Christopher’s 11 Birthday: Thoughts on Being a Sorority Girl

When I went to Va Tech I was truly blessed. I had the privilege of becoming a Hokie and meeting an incredible man and living for four years under the peaceful orange and maroon skies. Besides all of those wonderful blessings, I got to become a sorority girl, which if anyone knows me fits my personality. Twenty years later when I go to see a sorority sister, I still wear my pigtail a little higher, my lipstick a little brighter, and my shirt a little cuter (I also throw on a pair of Spanx since I’m closer to 40). When I was too terrified to have a baby shower for Christopher (we didn’t know if I could carry him to term), they gave me a baby shower and welcomed him with open arms.  A year later when he died, some of the most beautiful women I have ever met wore dresses of black and sat in pews of my church to help morn him, and their souls cried with me.  A year later when we knew there was a little girl on the way, I insisted on NO baby shower. Again, too scared to have another child, and what if this one would have to bear the same fate of having a terminal illness? So my sisters threw me a surprise shower, one with lots of pink and girly clothes, the perfect way to welcome a future Va Tech sorority girl.

Eleven years ago, on April 24, I was initiated into another Sorority at the time I didn’t even know I was entering. It was a sorority of mothers who are given the honor of having a special child in this world. It was a sorority where women automatically became fighters and held honorary RN’s, PhD’s and MD’s.  I call it the “Fighter’s Sorority,” It’s mission and goal was to go to the end of the earth and fight like hell every day for the rest of their child’s life. There was no candle lighting ceremony, no secret song or handshake or no celebration filled with booze and drinking out of control (although that probably would have helped a great deal). Here is how my initiation came to pass after Christopher had been born:

20 minutes old: Trip to NICU

Me: “Ok”

1 week old: Dr says he may possibly be deaf

Me: “Not a problem, we will figure it out”

6 weeks old: Dr. Says he needs hernia surgery at the ripe age of 6 weeks

Me: “Not a problem, these things happen to little boys”

6 weeks old – 6 months old: more and more and more tests, doctors and hospitals and poking and prodding….

**all of this “hazing” was leading up to the grand day of intiation:

6 months old: Pediatrician looks at the floor in a silent dark room with tears rolling down his eyes, because he knew in the next few words he was saying, he could potentially be signing Christopher’s death certificate “He has Hurler’s Syndrome, the worse type”

Me: “Not a problem, this is MY child, we will figure it out and he WILL survive”

I went home and did what any good sister would do. I researched and I fought. I called doctors and hospitals and clinics. I met other “sisters” along my journey. Some of the finest people God has ever put on this earth and I was proud to be with them. You could tell who we were. Although we didn’t wear Greek letters on our chest, we held our head higher and stronger, even though we were so, so, exhausted.  We had a job to do, not one person was going to stop us. There was a sense of pride because the doctors didn’t know OUR child, OUR child was going to be the one that survived, the ONE they wrote the books about.  We were going to save our child’s life, even when the doctors said no. We talked about treatment protocols and ANC levels, we knew what a good day would be from an ABG number, and when a crappy day would be because the Zofran or Phenergan simply didn’t cut it for vomiting anymore. We were determined, we were strong. If one sister happened to have a meal that wasn’t hospital food, they would gleefully share the food with the other sister, so happy to have a normal treat. I remember a night when we were so, so, happy because the Children’s House was providing us with a steak dinner!!! Steak? Could it possibly be true!!! We talked about it all day, I still remember my mouth watering at the thought of having a “normal” piece of food.

There were nights I would go into the linen closets and steal blankets and pillows in the hospital, I would wipe out the linen carts. I would walk around the PICU waiting room and put my fellow sister (or brother’s) head on a pillow, I would put a blanket over them and tuck them in. Sometimes my fellow sister couldn’t speak English, she would simply look at me with tears in her eyes, and I would hold her with tears in mine. After all, we were initiated into the same team, sister’s must also look out after each other. Cultural language does not separate a sister when they are fighting on the same team.

I have often said I don’t feel God did this to us, and I still believe that. I think we were given a SHITTY hand. But, I also think he was given to me for a reason, given to special sisters and brothers.

Than pretty quickly, the bottom fell out…..Mistakes were made… and it was too late…

And I found myself in a new sorority, starting over in sorority number 3.  With brothers and sisters… Again, some of the finest people I have ever met in my entire life.  Only this time it was a little different. Our eyes lost that spark, heads hung a little lower. I use to jump out of bed with a spark when Christopher was sick. Today was the day he would be healed!!! That didn’t happen anymore. It felt like lead to get a foot out of the bed. There was a sadness that hung around like a raincloud in the sky. There was a hell nobody understood, and we prayed nobody would understand. We don’t want people in our sorority, we don’t want you in our group. Please stay away. For if you were to become a sister or brother, that means you have walked our path, and you know what it is like to truly experience hell on earth. You would have to rebuild your life while nobody understood. There would be memorial walks and fundraisers, groups and foundations to help our children’s lives go on, but we would always be united by that crack down our heart nobody but us can see.

For this group, I regret not knowing their children. But, I really do know them. I see them in the pictures their parents show me. I know their personalities about how they did something silly in the hospital that astounded the hospital staff. (Did I ever mention the story of Christopher peeeing so far across the room he almost shorted out electrical equipment?) So my sisters and brothers, we move along together, figuring out this new organization we’re in. I think we’ve done a damn good job. We have survived.

In Closing:

Birthday number 11 came and went as it always does. I called my best friend, my kindred soul for over 20 years and we cried together for 30 minutes, and the tears were cleansing, and they were good tears. Joe and I met at the cemetery and put out flowers and balloons and stuffed animals. I don’t know why I still put out stuffed animals for a baby. In my head he is still 14 months, I don’t even know what an 11-year-old would like. We bought a cake and did a balloon release with the kids writing messages. When I had gone to check out with the cake earlier, the cashier looked at me a long time in a strange sort of way. “You look exhausted, are you ok?”, “No, I responded, I am very sad.” Grief is exhausting, but the thing about grief is there is always the next day. The next day we got to go to an awesome wedding and celebrate two friends getting married and eat and drink in a beautiful club and be in charge of the bubble machine! We got to dance (although three weeks out from spinal surgery I probably shouldn’t have been wearing high heels and jumping up and down because I haven’t been able to walk the rest of the weekend).  But I have an obligation. I am a member of some very special sororities. They would expect nothing less than survival.

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