Gwen Grieving

"And He will wipe away every tear from their eyes; and there will no longer be any death;there will no longer be any mourning, or crying, or pain; the first things have passed away.” Revelation 21:4

First of all, we have to thank you for the support and love you have shown us. Nights are usually filled with the most tears not because of the fears that infiltrate my thoughts during these dark hours, but because that is when I read and soak in all of the love that is poured out from you. I am moved deep within and will never be able to repay you for the kindness you have shown my family. Please know that we are treasuring these things in our hearts and they will be a source of great comfort for many many months to come.

Thank you for your continued prayers for Ava! Today was a good day for her. She overcame much of her back pain through exercises and a positive attitude. It's so hard to see her go through the pain when it is present, but I am proud of the way she fights through it. We have been talking about the importance of fighting and she often tells me that she is. Of course there are hard moments, like when she threw up all of the food she ate today but overall she has been able to get up and enjoy life. We are beyond thankful for her smiles and her small attempts at trying to overcome.

It was a much more difficult day for Gwen. She has been playing well with all of the WONDERFUL friends and family that have been caring for her this past week. However, I think that today was the breaking point for her. When I came down to see how she was doing, she would not let me go. Gwen usually isn't clingy but she clung to my legs and cried her eyes out. Eventually, I joined her and we had a sob fest right in the middle of the Sky Garden at Lurie's. After all of our crying, she said, "Mama, I'm sorry that I cried." If only Gwen knew just how strong she really is. She has been without us for the past 10 days and has been wearing a smile all this time. Many would say this is because she is a baby and doesn't know what's going on but I know that she is significantly affected by Ava's absence in her life. It has been heartbreaking to see this robust and abnormally confident girl, become more and more insecure and fearful of what the day brings. Now I see how Gwen is going through her own ways of grieving for her sister and I am motivated to pray for her well-being as all of our attention has been turned to Ava. Thank you to all my lovely friends and family that have sacrificed their time to make the trek to Chicago to play with her.

Today, we had the great privilege of having Gwen visit with Ava. Usually this is a big no-no but God must have known just how much we were grieving the disconnect of our family unit. When Ava and Gwen saw each other, they were so happy. After playing for some time, Ava began to have back pain and cried out in anguish. Gwen howled in misery as she saw her sister writhing in pain. She began to scream and wail and her eyes reflected such compassion and love for Ava, who was once her best playmate and biggest defender. I don't know how the human heart is able to endure such incredible heights of emotions but today my heart shattered again and again.

"The LORD is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34:18

I eventually took Gwen back to the Ronald McDonald house so that Ava could rest. Also I have been coughing lately and I wanted to make sure I got some rest so that I wouldn't get sick. When we got back to the room, Gwen was so moody and began to cry and scream. In my frustration, I lost it and we both cried and screamed and fought out our sadness and our grief. We ended up falling asleep, curled up together and had a good nap together. She needed me to be near her today and I needed the same. I'm praying that Leukemia does not win in any aspect of our lives. We pray that Gwen would not feel neglected or alone but that we would remember that she is feeling all of the emotions that come with losing a best friend.

When I got back to the room, Ava and I laid together and I told her bedtime stories. Barely into my stories, she already fell fast asleep. I thought about all the times she had asked for a bedtime story and, in my rush to send them off to bed, I didn't cherish those times. I have always wanted to live without regrets but I have so many. So so so many. My heart aches at the thought of all my wasted moments, not only for Ava but for all the time I wasted on things that were of so little consequence. I pray for a life change through this journey, that God would give me perspective that I've never had and that I would use that wisdom to live a more fruitful life.

Finally, I want to apologize to anyone that I have missed an opportunity to stand by when you were going through a difficult time. All the times I "intended" to reach out but never did weigh heavy on my heart. I hope for opportunities to carry someone's burden just as you have helped us carry ours.

Mike will be updating more on the medical side of things today but there has been a slight development in Ava's case. The more the allergists/immunologists have conferred on Ava's case, the more perplexing it has become. Her initial five years of life have been filled with unfortunate experiences due to her rare and highly sensitive immune system. Now, we are dealing with another rare diagnosis--a type of Leukemia that is only seen approximately once a year at Lurie's. We pray that the wisdom of all of these doctors working together will unveil a deeper understanding of her diagnosis. 

But, deep down, I wonder if she has been born for such a time as this. A time where people around the world gather and wait and pray for a miracle. We have heard wonderful stories of our friends renewing their faith, praying for the first time in years, and petitioning before God in a collective manner. I hate that Ava's life is in danger but who am I to stand in the way of God's plans. May he receive the highest praise for his infinite wisdom and his merciful ways. 

Please help me if the unthinkable happens. Please hold our family close in your prayers and please continue to draw near to God.

Broken but not crushed,
Esther