Friday, October 22, 2010

Our lives have changed....

For the better.  Two years ago today Ember was placed on the transplant list.  Two years ago today we started what could have been a very long wait for her life saving gift.  Two years ago today we knew that our baby was sick, but we really had no idea how severe it really was.  Yes, she was being placed on the transplant, but it wasn't final for us until she was actually transplanted.  It was always one of those hopes that she would magically get well enough to be removed from the list.  It happens, but not often. 

Since that day, our lives have changed in the most incredible ways. We have had to opportunity to watch our little girl live.  And by live, I mean thrive.  We have had the opportunity to meet several families affected by BA and it has been amazing.  We have had the opportunity to meet some of the best nurses, surgeons, PCA's, and volunteers in the world.  I can honestly say that without any of them, we wouldn't have made it through to today.  They helped keep us sane while we tried to help keep others in our position sane.  Since that day, we have also felt the loss of several beautiful liver babies.  Even though we never met them, we felt the loss all the same.  I can't even begin to count the silent tears I have cried for each and ever liver baby that we have lost or that is going through a rough time.  I hope and pray that every liver baby can be as blessed as Ember has been.  She has had relatively few complications since her transplant, and most of those complications have been unrelated. 

She has the peanut allergy and she is a very rashy baby. We worry a lot about the rashes because they seem to just come up out of the blue.  However, if that is all we have to deal with, then I would say that we are very blessed.  Two years ago, I would watch a very tiny 4 1/2 month old yellow baby sleep a lot.  I would hold her wondering when she would crawl or even walk and what our future held.  If I had only known.  Many liver moms told me that the other side of transplant was amazing, but it just didn't click until I was there.  Within days she was a pink baby!  As she grew she became healthier and more active.  She never did crawl by the way.  She just went straight to walking!  And now, you just can't stop her! 

Two years ago today we learned the true meaning of support.  I can only hope that we can provide the same type of support to others as time goes on.  And hopefully, one day, we won't need to because they will find a cure for BA.  Thank you to everyone who supported us then, continue to support us now, and will support us in the future.  It means more than we can say and we love you for it.