Thursday, February 25, 2010

Liver Families 4th Birthday

The above montage is from a board that I joined right when Ember was diagnosed with Biliary Atresia.  Liver Families has helped me through SO much.  I am so blessed to have such great internet friends as the people on Liver Families.  I am sad that we share the common bong od liver disease, but I am glad that we have a place to share stories.  Please sign up to be an Organ Donor today.

Tuesday, February 23, 2010

Prayer Reqest..

Ember would like to ask any of you who read her blog or my blog to pray for a friend of ours.  His name is Jax and he is currently on the Liver transplant waiting list.  He is 9 months old and has Biliary Atresia, the same disease Ember was diagnosed with.  Jax is not a candidate for a living donor due to complications with his portal vein.  Please pray that someone says yes to giving him a chance at life. 

It is a bitter sweet prayer, to ask for one child to gain a life due to someone else losing theirs.  Please keep little Jax in your thoughts as well as the families who are saying yes to saving other lives. 

Sunday, February 21, 2010

Special little girl...

As the months have passed since Ember has become a big sister I have been wondering several things.  One of which has been whether I was going to love her sister as much as I love her. I do...surprised? Me neither. Another is how I am going to manage to show Ember that she is still a very special little girl.  I have to admit that I have been failing in the second point that I just mentioned.  Ember has become a happy, healthy little toddler and I sometimes forget how extraordinary she is, even if it is just for a moment in time.  I want to stress to her that she is important and that she is oh so special and I have been neglectful of that since her sister has been born.  Let me state right now that I do not believe in playing favorites with your children or grandchildren.  I went through that with one of my sets of grandparents through most of my life and I will not stand for it when it comes to my children.  So it is not a matter of showing favorites for me.  I guess I mean to say that I think that Ember is feeling a little neglected because she doesn't have exclusive mommy and daddy time anymore.  She hardly ever shows it though because she is so in love with her sister.  She always wants to hug, kiss, and love on her.  She is also very good at helping when I need a burp cloth or a blanket.  We are still working on getting her to leave a blanket on her sister when she is in the bouncy seat. 

While Ember is a special little girl becuase of her transplant and her opportunity to change lives through her story, that does not define her.  She is special because of her love, her sense of humor, and her creativity.  She shows unremarkable love towards everyone she meets.  She truly watches people and wants to hug or high five or wave to them.  She LOVES babies and children.  She is so small, yet she has an incredible amount of compassion.  She comforts her sister when she cries.  Admittedly, she has also comforted me when she has caught me crying.  Her sense of humor is like nothing I have ever seen before.  Well, I's her father's sense of humor.  She finds the smallest things funny and has this infectious laugh.  She thinks that the cat is funny even if he is just sleeping.  And, you know what?  He is sometimes. :)  And her creativity is amazing.  She loves to draw, but she also loves to figure things out.  She can figure out how to turn a toy into a stool to sit or stand on in 2.5 seconds flat.  She can also figure out how to fill and dump out any container you could ever imagine in less time than that. 

I can only hope that as she grows she can share her story, become an inspiration to others, and teach her sister how to love, laugh, and live as joyful a life as she seems to have right now.  I hope she can teach her sister that she is also a special little girl.  I hope that I, as her mommy, can teach her that both of my girls are extraordinary in their own way.  Ember is a special little girl, but not because she is defined by her transplant or her disease.  It is because, at the ripe old age of almost 21 months, she has defined her transplant and her disease as part of her life.  She has made herself and her life the story and we are all along for the ride.  I hope that along the way she can teach me how to enjoy the things that she does along with her sister.  Oh, and if she could decide that she would like to be potty trained sometime soon that would be great too, but I am not holding my breath!!! 

I love you my beautiful, special baby girls.  Live long and prosper. Yes, I like Star Trek. Don't judge.