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Going Global

Can you believe it, but there are others, many of them who are in the same boat as we are? And I have found them all on facebook. Amazing! Wondrous and tragic. I have read other blogs, looked at other pictures of children who are all ages, from angelic babies, to sweet and heartbreaking children and teenagers. I have become convinced that their parents are infinitely more wise, with larger hearts, and more courage then the average person. I guess it all comes with the territory!
Here is a stat from the blog of a fellow hydran mum: "There are approximately 490,000 babies born every day worldwide. Hydranencephaly affects 1 in every 10,000 births... that is 49 babies born each and every day to families who are given little to no hope from doctors in perspective to prognosis and quality of life." 49!! (That's either a lot or not very much at all, depending on how you look at it.) 49 mothers and fathers every day sit in shock in cold exam rooms, listening to the doctors, and instead of hearing their words, all they hear is "Welcome to hell," over and over and over. 49 babies who either get to be loved by their parents, or given up and loved by someone else, or 49 babies abandoned under trees and on doorsteps. 49 babies who come into this world only to die. And 49 babies who come into this world only to save the people around them. And this past week, getting to know all these other kids and the people who love them so desperately, or who have loved and still keep their children alive in their hearts, I am humbled. How dare I say that we are in hell? Well perhaps facebook could be a form of a weird and wacky techno hell, but thank God that in it's bowels, I am in good company.

A quick update: This past weekend Leo hit two months old! He is doing great, getting stronger, and tracking with his eyes. The fluid is draining nicely and his head is getting smaller, though with the price of making him look like the offspring of a Klingon from Star Trek. Although WE think he is getting cuter everyday. I'm sure the Klingons would agree! Here are a couple pics from our daily routines.
 Nika showing him ABCs on the iphone.
 Hanging out in the warmest spot in the house...
 And hanging out with the Apostles while I try to get some work done...finally! I have been really falling behind and apologize to all those on my waiting list.

Leo in his brand new carrier! Now I really don't have an excuse not to work....


  1. Kh Kelleylynn BarbergOctober 26, 2010 at 9:12 PM

    Thank you for allowing us to enter your world, your struggle, your hell and back. Loving you all and your cute (yes, cute!) Leo.
    The images of Leo with your Holy work is heavenly. Keep fighting this Good and Holy fight.

  2. Wow, Leo has so much hair! He looks so nice and cozy by the fire place. I'm glad you are able to work. Looks like you have a lot to keep you busy. Thinking of you all.

  3. Oh my I love those pictures! So beautiful!


  4. I can't quit turning this over and over: "And 49 babies who come into this world only to save the people around them." whew...

    Thank you for that completely necessary punch in the gut. I'm an adoptive mom, working through my own trials with the rest of this family as we work on what loving each other actually is supposed to be... Days can be hard because each one of us brings so much sin & self-focus to the table. The fire that started a deeper level of the dross-burning that is so needed came with the adoption. And not the child, but the transitioning. And praise God for that!

    And praise God that I was reminded of that through your words.

    Your Leo is just beautiful, such an incredible gift from the Giver of all good things. Thank you for the transparency you offer that teaches me so much.

  5. Leo's face in the first photo is priceless. "Look, sis, they're doing it again!"

  6. I also have read some blogs of parents who have children like Leo-what a humbling experience!These parents are our modern day heroes.You guys are in amazing company,and have joined their ranks more than valiently!Happy to hear that Leo is doing so well and life has more or less normalized.
    Anna,please tell me your secret, when do you have time to take care of a toddler a special needs child and paint icons?Most days I am lucky enough to have a peaceful moment alone in the bathroom without major catastrophies and interruptions.And by the time the kids are in bed I am squeezed out like a lemon and good for absolutely nothinghing-it must be the age.Anna you are a superwoman!Love to all.

  7. Happy 2 month birthday, Leo! Wish I could be there to make Star Trek cupcakes for you! Instead, you'll have to make do with my continued love and prayers for you and your family.

  8. Sending best wishes and prayers to you from across the Pond ! (I live in South Wales, UK !)

  9. Continuing love from Lee and Bo.

  10. he sure looks comfy in his new "I'm w/Mom gear".


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