When I was pregnant with my first child, I would spend hours walking up and down the aisles at Babies”R”Us or Target picking out the perfect curtains, lamps and furniture for my new baby’s nursery. As I was intently comparing designs and colors of the most precious little blankets, I could not help but hear my husband’s voice in the back of my mind. “What are you doing? Don’t you think you should wait?” Then a conversation from a couple hours earlier unfolded in my mind. Impatiently I had said, “Wait for what? I don’t care what the doctors said; I’m getting ready for my baby. I know the Lord will work it out.”
I just could not wait to see my beautiful baby boy wrapped in the precious light green and yellow blankets I had so carefully selected just for him. I was already in my mid-thirties and anxious to start my wonderful journey as a first time mom. During one of my routine visits to my doctor, I was given some concerning news. My doctor told me that there was something wrong with my unborn child and that I needed to see a specialist.
After many test and ultrasounds, I was given the most devastating news an expectant mother could ever receive. I can still hear those words in my mind hitting me like a semi-truck, “Your baby is not viable; we recommend an abortion.” I then found out that my twenty-one-week-old unborn baby boy had a rare and lethal genetic disorder called Campomelic Dysplasia. According to the specialist, my situation was hopeless because there was little chance that my baby was going to be born alive. My doctor explained that most babies that are born with this syndrome die from severe respiratory problems.
As I returned to work, I tried to regain my composure and smiled at my students as I walked into my bright and cheerful special education classroom. How could this be happening to me? That was the only repeating thought circling my mind. My worst nightmare was coming true. I might have a child who is medically fragile of my own, that’s IF he lives. The doctors kept insisting that I terminate the pregnancy, stating that I would not be able to handle the demands and the stress of taking care of a child who is medically fragile. Listening to my doctors made me realize that I did not want to terminate my pregnancy. We decided to put our baby in God’s hands and let Him decide his fate.
Months later I was sitting in the dark listening to the rhythmic humming of my son’s ventilator, grateful to finally be home after a very difficult and traumatic six-month stay at the hospital. Lot was born alive but with many complications. His severe bronchial and tracheal collapsing made it impossible for him to breathe on his own. He needed a tracheostomy, a tube that helped keep his airway open, and the help of a ventilator and oxygen just to survive. The doctors expected him to die soon and decided home would be much more comfortable for him. Nurses were helping out with his care day and night. They helped us make sense of all the tubes and equipment that crowded what used to be a baby’s nursery.
Lot was sent home from the hospital with strict orders to be kept sedated in his crib. I was told by his doctors not to mess with the baby because he needed to rest. Those orders went against everything I knew as a special educator. I knew Lot was going to be developmentally delayed because of his medical problems. Early intervention in the form of speech, occupational and physical therapy was critical in helping my son reach his maximum potential.
As soon as I could, I threw away the sedatives and set up a daily schedule that was broken up into thirty-minute increments. Working with Lot’s therapists, we were able to set goals for him in all three areas. I would start my day by taking Lot out for a walk around the neighborhood, and next I would work on oral motor skills. I would work on stretching his cheeks and lips every day three times a day, and stimulating his tongue with daily exercises and by letting him taste different foods. This was so important in helping my son learn to eat and speak.
The next activity was focusing on gross motor skills. We played ball on the mat and I made sure that Lot had plenty of tummy time. We played with all his toys focusing on neck and back strength as well. Bath time was next, followed by a long nap. During this time I would fix dinner, taking advantage of the home health nurse that would help me take care of his many needs. When my son would wake up from his nap, I would do his oral motor exercises and spend some time working on his fine motor skills. This included playing with toys and different textures like play doh, pudding or shaving cream. He also enjoyed splashing and playing with his plastic sea animals that I put in a small tub for him. Then I would end the day with some quiet story time. At about this time my husband Roger, would come home from work.
This was the schedule that I followed, day after day, month after month, year after year. Nothing else mattered. Lot was my priority, not household chores that never end.
I never had time to clean my house, scrub toilets or wash the stacks of dirty dishes in the sink. Laundry only got done on the weekends when my husband was able to help me fold and put up all the clothes. When my hubby would come home from work, he would watch Lot while I quickly ate dinner and got ready for bed. Roger would also put Lot to bed and do the nighttime routine, which included cleaning Lot’s trach and G tube. My husband would also give Lot a breathing treatment, brush his teeth, and quietly rock his baby boy to sleep while he watched TV. Honestly, I do not know how I would have survived without my husband’s help and the help of our skilled nurses. Without them, we would not been able to unwind and rest at night.
With time, Lot was slowly improving. He was taken off the ventilator at the age of three. He was finally able to roll around and crawl untethered to a machine. During this period, I focused all my efforts in helping him learn to crawl and then walk. I remember grabbing him from the back of his shirt and making him practice his walking all day every day. He finally reached this goal by the time he was five years old.
Months after finally learning to walk independently, Lot had his tracheostomy removed. His life was so different from that point on. Not having to suction his trach every few minutes was so liberating!
Lot no longer resembles that fragile little boy in a wheelchair hooked up to oxygen and a ventilator. He enjoys running around chasing his little brother and riding his batman tricycle around the house getting into all sorts of trouble. He is even playing baseball with the local special needs baseball team. I thank the Lord for having mercy on my Lot and for giving him such a happy, healthy life.
I finally decided to send my big boy to school. He was ready to leave the house and meet new friends and learn new skills that I cannot teach at home. I was ready for a change as well. I guess all these years of homeschooling and being a slave to such a demanding schedule has worn me down.
I am really looking forward to a little free time, stacks of laundry and a sink full of dirty dishes.