It was rare disease day the other day. And it’s rare that you develop a relationship so strongly with someone who has one. I did. With my sister-in-law. And on the day before "rare disease day,” she peacefully passed away, surrounded by the beautiful team she gathered during her time on this shaky earth.
The culprit? Cysitc Fibrosis. A disease that most people do not understand and that few know too much about. It robs you of your breathing, fills your lungs with muck and there's no cure. There's of course lung transplants available, but they don't always work. My sister-in-love had one two years ago.
On the day that she died, her youngest son asked me "why did they give mommy bad lungs?" He's turning 7 going on 25 this week. A child this young should not have to know about this type of disease and i'll never forget the look on his and his siblings faces, innocent faces, when their father bravely told them she was gone. It was the end.
But, in time, we will understand it's just the beginning. The start of carrying her legacy forward. That soon we will cling onto all things that were her - her advice, laugh, restaurants she wanted to try and places she wanted to see. In time we will support the organizations who supported her throughout her journey like Chai Lifeline - an organization that supports families in time of critical need. And they follow through. Like no other organization.
So, on rare disease day, I ask one thing.
I ask that when you come across someone with a rare disease like Cystic Fibrosis, you don't solely look at them like that's all their made up of- because they are not. They are normal, weird, smart, silly, happy and sad like you and me. Remember there are no barriers, so don't make them feel that way. There's no us and no them. There's only us, together and ours. Don't segregate anyone with a rare disease. Get to know them because there is so much more that they identify themselves with than just a disease.
May my sister in law's memory be a blessing and an example of how you can live every moment fully, laugh even when it throws you into a coughing fit and to love, love, love so much.
And lastly, we are all rare. Don't forget that.