There is no turning off this racing mind of mine.
When we were at home with Ruby, there were times when things felt "normal" and I would forget for a while.
But, those moments have pretty much vanished.
Ruby waits. She waits and waits. She is such a little fighter. Her score has just been creeping up over the week, but no calls yet. I am starting to get anxious. Each time my phone rings from an unknown number, or a member of her teams comes through the door, my heart skips a beat. We pray for the day she can get her new liver, but we are scared out of our minds at the same time.
Many children we have met, have illnesses that are not as curable as Ruby's. I almost feel guilty at times thinking that one day we will have our life back, and more importantly that one day Ruby will have her health back. That is just not a reality for some of these kids. At least there is a cure for her, as scare as it might be.
I find myself thinking about her donor all the time. Somewhere out there, someone is going to give Ruby the gift of life. How can I ever repay this family? I have been praying for them. I don't know who they are. I don't know when we will meet. I don't know how they will come to the decision in their grief, but they are going to be the most important people in our lives. Our heros. Ruby's hero!
One of her doctor's just came in and told me that they have started getting calls for possible deseasded donor livers for Ruby, but none of them have been good offers yet. Thankfully, several people have stepped up, and would like to be tested to see if they can be a living match for Ruby. Our doctors would like to have that as a back up plan right now, just to be save.
When we were at home with Ruby, there were times when things felt "normal" and I would forget for a while.
But, those moments have pretty much vanished.
Ruby waits. She waits and waits. She is such a little fighter. Her score has just been creeping up over the week, but no calls yet. I am starting to get anxious. Each time my phone rings from an unknown number, or a member of her teams comes through the door, my heart skips a beat. We pray for the day she can get her new liver, but we are scared out of our minds at the same time.
Many children we have met, have illnesses that are not as curable as Ruby's. I almost feel guilty at times thinking that one day we will have our life back, and more importantly that one day Ruby will have her health back. That is just not a reality for some of these kids. At least there is a cure for her, as scare as it might be.
I find myself thinking about her donor all the time. Somewhere out there, someone is going to give Ruby the gift of life. How can I ever repay this family? I have been praying for them. I don't know who they are. I don't know when we will meet. I don't know how they will come to the decision in their grief, but they are going to be the most important people in our lives. Our heros. Ruby's hero!
One of her doctor's just came in and told me that they have started getting calls for possible deseasded donor livers for Ruby, but none of them have been good offers yet. Thankfully, several people have stepped up, and would like to be tested to see if they can be a living match for Ruby. Our doctors would like to have that as a back up plan right now, just to be save.
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7 comments:
Prayers from Connecticut coming your way... hoping you get that good news sooner than immediately ~
Ani, I know we're not close, and in fact only know each other from a few months spent together in Hawaii, but each time I read your blog my heart aches for you and your family. I can't even begin to imagine what you are going through, but I hope it is all over soon and your little Ruby Jane gets exactly what she deserves. My husband and I have been praying for you and your family. I hope your life becomes "normalized" soon. You're faith and strength through all of this amazes me.
praying extra hard for you guys.
xoxo
I don't know you, but I came across your blog through the Just Cook Already blog. And now I wish I lived in California because I would be a donor! I have a little 3 month old girl and can only imagine your angst. I am so touched by cute little Ruby's story and struggle and spirit! I wish babies didn't have to suffer. :( I'll pray for your family-- and that a donor will be found soon! btw, why is a living donor a back-up plan? That seems much more desirable than waiting till she gets worse...
Ani- I can only imagine the anxiety that comes with your situation. All of the ups and downs. You are such a good mommy to your two girls. It is such a weird thing that in order for her to live, someone else must die. We are lucky that we know our Heavenly Father has a plan for each of us. That's what gets us through. As hard as life is!! I am grateful to know your family and see your strength. We are praying that soon you get "the call"!! Lots of love!!!
I am keeping an eye on your blog from Habitat for Insanity and Sandi! I can't say that I know what you're going through because I don't. What I can say is that I'm praying for you and Ruby and your husband and Kate!! I pray that Ruby gets a match and her body accepts it and she gets to be her cute little self with no worries, no pain, no tears. My heart aches for her, for you all. I give blood, plasma and I'm on the list to be a match for someone for bone marrow, but I've never gotten the call. I wish I lived closer, but Kansas seems so far away right now, I would totally be willing to be a living donor for your sweet little girl! I have three children of my own and I am thankful they have all been blessed as healthy children. But I know that that can all change in the blink of an eye! God Bless your family and your fight!!! We're praying hard for Ruby in Kansas!!!
Love you both so much- it hurts. Not a second goes by, that Ruby is not in my heart and on my mind. XO
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