Sixteen

(Originally written 12/22/08)

This time of year is usually pretty busy for people. The holidays sneak up on us and we often find ourselves rushing to buy that one last gift or bake that last batch of cookies. My family, like so many others, always gets caught up in the hustle and bustle that December brings. But there is always an undercurrent of sadness, just below the surface, when we gather together to celebrate. We are a close family, closer than a lot of families, and it is a sad bond that has made us so close. We have been brought together by loss.

On December 28, 1992, an angel was born. Her name was Chelsea. She was the first grandchild on both sides and the first niece any of us had. We loved and cherished her more than any child has ever been loved and cherished. From the day she was born, we knew she was special.

On August 15, 2000, that angel went back to Heaven. She was seven and a half years old.

She would have been 16 this year. Sweet sixteen. It's hard for me to wrap my brain around that fact. In my head, she is forever a sweet second-grader who loved Barney and Tweety Bird and her "ruby slippers".

People in my mom's generation remember where they were when Kennedy got shot, or watching the first moon landing on TV. They are defining moments in a person's lifetime, because they represent huge changes on the horizon. My "defining moment" was the day we found out exactly what was making Chelsea so sick. It was March 12, 1998-a Thursday. I was 8 months pregnant with my first child and had just gotten home from birthing class with my husband. At 9:30 pm, I received a phone call that changed the course of my life. She had a brain tumor, and they were operating in two days. My baby shower was supposed to be the day of the surgery, but I immediately agreed to reschedule it. How could I possibly celebrate when my sweet little niece was undergoing the most major surgery any of us had ever seen anybody have? She was only five years old! How could this possibly happen? How on earth does a five year old get a brain tumor? It was almost too impossible to believe. We were in shock.

She had the surgery. There were complications that slowed her recovery down, but she ultimately started to get better and moved on with her life. There were high points (a fantastic trip to Disney World given to them by the Make-A-Wish Foundation, the most amazing organization in the world!), and low points (her eventual decline into complete paralysis as the tumor, which was located on her brain stem, grew and pressed on her brain stem, causing her to lose her motor function) over the next two and a half years.

Tragedies usually either break a family apart or bring it closer together. I am happy that my family was able to overcome the pain of watching our beloved Chelsea get sicker and sicker and draw closer than ever. We were like survivors of a shipwreck. We clung to each other and supported each other and loved each other all the more because we understood how fragile and tenuous our hold on life really is. We were like shipwreck survivors in another way too: having a child or family member that sick isn't a very common thing. There are a lot of people out there who will (luckily) never know the pain of having to stand there, helplessly, as someone you love suffers. We held on to each other because in doing so, we were able to form a force-field of sorts against stupid, insensitive people who would say horrible things out of fear and ignorance.

In the end though, all of our hopes and prayers weren't enough to keep Chelsea alive. She had gradually declined to a point where she was in a wheelchair, unable to sit up unassisted, or move her arms, legs or head. She could no longer feed herself, and she had gone back to wearing diapers again because she couldn't get to the bathroom on her own. The tumor was now not only compromising her motor skills but her breathing as well. The weekend before she died, she went into respiratory arrest three times and finally had to be put on a ventilator.

We were all there with her when she died. I can't (and won't) go into the details of that horrific day. Even now, over eight years later, it still plays like a terrible, painful movie in my head. I can remember every single moment of that morning. Losing a child is something I would not wish on my worst enemy. You cannot even begin to imagine the pain unless you've been through it. I couldn't understand how the earth was still spinning when the most amazing little girl in the world had just left the planet. A part of me died that day in that cold, cramped PICU room. She took a piece of my heart to Heaven with her.

Chelsea lives on in our hearts. We are now able to get together and smile and laugh and tell stories of her amazing bravery and her snappy sense of humor. We giggle when we remember the silly and embarrassing things she said in public. We smile fondly when we see a Tweety Bird or hear a Barney song. We know how blessed we were to have been able to "borrow" her for the seven years, seven months and twenty-three days we had her. She made me a better mother. She made my parents better grandparents. She made my brothers and their wives better uncles and aunts. She left behind an indelible mark on this big planet. There is not one person who met her who didn't love her. That was evident at her funeral. There were hundreds of people there to honor her life and say good-bye. Family, friends, doctors, nurses...just about anybody and everybody who came in contact with her. That right there was a testament to what an amazing girl she was. She was, and still is, unforgettable. I see her in my own children. Jake's love of Reeses' Peanut Butter Cups, Sam's love of the Little Mermaid, and Norah's obsession with all things Disney and girly make me think of Chelsea. There are things they do every day that bring her to mind. And it always makes me laugh, because I know she lives on in them.

So if you see a faraway look in my eye or a sad smile on my face this time of year, give me a moment. I'm remembering my Ladybug.