Elmo Sitting at the Feet of Jesus
Beneath the historic dome at Johns Hopkins stands a 10 ½ foot marble statue of Jesus. It has sat there since 1896 and has served as a symbol of hope and strength for people. Patients go and sit at the feet…, often rubbing them for good luck. They look up at the massive statue with its outstretched arms to try to feel the comfort of Jesus.
Then you are in the hospital at night there is something that is so indescribable. The rest of the world is rotating around you and you are stuck in this little city of sickness when all you really want is to be at home, living your life. Late at night, and in the wee hours of the morning, when the the halls were very, very, quiet and the rest of the world was snug in their own beds, I’d go visit that statue. I’d leave Christopher in the care of his nurses for a short while and take his red Elmo doll down to the statue of Jesus. I wanted to be very clear to Jesus who I was praying for and who he needed to save. The child that needed to be saved was the one with the beautiful blond hair, and the bright blue eyes. I’d put Elmo at the right foot of Jesus and rub his foot (legend was it was good luck to rub his feet). I’d get down on my knees, and with Elmo at the foot, lying on the statue I’d look up into that large marble statue with it’s arms outstretched and pray for him to save my baby. I’d pray, and pray, and pray. It was just the still of the night, and Jesus and Elmo and me. Together we needed to create a miracle for this child that was loved so very much. After I finished praying I’d go to the tall pedestals surrounding the statue and look at the books people had written prayers in. In those books people right wishes, pray for God to remember their loved one, or thanking him for the medical miracle that happened. I would read page after page of hopes and dreams, sadness and heartache.
It is said that god has our life exactly mapped out. That he knows everything that will happen in our life and I have always had a difficult time understanding and accepting. How can a loving God put a child on this earth for 410 days and take him away? I think Christopher was a special child, and he was given to me for a reason. I know there was a reason I was his mom. I do think there are things that are as strong as god, and I believe disease and sickness is one of those things. I think there are some diseases that no matter what we do, what medicine we give, or what prayers we pray things just won’t get better.
My mom recently said to me, maybe when Christopher died Jesus simply said, “enough”. Enough is “enough”. Maybe, he was wrapping Christopher in those arms I had prayed to with Elmo. Perhaps he wrapped him up and took him to a place of healing, a place I can’t see, but a place I had prayed for. I constantly try to rationalize it in my head, this is only just one of many rationales I can come up with.
On a rainy Friday afternoon deep in the city when his heart stopped beating in my arms the doctor said “He is gone.”I as his mother, pronounced his time of death to be at 4 pm. I brought him into this world, I would be the one to say when he left. June marked 9 years since we lost him. It has been 9 years of tears and sorrow and what “if”s. Nine years of imagining how different life would be if he would still be here. I am exhausted, I have finally reached a point of “enough.” Grief is exhausting, it is life sucking. The grief of the loss of a child is a depth of hell that is incomparable to anything else imaginable
9When I was growing up I had a snoopy doll I loved. He became dry rotted and broken down from so much love and my grandpa duck taped him back together.
I loved that duck taped Snoopy, if other people saw him they would only see the ugly silver tape, not the beauty that was within him. When Christopher died it was like someone took a sledge hammer and broke my existence into a million pieces. Like a mirror that was shattered, so became my heart. Over time, I have duck taped that mirror back together. It still shines brightly, only it is pieced together with duck-tape that shows the wear and tear, and the love that binds it back together. I am not done grieving, I will never, ever stop missing him every day of every second of my life. But the duck-tape is there. It is a LOT of tape.
Someone that lost a child once told me it takes 5 years to come out of the “cloud” after your child dies. The first 5 years were filled with a hazy dark cloud that surrounded every day existence. Setting one foot in front of the other was like stepping on air, everything felt surreal and so far away. Looking back now on the cloud years of grief I have no idea how I had two more high risk pregnancies, worked and earned a masters degree. Sometimes in life all you have to do is put one foot in front of the other.
The years of duck-tape are coming to end. The major pieces have been taped back together, but there are still shards of pain that cut deep and won’t go away. At end of the day, there still isn’t a cure for Hurler’s Syndrome, I honestly don’t think there ever will be, it is too catastrophic a disease. Sometimes there are things that are just too deep. But, I will always have my memories of Elmo and I praying and wishing for a cure.