Tuesday, February 12, 2013

Be the Miracle

After Ella recovered from her heart surgery and we were finally able to bring her home, my family and I were so happy.  Actually, happy doesn’t sufficiently describe how we felt.  We were nervous, excited, giddy, relieved, ready, happy.  We couldn’t wait to finally begin our life together as a whole family at home, just the five of us.  Even knowing that Ella’s heart surgery was never a “one and done” type situation couldn’t put a damper on our spirits when we left the children’s hospital.  We knew that future surgeries and hospitalizations were not ifs but whens.  We just never imagined that the when would happen so soon after her homecoming that Memorial Day weekend.

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?  

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!

1 comment:

Anonymous said...

Add to the list ... Because you became her parents, she was baptized and is the Saint we call Ella! <3 to all the cubs!