June 2003~ The Beginning of the Unexpected
I avoided glancing up at my reflection in the wall-sized mirror, avoiding the truth about to be revealed by the slender plastic wand I would pee on in just a few moments.
I washed my hands and avoided eye contact with the pregnancy test as if it were Medusa waiting to turn me into stone and solidify my fate. Focusing on the locked doorknob I counted back and forth over the calendar in my mind’s eye. There was no way. It didn’t make sense. We had just agreed that four kids were enough.
We were already struggling financially, working through a decade of marriage issues and I had just started seriously working toward developing my life-long dream of freelance writing. How would I have the energy to care for yet another person? How could I divide myself one more time to meet his or her needs and wants?
My eyes glanced hesitantly toward the small, cream-shaded stick sitting near the sink. Two, dark pink, parallel lines had already emerged. I re-read the instructions just to be sure, but I knew.
I was positively pregnant with our fifth child. Moments later, I poked my head into the hallway and made eye contact with my husband as I nodded and smiled nervously.
Nine shorts months later, Parker James was born 6 pounds, 10 ounces and 18 ½ inches long. He was smaller than my other children and within days of coming home he struggled to gain weight, had difficulty latching on, and kept falling asleep before my milk let down. I began to sense something was wrong, but I was too overwhelmed with all the tasks at hand in caring for a household of seven to acknowledge my mother’s instinct.
Then, when Parker was six-months-old, he started having breath-holding spells—a very scary, seizure-like episode where instead of crying, he would just turn gray, arch backward and pass out. By nine-months of age, he began having full-blown seizures following the spells. Any concerns the doctors or I had about his slow growth were set aside. I took note of a variety of Parker’s odd symptoms from what seemed to me like undigested food in his diapers to a mysterious rash around his mouth that seemed to come and go without cause. Every one of his doctors tried to assure me that each of his symptoms were unrelated and that he would likely ‘grow out of them’ without explanation. Nevertheless, the following year became a blur of tests, hospital stays, specialists and medications. Autism, diabetes, celiac disease and genetic disorders were ruled out.
There was no time for me to think about myself, as I still had four other children, a home and a marriage to care for. I learned to hold on another day, another week, or however long I needed to in order to face the next mountain. I learned to accept what I could not change.
Then, in October of 2005, Parker suddenly took a turn for the worst. Over the course of a few days, he had become extremely lethargic, couldn’t seem to stay awake, and would just fuss. Even though he was hardly eating, I was changing a poopy diaper every hour. I was so used to them by that point, I didn’t think they were an indication that something more severe was going on. However, I could hardly think clearly considering I was suffering from 18 months of severe exhaustion and sleep deprivation. I had also become so discouraged with traditional doctors by that time; I did not even consider taking Parker to the emergency room.
Giving it all to God
Instead, I sent out an email request for prayer to everyone in my address book. Parker’s well-being was in God’s hands, even if I or the doctors had no clue as to what was causing his health problems.
Two sleepless days later, Parker had a follow-up appointment with his pediatric gastroenterologist. Though he had his normal morning nap before his appointment, he proceeded to fall asleep on my lap in the exam room. When the doctor came in and began the exam, Parker remained sleeping. This was very unusual since even the most miserable 18-month-old would at least protest with a small whimper in response to the stethoscope. But he kept sleeping.
The doctor sat down and slowly began flipping through Parker’s chart. I could tell she was concerned, but didn’t want to alarm me. After several minutes, she asked me if I could remember why we never did a small bowel biopsy.
I shook my head in response, smiled sarcastically and said, “No. I don’t. You have done every other test.” I knew this was the last straw. If I didn’t get answers this time, I would have no choice but to do the best I could each day and give the rest to God.
Three weeks later, the final results came through. His doctor spoke slowly over the phone. “Parker has Congenital Sucrase-Isomaltase Deficiency, better known as CSID.”
I grabbed a pencil and a notepad. “Spell that for me and then tell me what it means!” My voice squeaked with relief as I jotted down the details. I didn’t care what it meant. We finally had an answer—a diagnosis!
However, the battle was only half-won. The only thing his doctor knew about CSID was that Parker couldn’t eat “table sugar or starch”. I would have to look up more information online and seek the guidance of a dietician to help curb his diet. After a huge sigh of relief, I prepared myself for the work it would entail to finally know how to care for my son. Of course, I would do whatever it took to bring him back to health. That journey, however, is another story! (See my blog at www.mykidshavecsid.blogspot.com for more details)
Turnaround and Surprise Blessing
In no time, Parker’s personality began to shine through what used to be a semi-conscious state. The more I learned how to meet his needs, the more he seemed to be a light to everyone he came in contact with. Within weeks of changing his diet, his seizures stopped and his breath-holding spells went from several per day to only a few per month until they disappeared completely just before his fourth birthday. He quickly caught up with other children his age in regards to speech and motor skills, though the thirteen months of growth he had lost would take him his entire childhood to make up.
2011~ An Unexpected Return
Over the past several years, Parker has blossomed into the active, opinionated and independent second grader he is today. He is often thought of as a walking miracle to our family and friends, as he displays an uncommonly mature unconditional love and acceptance to everyone he comes in contact with. Seeing him bring joy to others is a reward in itself for any mother.
Yet, Parker’s blessing in my life has overflown into a most unexpected area of compassion and understanding uncommon for any seven-year-old, let alone one who started out life fighting to survive.
During the past year, I have personally experienced chronic symptoms my doctor believes are related to fibromyalgia. I have to face the toll that the past seventeen years of motherhood, marriage, and the mosaic of personal pursuits have taken on my body. As I finally learn how to care for myself, Parker has had to be in the sidelines for the first time in his life. I can no longer give his health and other needs my full attention. You would think at seven years of age, the youngest of five and attached to my hip for the first several years of his life, Parker would pitch a fit and demand my attention.
Yet, out of all my children and my husband, Parker seems to have the most compassion for me.
Several weeks ago, Parker started making a point to be my helper. He would say, “No, Mom, I got that!” and proceed to help turn over a load of laundry, load two gallons of milk into the grocery cart, and even loaded the dishwasher without complaint.
Keep in mind that due to his health issues, he is no bigger than a four-year-old!
At first, I thought he was just trying to earn more allowance. Then one day, he saw me trying to carry a basket of laundry up the stairs and said, “Mommy, I got that! Won’t that hurt you to do that?”
Even though I knew he hardly had a memory of those first few years of his life, in that moment, I realized that in a small way he was returning the care and compassion I had given to him. He was eager to return it without a second thought to the sacrifice and strength it would take for him to do so. After all, the basket of laundry I was trying to carry up the stairs was bigger than he was!
“Actually, it probably won’t hurt me too much if you helped carry one side. Let’s do it together.” Holding back tears, I smiled, and offered one end of the basket to his tiny, eager, opened hands.
Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these~ Matthew 19:14