Ruby's tiny little hands tonightIt is quiet right now. The most quiet it has been all day. I can just barely make out the nurses laughing outside at their station. A steady beeping from the room next door.
I am alone with my thoughts tonight. I can't sleep. I can't turn off my mind. It is racing and racing, a million miles a minute. All day I have been worrying. Thinking of questions, and ideas, and trying to get answers out of doctors.
After grilling her doctor tonight, she said, "She just really needs a new liver." No matter what I ask, no matter how hard they try, in the end, the only cure for her is a new liver. It is starting to really feel real to me. She is developing symptoms quicker and quicker, and the complications are getting more serious. They showed me an x-ray tonight, and her poor little lungs are being pushed up from all the fluid in her belly. She has been breathing very fast this past week, and tiring out quickly.
I tried to pick the doctor's mind about any type of time frame, and she said, "A couple of weeks, maybe a couple of months." I tried very hard to keep my composure until she left the room. I have known she needs a liver transplant for over a month now, but to hear her say that it will be that soon, just makes my heart sink.
They had us watch a video about the surgery last month. One doctor being interviewed said, "Some parents are so shocked when they see their child come out of surgery because they will look dead." This phrase just keeps running and running through my head.
I can't believe my Ruby Jane has to go through this.
I just can't.
How is this fair?
How is this ok?
It's not.
She should be home. She should be home, sound asleep in her crib. Unhooked from all these monitors, and not being bugged every hour. She should be pink, and chubby. She should be happy, and playful. She should be smiley and giggling. She should be a normal healthy little baby. Instead she is facing this huge and painful trail, a fight for her life, and she is only 4 months old.
I can't stand it.
Tonight is a hard night.
I am alone with my thoughts tonight. I can't sleep. I can't turn off my mind. It is racing and racing, a million miles a minute. All day I have been worrying. Thinking of questions, and ideas, and trying to get answers out of doctors.
After grilling her doctor tonight, she said, "She just really needs a new liver." No matter what I ask, no matter how hard they try, in the end, the only cure for her is a new liver. It is starting to really feel real to me. She is developing symptoms quicker and quicker, and the complications are getting more serious. They showed me an x-ray tonight, and her poor little lungs are being pushed up from all the fluid in her belly. She has been breathing very fast this past week, and tiring out quickly.
I tried to pick the doctor's mind about any type of time frame, and she said, "A couple of weeks, maybe a couple of months." I tried very hard to keep my composure until she left the room. I have known she needs a liver transplant for over a month now, but to hear her say that it will be that soon, just makes my heart sink.
They had us watch a video about the surgery last month. One doctor being interviewed said, "Some parents are so shocked when they see their child come out of surgery because they will look dead." This phrase just keeps running and running through my head.
I can't believe my Ruby Jane has to go through this.
I just can't.
How is this fair?
How is this ok?
It's not.
She should be home. She should be home, sound asleep in her crib. Unhooked from all these monitors, and not being bugged every hour. She should be pink, and chubby. She should be happy, and playful. She should be smiley and giggling. She should be a normal healthy little baby. Instead she is facing this huge and painful trail, a fight for her life, and she is only 4 months old.
I can't stand it.
Tonight is a hard night.
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8 comments:
I am so sorry for all these hard nights, Ani. I wish I could shoulder some of your burden.
My heart goes out to you sweet Ani. I am praying for you.
I don't know if you remember me, I think we've met once. But I just wanted you to know, I've been following your story and think and pray for you often. I am so sorry your little family has to go through this. Especially, you, as a mom. I'm sure you feel so helpless, but remember that this will make you stronger. Give her lots of hugs, kisses and cuddles! She is so sweet and such a beautiful baby!
It isn't fair. It isn't okay. Everything you are feeling is 100% valid. Let yourself feel angry, sad and frustrated. Virtual hugs are coming your way...
All my sweet kids are gathered around the computer to get Ruby updates. They are all praying for her right along with the rest of us. I know we have never seen her but we feel like we know her just the same.
We love you and your family so much. I hope you know I am a phone call away. If you ever need to sob to a mom who understands..... You know my number.
I love you lil mama. You are doing an amazing job! It's okay to have hard nights. It's okay to shout, "unfair" it's okay to hold her and cry. Mom's don't have to be strong all of the time. It's okay to break down. A good cry is always cleansing.
And then, if you are like me, you will feel better and stronger and ready for the next hurdle.
XOXO
Love you cousin. My eyes are full of tears as I write this to you. I hope you know how this experience in your life and in Ruby's has made MY faith so much stronger. Even though I don't even know Ruby...like you do, she has blessed my life sooo much. Thank you Jesus for putting little Ruby, Ani, Matt, and Kate in my life. To HIM be the Glory!!!
I feel so bad you all have to go through this. I'm praying that you feel God's embrace as he holds you tightly during this trial. Hope this comforts you.
One night I had a dream--
I dreamed I was walking along the beach with the Lord
and across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints,
one belonged to me and the other to the Lord.
When the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
there was only one set of footprints.
I also noticed that it happened at the very lowest
and saddest times in my life.
This really bothered me and I questioned the Lord about it.
"Lord, you said that once I decided to follow you,
you would walk with me all the way,
but I have noticed that during the most troublesome times in my life
there is only one set of footprints.
"I don't understand why in times when I needed you most,
you should leave me."
The Lord replied, "My precious, precious child,
I love you and I would never, never leave you
during your times of trial and suffering.
"When you saw only one set of footprints,
it was then that I carried you."
Love you cousin. My eyes are full of tears as I write this to you. I hope you know how this experience in your life and in Ruby's has made MY faith so much stronger. Even though I don't even know Ruby...like you do, she has blessed my life sooo much. Thank you Jesus for putting little Ruby, Ani, Matt, and Kate in my life. To HIM be the Glory!!!
Oh my gosh. Ani. I am so sorry! I wish I knew what to say. I don't. So why am I commenting? I don't know. I guess to say that I sm thinking about you and praying for you. I almost feel guilty to be at home tonight with my own baby. You're right. It's not fair. I pray that very soon you WILL be home and Ruby will be giggling and happy and sleeping in her own bed. For now, remember that you and Ruby and your family have a Heavenly Father who loves you and a Savior who knows exactly what you're all going through. I know that that is easy to say when im not the one going through it, but i truly believe that. And hopefully that brings some comfort.
Hi Ani! I'm Laura (Baldini) Ek. I don't know you very well, but I know Mike and your parents pretty well! You obviously know my parents and they told me what was going on with sweet Ruby. I'm so sorry that you've been going through this! My heart aches for yours.
Not sure if you know but my daughter Lily was born with a really rare birth defect also. Different from Ruby's, but I completely understand what you're going through :-( She went through a series of scary surgies up until 6 months old. It was a tough road, but has been doing great ever since.
I hope that you have some people to talk to, possibly other moms with kids with the same thing as Ruby. i found some support groups with Lily, and it helped immensely. Talking to others who have walked in your exact shoes helps a lot. I hope that your family is all doing ok, I know it can be hard on everyone. You are amazing and strong, stronger probably than you ever thought you were! Hang in there!
You can email me anytime!
XOXO- Laura
lauraek@gmail.com
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