21 September 2011

hoping for a miracle

i'm wishing for a miracle tonight.

another woman with cystinosis is pregnant (this is a miraculous occurrence in and of itself! what a marvelous world we live in!), is in the hospital tonight with preeclampsia; severe high blood pressure and protein in the urine. she is not yet 26 weeks. unfortunately, women with kidney transplants are more at risk for this complication in pregnancy. my team of doctors thought it was a given it would happen during my pregnancy with sookie.

my heart is aching, breaking, twisted and torn. amelia is to be the 7th woman in the world with cystinosis to have a baby. (that we in the community are aware of...) i have been thrilled to have her join me in this elite little club. our small group going through all of this pain associated with this disease; we absolutely needs these tiny soldiers to carry our hope and push us forward to better days. she is such a brave woman entering unknown territory. if you pray, could you pray for her, her baby girl, and her husband? if you believe in vibes, thoughts, wishes, could you send them their way? whatever is good, light, and full of love, could you broadcast it out their way in oklahoma? this woman has been through hell and back, fighting to stay alive, enduring a kidney transplant, and now this. it isn't fair. it just isn't fair.

i will be brutally honest; this was one of my biggest fears during my pregnancy. i have been feeling pangs of guilt today that i was able to carry little miss S for so long. it truly baffles my heart. i looked at sookie today and asked her, "how did you make it to 38 weeks? how did you do it?"

praying (in my own way)
for a miracle tonight.
will you join me please? in whatever avenue you feel comfortable. 

you are all incredible. thank you from the bottom of my heart for your support.

linking up to:


  1. Sending prayers up for this family, my thoughts are going to them through this time right now!

  2. Prayers for
    Amelia and her family. I have never heard of this before. How scary. So glad that you are a success and your baby. Let's hope she wil be as well. Some take for granted having a baby but they are all such miracles. I truly believe that. (((((HUGS))))

  3. Will definitely pray!
    Keep us posted, please.

  4. Prayers are so strong and I will keep you and that family in my prayers!

  5. I couldn't even imagine. sending Lots of Prayers and positive thoughts their way.

  6. Dearest Tahnie,

    These things are so totally out of our control, aren't they? Only God is able. I shall pray continually as I go about my day. And the days ahead. God bless you and your friend, Amelia!

  7. I cannot even imagine how scary this would be. I love the way you say Praying (in my own way). I kind of needed to hear that. :)

  8. Thank you for letting us know about them. You are an inspiration. Will have that family in my prayers.

  9. Praying for her in Jesus' name. And thank you for sharing this!

  10. Praying for her and her baby. 26 weeks is doable. She can do it. They can do it. God works miracles. Pray for every minute, but as each minute passes... is one more minute "inside." I had my twins 2 months premature, and they are perfect - in God's eyes. My son also has a rare chromosomal disorder... he is perfect.. according to God's plan. I pray that she has peace with her miracle.

    From one rare mommy to another. Love your blog. Kristen @www.alittlesomethingforme.com

  11. wow, praying. we are so blessed.
    Through God, all things are possible.

  12. Just reading this today and sending up a prayer. Any update on how Amelia and baby are doing?