible until….
I’d
had a lot of dark days before that moment, and I’ve most certainly had my fair
share since, but in those moments after meeting with the heart cath doctor - while
Ella was recovering from the lab visit and my family and I were trying to process
this incomprehensible news together in the hospital chapel - I was enveloped by
overwhelming sadness and even despair.
It had been one thing to make the statement that Ella was “my daughter
but God’s first,” but it’s an entirely other thing to accept it, to live it,
and to make peace with it and with the fact that God didn’t promise or
guarantee me a certain length of time with my family here on earth, that God
- not me - is in control of the length of her life.
And
how could I, as a heartbroken mother, sit there and explain all of that to my
two young boys? How could I explain that
while God did answer their prayers – their years-long
prayers – for a baby sister, He might also call her Home before the three of
them could really get to know one another?
How could I explain that in all things, God’s perfect will be done while
I myself am mentally railing against the same #*&$%@ will that might steal my
child away from me? What could I say
when my boys, while sobbing and holding onto me, tell me that we should
try to be grateful that God gave us as much time with Ella as He did? How could I resign myself to my own baby girl’s
impending expiration date?
After
almost a week of review, debate, and discussion by the cardiology and
transplant teams and after constant monitoring of her condition by the PICU
staff, Ella was placed on the heart transplant wait list. What a day that was, and what a relief! Only a few months before, we had dreaded even
contemplating organ transplant, believing it to be a signal of the end, the
ultimate last chance for our girl. But
on the day she was officially listed, we were very happy. Being listed didn’t just mean that Ella had a
chance, even a last one; it meant that other people – professional, educated,
intelligent people who were the best in their field – also believed that Ella
not only had a chance but that she could handle a second chance at life via
transplant. Ella was listed status 1A,
and of course we joked that the A stood for “awesome”.
We
knew Ella receiving a heart transplant would be a miracle in and of itself, but
we also believed that God is an awesome God, full of surprises and infinite
possibilities. So while we waited for
days and then weeks and then months for a new heart to become available, we also prayed for
a miracle, like an actual “call the newspaper, we got us a MIRACLE to report”
miracle. We begged that God grant Ella
miraculous healing, praying day in and day out that He heal not only Ella’s
heart but also all the parts of her body that were ill-affected by her sick
heart. We asked that God grant Ella
miraculous healing through the intercession of Blessed Kateri Tekakwitha,
a holy woman with whom Ella shared the bonds of Native American ancestry and
adoption. We knew that, at the time,
Kateri Tekakwitha needed one more miracle to pave her way to canonization, and we hoped that
Ella’s miracle would be the one. We
prayed for miraculous healing for Ella, but it wasn’t meant to be.
What
a hard pill to swallow after repeating Matthew 7:7 constantly while
praying for my daughter. We asked, but
it wasn’t given to us. We sought, but we
didn’t find. We knocked, but the door
was all but slammed shut. I remember having
the gall to remind Jesus of the Canaanite Woman’s faith, desperately crying
out her words, “even the dogs eat the scraps that fall from their masters’
tables” while hoping that my Ella would receive the “scrap” of a new heart or a
miraculous healing. “She’s such a small thing, Lord.
She won’t need a huge heart. Just
a scrap. Please, Jesus.”
The
morning after Ella died, my husband and I returned to the PICU one last time to
collect her memory box, which contained a lock of her hair, the molds of her
hand and foot, and a small book with personal notes from the medical staff who
took care of Ella for all those months.
We were also there to say good-bye to the people who had cared for and
loved our daughter for all those months.
One of the more difficult good-byes was to the ARNP who had most
consistently taken care of Ella and who had been her medical caseworker (for
lack of a better term). I cried as I
thanked her for all of her hard work on Ella’s behalf. Over the course of several months and because
of her near-daily visits, she had not only gotten to know Ella but she had also
gotten to know me. She knew how
desperately I had wanted Ella to be well, how much I had hoped and prayed for a
miracle. Still crying, I hugged her
good-bye, and as we stood there, she said, “You were her miracle. You were her miracle.”
All
these many months later, I still think about that moment and her words. As much as I miss my girl and wish things
were different and as much as I wish she had received her miraculous healing, I
take a small bit of comfort in the idea that my husband and I were her miracle. For as many “what ifs” as there are with
regard to her death – what if she had lived long enough to receive a new heart? What if different medical choices had been
made? What if we had recognized sooner
the second time around that her heart was failing again? What if?
What if? – there are many I think of with regard to her life. What if we had made different decisions for
her from the word go? What if we hadn’t arranged for her new baby checkup as quickly as we did? What if another family had adopted her and
hadn’t had her seen by a pediatrician?
What if the cardiologist hadn’t immediately fit her into his schedule
but made us wait until the next available appointment five days later? What if the surgeon hadn’t waited until Ella
was big enough and strong enough to undergo surgery? What if?
What if?
Were all of the decisions that we and the medical staff made the ones that gave her eight months, seven days, and twenty minutes of life? Though she didn’t get a hugely spectacular, life-changing miracle, was her life filled with countless, small everyday miracles?
Were all of the decisions that we and the medical staff made the ones that gave her eight months, seven days, and twenty minutes of life? Though she didn’t get a hugely spectacular, life-changing miracle, was her life filled with countless, small everyday miracles?
A
few months ago, my 11yo and I had a conversation about our wee Saint Ella. I think he wanted to better understand how
his sister became a saint, as he’s only got basic knowledge of the canonization
process, most likely gleaned from conversations we’ve had at home regarding
Blessed Teresa of Calcutta, Blessed John Paul II, and now Saint Kateri
Tekakwitha. He knew enough about the
process to know that miracles are needed and have to be attributed to the
intercession of the Blessed. I explained that
Ella was a saint because she had been baptized and had died an innocent in a
state of grace, not having been able to even sin. But then he told me that he knew what her
miracle was. He said, “She made people
happy and made them feel good about themselves.
That’s what she did for me.”
I have had too much time on my hands over the past year to think about all sorts of
inconsequential stuff, but I believe that at least one thing of substance has
come from all these thoughts and talk of miracles. I think that sometimes we want and expect too
much grandeur, too much pomp and circumstance, too much showy, glitzy zing, so
much so that we forget to appreciate that life is really about the small
moments. It’s about the living that goes
on during the minutes that tick away between the loud hourly bongs of the
grandfather clock. So often the grand
miracles we need or expect don’t happen, but we’re so caught up in waiting for
them that we don’t recognize the miracles of everyday life. We wait for God to perform His big miracle,
not realizing or understanding that perhaps He's calling us to be that miracle.
Ella
was my 11yo’s miracle. She loved him
like no one else did because she loved him simply for who he was and she really
loved being with him. She smiled when he
held her and when he visited her in the hospital. She didn’t judge him or call him names or
say, “I love you, but…” She made him
feel good when so many others didn’t. And
Ella was my miracle. Her short life was my
moment on this earth of absolute, unconditional, heart expanding, life changing
love. She made me want to be a better
mom and a better person.
Being
told that I was Ella’s miracle profoundly affected me. It moved me to look at this heartbreaking
loss and Ella’s short time here on earth in a different light, and it has moved
me to look at my own life in a different way.
I can’t help but ask myself how many times I’ve failed to be someone
else’s miracle or how many times I hadn’t even realized that I could be
someone’s miracle. I wonder how many
small miracles I may have missed by waiting for the big ones, how many
opportunities I dismissed because being someone’s miracle is sometimes hard or
inconvenient.
I
think one of the best ways that I can honor my sweet Ella is to try to be the
miracle for others. I can be the
help, not the hindrance; the love, not the apathy; the peace, not the
stubbornness; the hope, not the discouragement.
And I can begin here today, not by waiting until I can make a huge
difference out in the world only to become discouraged by how big the world is
and how small my progress is, but by starting small, starting here in my home, and
starting now with the people God brought into my life who matter most – my
family. Please, God, help me to be their
miracle.
St.
Ella, pray for us!
