Wednesday, April 20, 2016

Happy Birthday My Girl

Here I am posting one day late because I felt so slammed yesterday that I went to bed at 10:00 p.m. The girls were still up, probably high on cake, and I asked Ava to get Gwen ready for bed. Yes, I asked my seven year old to put the newly five year old to sleep.

I just didn't have the strength required to see them through brushing their teeth, putting on lotion, changing into pajamas, reading a story, rubbing their backs...It seemed an impossible task to complete. My eyes did not even care that my request was so absurd. They did not care that I did not post something about Gwen's birthday--a post that I had already written, in my head, many times over the month, a post to document how incredibly proud and thankful I am of my resilient and joy-filled child.

But my battered, bruised spirit required some rest. Emily, Becca, Nicole, Melissa, Madeline, and Allistaire...daughters who have died, a daughter now dying. I am silenced by the searing white pain of these words. It is a day to celebrate the life of my child, of five breath-taking and messy years with my girl. And, yet, my friend is biding the time, urging it to move ever so slowly, as she awaits the handing over of her daughter to a place she cannot immediately follow.  This day, though a good day, has been a heavy one. It is hard to carry such sorrow even while traversing some of the most beautiful moments in life. This is the mom Gwen has today. Sometimes I wonder if it is enough. I question how this time in our lives will affect Gwen in the future. We know what is to come for Ava: learning disabilities, infertility, stunted growth, delayed puberty, possible baldness, forever dry and cracked skin, and possible malignancies that may claim her in the prime of her life.

But, Gwen, what about her? She was two years old when Ava was diagnosed with cancer. Fifty-one days later, with a small, muted party, she turned three. There she was a small, bright, wild flower still blooming amidst the gray all around. Most of my memories from the first week of diagnosis are a blur but I will never forget the day Gwen came to visit us at Lurie's. It had been several days since we had last seen her. She went from sleeping in small quarters, snuggled up near sister and mama and daddy, to being alone at night. My mom brought her to Ava's hospital room and I took one look at her and wept. She was wearing pants too short for her little legs, her eczema was out of control, and her nose was full of small hard boogers, all evidence that she needed me and I was not there for her.

Over the last few years of Ava going in and out of treatment, hair falling out and growing in again, time measured by procedures and relapses, somehow Gwen has continued to thrive through the dry and cracked soil of this season in life. She is bright and wonderful, emotional and raw. She reaches up during Sunday worship, eyes searching mine. If there are tears, she quickly wipes them with her baby hands, softly poking into my eyes to see if there is more. At home she has learned to tuck away into her imagination and play by herself when sister is at the hospital and there is no one left to play with. She still races to be first and to win and struggles with her desire to get more than she gives. But when it is required, when she sees that it means so much to sister, she will concede it all for the sake of a smile. She will squish her face into brother's and kiss and kiss until he screams. "HE'S SO CUTE!" she will cry out as an excuse when we've reprimanded her for being too rough. 

There are days when she must feel neglected. Our attention is turned toward sister who is very, very sick. Our arms are busy holding baby who is very, very needy. "Hold me," she cries. And we cry with her because it is hard to be in the middle. We are exhausted and stretched so sometimes the healthiest child comes last. We know she must suffer so much in that quick and smart mind of hers. Her thoughts must constantly churn trying to make sense of this world and of her life before and after cancer. But we long for her to know that her life means so much to us. It is hope that there is goodness still left after desolation. It is truth that God does not make mistakes. It is faith that love will not be crushed under circumstances but that it will flourish despite it all.

Gwen, You will read this blog one day. And you may wonder what part you played in our story. I want you to know that although your name was not plastered all over these pages, you were a central character. You held such an important role.  Your joy was the glue that bound us; your smile was the reason we got up day in and day out. Your new words, new creations, new discoveries were what marked the years for us. Life was worth living because your spark ignited in us the desire to go the distance even though the race was fraught with thistles and thorns.  

I want to wish you a very happy belated birthday, my girl! You turned 5 yesterday. How is it possible that another year of life has come and gone with such sweet kids by our side?

A recent conversation had Ava wishing she didn't have cancer, just like you. You turned around and said you wished you were Ava instead.

"Oh, Gwen, you should never wish to have cancer," I said, thinking that you were coveting the attention that Ava receives.

After a short, confused pause you replied, "No Mama. I wish I was Ava so that she won't have the cancer and I could take it instead."

My heart is humbled that instead of building up bitterness that much of your life has been shrouded by Ava's cancer, you have learned deep compassion allowing love to heal over so much brokenness.

Happy birthday to you, my youngest daughter. Your middle name is Day. Your Korean name means One Star. And that you are, a lone star shining through the despair, leading us into the break of day.
‪#‎happybirthdaysweetone‬ ‪#‎themedicineforourhearts‬ ‪#‎mygirlgwen‬

Gwen is Three! 
Celebrating Fifty-one days after Ava's diagnosis.

Gwen is Four! 
"Last year, we celebrated Gwen's birthday in the midst of Ava's diagnosis and this year it is shrouded again in Ava's illness. But this girl, she smiles. Boy, does she smile bright and it shines a light into the darkest tunnels of pain and grief. So we continue to celebrate life because what is living if we don't revel in the small things like love, laughter, parties, and Hello Kitty."

Gwen is Five!
A belated wish for the sweetest girl. It is another year of fighting for Ava's life. Yet, she takes it all in stride and prays that "Ava's line would be removed and cancer be gone forever." Amen and Amen. God, thank you for my girl, Gwen.

1 comment:

Anonymous said...

Today (already past midnight) it's David's birthday. Esther, you know how much pain I feel when I read your words, dear Esther, how can we help comfort you and help Ava and your family. These days I keep thinking of Ava as David is finishing up treatment. I pray deeply for Ava. Ping