The Answered Prayer

Shattered Dreams! My baby was born with Down Syndrome

The dimly lit room did little to help lighten my spirits. I was filled with a dread that I could not name. Something was wrong with him, but what? He looked fine. He had a strong cry. He was pink and looked the picture of health. But he wasn’t. They wouldn’t tell me that though.

“Is he okay?” I asked hesitantly. The specialist walked right up to the delivery table where I lay and looked me in the eyes.

“Yes, Mrs. Rogers, he looks good. We still have to run some tests, but we have ruled out the worst-case scenarios.”

I loudly exhaled the breath that I had been holding. Hours had passed since they had taken my son from me to run their tests. Why haven’t they brought him back? I wished that my husband was here with me, but he had to go home to be with our two little girls.

“Where is my son?” I asked each nurse that I saw.

“He is fine, Mrs. Rogers. He is in the nursery. We will bring him to you shortly.”

But they didn’t bring him to me. I was so cold that I trembled and shook. Something is wrong! Where is my baby? I spent those hours saying endless prayers.

“Please Lord, let my son be fine. I will be a better person if you just grant me this one request.”

Later that morning the Specialist walked into my room. She looked as if she had had a long night at the hospital. Her head was lowered as she slowly walked over to my bed and gently sat down next to me. She took my hand.

The sun went behind a cloud at that very moment and the room was suddenly engulfed in shadows. My skin grew clammy, and the lump in my throat made it nearly impossible to swallow.

I attempted to slow my breathing as I looked into her eyes, and then I waited for her to tell me what I already sensed to be the truth.

“We ran our tests and I’m sorry to have to tell you we have confirmed that Tommy has Trisomy 21,” she paused before she added, “Down syndrome.”

The room began to spin, and my eyes went blurry as the tears welled up from the core of my being. She continued to speak to me in a very soft voice, but I could hardly hear her. It was as if she was suddenly far away. What is she saying?

“… Down syndrome is a genetic disorder. Tommy has three of the 21st chromosomes instead of the usual two, receiving an extra one from either the egg or the sperm during conception….” I tried so hard to focus on what she was saying, but her words sounded garbled, and I couldn’t understand her, “…Many babies born with Down syndrome also have heart and intestinal problems, but Tommy does not have these issues. His heart is good and strong. Physically Tommy appears to be in perfect health, however, he will be developmentally delayed. He will learn slower than the average child, but you and he will have access to special education teachers and other health professionals who will help Tommy develop to the best of his ability.”

With that said, she handed me a stack of pamphlets about Down syndrome, then she stood and slowly walked away. She had just confirmed that my worst fear had come true, my baby had a disability. I felt shattered. “How am I going to survive this?”

Over the next two years, each day rushed by in a whirlwind of activity. There were so many professionals traipsing in and out of my house on a daily basis: doctors, occupational therapists working on Tommy’s fine motor skills, physical therapists working on his large motor skills, speech therapists working on his articulation, and special education teachers exercising him and teaching him to do the normal things that other children learn to do on their own.

There were many people telling me how to raise my son, how to play with him and what is best for him. I was overwhelmed with the amount of time and energy that having a child with a disability required. I still had two little girls who also needed their mommy. I felt like I was neglecting them because every day was so focused on Tommy. This unbalance of attention became evident to me on the day that my young daughters sat on the floor with their dollies.

“Rebecca, Rosie, what are you doing?” They had a blanket laid out between them and baby toys and baby dolls strewn about the circle.

“We are playing Baby Group mommy.” I was shocked and touched at the same time. My little girls were lovingly imitating Tommy’s teachers and therapists, interacting with their baby dolls just as they had seen these specialists interacting with their baby brother in his Baby Group. This type of activity had become so normal to them that they chose to play “therapist” rather than “house.”

“Mom, I feel like such a horrible mother.” I cried into the phone one night. “I love my Tommy, but I am so angry at God for allowing him to have Down syndrome! I feel like I am being punished for something I did, that Tommy has to pay for my sins. I am his mother, and I should have been able to prevent this!”

I was hysterical at this point, sitting in the dark and sobbing uncontrollably. Huge tears were rolling down my checks, falling onto my nightgown. My mom had heard this all before and felt helpless in her attempts to comfort me. No matter how hard she tried to help in the past, I remained inconsolable. She did the only thing that she could, she listened to me and she prayed.

“Renee, you did not do anything wrong! God does not work that way. No one is being punished! You are a good mom!!!”

I could hear her sigh. I knew that she wanted to help me. I was emotionally stuck and drowning in guilt and grief. And I was taking everyone else down with me. I didn’t know what to do anymore.

“I know, Mom” I sighed, attempting to calm myself. “It’s just that every time I look at Tommy, I see a label across his forehead that says ‘I have Down syndrome’. When I hold him, when I play with him, when I talk to him, I don’t see my son, I just see that label! I am aware of what he is learning, and what muscle groups are being exercised, every time I interact with my son. This game works on fine motor skills, and this game works on eye-hand coordination, while this one is exercising his large muscle groups, and sign language games work on articulation and communication. I never get to just ‘play’ with my son! I feel as if I have become his therapist and teacher instead of his mother!” The tears started falling all over again as I felt my heart breaking once more.

This was a conversation that I have had with my mom many times over the past two years. She was really the only one I could talk to about it. My husband was in denial and acted as if everything was just fine. I really resented the way he seemed to not even notice that Tommy had Down syndrome.

“Sure, that’s easy for him,” I would think, “his life hasn’t changed! He isn’t the one that has to take Tommy to therapy and school and to the doctor’s office all the time. Sure, he loves Tommy, he plays with Tommy, but I am the one who has to do all of the extra work!!!”

I was jealous of my husband’s ability to accept Tommy just as he was, and disgusted at my lack of ability to do the same. When James played with Tommy, he just played with him. He didn’t think about teaching him a skill, he just enjoyed his son. His unconditional acceptance of Tommy made me mad because it forced me to accept the fact that I didn’t even see my son when I looked at him, I only saw the Down syndrome. James accepted Tommy exactly as he was. I didn’t.

“God, please help me to love Tommy. Please open my eyes, Lord; I want to love my son… Please…. Amen, “I cried as I slowly opened my eyes. I prayed this same prayer every night.

“When are you going to answer me, Lord?” I whispered as I climbed into bed, hoping that Tommy would sleep through the night. “This is all so unfair. Why did I have to be the one to get the child with a disability? What did I do to deserve this? What did Tommy do to deserve it?” I wanted to know.

After what seemed like hours, I finally fell asleep.

….“Mom, you will never believe this”, I nearly shouted into the phone. “I just read about a new operation that has been approved that can surgically remove the Down syndrome from Tommy!”

I was so overwhelmed with excitement that I could barely contain myself.

“Yes, I have already called and set it up. I am taking Tommy to have the surgery next week. I can’t wait Mom; we will finally have our normal little boy! Tommy will be the Tommy that he was supposed to be!”

The room was suddenly engulfed in a bright light. I took that as a sign that this surgery was a gift from God. “We are so lucky,” I sighed to myself contently.

“Okay Tommy, be a good boy,” I said as I laid him on the gurney a few days later. “These nice doctors and nurses are going to take good care of you. Mommy will be right here waiting for you when you wake up. I can’t wait Tommy; we will have so much fun when this is all over. We have so much living to do. Just you wait and see.”

Tommy’s eyes beamed up at me. I could feel his complete trust and unconditional love.

“It’s funny,” I thought, “I have never noticed that before, the way Tommy looks at me.” I wondered if it was because I was so angry all of the time that I couldn’t see anything beyond that.

“Oh, well, that’s okay,” I comforted myself, “I won’t be angry ever again. I promise. Once this surgery is over, I’m going to finally get to play with my son!”

I waited for what seemed like an eternity in that hospital waiting room. I was all alone, because my husband refused to come with me. He didn’t want Tommy to have the operation. He loved Tommy just the way he was…..

Eventually a nurse walked into the waiting room and announced, “The surgery is over Mrs. Rogers. We were able to successfully remove the Down syndrome. Here is your son, here is Tommy.” I had been so absorbed at the prospect of no more Down syndrome that I hadn’t really looked at the little boy in her arms.

“Tommy, hi honey, it’s all over, you are all better now,” I whispered in my most comforting motherly voice.

Tommy didn’t move. He didn’t do anything. He just laid there with his head on the nurse’s shoulder, breathing and staring out into space. I looked into his eyes and my world started to fade away. Tommy was awake. His eyes were open, but they were expressionless.

“Tommy honey, its mommy,” I soothed. I waited for him to focus on me, but he didn’t. He just kept on staring at nothing. It was at that very moment when I realized, Tommy had the eyes of a stuffed animal. They were the eyes of the walking dead.

“Oh, Dear God,” I screamed, “What is wrong with Tommy?”

The nurse did her best to console me. She explained that while they were able to successful remove Tommy’s Down syndrome, the surgery disturbed other areas inside of Tommy. The Down syndrome was an intricate part of who Tommy was. Removing it also removed these other aspects of Tommy.

My heart began to beat out of my chest. I could no longer breathe. I don’t know where I was going, but I felt like I was drifting from my body and floating down the corridor. I could hear someone screaming and crying… “NO… NO… NO… NO…” She sounded very far away. I didn’t realize that those moans were coming out of my mouth.

Nurses and doctors were there. I could see them. They were trying to help me, to comfort me. But there wasn’t anything that they could do. I had made the worst mistake of my life and there was nothing that any doctor could do to fix it. I had given my permission to these doctors to remove what I had considered to be a major defect from my son. The same defect that I could never see past. But what I hadn’t realized until I looked into my son’s eyes in that moment, was that when they surgically removed Tommy’s Down syndrome, they removed Tommy’s soul too. Without the Down syndrome, there was no more Tommy.

I grabbed my son’s limp body and cradled him in my arms. His eyes were open, they were looking at me, but there was just nothing there. “My son is gone. My Tommy is gone. Tommy wake-up,” I wailed!

“I am so sorry Tommy; I am so sorry! Mommy didn’t know, I didn’t know.” At that moment, I would have done anything to undo what I had done. I wanted my son back, just the way he was. I wanted the Down syndrome back, because that is what made Tommy the special little boy that he was: the boy that I hadn’t appreciated, the boy that I thought needed to be fixed.

“Please come back to me Tommy; please come back to me…,” I kept crying, rocking, and begging. I kept wishing that I could go back just a few hours, to the moment when Tommy sat there on the gurney, beaming all of his love at me. He trusted me, and this is what I did with it….

…. I awoke on a gasp and sat straight up in bed. I was drenched with sweat, and I was breathing so hard that the room began to spin.

“What was happening? Where is Tommy?”

A sudden awareness came over me, and I realized that I had been dreaming. It had all been a very, very bad dream.

“Tommy,” I screamed as I jumped out of bed. I nearly scared my husband half to death, but I barely noticed because I was running so fast to Tommy’s room.

“Tommy,” I shrieked again as I swung open the door.

And there he was, my precious boy, right where I had left him, safe in his crib. He just sat there happily playing with his toys and babbling to himself.

“Maaaaa,” Tommy said as he showed me his toys, a big smile on his face.

“Oh Tommy,” I sobbed as I swept him up into my arms, “Mommy loves you so much!” I held on to Tommy so tightly that he began to squirm. He looked up at me with a puzzled look on his face. Then he just smiled and laid his head on my shoulder with a sigh.

“I am sorry, Tommy. I am so sorry that I was mad, and that I was not a very good mommy. You are my big boy. You are my special Tommy, and I wouldn’t want you to be any different!”

From that day on, I never again saw that label across Tommy’s forehead, reminding me that he has Down syndrome. He had finally become just Tommy, my son, perfect exactly the way he is.

The memory of that dream follows me every day of my life. It changed me. It actually changed my entire family, because I became happy again. I laughed and I loved, and so did they.

I went on to become involved in the Down Syndrome Association, a group made up of families who have children with Down syndrome. I volunteered to go to hospitals and be a friend to other new mommies who had just gotten the devastating news that their baby had Down syndrome. I knew how they felt, and I wanted to help them through the grief process. I shared with them my experiences, and offered my friendship, while I walked alongside them on the journey that all of us mommies go on when we give birth to a baby with a disability.

I later enrolled in college and became a special education teacher. Now I could be one of those professionals working with the little boys and girls of other mommies who are trying to make sense of this new world that they are living in.

“Where would I be without my Tommy?” I often ask myself. I don’t have an answer to that question though, because I really can’t imagine my life without him. The day that Tommy came into our lives, the day my world tilted, was the day that I received a miracle: a blessing. I was given a living example of what true unconditional love and acceptance looks like, and it looks just like Tommy.

If you resonate with my story and would like to join me on my recovery journey, please SUBSCRIBE https://medium.com/@se/subscribe and FOLLOW. I would be honored to join you on your journey as well.https://medium.com/@shaylarenee/subscribe

If you feel so inclined, please read my article for at least 30 seconds so that the system acknowledges you. I would also love to read your comments and greatly appreciate your 👏 claps.