February 24, 2009

Hope: A Eulogy [jay]

“Abandon Hope, all ye who enter here.” -- Dante

Here lies Hope, ashen and fallen on the ground, dashed to pieces by the expectation and grandeur of things unseen yet believed, cruelly thrown upon the rocks at the foot of the bluff Suffering on the south side of Mount Zion. Hope -- a victim of assassination at the hands of Brokenness, Darkness and Heartache -- is survived by two sisters: Faith and Charity, though without Hope, their own demise is surely imminent. This day is a sad day. Hope has fallen.

Valentine’s Day 2003 found my wife and I weeping together. She walked into the living room where I was playing with our two children, tears streaming down her face, hand extended, giving me a urine soaked stick with a plus sign on it. I rose to my feet, held her and we cried together.

It’s a shitty way to begin walking the path to the birth of your third child. Most couples treasure the moment, rejoicing in the gift they are about to receive. Don’t misunderstand, these feelings of sadness and worry had nothing to do with the baby. We love our kids and always wanted to have three children together. The thing about it was the inexplicability. The pill and condoms, two tried and true methods of birth control, employed religiously, and here we were again. How could this have happened? What was going on? Why would God allow this? We didn’t go out for Valentine’s Day that year. It was a hard day.

And thus a new journey with Hope began.

Genes run in pairs, seems they like to be together. Deoxyribonucleic acid forms itself into parallel strands that shape the building blocks of an infant. These strands are composed of genes and chromosomes given to the baby by his mom and dad. In regard to the mutated cystic fibrosis gene, two of these mutated genes need to find one another in the DNA strand. It’s a one in four chance. My wife and I are each carriers, which means we have one normal gene and one mutated gene. The normal gene is always dominant, thus carriers of cystic fibrosis do not actually have the disease. But, when two of these healthy carriers find one another and conceive a child, they pass on one of these two genes to their child, the normal one or the mutated one. Therefore, mathematically speaking, there is a 50% chance that mom and dad will pass on the mutated gene and a 25% chance that two mutated genes will actually find one another. But when it happens just so, then two mutated cystic fibrosis genes find one another and the baby has cystic fibrosis.

There are a lot of diseases that work this way, cruelly beating odds that should lean in your favor. I am fully aware that we are not alone in our pain, and I’m certainly not trying to invite anyone to my pity party. But on any level and with any disease, it is just a uniquely different story when it is your baby, and it is deeply wounding when you allow your mind to wander to the fact that on some sick level, you did this to the helpless innocent you love so deeply. And it hurts in places of your heart you did not know existed.

Our daughter Christy had been diagnosed with CF six months earlier, when she was five months old. It was six months of hell. In and out of the hospital for weeks at a time, painfully invasive procedures, ungodly medical bills, tears that would not stop, always worried and scared. We almost lost her at one point. CF was a monstrous poisonous serpent that had invaded our home and defiled the sanctity of our family and there was nothing we could do about it. We felt completely powerless.

It wasn’t hard for us to decide not to have more children. It wasn’t that we did not want more kids, it was just that we did not think we could handle it if CF were to rear its ugly head again. We also felt it was a responsible choice for our children. We did not want to afflict another child with this disease.

The pregnancy progressed normally. We recovered from the initial shock and fear, then began moving forward in preparation for the baby. Our friends and family joined us in that strange juxtaposed place of excitement and worry. When people asked us what we were feeling in regard to the possibility of CF, we just said, “We are clinging to Hope.” We expressed our deep fear to our counselor and asked her what we should be doing. She simply said, “We wait, we pray and we Hope.”

Sometime around the middle of March is when insomnia found me. I would lay awake for endless hours, my mind playing the scenario of two kids in the hospital, two small pharmacies of medications in our kitchen, two sets of suffocating bills, two times the amount of therapies, two caskets in the future, two funerals of two of my own kids that I would perform. I would beg the morning to find me quickly and grace me with the busyness of my day only to return to the same dark ritual twenty-four hours later.

And then Hope arrived.

In late May, we had decided to have an amniocentesis, an examination of the baby’s amniotic fluid that would tell whether or not CF was present. The test was set for early June. This was my call, a request to which my wife graciously consented. I just had to know, and in knowing, maybe I could get some freaking sleep by simply coming to terms with the reality that was put upon us.

Two days before the amniocentesis, we had our twenty-week ultrasound appointment – my favorite part of the pregnancy. It is a magical experience seeing your collective seed forming inwardly. Tiny hands, feet, eyes, limbs and a heart beating a hundred miles an hour in expectancy of living the life outside the womb that has begun inside. With each of our kids, we asked to know the sex of the baby at the ultrasound. Our third child was a boy and we already knew his name: Benjamin – son of my right hand.

That night, God put me to sleep and gave me a dream. In my dream I saw Trey, our oldest son, and Ben playing together. In my dream, Trey was around twelve years old and Ben was about nine. They were playing with a ball together in our backyard and I was watching them from the large plate-glass window in our living room. In the middle of their play, they both stopped and looked at me. They walked toward one another and stood together, Trey’s arm around Ben. They were beaming, so proud to be brothers and proud to be my sons. And they were strong and healthy. And I knew Ben did not have CF.

The next day I called the doctor and cancelled the amniocentesis. Hope had spoken, there was no need for the test.

The rest of the pregnancy was wonderful. I slept like a baby and my wife positively glows when she is pregnant. Through the course of the next five months, Sheri and I experienced huge amounts of healing in our marriage and our personal relationships with Jesus. It was a beautiful five months together filled with Faith, Love and Hope. But most of all, Hope.

Hope was a wonderful companion. I didn’t realize how much I was growing to love her and how high my opinion of her had become. I also did not realize that Hope not realized is Hope that continues to grow and climb higher and higher. Which then means that if at some point she falls, I am destroyed. Through those five months I kept trying to keep myself plugged into “reality”. “There is a possibility Ben will have CF”, I told myself. “Don’t be disappointed if it happens”, I would say. But Hope was so much more lovely than my attempts at reality and I loved climbing higher on the mountain of promise with her. I didn’t realize how high we had climbed.

Ben was born November 6, 2003. He weighed nine pounds, seven ounces – the exact same weight as both his brother and sister. Ben was strong. He had healthy lungs and was a quick eater. CF kids are generally weaker and smaller – all that Ben was became more evidence that what Hope had said was true: Ben did not have CF. I almost told the doctor not to worry about the blood test; I was that sure. But they took some cord blood and sent it off to the lab.

Unbeknownst to us, our doctor called in a favor to a friend of hers at the lab. The gene test normally would have taken a week. The next night though, she came to see us. It was Friday, a little over twenty-four hours after Ben’s birth.

I’m pretty good at reading people, and when she came into the room, I knew what she was about to say. My heart dropped through my stomach, my mind began to reel, and my world began to crumble. I beat her to the punch.

“Ben has CF, doesn’t he?”

Her eyes filled with tears. She nodded gently and her voice broke.


I tried to tell her the lab was wrong. I was so adamant that I had her doubting what her eyes had read. She read the report again, and said the same thing. Sheri started to cry. I just sat there. We thanked her for coming and for her love for our family, then she left.

I thought it was just us in the room. Then I heard the door close again. Now we were truly alone. Hope had fallen and left us to the Darkness.

So mourn, my friends. Feel your grief. Experience your darkness. Drink your sorrows. Consider your state. Suffer your pain.

For Hope rises and falls, rises and falls, rises and falls…

But she always rises again.

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