Blog Archive

Saturday, April 28, 2012

We don't know how long our sweet Ava Bean will be with us. This has always been true, but we have never known so clearly that every day and every moment we have is a gift. In the past week, Ava turned 11 months old. She has lost the ability to eat by mouth and her brain is having more and more difficulty telling her body to breathe.  Many times a day she needs us to rub and stimulate her because she's starting to turn blue from the lack of oxygen.  She hasn't opened her eyes for more than a fleeting moment since Matt arrived home on Friday.

These are the signs of Alexander's Disease--too many astrocytes, cells filling up her brain, robbing our little one of her most basic abilities. Because Ava's disease is so rare, there is no path laid out for us. There is no one with whom we can compare stories or to whom we can look for more information.

Ava's hope is in the Lord alone.

We continue to pray that God would heal her in a way that would bring Him the most glory. It appears that He is taking her home.  A few nights ago, Ruby said, "Maybe when Ava gets to heaven, and God makes her whole, He can send her back to us." That sounds like a wonderful idea to me.

While we wait and hope and grieve, we are living on the razor's edge -- listening for her every breath and wondering if it will be her last, while willing ourselves to keep living life, caring for our girls and ourselves.  Our hearts are breaking over and over again and yet she could hang on for hours or days or weeks.

We don't know how to do this.

We don't want to do this.

We ask every day that God would let this cup pass. We plead, we bargain, we beg. Then we eat the bread of truth that His will is perfect, His ways are good and He loves her more than we do.

Pray for us.

Pray for Ava.

18 comments:

Becky: said...

Oh, Sara!
I have been praying and will continue. Your little Ava bean is more perfect than she is sick. I don't know her and I love, love, love her!! My heart hurts for you that there are so many unknowns, but know that so many are loving you and lifting you up. You are not alone.
Wrapping you in love - Becky & the Ortyls

martha said...

Sara my heart is breaking for your family. I will be praying for you these coming days. I really don't have any perfect words to say except that God is with you through all this.
Martha

Jerseymomma said...

Praying for you, sweet sister and brother in Christ. I wish I could help but we are here if you need anything. Love, Rena

Anonymous said...

We are still praying for Ava!!!

danielle said...

Lifting up your family to the Lord! Your Ava is beautiful! may every moment you have with her be so precious. Hugs from a sister in the Lord, praying for healing!

Amy said...

Dear friends...I am holding you up to the Father, praying for Ava and each of you, that He would hold each of you tenderly and close, and that His mercies, His peace, His grace would be tangibly yours moment by moment. Thank you for sharing with us how you are walking out these precious days within your family. It is a privilege and an encouragement to hold you up in prayer...much, much love and prayers your way...

Anonymous said...

My heart aches for your family. Though we have never met, I see so clearly the love you all have. You have given Ava a beautiful life here on earth, just as God wishes. He could ask nothing more of you - you have clearly given her so much love. Yes, He loves her dearly, and will welcome her with the same love you have given her. I pray for your family that you can find peace in letting Him bring her the eternal happiness of heaven.

Sue @ Laundry for Six said...

I'm sending so many prayers for your sweet little Ava and for your whole family on this hard, heart-breaking journey.

The Piechocinski Family said...

I have so much I want to say, yet don't really know how to say it, so instead I just pray that God give you everything you need during this time and take comfort in the fact that so many are sharing your burden and lifting your family up. We love Ava, and your sweet family.

Karien said...

You are in my thoughts, and on my heart all day Sara, I am praying for you, and sweet Ava.

ericbrown2 said...

My wife and I will be praying for you guys.

Sara said...

Thank you all for your heartfelt words, thoughts and prayers. It means so much to us to hear from you and to know we are being carried along by your prayers. Ava has drawn so many wonderful people into our lives, and we are truly thankful.

fearGD said...

hugs and love .... praying always... pouring my heart out for you all..

Liesa said...

Praying for Peace in your Hearts and strength for today. Liesa

Maria W said...

Praying for strength, rest for your weary souls, and that the Lords love be a salve for your wreaked mama's heart.

Anonymous said...

May your pain be divided as you and your family live each day. Although we do not know one another we share a friend. We have a prayer chain started and will continue to ask for the LORD to hold you all in his graces.

Anonymous said...

continuing to hold your family in prayer. may peace pour down in showers and comfort surround you like the clouds.

Anonymous said...

We are lifting your sweet family up, Sara. There are so many times throughout the day when a song comes on and the lyrics put you on my heart. The kids and I are praying daily for you, matt & your beautiful girls.
All our love, Julie (and the haworth family)