Cherish Each Moment

While we are excited about the opportunity for Sarah and our family to further advocate for liver diseases, our hearts are broken today. In this small world of biliary atresia, we have met many families at Seattle Children’s Hospital and online through Liver Families, Facebook and other avenues. As parents who have experienced firsthand the things that go wrong with a little one’s body when a liver does not function properly, our hearts & eyes have been opened greatly to the struggles and pain other families face. The brave little children who have such cheerful hearts in the face of adversity have strengthened and touched us. Sarah has been a trooper through her whole experience but there are others.

One such little girl is Blair. We began following her on the CaringBridge website a few weeks ago on the tip from our good friend (and mother of a BA baby), Beth. Her mother had signed up to be the donor for transplant and things were looking good, full steam ahead. We learned over the weekend that the first transplant did not take and a second transplant was needed. Sadly, little Blair’s body could not stand the wait between losing the first transplant and gaining a new one. She left our world and returned to the arms of Jesus, a beautiful 10-month-old girl who had charmed many people in her brief time on earth. Her parents’ own faith seems to be carrying them, based on their CaringBridge entry. It is in these difficult times we see the greatest blessings in life. While we may not be able to explain why these things happen and treasured little ones are taken away, we do know that even their brief time with us was inspiring and for a purpose. The love we are able to share with them and that they show us is almost impossible to put into words.

Blair is not the only child that has died from liver disease or a transplant that did not take. There are others and this is why our family is so intent on reaching out to other families living through this difficult time. Whether their child is waiting for liver, intestines or other organs; whether they have already had a successful Kasai and are doing well (praise God, we know a few of them!); or whether, they are in dire need of a transplant TODAY, we feel obligated to offer whatever encouragement and support we can.

I am writing this post today as much to help wash away my own grief for Blair and her family – for her two-year-old brother that probably won’t remember his sister – as to remind all of us how precious life is and how important it is to treat each moment with loved ones and friends as if it were your last moment with them. Cherish the minute, the hour, the day. And begin doing it now.