The role of a Grandma or the Best Grandma Ever (BGE) is to support, support, support and support some more.  I raised Sophia to be a strong, independent, woman but she exceeded my expectations.  Harley went into the hospital this last time on 7/21 and as of today, 9/11/23 she is still in the hospital.  Sophia has taken very few breaks from the hospital.  I slept on that bed just one night and I don’t know how Sophia has slept on that bed every night but 2!  It is seriously uncomfortable and people are in and out of the room all night.  Sophia said she is able to tune it all out.  

Sophia never cried, one day I asked her if she has cried and she said “No, I cry for other people going through the same thing but I don’t cry about my situation, I am not a victim.”  Her approach to her situation is one of acceptance.  She can’t change things so she just keeps powering through.  

One of the best things she did was to find a support group for Biliary Artesia. This group has been a lifesaver.  They provide not only a resource of knowledge but the support of people that have been through what she is going through.  As a member of the group I appreciate the knowledge they share that helps me to understand what is going on and what  challenges Harley and Sophia face everyday.  

Post transplant has been hard because Sophia can’t hold her very often.  Especially right now when the baby has a chest tube.  Every time I go and spend an extended amount of time at the hospital, I am exhausted.  Harley is like a whole new baby but she still needs to be soothed sometimes and that requires lots of standing and soothing.  Then there is the physical therapy and trying to get Harley all caught up with her milestones.  

Even though Sophia doesn’t cry, I cry pretty regularly when she can’t see me.  Nothing makes me tear up more than when I see sweet little Harleys face light up when she sees her mom.  These two are a team and that is what every Grandma wants for her child.