After we left the office that day in mid-December, it was all I could do to just try and wrap my head around what was happening.
I mean, just the day before all was well in my world. I was having a baby, and although I didn’t care too much for being pregnant, I was joyful and excited about our future.
Sharing this news with people was excruciatingly painful. I remember the look on people’s faces when I told them. It was almost as if I had let everyone down, and I could see the pain and sadness in their expression, while they tried to comfort me at the same time. I didn’t leave the house much, except to go to work, because I was already showing enough for people to ask me, or at the very least, congratulate me on my new arrival. Congratulate me? I wanted no part of that at the time, so I avoided being out in public as much as possible.
I remember stories that people shared of “people they knew that…”, but no one who had actually experienced anything like what I was going through. I felt so alone, like this was a road that was completely untouched, and I was expected to travel it like it had been traveled 1000s of times before me.
How was I going to travel this road? What was ahead on this road? I had no idea and was scared as hell. All I knew is that my baby was sick and I was carrying him with very little hope of survival. I recoiled, I was angry. I asked myself a million times if it was something that I did. I doubted my body, I doubted every little thing I had done, I doubted God. Here I was, on this dreadful road… a road that had no light, no traffic, no life, and yet I was here. A road that is unimaginable to most, and the darkness was unbearable at times.
Steve and I struggled with how we were going to tell Alex, but we knew we had to. We had to tell her the truth. But, how were we going to tell her that her baby brother is very sick and there’s a very good chance he will never come home? Being five at the time, it was very hard for her to understand the complexity of it all, and expecting her to be a part of this journey was a bit much, so we told her only what we felt was important at the time.
Your baby brother is sick and mommy will have to go to a lot of appointments for the next few months to see doctors that can make him all better. We knew in our hearts the chance of him “healing” was very slim, but, in showing Alex that there was hope, it gave us hope.
It was, in fact, my first glimmer of hope. When I saw the excitement in Alex’s eyes, and the very realness of her explanation of how her baby brother was going to be just fine and she couldn’t wait to play with him, dress him, teach him stuff, and take care of him, gave me just a little bit of faith that maybe, just maybe everything was going to be fine.
I am an only child, and an only grandchild, so the thought of my mom having two grand babies to love was pretty darn awesome. Everyone was excited, but in the back of our minds, we knew there were going to be so many hurdles for us to have a healthy baby. As Christmas, 2002 loomed closer, we decided it was best not to tell my grandma just yet. It was a mutual decision between Steve, myself, and my mom, and I it was the right one, for now.
My grandma was not in the best of health, and because we were not fully sure of all the particulars just yet, it was best to keep the excitement of a new baby boy, in the forefront. Plus, in doing this, it provided a way to forget about the severity of the situation, if even for brief moments at a time.
The holidays came and went, and now, January, 2003, the start of a new year, a year that would change our lives forever. The year started out with going to doctors appointments, one after another. We had been set up with a specialist in Detroit, MI, so these appointments took the better part of the day.
In the meantime, I was still teaching. It was becoming more difficult to give my best while at work, and I could feel myself struggling to stay out of deep hole I was suffocating in. At times I was happy to be with people and my students, but most of the time I wanted to stay curled up at home. Focusing on the life and care of my sweet baby boy, and having to suppress those feelings while at work, just wasn’t the best scenario for me.
After some discussion with my principal, colleagues, and a few others, I decided it was time to take a leave from teaching. On February 5, 2003, I began my short-term leave from work. I could now focus all my time and energy on what matter the most at this time, my sweet baby boy. It was a weight that was lifted off my shoulders, but the impending weight of now sitting with myself every day, knowing this was the farthest away from a normal pregnancy you could get, would prove to get the best of me.
My own health was important, especially my mental and emotional health, but I neglected myself during this time. I didn’t care about much when it came to taking care of me, and didn’t care about my own well-being. I know now it wasn't the best thing for me to neglect my own well-being, but, this road I was on was dark, and it took everything I had just to keep myself coherent from day to day. I managed day to day, and did my best to keep a level head. I had a daughter to care for. She had turned six in January and was in kindergarten.
She needed me… and quite frankly… I needed her... more than she knew.
There were days when I would drop her off at school and upon returning home, I would crawl under the covers, in the quiet house, and talk to my belly. Crying, wondering what I could have done for this to be happening to me, and at the same time, relishing in the joy that my baby was right with me, every second of every day. I could talk to him, love on him, and on some level, he comforted me. Through all the medical jargon, tests, questions, and more tests, my sweet baby boy was the one that was with me, and only me. No matter how much they put us through, we were together.
No matter what was happening in the world around us, we were together.
It was almost as if we were giving each other strength.
In one of the doctor’s appointments in January, the question (by the doctor) was brought up about aborting the baby. What? I had never thought of that. Never once. Was this even a valid question? I looked at Steve sitting there in the room, his expression told me he agreed with me. We couldn’t believe what we were being asked. I respect the doctor for asking us this question, but for us, there was never any doubt we were going to keep our baby.
We explained to the doctor that we were indeed going to keep our baby and give him every chance we could to make it. We were told it was going to be a long, tiring road of appointments, tests, possible surgery on our baby before he was born (one of the many new things we learned on this journey), a rollercoaster of emotions… and all with a small percentage of hope that he would live.
All of that didn’t matter to us. We knew we had to give our sweet baby boy every chance we could, and do whatever was necessary.
It was around this time, or maybe mid-February, that I had an amniocentesis done. If you are not sure what this is, let me tell you it is scary as hell. I had to have a huge needle stuck basically through my belly button and into the womb to draw out amniotic fluid that would be tested. The baby was being tested for other abnormalities and to ‘double check’ that he was indeed a boy. That test was now done and we waited a couple of weeks for the results to come back. He did have a genetic abnormality on one of his chromosomes, but it really was insignificant given the birth defect he had. And yes, he was indeed a boy!
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