Back on July 24th, I spoke over the phone with a nurse at Levine Children's Hospital, and she asked if I would be interested in speaking at the Butterfly Release this year. The Butterfly Release is an annual event that the NICU holds to honor and remember the babies that have been lost. Ironically, the nurse that called, Cindy, was the person who had advised us to stay with Lucy at the hospital that very night exactly one year before. That Sunday night with Lucy was our last night with her, and we have been forever grateful to have those final minutes and hours by our little angel's side.
When talking with Cindy this past July, I felt deeply grateful and started thinking about how I might be able to give back to others. I imagined that speaking would be one way to do that and also honor Lucy's life. The event was still several month away, so I agreed and thought, "I'll figure out what I'll say later."
I have written a lot about Lucy and my grief process on the blog or in my journal, but realized quickly that writing to speak was going to be VERY different. I could't even bring myself to write much of anything until just days before. Here is what I wrote (edited slightly for blog):
8th Annual Butterfly Release
October 13, 2012
Lucy's Light
in memory of Lucy Isadore White
I’m here today to share with you the story of our little
angel, Lucy.
The story starts with my 2nd pregnancy. At our 18
week ultrasound we were shocked to find out that our 2nd child was
going to be born with a major cosmetic flaw – a cleft lip. In the weeks that
followed we learned of several other concerns the doctors had, more
medically-focused, but none seemingly life-threatening, so we decided against
genetic testing. Throughout the entire second half of my pregnancy though I was
in a very dark place. We remained hopeful, but I was very, very scared. I want
to share with you a prayer I wrote in my journal at about 30 weeks, give or
take.
“Dear Lord,
I pray that you continue to unveil your plan and purpose in
our lives. Please prepare us for what is to come. Help us to support one
another and focus on our blessings. Let us remain faithful even when it feels
like hope is failing us.
This child is yours, God, and I pray that you use [her] for
your work. Should I have the opportunity, I promise to raise [her] teaching and
sharing your word. Should I not have the opportunity, I pray that this baby
feel our family’s unconditional love regardless of the time we get to spend
together.
Please remind us of the miracles that are possible when we
remain faithful. I will continue to follow if, Lord, you promise to show me the
way. Amen”
It’s amazing looking back now on that handwritten prayer, knowing
how terrified I was, yet hearing the hope in my words.
Two weeks before my due date I was induced to deliver our
baby. Our little angel arrived on July 19th, and she did amazing.
She even fooled the doctors at first by being such a fighter she was sent to
the regular nursery. However, Lucy’s health steadily declined and we learned on
day three that Lucy would not be with us long. She had a life-threatening
genetic disorder called Trisomy 13 that would claim her life. I finally knew for
certain what I had had nightmares about for months. The odds of this disorder
are one in 10,000 – looking at a statistic like that you just never think you
could possibly be the “ONE.” Trisomy 13 is described as “incompatible with
life,” yet it was so hard to believe when here was this little miracle living and
breathing before our eyes.
Lucy’s name means “light.” She truly was radiant. She lit up
a room like a little ray of hope, a reminder of God’s love. We are blessed to say that we got 5 ½
days with our daughter. And in those days with Lucy, God showed us the true
power of love. We were able to spend time as a family of 4 – to show both of
our daughters what unconditional love was and is. It’s a love so strong and so
impassioned that it truly knows no bounds. An unconditional and uninhibited
love. A love like there is no tomorrow.
I came across this quote from Beth Moore: “True love is not
at all blind. When we are vessels of agape, our spiritual eyes will be open
like never before, because only true love can really see… right into the heart
of God.”
I don’t know if that speaks to you, but it sure speaks to
me. The very miracle of Lucy has opened my eyes, given me purpose and given me
hope. Do I understand why I lost her? No. Do I wish she was here in my arms? Of
course. Have I wished that she was born without the disorder that took her
life? Absolutely. But I also know that without it, well, frankly, she wouldn’t
be my Lucy. She wouldn’t be my little Lucy that had the strength to ignite an
absolute love fest of Godly proportions.
I still think every day about how I want people to see
Lucy’s light in me. Because Lucy’s light is truly one lit by the love of God.
Amidst the fear, the cold, the darkness, confusion and deep agony, we learned
to love like no other. I want to share that love and that hope with others.
Before I ever knew what Lucy’s fate would be, during pregnancy with her, I had
said that prayer. I had promised to continue to follow God if He promised to
show me the way. While the way hasn’t always been 100% clear at times, the path
is surely lit with His love.
This coming Monday, October 15th is Infant Loss
Remembrance Day. At 7 pm around the world people will be lighting candles in
honor of their babies that have been lost – it will be a wave of light. We’ll
be lighting our candle for Lucy, and I encourage you all to light a candle in
honor of your sweet little one. As we remember our babies, may we also take a
moment to consider how we can let their memory shine through us. We have a
chance to give back, to love in uninhibited ways, and to walk with purpose. I
always think of the song, “this little light of mine, I’m gonna let it shine.”
I want to SHINE.
Thank you Lucy for being my daughter… you are a light in the
darkness that will never go out. We love you so much. For
living such a short little life here on this earth, you sure have an amazing
purpose.
Your big sister Avery asked me if we could go on an airplane
ride and come see you the other day. When I explained to her that it wasn’t
that easy she thought for a minute and said, “How about a rocket ship?” Though
we can’t take a plane or a rocket ship to heaven, we’ll send a butterfly into
the sky in honor of you today. I
miss you so much and I can’t wait to see your face again one day.
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| Avery and her butterfly |
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| Lucy's brick in the Our Children's Memorial Walkway |
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| Me and Avery by Lucy's brick |
