Sunday, March 9, 2014

From the heart of a mother

I've been struggling for the past night for words to write to adequately express all that's going on within. These past few days I've been feeling a hope that has been carrying me through. I can't explain it but for the prayers of everyone around the world for Ava. Yet, there are moments of such incredible weakness that my knees buckle and I find myself facedown on the floor begging for a miracle. 

People have said that I am so strong and so brave and so respectable. But, really, I am not. I am weak and I am scared. Nights are the hardest as I think about the unimaginable happening. Life without Ava seems absent of joy. It seems wrong and cruel and unthinkable. Then I feel guilty. How could I be saying these things when I have another beautiful daughter who would depend on me to be strong and to carry on for her sake? I'm afraid of the crumbling that will happen when our foundation is shaken by death.  

Please pray for us. Now more than ever we need your prayers. Ava's doctors continue to be confounded by the possible connection between her allergies and leukemia. We have all sorts of doctors coming in and saying the same thing over and over again. How incredibly rare this is. How incredibly unfortunate. How incredibly little data we have on children with this type of disease. One doctor was so interested in her case that he continued to talk about her like she was a specimen that needed to be study. He was fascinated by the possible connection and I felt like throwing up. 

I wanted to shake an emotion into him. Because, you see, as much as she is just another kid with cancer, she is invaluable to us.  I carried her in my womb for 9 months, close to my heart. I nursed her all through the night. I watched her sleep and held my breath and cried at how fast she had already grown at one month. I cherished every smile, every laugh, every step. I had every irrational fear known to man about how she might be electrocuted by the hair dryer, how she might fall from the balcony of our 3rd floor condo, how she might be kidnapped and fed peanuts until she burst. My heart ached for every heart break she would experience in the future and joy flowed from the anticipation of watching her grow up, reach new heights,  fall in love, walk down the aisle and have her own beautiful babies to love one day. She is my heart, vulnerably living outside of my body. 

She looks for me in every situation, carefully seeking out my attention and my gaze. She writes my name all over her masterpieces and calls out my name again and again. "Look, Mama, look at me, " is her response to anything that she's discovered. She waits for my approval and gives me hers. "I love you, Mama" is tattooed all over her notebook and she looks at me with deep compassion when I am sad. She is on my side through every fight whether I'm right or wrong. She looks for me in the night and whispers my name in her sleep. She is my best friend, the only one on earth who thinks I can do no wrong. She loves me and I love her. I can't lose her.

And, yet, this is really happening. How could we be admitted for a skin infection and walk out with this horrible and unimaginable diagnosis? This is where my faith is challenged to be real. We have a long road ahead, not only with treatments but with emotional ups and downs when we encounter victories and setbacks. We steel our hearts and make them ready for gut wrenching words and yet we store up hope in God who holds all of our lives in his hands.

Yesterday, was tough as I looked over the past few months of Facebook posts and was harshly reminded of how hard these past few months were on my girls. Why didn't I play with them more? Why didn't I notice the little bumps on her legs when she told me about them? Ava had mentioned them to me one morning while I was headed out to work. She talked about bug bites she was getting and we wondered together what they were. But we both shrugged it off as another one of her many skin irritations. She had also complained of bone/joint pain but we thought it was growing pains. I think back to all the months she patiently suffered through the symptoms of Leukemia while we all stood by without a clue. This tremendous amount of guilt is so heavy that I want to curl up and die under them. So I continue to meditate on truths that will hopefully push away those lies.  

Please take this cup from me, God. I'm not strong enough. I don't want her to die. I won't be okay. 

This is me at the bottom of the pit. Please pray for us, please pray for me that I would remain the fortress she needs me to be, that I would save the self-pity for times when her eyes are closed, and that my heart would continually be infused with hope and peace and joy.

"Help me, Mama," she often cries out when she is in pain.  I stand helpless at her side not knowing how to take her pain away so I cry out, "Help us, Father. Help me, God."

Psalm 20
Dear Ava,

In times of trouble, may the Lord answer your cry.
    May the name of the God of Jacob keep you safe from all harm.
May he send you help from his sanctuary
    and strengthen you from Jerusalem.[a]
May he remember all your gifts
    and look favorably on your burnt offerings. Interlude
May he grant your heart’s desires
    and make all your plans succeed.
May we shout for joy when we hear of your victory
    and raise a victory banner in the name of our God.
May the Lord answer all your prayers.
Now I know that the Lord rescues his anointed king.
    He will answer him from his holy heaven
    and rescue him by his great power.
Some nations boast of their chariots and horses,
    but we boast in the name of the Lord our God.
Those nations will fall down and collapse,
    but we will rise up and stand firm.
Give victory to our king, O Lord!
    Answer our cry for help.


Anonymous said...

Oh my goodness! I just had tears running down my checks reading your update. I can't even begin to understand what you are going through. I truly pray that our Heavenly Father heals your precious child. I know that nothing is impossible for Him!! Will continue to pray for Ava and your entire family! Carmen Kim

cindy kang said...

I've been singing this song over and over again in my head and I'm always reminded of your family. My prayer is that you, Mike, Ava, Gwen, and your families will remember during difficult moments that God is your refuge and strength. Cling to Him, run to Him, Esther... Thank you for sharing and constantly being vulnerable. I'm so sorry to hear how inconsiderate the doctors are being. May God guide your doctors and give them wisdom (and compassion) as they continuously review Ava's case.

My foes are many, they rise against me
But I will hold my ground
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Troubles surround me, chaos abounding
My soul will rest in You
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
From You Lord, from You Lord

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Oh, my God, He will not delay
My refuge and strength always, always

Saras said...

Tears with you all. So beautifully written and yet I'm sure it doesn't even capture all you're feeling, thinking, hoping. Sending you huge hugs and prayers for today, tomorrow and the next.

Heather Rocen said...

Love You Esther Lee. Love conquers all.

David said...

Esther, please don't think you are strong or not. You are the protector of Ava. When you don't like what the other doctors coming to bother, please firmly and politely ask them to leave and tell them you don't want them to tell why and how Ava gets sick but only to treat Ava. Actually no one knows, if they know why they would get Nobel prize.


David Daddy

ces said...

Dear Esther and Mike, prayers from Ohio have continued daily, prayers especially that He would hold each of you close in His hands and you would know. I heard this song on the radio tonight and hope it will bless you this evening. (sorry, there's an ad at the beginning)

Arms That Hold the Universe, by Fee

Eunmi said...

Esther, thank you for sharing your heart w us. So many are thinking of and praying for Ava and your family every day, I am one of them. I thought of you all when I recent heard this song.

Hyung and Jane Ro said...

Esther and Mike - We've been praying for Ava and the rest of you since we heard. After many nights of praying for Ava, our older son Isaiah asked if he could see a picture of her so he knows who he's praying for. She has people young and old lifting up every request that you ask. Reading and praying every night.

"Great is our Lord and mighty in power" - Psalm 147:5

Uab Ford said...

We've been thinking of and praying for Ava and the rest of you since we heard. God brings Ava to my heart and my mind many time a day and everyday. She is surely in God's powerful and loving hands. I haven't met Ava and Gwen but from Facebook posts, they have been my favorite for a long time. Love and prayers, Uab

Anonymous said...

Ava and your family will be in my prayers and thoughts. May her body be strong to fight back the illness, May God completely heal her.