Most definitely, will not be ever be trying our luck in Vegas. The odds are just not in our favor. Ever!Ruby's condition is so very rare...one in a million. That, right there, should ensure us good odds for life! But, we have been struck once again.
As a mother, having a sick child is basically, well, for lack of better words, the worst thing. My primary role in life right now is to take care of and nurture my children, and provide the things in life they need. Not being able to help Ruby, has been the hardest part. Just standing by, and watching, and wondering, kills me.
I started to feel a little more like a mom when I started my work up to become a donor. Maybe I even felt a little giddy getting up on that table for my CT scan??? I admit, I did. Every blood draw, and IV I have had so far has blown my veins, and left me with a nice painful bruises. But every time I bend my elbow, and it hurts, I have thought...that was for Ruby! I am actually doing something for Ruby.
I have wanted to take this trial away from my child from day one. But, it is obviously not possible. However, I thought I would be able to share, at least part of it, with her however by donating a segment of my liver. If she has to have a long and painful surgery, shouldn't I? Yes! That is what mothers do! If she has to live her life with a huge scar, should I? Yes! I wanted to be her hero. I wanted to just be her MOM!
This morning, all of that was taken away from me. The surgeon that is head of the Living Donors, unexpectedly drop by the room this morning. 50% of the population has what they call "normal" livers. The other 50% has some type of abnormalities with the anatomy. I happen to fall with in the abnormal margins. Instead of a nice flat pancake liver, mine is more cubed shaped, and about 3 times too large for Ruby right now. If she can keep growing for a while longer, it might still be a possibility, but his answer for now is definitely a no.
I feel helpless once again.
As a mother, having a sick child is basically, well, for lack of better words, the worst thing. My primary role in life right now is to take care of and nurture my children, and provide the things in life they need. Not being able to help Ruby, has been the hardest part. Just standing by, and watching, and wondering, kills me.
I started to feel a little more like a mom when I started my work up to become a donor. Maybe I even felt a little giddy getting up on that table for my CT scan??? I admit, I did. Every blood draw, and IV I have had so far has blown my veins, and left me with a nice painful bruises. But every time I bend my elbow, and it hurts, I have thought...that was for Ruby! I am actually doing something for Ruby.
I have wanted to take this trial away from my child from day one. But, it is obviously not possible. However, I thought I would be able to share, at least part of it, with her however by donating a segment of my liver. If she has to have a long and painful surgery, shouldn't I? Yes! That is what mothers do! If she has to live her life with a huge scar, should I? Yes! I wanted to be her hero. I wanted to just be her MOM!
This morning, all of that was taken away from me. The surgeon that is head of the Living Donors, unexpectedly drop by the room this morning. 50% of the population has what they call "normal" livers. The other 50% has some type of abnormalities with the anatomy. I happen to fall with in the abnormal margins. Instead of a nice flat pancake liver, mine is more cubed shaped, and about 3 times too large for Ruby right now. If she can keep growing for a while longer, it might still be a possibility, but his answer for now is definitely a no.
I feel helpless once again.
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11 comments:
I am so sorry! (((Big HUGS)))
God has a plan. All of my bigs kids are saying they will give rubes part of their liver. You know we are willing to try. Please let us know if that's a possibility.
Oh Ani I'm so sorry!
I'm sorry Ani. You are doing everything for Ruby by just being there for her. You are nurturing her, and helping her through this difficult time. You're a GREAT mommy for trying!
I am so sorry Ani.
I am sorry, too. :(
Ani, I cannot believe what you are going through. Your sweet little Ruby, and your entire family has been in our prayers for the last few months. Even my husband, who really doesn't know anything except that a baby needs our prayers, remembers Ruby in his.
ANI
YOU ARE HELPING RUBY. EVERY DAY. EVERY SECOND.
YOU ARE EVERYTHING TO HER. REMEMBER THAT.
THINKING OF YOU. PRAYING EVEN MORE.
xoxo jill
Ani, my heart is just aching for you guys right now. I wish there was something I could say or do to help, but all that's coming to me right now is to tell you what an amazing mother you are right now to your little girl. It's so evident just through your words. You have been entrusted with a precious gift and in turn you are taking care of her in every way you possibly can. He will handle the rest. HUGS to you and I hope little Ruby (and you) both get a good night sleep tonight. You guys are in our prayers!
I just found your blog through my friend Jenna and I just had to say that reading through your posts has been a huge blessing for me. Talk about a cup of perspective. You're amazing. Heavenly Father must really trust you to send you that little Ruby. You're doing everything right. wow.
oh ani, i am so sorry to hear all that you are going through! i am just getting all caught up and my heart is sick thinking about your worry for your precious daughter. prayers for sweet, beautiful ruby tonight, and the rest of you (especially her mama) as well.
xoxo
I am so thankful you are so open with your blog. I am so sorry about Ruby, she is adorable. My daughter has two liver diseases, alpha 1 antitrypsin and wilsons disease. So we are super lucky also, she is 1 in 9 million... right now she is doing very well on her medication. I hope it lasts. I am just thankful to read your blog and not feel alone in the crazy life of a sick child. You helped me to remember that I am so lucky right now, and to not take these little things for granted. You and your husband are amazing, you are in our prayers.
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