Thursday, October 20, 2011

Dearest Chaia

Little Bean, I don't know what is going on in those big blue eyes of yours. You've been through the ringer in your first few months of life and your mom and I are sorry we can't make it better. We are sorry we can't pick you up. We are sorry that you can't even cry to let us know how sad you are.

Your doctors don't hold out a whole lot of hope for you. They say that the combination of your disease and the damage to your heart is probably too much for you to overcome. They say there's a chance you won't be able to wean off the ventilator. They say even if your respiratory system works without the vent, that theres a chance your heart won't be able to sustain your respiratory system. They say that even if your heart and lungs work well, theres a chance you won't ever wean off the milrinone iv. They say even if you wean off that, there's a chance that your heart will eventually give out when you grow an extra inch or gain an extra pound. They say that the calcification that has gotten you into this mess in the first place may or may not be reversible. They also say that if you survive all that, that the scarring in your heart could shrink in comparison to the rest of your fleshy vital heart and you could be an exception to the norm...an abnormality...a miracle.

Your mom and I love you so much. And what the doctors don't realize is that we pray to the God who has a track record of causing death to die. So we will pray for the vent...your heart and lungs...for the milrinone...for your growth and development...for the calcification to disappear...and for you to be on their abnormal list.

Because you're a warrior. And your God is faithful and has conquered the grave. Here's your theme songs for the week.



9 comments:

Jann said...

Oh Ben and Shaina- What a wonderful letter to little Chaia-
she will treasure all the things you have done for her and all your prayers for her- God is ever present in her life and yours! May God Bless Chaia and you!!

lawrence said...

this is a very hard road to be traveling Ben and Shaina, but Jesus will be with you on this journey.
Love your South African family

Anonymous said...

That sweet little girl will never doubt how much her parents love her. You are always in our prayers!

Courtney said...

I'm not certain why your blog is entitled "mustard revolution" but I'm assuming it has to with having the faith of a mustard seed...I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."

Anonymous said...

What a great letter to your sweet baby girl! She has two very GREAT parents and many hundreds more praying for and thinking of her every day. And what an awesome abnormality of a miracle she is going to be :) She is a warrior, and God is faithful. Prayers for you all!!!

Gramma2u2 said...

My prayers continue. Chaia has shown she is a fighter. The letter touched my heart for you all and our prayer warriors are all still praying. Holding onto faith in a miracle.

Mizzle said...

Gungor is my favorite. The Thompson's are my favorite. God is good all the time

Anonymous said...

We are still praying for you and sweet baby Chaia at Akron Children's. Your strength for your baby girl is amazing!!!!
Kerri Clark, RN PICU

Heather said...

This is probably weird and I know you don't know me but you know my sister Kim and she had pictures of your daughter and I'm so sorry for what you guys are going through. I will make sure I pray for your little precious girl and you guys of course. You guys seem really strong and that's good for her. Hang in there and I know God is looking after you guys.