Wednesday, February 17, 2016

Update

Ava had a CT scan done of her face yesterday showing 3 soft tissue masses in her cheeks and chin.

Today, she is happily playing, eating fried rice, and watching Netflix. We don't know what tomorrow holds and it hurts like hell to imagine a world without Ava in it. But we have chosen to take things day by day. 

Yesterday, I held Ava down while they poked her 3 times to get a good vein. She struggled for so long, crying out for me to please, please make them stop. When all was said and done, she looked at me and asked me why I would allow them to hurt her like that. She told me she won't struggle anymore because it's useless. We are much bigger and stronger, she says. And with resigned, tearful, eyes she cuddles into me, the same mom who held her arms down while they poked her again and again.

The doctor walked in a few minutes later to tell me that her opinion is the same: Ava should begin treatment immediately. There are no guarantees, she may die in the process, the disease will likely come back. She tells me all this with a straight face but still insists and insists that this is the only way for a chance at survival. But what is life? Is it just breathing and existing, tangled up in a mess of tubes that protrude out of the body that assist the back and forth of chemicals into her blood, damaging her heart, lungs, and organs? Or is it more than that? Is it laughing, and playing, and opening up her eyes like she did the other day to say, "Oh, I feel so good today, Mama!" Is life just your heart thumping rhythmically or is it the joy of stretching out next to your sister anticipating another day of putting your baby brother in a toy crib and running him around the house? 

I told her this with equal fervency. She has one piece of the puzzle where the medical urgency pushes her to give treatment despite any of the negatives. And I hold the other piece, where I see my first born child, now a little girl, asking for one more day to wake up in her bed, in her house, with her family. She is old enough now, at the age of assent. "It's my life," she sometimes reminds us. It's true, it is hers but it is also ours because she has been given to us to love, to protect, and to nurture. There truly are no separate entities here. We are so, so tied up together, five hearts beating in sync. If she dies, a part of us will die too. We are too selfish to give her up so easily. Yet we know, that she will gently guide us. 

We look to you, Lord. Give us the clarity and the fortitude to walk forward without regret. We don't have to say much for you to know that there is actually no way to say it at all. Our souls cry out in deep agony, with moans no words could match. 

And to everyone who faithfully reads our blog searching to know how we are, how you can help: we want to thank you for the tremendous support and prayers. Not a day goes by where we don't feel moments of peace that we believe are a direct result of your sincere prayers for us. Will you continue to pray for a miracle for our girl, Ava?


Ava calling out "ACTION" for our interview with Cal's Angels.

Playing side by side...with Jude's toys. What the heck, girls?


This is their new torture toy for baby brother

Nobody cares that Jude is not having the time of his life

And, another toy that will now be used to torture baby brother

"Save me from these crazy people!!!"

Happy Birthday, Jude. I think he has given up on being happy.

Dressing up for Jude's birthday is, again, not thrilling for him


Happy Birthday, Prince Jude

Eating his cake all chill

It was hard for me to post this picture because I kept judging myself for all the stuff in the background. Don't judge my messy life. 

I love that Ava's half birthday falls on Valentine's Day. We celebrate the love of our family, the life of our daughter, and the hope that we will light candles on her birthday cake in 6 more months.

The aftermath of 3 pokes. Mom-guilt for holding her down. Ava-guilt for kicking and screaming.

Thank you, Uncle Jeremy, for "small, cute things!" It was a happy way to start the day!




5 comments:

MD said...

With every post you make I read with you, with every tear you shed I shed with you and with every prayer you make I make you with. You are a wonderful mom Mrs. Lee I haven't had the honor to meet your family but what I do know as the teacher you were to my children is that the lord is right next to you. I pray for strength and guidance for you and Mike and a miracle for Ava..

Amber Peters said...

All we are judging is all the love you have your children and it is some of the best around! The pictures of Jude are absolutely adorable and it is a baby brother's job to let his doting sisters drag him around ha! So much fun and love!! So proud of Ava for being so brave and for having lots of fight left in her!

Anonymous said...

Ava, you and all your family is in my prayer.

XG said...

I am new to your blog but I've spent read the majority of your posts over the course of the last few weeks. I don't know if you'll have the chance to read this but I want you to know that you're a wonderful mother, your husband a wonderful father, and your kids are full of light and joy and Ava is one smart and mature girl for her age. I am 22 and I've learned so much from her.
I will keep your family in my prayer; hang in there
Sending your family much love from the east coast

Anonymous said...

Don't ever let doctors....educated or not....tell you what is right for Ava. It is up to you, and mostly our God to decide her path.