Tonight my daughter and I got our “15 minutes of fame”.  She has an autoimmune disorder and her body attacks itself. This means her body creates antibodies against her own blood cells, killing her platelets (clotting cells) and red blood cells (oxygen and energy carriers).  This has made her dependent on platelet transfusions weekly and red blood cells transfusions every 3-4 weeks. She has a port which makes it easier on her veins. We travel the hour each week to clinic in Providence and she gets her transfusions. This has been the norm for us since 2012.

Today, the Rhode Island Blood Center had a special event to recruit new donors, especially for platelets.  Along with the help of Dunkin Donuts incentives like giftcards and Patriots tickets, they are kicking off a goal of 1000 new donors this year. They asked my daughter and I to come and speak about how important it is for her to be able to receive platelets and how she is able to be a pretty normal kid and very active because of these wonderful donors. We also met a donor that is there to give platelets every two weeks and 3 people that were in the lab giving while we were there. This was a very special event to be part of and we were grateful to be included and to be able to thank these wonderful people who donate.  The media was there and so we were on television too! Very cool to see my beautiful tween being her rockstar self. Everyone at the blood bank already knew who she was and was excited to put a face with the name.  They treated her like a real celebrity and it definitely has gone to her head! Ha!

Tons of friends contacted me to say they had seen us and our story.  The people who have known us for a while and know us well, gave their thumbs up in one way or another. The people who haven’t known us very long, seem to have a different reaction. People messaged that they feel bad for us or that our story left them heartbroken.  They are missing the point…

Medicine has come far enough to have a process for giving your own blood to another person who needs it and then them being able to receive it and LIVE!! My daughter is able to be a competitive gymnast because she gets platelets. She is able to cheer for her school because she gets platelets.  She is able to do sports because she gets platelets. She is able to LIVE because she gets blood!!

You need perspective in life. We could look at it like it sucks that we have to go to clinic each week. She misses a few hours of school on Thursdays and once every few weeks we have a really long day of transfusions and it’s exhausting for us all. There is no protocol for her except keeping her stable. There is no definitive end to her treatment.  But none of this is what’s important.  SHE IS ALIVE. She can get what she needs because of wonderful blood donors.  She is able to spend as little time as possible at the clinic because of the amazing staff at Hasbro Children’s Hospital in Providence that treat us, and all their patients, like family.  They know we have better places to be and much more fun things we’d rather be doing. While we are there, they have made it so much fun that the kids sometimes don’t want to leave! We have an amazing new group of friends who happen to be the strongest group of parents and kids you’ll ever meet. We know this isn’t the best situation. I live on faith. I’ve learned to live one day at a time and enjoy the fuck out of it all I possibly can and I’m teaching my kids to do the same. As we sit in clinic one day, and mostly one half day, a week, there are plenty of people that have lost their children or other loved ones and they would do anything to trade places with us. Please don’t ever feel bad for us. We have learned how important life is and how important it is to live each day fully. Don’t pity us.  My kids have a trampoline that makes our hematology team cringe, but YOU ONLY LIVE ONCE!! Don’t be heartbroken in the least. We know how to have fun and live it up and we do!!

I don’t know what the future holds. I do know that God is good. I do have a strong faith that my daughter will someday get better, hopefully in an “easy” way.  I also know that we all need to keep our lives in perspective. While other children have limited life experiences and activities due to their conditions, my daughter is getting so many amazing opportunities to LIVE her life. She is getting to be mostly “normal” and, just like other tweens, drive me nuts.  While other parents, including my own, have had to bury their children, my daughter is here and LIVING! I get to see her every day. I get to fight with her. I get to kiss her and tuck her in at night. I get to play her in air hockey.  I get to watch her talk to boys and embarrass her. I GET TO BE HER MOM!!  So, please, please don’t ever be heartbroken for us or pity us or feel bad for us. I get down sometimes myself, like we all do, but I know how blessed we are to be together as a family to love one another, to fight, to play, to hug, to cuddle, and to LIVE as amazing a life as we do.