Looking at the brighter side of life

My son, Amir, has taught me many valuable life lessons

By Jan T. Skoby

I was in my early 20s on the way to the doctor’s office hoping he would tell me I was pregnant. The results were in, and we were going to have a baby. I still remember that overwhelming sense of joy like it was yesterday. Nine months later I was rubbing my stomach wondering how I was ever going to let this little human being move out on his/her own.

I had already bonded with this little one who was gently sweeping their hand from one side of my belly to another and giving me little reminder kicks that he/she was there. I couldn’t imagine a day when I would have to leave them at college or a day that they would tell me it was time to move out of the house. I thought about my mother and father and how they raised and said goodbye to six of us. At that moment I understood why there was always a tear in my mother’s eye as we got ready to leave after a visit.

A few weeks later, my husband and I scurried to the hospital to become parents for the first time. The nurses said I was going to give birth to a “little moose.” I was a bit nervous to hear that and wondered just exactly how big the little moose was going to be. A day later, my son, who weighed 10 pounds 5 ounces, was born. It was the happiest day of my life to look at his precious little face. But something wasn’t right. The nurses and doctors seemed to be scrambling. Nurses I had not seen before came to our room. I finally asked, “Is something wrong?”

One of the nurses said our baby had characteristics of a child with Down syndrome but wouldn’t know for certain until the test results came back. I was in disbelief. Many thoughts raced through my mind. There must be some mistake. I was young, healthy, ate all the right things, read all the right books.

The next few minutes felt like hours. I heard faint cries and knew that was his voice. I followed the sound of his cries and found him encased in an incubator with tubes and wires covering his body. I ran to the nurse and asked what was happening. His body turned blue and they feared he had a severe heart condition. At that very moment all nervousness about Down syndrome disappeared. I just wanted my baby to survive. He was my son and I had already fallen in love with him. No diagnosis was ever going to change that. He finally stabilized, but his heart condition was more than the local hospital could handle, so I said goodbye to him as he was whisked away by ambulance to a hospital out of state. I wanted to travel in the ambulance with him but they feared he might need medical intervention during transport and needed the room to work on him if necessary, so my sister, Karol drove us to the hospital.

When he was two days old, we met his cardiologist. Our son, Amir was diagnosed with endocardial cushion defect. It was a good thing he was born as a “little moose” because he lost weight expending more calories to eat than what he was actually consuming. His little heart was working very hard. He was so tiny, I had to wake him around the clock to try to get him to eat and add calorie enhancers to his formula. It would take him about an hour to finish 2 ounces.

He was 4 months old when he had his first cardiac surgery. A few months after the first surgery Amir became very ill. We were at his cardiologist’s office when his health rapidly declined. He spiked a high fever and was sent to NICU. He needed another surgery because the first one was not as successful as they hoped it would be. This surgery was risky and his chances of survival were not in his favor.

I remember someone saying that I needed to prepare myself emotionally in the event he did not survive. Prepare? Are you kidding me? I couldn’t even bring my mind to that place and refused to do so. Amir was a fighter and very strong-willed. I was determined to believe he could make it. When the nurse came to get him for the surgery, I felt paralyzed. My heart ached. I didn’t want to let him go. Every muscle in my body was tight. I felt like a novice skier ready to descend on an expert slope. I remember looking at the nurse and my eyes filling with tears. In those few short seconds I felt fear, anxiety, desperation, anger and helplessness. It was as if I was going though the entire circle of grief in a few short moments. I gazed back at Amir. He was looking at me with such trusting eyes. I smiled at him and told him I would see him soon. My heart ached as I watched the nurse walk away with my son in her arms.

After I could no longer see the nurse, I ventured down to the surgical waiting room and talked with the other parents there. It was humbling listening to their situations. As depressing as our conversations probably were, I found comfort in these discussions. Approximately eight hours later we heard that Amir made it through surgery. He had a difficult time transferring from the heart/lung machine but the surgery was successful.  He still needed to take three medications in the morning and evening but he was stabilized and began to grow. Whenever I begin to feel overwhelmed with simple day-to-day tasks, I remind myself about the conversations the other parents and I had that day in the children’s hospital waiting room. It really puts things into perspective and helps me to prioritize.

Four years and a few states later, my husband and I parted ways. Amir and I moved back to NH, where he enrolled in preschool and I re-entered the workforce. At home, Amir began demonstrating his literacy skills by recognizing letters in the alphabet. Although I tried to share Amir’s new skill with the school it would not be until a few weeks later that one of the teachers actually witnessed it.

One afternoon his preschool teacher very excitedly approached me when I came to pick him up from school. She brought me to the door, pointed to the alphabet poster securely fastened on the outside of the door, looked at Amir and said, “Amir point to the letter “B.” Amir pointed to the letter “B.” She repeated this several times with various letters and Amir pointed to the correct letter with every request. She was so excited that I did not have the heart to tell her he learned this skill several weeks ago. It really didn’t matter when he obtained this skill, the teacher was excited, Amir was happy and I was ecstatic that someone finally saw his potential.

On a warm summer evening when Amir was about 4½ years old, we were playing in the grass chasing fireflies. Amir started jumping, looking up at the sky saying, “Moo.” I looked up to the sky, saw the full moon and thought he was trying to reference the nursery rhyme, “The Cow Jumped Over the Moon,” so I began to recite the poem. He sighed and shook his head “no” rather adamantly, took my hand, reached his other hand up to the sky, jumped and again said, “Moo.” “Jump for the moon?” I asked. He smiled from ear to ear knowing that I finally got it. What a site to see, the two of us on the front lawn reaching our hands up to the sky and jumping for the moon. This experience inspired me to write a poem appropriately name, “Jump for the Moon.” It was published in a book called, “You Will Dream New Dreams” several years ago.

Over the years Amir has taught me so much about what is important in life. One late spring afternoon we were outside playing and talking with some of the neighbors. It was time for us to make dinner. I was thinking about all the things I had to get done before the end of the night and was distracted by these thoughts. Instead of coming toward the door, Amir started running around the yard, pulling up yellow dandelions. I hurriedly told him again it was time to go in. He did not falter. He continued to pull up these yellow dandelions. I paused, turned around to see him smiling from ear to ear holding a big bouquet of yellow dandelions out in front of him. He ran toward me with this beautiful bouquet. My eyes filled with happy tears as I bent down to take the dandelion bouquet from his hands.

Even to this day, he looks for the first dandelion of summer and picks it for me. Who knew weeds could be so beautiful? The world is such a beautiful place through his eyes.

There is now an interesting twist to our dandelion memories. Once a week he visits a child-care center during circle time and reads a story to the children. Amir very much enjoys doing this and the children are quite fond of him. Amir and I were talking about his day and he told me that one of the children in the daycare center gave him a yellow dandelion. He said the “little cutie girl” smiled and handed the yellow dandelion to him. I asked how he felt about that and he said, “pretty good” (with a smile that could melt the artic). I was so glad he had the opportunity of experiencing what that innocent beautiful act of giving felt like.

There were so many wonderful days in raising Amir that it has made the tough days bearable. I remember one of his teachers saying to me, “How do you do it? I don’t know how you do this all on your own.”

I thought about her words and honestly couldn’t understand why she would ask such a thing. It was so odd for me to hear. I just looked at her with a puzzled gaze and said, “He is my son.” Yes, there are challenging days but the most challenging days are when people don’t see his potential, when others look at him and instantly judge him, when people don’t take the time to listen, when people completely misunderstand him.

Yes, there are days that you feel like staying in because you just can’t take one more stare or one more rude comment, but those days are few. I admit each time I heard someone put a limitation on him, it gave me energy to go the extra mile to help Amir accomplish anything he set his mind to. If Amir said he couldn’t do something I always told him that world was not in our vocabulary. It almost became a game between the two of us. He would say, “I can’t!” just to hear me say, “What?? What did I hear you say…can’t is not in our vocabulary!” It also helped if I whispered, “You can do it, you can do it, never give up, never give up” while he was studying or attempting to complete a difficult task.

Amir is now a senior in high school. He is involved with the Future Business Leaders of America club at his school. He serves as the Vice President of the Relations Group that meets monthly in Concord and is also becoming involved with the Young Adult Self Advocacy Group of People First of NH. He is a graduate of the UNH Institute on Disabilities Youth Empowerment Series. He is living one of his dreams of public speaking and has presented on a panel about his business at the Mount Washington Hotel & Resort for the annual NH Family Support Conference, presented in a workshop at the Boys & Girls club in Milford and presented at the Direct Support Professionals annual conference in Bartlett.

Last year he started his own business, AB’s Pet Care Service. He was involved and helped in every step from constructing the business plan, including market analysis and research, to helping create an invoice, pricing and business cards. It was a long process and took several months to get started, but it was worth it. We received help from the Bureau of Developmental Services, Gateways Community Services Dream Partnership Program and S.C.O.R.E. Amir takes care of various animals while their other family members are on vacation, away for the weekend or just the day. He has taken care of dogs, cats and birds. He is definitely in the right business because he has a gift and an unspoken connection with animals.

Yes, the journey of being Amir’s mother has been and continues to be remarkable. I am so fortunate to be able to share life with him and will blissfully continue to learn the lessons he has to teach.

Jan Skoby began her career in the human services field in 1988. In 1990, her career focus changed to developmental disabilities. She has held various human service positions and has also served on her region’s Area Agency Family Support Council as Co-Chair. Jan currently works with the NH Department of Health & Human Services as the Administrator of Training & Education for the Bureau of Developmental Services.