Pompeii Purple

Pompeii Purple. It has served me well, we have been through a lot together. The most wonderful thing when you have are going to have a baby and have a planned C-section is the opportunity to have one’s leg’s shaved and toes polished. It is the one perk to the approaching surgery that will cause your tummy to always have the little “c-section” pooch.

It has been on my fingers and toes during 3 c-sections, and through other times in my life when I needed  a little pick me up. As a blond, purple is a fun color to wear, a little sparkly and bright, and not too overwhelming.  My oldest son Christopher,  who is deceased, would have been 9 three weeks ago, and again I found my way to Pompeii Purple. A little thing, so silly and small, to connect me back to him on his birthday. A loss so huge and large all these years later, that can still engulf me in flames if I am not careful. I have decided to stop trying to describe to people what it is like to loose a child. Because if I do, they remind me I have too other children and how “lucky” I am . Instead, it’s easier to give an anaology.

As a Nurse, my mind thinks in medical diagnoses all the time so I tell people it is like having an amputation. Imagine having both your arms cut off. You have to relearn to live your life without your arms. Your sense of who you are, where you are in this world is gone.  You must relearn to live life, and relearn it and go on you do. You have phantom ghost pains that haunt you and remind you a limb was there, and it is now gone.  Only with a child you have had an amputation no one can see, your heart has been amputated. No one can see the pain and void that fill that space. You are left only with the daily emptiness.

This year as I wore my Pompeii Purple on Christopher’s Birthday, I threw up to the point of having to be hospitalized. Every year, on his birthday or his angel day, I will get physically sick to the point I’m hospitalized.  Last year on angel day, I ran a stoplight and hit another car. An accident that was completely my fault. The fog I was in surrounded me into a blind numbness that enveloped me. No matter how much I prepare, no matter how much I pray to not get sick, after 8 years of not having a birthday boy to celebrate with, it is still the same. My body is somehow reacting to the emptiness that is there, trying to figure out what to do, which manifests itself in physical symptoms that leave me hospitalized.

I have come to the conclusion that there is nothing else left to do, nothing else left to say. Things are what they are. June 11 will mark 8 years since my heart was amputated. I have concluded a few things as the years have passed.

-The pain will never change, it will always be the same, and in some ways it will be different and  worse.  It is different in the point of the post traumatic stress of “post war” Hopkins have diminished slightly. A war it was. People don’t realize when parents go off to fight a war of a sick child, they live on the battle lines everyday, their fight against an unseen enemy that is trying to overtake their child.  I have learned how to deal with the flashbacks of the hospitalizations, and the tortures of having to watch a baby continusly go into surgery and have wires attached to them. I have learned to deal with the complications of the war we faught.

It is worse, in not having the opportunity to watch him grow up. I have the honor of watching Katie and Andrew grow up. I savor every wonderful moment and believe the ages of 5 and 6 are the best ages in the world. I look at them and wish I would have had the same opportunity with Christopher. I am able to experience the pride in Katie’s face as she comes home from school with two less teeth (both being knocked out in gym class, but being so excited the tooth fairy will come). Or watching Andrew constantly build with legos, and making lego town after town or the dozen of dinosaur bad guy catchers that find there way into every room of my house, every day.  The person that invited the phrase “time heals all wounds” never lost a child or someone they love.

There is nothing else left to pray about. I am fortunate and lucky enough to be around friends that inspire me and envelop me with their love. I take my children to church every week,  they sing in the church choir and participate in the children’s Youth Group.  I teach them to love God and all the wonderful things he gives us on a daily basis. Katie’s favorite book is a prayer book that was given to us by friends for Christopher when he was born. I was always taught to turn to prayer, and still do in difficult situations. In regards to how to ask God to bring me peace, I don’t know that he can.  I do not know with the strongest of prayers that there will ever be peace from not having Christopher here. To know that his disease is so rare that children are still dying, and will continue to die, because there is limited research on this disease.  That other parents will have to learn to say and explain the word: MUCOPOLYSACCHARDOSIS  and learn their children could eventually develop multiple organ failure and die. I am a Master’s Educated Nursing Professor, and I still can’t wrap my head around the disease.  So when I pray, I pray to Christopher. I tell him I love him, I tell him I tried, and I think him for sending down a healthy little sister and brother I can love and watch grow up. And in true Christopher fashion, within a few hours or days, I will have a sign, a special blessing that could only come from the best baby angel in the world, who I undoubtedly know is sitting in the lap of the best great grandma in the world, flittering into my life.

I need people to remember.  I think each of us, deep down, has a secret fear of being left out and forgotten. A fear we won’t be invited to a certain event, a fear someone will forget us. For parents of bereaved children, it is a fear that can envelop oneself and makes you want to scream from the rooftop “Don’t forget my child! His life mattered also!” If I could ask anything of my friends and family, it’s that I receive an e-mail or a card twice a year. Once on his birthday, and once on his angel day. That’s all I need from you all year, and I promise in return, I will be a wonderful friend the other days of the year.

As I write this I look at a picture on my desk of my sorority sisters from college. We were all so young, and I was one of the first to have babies and they all were hugging me as we smiled at my baby shower for Christopher. He was the miracle baby that I was told I might never have and there we were smiling, so filled with hope and joy.

For I have the most wonderful, blessed life one could lead.  I have the honor of being a Hokie and alumnae of one of the most incredible schools in the country. A school that has seen its share of tragedy, yet continues to remain strong and beautiful.  I get to hold people’s hands as they go to sleep before surgery and tell them I will take care of them. I get to sit in front of a classroom and teach nursing students about how to love and care for your patient. The most important blessing is having the privilege to watch two beautiful children grow up with an incredible husband by my side.

Watching a child grow up is truly a privilege, if only all people could realize how special and fragile children are, and how at any moment it could slip and crash. One day I will tell my children how that extra ice cream cone I bought them, or that extra box of legos I bought them was more for me than it was for them. I, selfishly, love to see them smile, and perhaps was missing there brother on a certain day, and wanted to see their beautiful smile that fills me with so much love and joy.

Me and Pompeii purple, we will be fine together. We will continue to be together on birthdays and angel days, we have made it.

You can get a bottle at Macy’s – click the image for a link 🙂 

 

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