Carnival by the Sea

A Transplant Story

While we were at Johns Hopkins I would often sit and think about how our life resembled a traveling carnival. The type of carnival that sets up for a few weeks or months, and than suddenly vanishes. We arrived one day at the new carnival(hospital) excited about the opportunities it could bring (a new life for Christopher). However, we looked around at the scary rides (chemotherapy and the transplant experience) , the roller coaster (PICU), the tilt a whirl (decisions having to be made) and the spinning teacups (our emotions going round and round) and knew there would be much tossing and turning on our adventure. I took my baby’s hand and together we walked into the carnival.  Eyes wide open and looking around. We always thought we would be leaving with the best prize of all from the carnival, no more Hurler’s and Christopher’s life!!!

We stepped on the rides, and off we went!!!! We constantly alternated between the spinning teacups, tilt a whirl and roller coaster. Some days it would be one ride, sometimes a combination of all three rides. Along the way were the clowns, yes there really were clowns! The Big Apple Circus ( a real circus like Ringling Brothers) has a “medically trained clown care unit” that works at the hospital. We got to know “Dr.” Boots and his staff very well. They made their rounds in the pediatric unit and knew Christopher loved bubbles. One day he wouldn’t stop crying and “Dr.” Boots, with his big red nose and shoes started blowing bubbles. Christopher laughed and laughed, you would have thought he won the lottery.

We even tried a brand new game at the Carnival! Enzyme Replacement Therapy (ERT) before transplant. It was a game no one had tried before. Guess what? Christopher one the game! His prize from the ERT game was a better airway (trachea), liver, and spleen!

In this carnival there was a house of horrors. The house of horrors can best be described as the needles, chemo, and medications Christopher had to endure. The house of horrors scared us all, and at times we all cried. It truly was a horror.

We were introduced to new people at the carnival (hospital), many who brought more smiles than tears. (Aren’t carnivals suppose to make things better)?  There was even food at the carnival! Nurse Becky became our angel who brought us food every week, without Christopher going to the carnival we would never have met her.  Their were also many volunteers who came weekly to cook meals for us at the Children’s House.

We met other parents at the carnival whose kids were riding the same “rides”, and together we talked and formed a bond as our kids were on the rides. We assured one another that it was just another turn or spin, and everything would be OK. When the dizzying teacup ride was too much, we let the other cry in our arms.

After that:

We got on the roller coaster… The PICU… We would be going up ( a good test result) and get to the top of the ride. We would want to scream with joy at being so happy with such wonderful news.

After that:

As quickly we were up, we would crash down. Sometimes a big dip, sometimes a small dip and up the hill again.

After that:

We would be staying on track for a while waiting to see if the next turn in the ride was up or down.

After that:

We crashed, our ride went down hard and fast and we screeched to the end of the ride. The lights went out on the ride. Everything was dark. The prize was gone, we lost Christopher’s life.

The carnival suddenly in the snap of a finger disappeared. No more rides, no more clowns, no more Hopkins friends. Everything was dark, scary and gone. Joe and I were in the roller coaster car and our precious baby wouldn’t be leaving the carnival with us. We brought him in with a twinkle in his eye and the wind blew it out.

We were left with the sea (life) and trying to figure out.

When we stand by the sea and look back at the sand where the carnival was, it’s gone. The rides, the roller coaster, all PHYSICALLY gone.  Our prize (Christopher’s life)  is gone. We can’t see it, we can’t touch it. We worked SOOOO hard at the Carnival. We don’t understand where it all went. We only have the painful memories of the carnival.

The only thing for us to do is to stick a toe in the sea (life) and start treading water. We are now riding the waves in the sea, looking at where the carnival once was. The “waves” hit us when we least expect it. The waves are grief, they come and go. Sometimes it is a big wave, sometimes a little one.

Somedays:

We just paddle along

Somedays (most days):

Our friends or family are treading water helping us to figure out everything

Somedays:

I just don’t know

Somedays:

The waves suffocate us

Somedays:
I let myself lay on my back and look at the sky. I try not to look to the sand where the carnival was. When I lie on my back and float I will see a butterfly glide by in the sky and know it is Christopher. The other day at the cemetery a white dove flew by. How many times does a white dove fly by in a large metropolitan area that is 100 miles from the ocean? Not much!

So……

I need to concentrate more on laying on my back, and floating along. This way I will let myself see the butterflies that fly by. I still look toward the sand and try to find the carnival and want answers as to where everything went (what went wrong). But, I will never, ever find them. Ever. The carnival has left.

The waves will always be there, forever, they aren’t going anywhere until I meet Christopher again in heaven. Hopefully I can float along, and when the waves hit, just paddle through the motions and come out on the other side. My tears will be added to the waves, and that’s OK. I love my boy.

I dedicate the carnival to (and the families of):

My angel Christopher, Katie, Dustin, Megan, Zoe, Baby James, Baby Brady, Reesie Cup, Mighty Max, Andrew F., Aaron A., Cameron – My prayers would be to never put a child’s name on this.

Some of us got off the carnival ride, and some of us didn’t. Our lives will never be the same after going through the carnival, we are now all standing at the sea trying to readjust to life.