For a while, I have been following the story of a little boy named Ronan who was diagnosed as an infant with Tay-Sach's disease. His blog was recently named one of Time Magazine's top 25 blogs of the year. His story and the story of his parents is one of incredible love. They called him "Little Seal". His disease was one that caused him paralysis, blindness, and death. He passed away a couple of weeks ago. His mom has written a book called The Still Point of the Turning of the World. It is her memoir of her time with her terminally ill, beautiful little boy.
I have been thinking alot about Little Seal the past couple of days and I want to read his mom's story. The name of her book is very powerful, I think.
I think most people who have experienced loss of any kind will agree that time seems to stand still. It is like your world just stops, but at the same time, the rest of the world continues moving. The earth still rotates on its axis. People continue to live, completely unaware that your world has come to a fast and grinding halt.
All of this has made me think of the emotions that come along with feeling so isolated and so shattered. Right after my loss, my emotions would run the gamut of devastated, anxious, panicked, fearful, and happy (yes, sometimes happy) all in a 5 minute time period. It has been 3 years and 3 months, and sometimes my emotions still are very unpredictable. I have heard grief described as "a roller coaster of emotions." Well, I guess I need to buckle up and prepare myself for the ride.
When I was a teenager, I remember going to Six Flags with some friends and riding that really old, wooden roller coaster the Scream Machine. To this day, I don't know what my feelings are about that ride....scary, exhilarating, stomach lurching terror. I remember that at one point, even though I was wearing my lap belt (that is all there is to keep you inside!), I felt like I was going to fly right out. I think that is what most people love about that ride, but it terrified me and I have always refused to ride it since.
I guess you could say that I have been riding a very similar roller coaster for the past 3 years. The difference is that I didn't buy a ticket for this one and stand in line for an hour to ride it. No, I just happened to walk right on, along with hundreds of other moms and dads who had to go home from the hospital without their babies. This ride is gut wrenching at times and has broken me down to the point of exhaustion before. It has brought me tears, anxiety, and has left me with a hole in my heart that can't be filled with anything else.
But I can't talk about this ride without acknowledging the beauty that has come from it. True--as awful as the loss of my baby daughter was and is for me, there is so much joy and beauty that comes with saying her name and talking about her story. Without her and her story, I would be a completely different person. This one tiny little person taught me compassion and dignity in a way that I could never have learned it otherwise. Her story is a part of me, just as I am a part of her.
I will probably be riding my roller coaster for some time. I still have a lot of healing left to do. And this is one of those rides that doesn't make you get off until you are good and ready. You see, I am in charge of my experience, just as you are in charge of yours. What we make of this ride is completely and utterly up to us. So, for now, I am going to tighten that lap belt a good bit tighter and keep my eyes wide open and maybe even hold my arms in the air so that I can really feel all the emotions and the world around me. This ride is mine. It may not be what I signed up for, but it is mine and my daughter's legacy will be waiting for me when I get off. So, I need to make my ride and my journey count. It's a daunting task, but an important one.
In the meantime, the world is still moving and is encouraging me to be a part of it.