Each of us will experience only one – or at most a handful of – moments that are truly life-changing. I know I’ve used that expression to describe everything from my favorite movies to any dessert that features chocolate ganache, but in reality each of us encounters a rare few of these opportunities in our lifetime. Mine occurred sixteen years ago.
My second pregnancy was as typical as the first and I loved being pregnant. When our precious Nicolas was born he was the completion of a perfect family. A little brother and a second son made everything seem neatly rounded out. Although he was a little smaller and was born with a few little hitches, he was the crowning addition to our family and we joyfully took him home to continue building our lives with two rowdy, messy, momma-loving little boys rather than one.
Unlike my firstborn, Nicolas required a few follow-up appointments after the hospital – “no big deal” normal things that happen sometimes with babies. At birth Nicolas had an umbilical hernia, “hip clicks”, and a tiny hole in his heart. The first specialist we ever visited was a sweet and highly respected Pediatric Cardiologist who ran tests and explained that this was fairly common. She explained that if the hole did not resolve on its own, she could fix it surgically – no big deal, she does it all the time and the babies all live happily ever after. “OK”, I thought, “this is a little trial that we must endure, but in the end everything will be perfect and we’ll be fine.” I consider myself a very strong person, and was proud to be able to persevere through this potential crisis as a calm and steady rock for my little ones and husband.
Even the healthiest of newborns require pediatric check-ups constantly. During one or two of those weekly visits I mentioned that I noticed Nicolas making a lot of gurgles and choking noises while he slept. After the doctor dismissed it the first time or two, we were eventually referred to a pediatric gastroenterologist. The second of our new list of pediatric specialists dispatched us to the radiology department on suspicion of reflux. By the end of an afternoon that had started with a routine “well-baby check-up” I was told that my Nicolas, the one with the tiny hole in his heart, had an intestinal malrotation that should be surgically corrected. The surgeon explained the entire process, anesthesia and all, and tears ran down my cheeks even while I determined to remain strong. I was proud to once again persevere through this bump in the road, and was confident we’d come through just fine and live happily ever after.
Nicolas underwent intestinal surgery at three months old, on the day of big brother Benjamin’s 3rd birthday – September 11th. His recovery was swift, and in a few days we were back on our way to normal. I wore the successful outcome and perseverance like a badge of honor – “I can weather any storm” I proudly judged of myself.
As Nicolas approached four months of age, the cardiologist reported that the hole in his heart had closed on it’s own – miracle of miracles – and surgery would not be required. Simultaneous with this positive news, I became slightly unnerved by the distinct contrasts I noticed between this little boy and my first. I began poring over Ben’s baby book of milestones as well as all the parenting books and developmental charts I could find, to try and put my finger on what was so different about Nicolas. I mentioned my concerns to the pediatrician, who scolded me for committing that motherly “mistake” of comparing my children. “No two babies are the same” she reminded me. I knew that, of course, as I’d been studying baby books every moment that I wasn’t nursing or sleeping. Another week went by and I was more convinced that something wasn’t right – again she sent me back home. My brave and strong persona was still in tact, so I worked very hard to hide my fears and suspicions. But during a moment of weakness, I confessed to my husband that although the doctors were sure Nicolas was fine, I was certain that he was not. The next morning dad was on the phone with the pediatrician, who set-up a referral visit with a neurologist – not because something was wrong, but they contrived it was the only way to help me feel better, and rule-out once a for all any problems with my baby.
The neurologist was our third pediatric specialist. Both previous experiences with this type of visit had brought difficult news, but had been issues that were now completely resolved, so our spirits were high. The doctor looked at Nicolas, ran all the neurological tests you can run on a four and a half month old infant, and determined that there was probably nothing wrong. However, he explained, “The brain is like a computer. Sometimes when there are lots of small, seemingly unrelated glitches, it can be an indication of a problem in the programming.” I experienced the concurrent emotions of both relief and alarm that my concerns may be valid. He referred us to a geneticist who would help us rule out anything serious, he was fairly sure that Nicolas was fine.
Next stop: geneticist. This our fourth specialist, was also very kind and fairly certain that Nicolas did not have any genetic disorder. She explained she’d been doing this long enough she could usually tell by observation. However, she prescribed full genetic testing for him, another rule-out scenario.
Between all the specialists visits there were a plethora of tests. MRI, EEGs, EKGs, blood screens – tests with sedation, restraints, monitors and more specialists. During all of this, my strong and courageous front was being constantly assaulted. I maintained my calm composure, but at an ever-increasing price of sleeplessness nights and a thick cloud around my heart during the day. The tests were all simple, yet the process of each was terribly distressing. I.V.’s and blood draws on infant arms are excruciating to witness; sedation has temporary but disquieting side effects; and the vision of your infant wrapped in wires, tubes and hospital gowns is dreadful. I became uncomfortably familiar with the local children’s hospital. We had agreed not to tell our family and friends any of these developments because, as the specialists had assured us, it was probably nothing. I was desperate for this all to end so we could get back to our normal lives.
Finally the appointment arrived where we would learn the results of the genetic testing, rule out anything too serious, and move on. My husband I sat together with our chubby baby boy in anticipation. The doctor was very kind as she explained very slowly in detail how chromosomes are engineered and how, in Nicolas’ case and much to her surprise, the slight variation of one of them had occurred. Each segment of every unique chromosome is responsible for different details that constitute who we are. In Nicolas’ case, the “p” segment of Chromosome 8 was duplicated on top of itself, and the tip was deleted. Then she handed us a medical journal article with a study of individuals with this particular syndrome. It was a fairly rare disorder, and the most accurate prognosis she could provided was this recent research conducted on children and adults with the same genetic pattern. I began to peruse the pages and although she kept talking I didn’t hear anything else she said. I saw words like severe mental retardation and descriptions of heart and kidney problems, absent speech, common surgeries, severe orthopedic problems and photographs of disfigured children’s faces. I kept my usual strong and composed posture through the rest of the visit but heard nothing else. My husband listened, and latched onto her disclaimer that each case is different, and just because certain symptoms may be listed in the journal finding, they weren’t guaranteed for Nicolas – his case would be unique to him. I vaguely remember that she suggested having more children so that Nicolas would have plenty of siblings to help care for him as we aged. One of the few words I heard her mention reverberated in my head as the connotations and derogatory definitions, along with childhood memories of strange faces and behaviors swirled in my mind: “Special”.
I don’t know what exactly my husband and I spoke of as we left that office. Such a heavy weight had just landed on both of us, I remember that he seemed much more optimistic than I was and that was very irksome to me. I categorized him as “in denial” and as he drove away to work, I secured the baby in his infant seat, climbed into my car and cried. And cried. There aren’t words that can fully express my emotions. In just a moment I felt the defeat of every aspiration, dream and hope a mother’s heart has for her child. The devastation in my heart mingled with the overwhelming flood of love and forceful protectiveness I felt as I looked at the precious baby in the seat next to me. One whom I always loved as special, was now defined by the word in an entirely different way.
Thus far in this process, my faith and hope in God had remained firm. I was born and raised in the church and since my first baby was born I’d had a renewed sense of God’s importance and protection in my life. Over the previous 6-8 weeks I was confident that God heard my prayers and the doctors’ reports would all be positive. Although my instinct while I drove away was to pray, I found neither the desire to communicate with God nor the words to say. At the same time, based on what that journal article said, my gut knew that God was our only chance.
Since I literally could not utter a prayerful word or even conjure a thought, I needed to find someone who could. I called our church office and my heart was relieved that my Pastor’s wife was present and available at that moment to meet with me. My puffy red eyes were evidence of my state, but as we greeted each other I again put on my strong facade and began tiptoeing around the diagnosis and prognosis. Pastor Mary sensed the elusiveness of my narration and demanded, “What are we talking about here? Give me the worst-case scenario!” I un-crumpled the tear-stained journal article from my purse and enumerated the many and severe probabilities. As I cried, she pronounced with confidence, “Well, that’s not the case for Nicolas.” She quickly changed the subject and began to share her story of a time when she was struggling physically and needed God to come through so that she could conceive. After so many disappointments and negative reports, it seemed hopeless. The point of her story was to share how that experience had taken her relationship with God to such a deeper, more intimate level. How, when doctors, friends, even your spouse can’t help, only then do you learn what it means to completely and totally surrender to God. She had learned true relationship with him. She added that she wouldn’t trade her experience, which took her to the depths of despair, for anything. She promised that I would look back on this moment as a great turning point in my life. That I would celebrate the new levels that it would take me to spiritually and personally. That my life would change for the better and that I would, like she does, one day say I wouldn’t trade the experience for anything.
I understood what she was saying, and I saw in her heart that all of it was true – for her. Pastor Mary now has four beautiful, healthy children – her miracle is undeniable. But I found the suggestion that a deeper, more intimate relationship with God was somehow a worthwhile trade-off for a whole, perfect, normal son unimaginable. Plus, honestly, I was content with my spiritual life. My relationship with God was just fine – I prayed, went to church, volunteered and gave, and He had thus far reciprocated by protecting me and my family and keeping us on our peaceful, easy journey through life. A more intimate walk with him didn’t sound appealing at all, if the price was a “special” son. She completed our meeting by praying, more for me than for Nicolas, and sent me on my way with a smile and a hug – like she knew some secret that I didn’t. I was slightly less burdened, having finally shared my fears and despair with someone, but I felt no better about the prognosis for our future.
At this moment, with the news still a few hours fresh, a seed of resentment began to grow inside my heart and my mind. I cannot sugar-coat the fact that I was really mad at God. Whatever His reason for allowing this genetic mistake to occur, it was inexcusable. I continued on as before, praying, giving, reading, participating, but all with a belligerent heart. I built a wall around those emotions, shut them away from the rest of the world and carried on…making sure I could still call myself “strong”. What I saw, with my deeply ingrained and self-righteous perspective, was a terrible, tragic mistake. There was nothing “special” about this.
Here’s the good news: That’s not the end of my story. It’s the very beginning of a fantastic journey upon which I unwillingly embarked. That journey took me through a process wherein I discovered an entirely new perspective and reality. This blog “SPECIAL” is a sort-of journal of all the lessons and experiences that brought my new perspective into existence. It has been so truly wonderful and joyful to transition from that emotional dead-end to a place of constantly renewed hope and life. The only thing I can do is share it with whomever would care to know. I’ve met so many moms wearing that familiar burden of defeat that I had no choice but to try to find at least one who might listen, read, and also find a better way.