Hey friends, having a tough stretch with the munchkin.
She's not growing.
There are some significant concerns with her bones.
Because of what's happening with her bones, there are concerns for her brain.
She's still throwing up almost daily.
And we are stuck in this place where it doesn't seem particularly hope-full.
When I sit back and look at the big picture of Chaia's prognosis...when I look at all the things working against her...the calcifications...the heart failure...the GI issues...the neurological issues...the bone issues...and it's not good. The reality is she's a long shot.
The big picture isn't the whole picture though. We have a God who has orchestrated this child to be fearfully and wonderfully made...with genetic mutations that cause calcium to collect and eye lashes to grow abnormally long.
This same God put us on a path to the Cleveland Clinic (closing doors at 3 other hospitals in a five day stretch) where a geneticist there just happened to have read about the disease Chaia has and was able to diagnose her in the 11th hour.
This same God has used Chaia's story to take others to deeper places of faith, for some taking them to church for the first time.
This same God has deepened our faith as a couple and deepened our marriage and love for each other.
This same God raised a little girl and a guy named Lazarus from the dead.
This same God took our sins to a cross and redeemed the worst in us with the best of Him.
The tension we are stuck in with Chaia's prognosis is the heaviness of the reality that Chaia is not well and the reality that resurrection has been God's habit for millennia.
These two realities are on a collision course. And whether that resurrection means complete and total healing or means Chaia is released from suffering and discomfort and gets to go home, our prayer remains unchanging.
Jesus, have your glory.
We need your prayers and encouragement this week. Sometimes the hard/bad report makes it hard to remember who He is and what He's done. Forgetfulness may be humanity's greatest sin.
13 comments:
God has great things planned for you and Chaia! You are destined for greatness!
We will keep you in our prayers.
We are praying for all of you!
Ben and Shaina, You are always in my thoughts and prayers. This new report is discouraging, but you two are the bravest parents I have ever known. Continue to take each day with Chaia as a promise from God, as a good day. God's will be done...for all of you. In Christian love,
Anne Fischer
Count on it, Ben. You have so many praying with you, including us. Love you guys -
Karrie (&Aaron)
My heart is heavy, yet my spirit strong after reading this post. Our God is greater than any of Chaia's symptoms. I will continue to speak LIFE over this little one. I will continue to pray that God will receive Glory in all of this. It's time for God to show up and on the scene of this drama we call life. Trusting God that Chaia will always bring Joy to your hearts and never be a burden you can no longer bear. She is fearfully and wonderfully made!! And we thank Jesus for her life and what it means to all of us. Sensing a shift in the Spirit. God will be glorified!!!! Sending our hugs and lots of love. Do not hesitate to call on me for urgent requests. Love you guys more than you know!!!
We will keep you and your family in our thoughts and prayers. Praises for our God.
Blessings,
The Taylors
Shaina and Ben, This is 'Aunt' Tammy in Missouri. I want you to know that you all are in my heart! I have followed Chaia's story since I first found out about her- shortly after you discovered her condition. Your cousin, Daniel Brandt has 2 boys who are now 7 & 11. Everytime they come to visit they ask about Chaia and make me get online and show them the blogsite. Hayze (11)and Lakota (7), care about her and are praying also!
This story is such a reflection of you and your husband's love- and understanding of God. It is a testimony of Ben's commitment. I am ENCOURAGED and strengthened and challenged EVERYTIME I read this blog. I am praying and CHEERING you two on!! I pray that the God of all peace will continue to comfort and teach you through this time and the life of your precious baby!!
Praying for Chaia and for both of you! Our son is the same age as Chaia and it's hard for us to imagine going through what you have faces.
Thank you for sharing this. I am praying for you guys. Thank you for honoring God with your story. I am sure there are days when that is really hard. Love you guys!
My prayers for this beautiful baby girl. You have been a true blessing to us for sharing your daughter with everyone. God IS in control and in charge of every situation. We love you,Ben and Chaia. Continue to keep the faith.. Love, Susan
Praying for Chaia as well as you and Shaina.
Becky Grosss
Thinking of and praying for you all this week :)
AS
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