This is a one of a series of chapters from my book about life with our special-needs daughter, Catherine.
Considering Options?
Saint Ann’s was one of a number of hospitals in the Columbus area under the influence or direction of the Catholic Diocese of Columbus and later Trinity Health. Founded in 1908 as an infant “asylum” and home for unwed mothers it grew over the following century even expanding in 1972 to accept its first male patient!
It was a sunny but cool spring day in Ohio. If it’s not raining, most spring days are like that here. Old Man Winter was slowly but reluctantly releasing his grasp, still claiming dominion over the morning, evening, and night.
As I sat in my 2005 Chevy Malibu Maxx, I thought of the past 7 years Nicole and I had been married. After meeting on the internet in late 1998 and marrying in August of 2000, we’d begun our little family. Yes, in that order. I know, we were a little crazy. Something else that’s crazy, we didn’t kiss, not once, until Fr. Michael said, “
you may now kiss the bride.” I haven’t stopped kissing her and have no intentions to do so until the Lord says, “it is enough.”
We started in a one bedroom apartment. The one bedroom wasn’t much bigger than our California King bedroom set that sat upon a Devil’s Food Cake-red shag carpet. Seriously, who invented shag carpet? It felt great on my naked feet but I thought that I should be mowing it once a week. The living room had a large fireplace that the landlord wouldn’t allow us to use. We’d burn candles there for romantic and cozy effect. The fireplace ledge was about 8 feet long, a foot high, and constructed of brick. It doubled as a place for visitors to sit and for Anthony and Christopher, our two oldest children, it was an altar for their daily play Mass. The living room had large windows on two of the walls that were closer to the ceiling than the floor. The massive maple trees just outside the windows completed the illusion that you were in a treehouse high above the forest floor. The kitchen was plain and modest. The brown flat carpet was brought to life by the lime-green kitchen cabinets. It looked like something you’d see in a magazine at the dentist office where the room looked perfect but also like no one would actually live there. The kitchen-dining room was just big enough for a tiny table, two stools, and a couple of plastic high-chairs. It also had an unopenable door in the middle of the north wall. This door led to the front of a house and the other apartment. Sometimes you could hear the folks upfront talking, dancing, partying, and fighting. I’m sure they could hear us and our noisy boys.
We spent five years in that cozy apartment until too many children and too many children with high lead levels prompted us to build a home of our own. With the help of our parents we built a home adjacent to my parents home two miles outside of town. Our new home sat on 5 acres of pasture land that was once part of a dairy farm. My parents 80 acres nearly surrounded us. This new home felt like the Biltmore compared to that one-bedroom apartment. It was the perfect place to raise 3 boys or 6 boys and 2 girls but who’s counting.
Nicole pulled into St. Anne’s parking lot and spied me soaking up the sun in my Malibu. We embraced in that parking lot and washed away the grit and grime with our tears. Tears of joy at being together. Tears of pain, knowing our child was going to suffer. Tears of fear, not knowing what lie ahead. Tears of joy again, knowing the three of us, four really if we kept God in mind, would get through this together. Hand in hand, me in my shaved head and Nicole with her tiny belly and tiny baby, moved toward the red brick building that had seen so many tears just like ours over the past one hundred years.
I don’t remember much about the doctor or nurses who cared for us there. In the past 5 hours I had gone from performing my normal duties at work to facing a life altering issue with our child. Everything was a blur. I was in a dense fog where I could barely see Nicole, only imagine our baby, and when I lost sight of them I’d cry out to God from the depths of my heart.
The nurse and doctor performed the second ultrasound of the day on my wife’s tiny belly. The steady hum of the machines was only interrupted by an occasional click-click for a measurement or when Catherine moved about and it sounded like someone was pulling a blanket over a microphone.
Healthy or not, I always hated those rooms. They seemed so cold, sterile, and lifeless, yet here were machines that could peek through flesh and view abundant life beneath the surface. The sad black and white screens and printouts were like negative images of the miracle of life. In my mind, the screens on those machines and their glossy images a mile long should be so bright and brilliant that you are required to wear special glasses to protect your eyes. “Here Mr. and Mrs. Hahn, you’ll need to wear these to protect your eyes. You’ll be viewing a living, vibrant, human life as it’s developing. It’s so beautiful it has the potential to damage the optic nerves!”
When the measurements were finished both doctor and nurse left the room so that my wife could get dressed again. A few moments later a soft rap at the door brought us out of our frightened imaginations and back to the cold dim room.
“
We’ve gotten the same results as Dr. Parker. There is something wrong with the duodenum,” said the doctor.
Nicole looked solemnly at the images the doctor pointed to and nodding knowingly. Not having any medical background or reference I felt like I’d walked in on private conversation between two scientists. The doctor, sensing my confusion and ignorance continued, “
There’s something wrong with the small intestine. It’s either constricted or completely blocked.” This made a little more sense to me.
“
It’s a congential birth defect. It will require surgery to correct and that’s not always an easy thing to do on so small of a person,” he said as he flipped through his notes. He seemed to purposely be avoiding making eye contact. I couldn’t blame him. Who wants to sit down with parents and share this sort of news?
The doctor went on, “
It’s often an indicator of Down Syndrome or other syndromes.”
My heart sank into my stomach. Down Syndrome? My child? No. What? How? That was what happened to other people. My mind raced forward to who this child was and what would become of her. I’d been raised in a culture that for the most part put people with Down Syndrome in a closet, in the darkness. They were seen with pity and nothing else. I didn’t want that for my child. This was just a simple stomach problem, right? Just a surgery, however risky, and then on with our lives, right? She’d go on with her life, running, skipping, dancing, dating, and all of that. Right?
“
We can perform an amniocentesis but there is a risk to the baby but at least it will help give you some options to consider,” he said nonchalantly. The words slapped me across the face and brought me out of my vision of the future.
Options? Options to consider? Was he implying what I thought he was implying? Was he saying that we could find out what was wrong with the baby and then decide whether to continue or terminate the pregnancy? Did Dr. Parker know that this man said these things to his patients? Did Dr. Parker have the same ideas as this person sitting before us with his mouth spewing words I could no longer hear or understand?
The demon continued, “
That vibrant, brilliant scene you were looking at through those special glasses, well, there’s a dark spot, a very dark spot. It’s a spot so dark that it may spread and make the whole scene dark and if it doesn’t, the darkness will be like a shadow for the rest of her life and yours...do you want that? We can do away with that dark spot. Yes, it will require disposing of the vibrant colors as well. Do you really want that darkness in your life? Think of the other kids, how will it affect them? It will darken their lives too you know. The choice is simple, eliminate the dark spot and unfortunately the vibrant radiant colors now, or live in the shadow of the darkness forever. You don’t want that do you? Is this what God wants? If God is so good, why would he do this, give you this darkness? You can always try again. Maybe the next one will be more radiant than this one could ever be. Eliminate it and move on…"
“
I understand this is a lot,” the doctor continued. “
It’s a lot to take in. I’ll leave it up to you. There are other markers we can look for. I’ll send my findings to Dr. Parker and you can discuss it with him. Take a few moments and then see the nurse when you are ready to go. Any questions?”
We both shook our heads, no. It was a chore to even do that. It was a feat of tremendous strength just to move a wobbly, foggy head a few inches from side to side. The doctor left the room. We held hands and listened to the hum of the ultrasound machine. The machine that moments ago peeked in on the private, beautiful life of our little girl and her development now sat and stared back at us blankly. The hum continued but the screen was dark, no glossy black and white paper spilled forth, and the dim room seemed to slowly grow darker.
Mt. Carmel St. Ann's Hospital, Westerville, OH.
Nicole and I made our way back to the parking lot of St. Ann’s Hospital. The sun was still shining. Cars and trucks sped by without a pause. The birds still sang in the few trees defiantly bursting through the pavement of the parking lot. We had just spent an eternity in that little room yet nothing outside the building had changed. Nothing outside our hearts had changed yet our whole world was changing. The earth shook beneath our feet and somehow the buildings surrounding us failed to notice.
We kissed goodbye. I went back to work dazed and confused. She drove home. To this day I still feel bad that she had to make that hour-long drive back to our home alone. After all we had been through, she had been through that morning, no one should be alone. Yet she had an hour of silence to collect her thoughts, re-imagine her dreams for Catherine, fight tears and let them flow. She made it back to our home and resumed her role of loving and caring for our family, our new family, our now forever changed family.
I went back to work. I think. I don’t remember much of the rest of that day. I remember coming home and lying in bed with Nicole. I remember seeing the crucifix hanging over the bed as it still does. That silent image that screams love, pain, suffering, and joy all at the same time. It was like looking into a mirror at this moment. I placed my head on Nicole’s bare belly and let my tears wash and water the life deep in the soil of her womb. She cried and pressed my head firmly against herself. We lay there, the three of us, four really if keep God in mind, and cried, laughed, feared, dreamed, and trusted. We trusted one another, we trusted our vows, we trusted God’s will. Later, I wrote the following for Catherine before turning in for the night.
I weep,
By your side,
Flesh separating flesh.
So close yet so far,
You and I, helpless.
You, surrounded by love,
And I too,
Though less trusting,
Help me to trust.
Let us be here together,
Sensing one another,
Praying, dreaming, hoping.
Tears wash your mother's belly,
As you, pressing my face,
Try to wipe them away.
Let us sleep until tomorrow,
A new day,
A new hope.
A kiss good-night,
For you through her.
Read the next chapter here.
Click here to read more from James M. Hahn -
Blog -
Books Check out his
ongoing memoir about life with his special-needs daughter.
Our
Giant Wall Rosaries are a perfect addition to your prayer corner, chapel, or classroom.
Your support is greatly appreciated and any gift is welcome. I'll be sure to add you to my prayer list and let you know when new books, series, and deals are available. Thank you!
God bless you - Jim Hahn
* Contains affiliate links. No, that doesn't mean that the kids should leave the room. Rather, it means that if you click on a link, and if you purchase something, I may get some financial remuneration for that click and buy. All that means is that my kids will finally get to eat, just kidding but I may get something, just so you know...
Comments