Anticipation. It's something we begin to experience from an early age, waiting for that bite of cake or longing to play with a new toy. Birthday presents. First days of school. First friends. First loves. Anticipation is one of the most exciting aspects of the human condition, and each big step in our lives brings more anticipation than the one before it. Driver's License. Graduation. College. Career. Engagement. Marriage. For the most part these anticipated events are all life-changing; we can look at the before and the after and say, "Yes, there is definitely a difference." They are also times at which our lives often pause on some heightened pinnacle of clarity or meaning. A goal achieved. A right of passage attained. Growth. We anticipate these moments knowing that things may never be the same once they arrive. For me, the moments of greatest anticipation have been the births of my two children.
I distinctly remember the instant I first became a mother. I had anticipated his arrival literally for years, and I waited those last nine months knowing that he would forever change who I was. As my husband handed our eight-pound-fourteen-ounce whaling little boy to me, I was flooded with pure joy, and the only words I could find were "hi" and his name. The sounds no more than left my mouth when he opened his eyes and was completely at peace. Captivated, I stared deeply into the hazy, onyx-colored windows to his soul and was lost in the most powerful love I had ever experienced. I felt whole. We were one. It was the single most powerful experience I had ever encountered in my twenty-eight years. Come what may, I knew we belonged to each other, and the years that have followed have taught me more and more about how incredibly sacred that gift is--the belonging between a parent and child.
Naturally, when we found ourselves preparing for our second child, the first moments of anticipation for me as a mother centered around that initial greeting--that finding myself in my child's eyes. We began planning almost immediately after that faint pink line told us to. The most exciting stages of those plans involved our oldest son. Now the big brother, he too would tell us about the things he was anticipating about "the new baby." At my twelve-week appointment he was thrilled to get to see the tiny baby growing inside me, and we were all amazed as we watched the ultrasound monitor--the little one was throwing tiny baby punches like a professional boxer. The fighter. That's what I began to call him.
For the most part, the first two trimesters of the pregnancy were uneventful. Appointments. Routines. Raising an almost-two-year-old energetic boy. Then came week twenty. Our ultrasound was exciting to say the least; we were indeed to expect another boy (news that was received with mixed reviews), and that little boy would barely sit still long enough to take a photo! Completely in character, our little fighter was a mover and a shaker. In meeting with the doctor afterwards, the tone changed from enthusiastic to somber. He informed us that we had two "markers"; my heart almost stopped as my brain took over. What?! Markers for what? Was something wrong with our little boy? Wait just a minute! I tried to focus intensely on his scientific "doctor speak" of an explanation. Apparently there was evidence of renal pyelectasis (an enlargement of part of the kidney, which is often seen in boys) and an echogenic intraventricular focus (a bright spot on the heart). The two of them combined gave us such a minimal increased risk for what the doctor termed "genetic abnormalities" that my husband and I discussed it for half an hour after the appointment and "let it go." My husband's science mind and math-teacher nature gave me peace, but in all honesty, for me it confirmed something in my being; from those first days of my pregnancy I knew something was "different." Call it what you will--crazy, a mother's intuition, paranoia--I just knew things weren't the same. This time the anticipation had anxiety in the mix.
In the meantime I was hired as a teacher in another school district. Let the plan shifting begin! My husband and I planned for everything. Commutes. Budgets. New insurance. New day care. New baby. New. New. New. Plan. Plan. Plan! The big change and excitement was a much needed distraction, and I truly loved my new school; well, I loved it for the six days I got to experience it at least. The plan had failed us. Our little fighter was on a different schedule than we were. Five weeks early, I went into labor--yes, at school. Much in denial, I made plans with my husband for alternate arrangements to get our oldest from day care, waited until the end of the school day, and went to labor and delivery--alone. Much to the protest of friends and family members, I could do this. I mean, I wasn't staying; I didn't want to bother anyone; it was fine!
After a couple of hours of monitoring, the nurse gave me medication to stop the contractions and was preparing to send me on my merry way. Literally seconds after swallowing the pill, my little fighter's heart monitor dropped off. For four minutes his heart rate was irregular and sometimes untraceable. They scrambled, did their triage tricks, and had us both in working order soon after, but I wasn't going anywhere. I now had to stay for an additional two hours for further monitoring. Miracle number one: we weren't going anywhere!
Still in denial, I calmly called my husband and explained what was happening. Annoyed, he began to pack the list of items I relayed and prepared to take our oldest to his parents. At the very least I wasn't doing the hour-long drive home on my own that late at night. I then called my mother to tell her what was going on; she would come to my side while we waited for my husband. Plan? Check! While I waited, I watched the monitor and graded papers; no time wasted, right? The medication to stop the contractions had not proven to be that successful either, so I was really trying to distract myself from the pain and fear. Every once in a while, though, I would notice that the baby's heart monitor line would stop. The alarms never sounded, and no one came rushing in, so I figured it must be fine. Then the nurse happened to walk by and see it happen too; she came in my room trying to be reassuring and went to contact the doctor. Miracle number two: the nurse saw!
My mother arrived and served as a much better distraction from my fears than grading had been; shortly after, my husband walked in. I explained everything to them both, and we waited for more ultrasound testing. The testing was inconclusive. All they knew was that the baby was in intermittent distress, likely from pressure on his umbilical cord. They moved us into a delivery room, and we were given a "choice": have him now or go home (with the "likelihood that he wouldn't survive the next 24 hours"). The nurse had given us plenty of reason not to trust the hospitalist on duty, and I had the "lack of trust" vibe all on my own, but the choice wasn't a choice. We knew what we had to do, but my husband and I both needed to hear the possibilities from the neonatologist. We made the request sometime in the wee hours of the night, and not five minutes later a well-kept but groggy doctor walked into our room. The scientific discussion between he and my husband began; I followed as best as I could with my English-teacher, terrified-mommy mind and asked the questions I needed to have answered. It was the hardest choice we had ever made to that point in our lives, but we made it. Miracle number three: we weren't going home without our baby.
The next several hours were a blur. At some point they gave me medication. At some point I briefly fell asleep. At some point the clock flashed to 6:00AM. Finally, the shift change had arrived! The new nurse, the new doctor, the NICU staff--all were exactly what I needed in the hours to come. We were ready. Change of plans? Yes! But we were passing the test of flexibility. Little did I know at the time that the new plans weren't mine at all. I had no control. Miracle number four: we had a medical staff that put us at ease and a plan that was not our own.
Once things were on the right path, there was no looking back. Our little fighter's delivery was quick and terrifying! The first words out of anyone's mouth were from the doctor, "Whoa! Short cord!" I looked at my baby for the first time, and he was entirely purple. Terror! I remember my husband being rushed to cut the cord and asking if he would cut the doctor's finger. I just wanted to hold my baby! The anticipation! Oblivious to all else, I craned my neck to see his every move. The nurse taking him to his crib. My husband standing over his tiny body. I couldn't see much, but I stared at my husband's face for any sign. Then it came--that spout of water streaming up from the little bed. I laid back with relief, "Is he ok?" My husband's voice was full of confidence and wonder. Yes. He was fine. His distress had been caused by the short umbilical cord, which he was likely tugging on and pushing against. Miracle number five: our little fighter and I had survived what could have been disastrous.
Minutes later, that moment I had anticipated--the being lost in his eyes and belonging to his soul--had come. My husband placed him in my arms. Nothing. I looked directly into his eyes, said "hi" and his name, and saw a vacant stare. My first feelings towards my son were of disappointment. Our first meeting was not what I had dreamed it would be. Was it prematurity? I mean, he really had just been through quite the ordeal. No. Something else. As I examined his face I found it. The bridge of his nose was flatter than I had envisioned. His eyes were almond shaped. The blankness. It consumed me. I wanted to scream, "No. This isn't mine. This isn't my dream. No part of our plan called for this." I felt a hand on my shoulder and turned to my husband, trying to smile. Our little fighter had entered the world in true character--with a strong fight; he was the champion. I had to cling to that. Bleary-eyed and exhausted, we posed for our first photo together. Did I smile? I had to look later to confirm it. I had anticipated the same intense joy I had experienced in becoming the mother to our first son but was instead slapped with harsh reality. Down syndrome.
Seconds after that photo, the neonatal nurse practitioner confirmed my fears. She would later tell me that she had read my face; she knew that I already knew. With care and compassion she congratulated us on our son, told us he was doing well, and then the reality: "Based on the markers from your twenty-week ultrasound and the things we are seeing in him now, we suspect your son may have Down syndrome. We will be taking him to the neonatal intensive care unit for more testing." Tears I had been holding back for what felt years began to silently pour out of my eyes. I nodded in understanding, but it was simply a reflex. What was happening? I felt my husband's hand move from my shoulder and was jerked out of my selfishness. I hated that moment for him. He had just experienced the pride of greeting his second son after the terrifying details that led to his birth, and that joy was stolen from him. I hurt in every corner of my soul. I hurt for him. I hurt for our oldest son. I hurt for me. I hurt for our baby. The pain consumed me. I couldn't breathe, and I couldn't look at him--this tiny, innocent child who needed me--I couldn't even feel him in my arms.
Time became irrelevant. Nothing around me seemed to exist. At some point they took my son from my arms and the next thing I knew they were letting my husband take him to the NICU. Before I knew it, I was again alone. There was a great irony in that understanding. Not eight hours ago I had wanted to be alone--to visit and leave labor and delivery triage without bothering anyone. Now alone felt terminal--felt empty. Soon the silent tears turned into loud, screaming, ugly tears--to the cleansing of a pain that I could not escape. Every piece of my being was broken and numb and lost. The next moment caught me by complete and total surprise as I unconsciously called out, "Why, God?!" Not only had I long since left my path with God when I began college ten years earlier, but questioning God was not something I ever thought it my place to do. In that moment I demanded an answer, and as quickly as I turned to ask, God answered with a quiet, peaceful, "Because YOU are his mother." My tears stopped in that instant. Reassurance. It may have taken me a few months after that point to actually have peace with what God had called me to be on that day, but I knew right there alone in that hospital delivery room that I was my little fighter's mother. He was mine, I was his, and we belonged to each other. Miracle number six: God spoke us into belonging.
After what seemed like an hour, my husband returned. We held each other, cried, and shared. Our fears for his future. Our shame in our reactions. Our pains for our newly formed family of four. Our confusion. Our dreams seemingly destroyed. Looking back at it, there was a great deal of ignorance in it all, but the emotions were raw. It was probably the most honest, pure moment of our lives, and it hurt--we were broken.
My mother opened the door in the midst of it all just to be sure we were ok, and we told her to leave. I know she was angered and worried, but we couldn't face it more than once. We knew we had to tell "the world" the truth but didn't have the words--couldn't do it yet. We longed to hold our oldest child--to know once again the perfection of our family's love. We waited until he was there to let anyone in to see us and told everyone that our youngest was healthy but that there were problems and not to ask questions until our oldest got to see us. When he arrived, we hugged him like never before, smiled at his excitement, and told him that his little brother had arrived. Pure joy! He couldn't wait to see his new baby. My brother took him to a nearby vending machine for a treat while we told everyone about our little fighter's "abnormalities." I was so proud of my husband in those few minutes; I didn't have the words, but he did. His strength and his vulnerability in one sentence, and there it was: the first step in our public path with the unknown. My mother came to hug me, and his parents to him--both assuring us that we could do this. It was a brief but needed comfort.
Soon thereafter I was taken to my hospital room, and we made the long journey down the hallway to the NICU to see our newest family member. I still hadn't experienced that feeling of "wholeness," and a new anticipation began to grow with every floor tile we passed. I couldn't face him. What kind of mother reacts to her son's first glance with disappointment? He deserved better.
Then it happened. We entered the NICU doors--my husband, our oldest son, and I. We rounded the corner, were directed to the right crib, and I found it. Wholeness. In watching the joy and rapture of our oldest son as he looked on in awe at his little brother, I found our family once again. Looking at his little brother's face under the oxygen hood, his little two-year-old voice so proudly said, "J is Buzz Lightyear! To Infinity and Beyond, J!" The words ring through my mind to this day--a motto to remember. Moments later we took our first photo as a family with puffy, tear-stained eyes and smiles that were finally sincere. Miracle number seven: God gave us wholeness in the sweet innocence of a child.
As we headed back to my hospital room, I was amazed at how "normal" everything around us appeared. My world had just shattered, but nothing else had changed. I just didn't understand how it was possible. I had suddenly become "removed" from it all in some way. I just knew we were going to become the people that everyone pitied or didn't understand because our lives were "different." I felt sick from the thought. I didn't want to be on this path. A nurse came to check on me after supper, though, and brought us a poem "Welcome to Holland" by Emily Perl Kingsley. I couldn't read the poem yet; something inside me wouldn't allow me to let the words in, so I didn't even look at the paper. But her story about a family member with Down syndrome gave me hope of acceptance and strength. I was reassured.
Later that night I awoke to tears. Fear had found me once again. I couldn't stop crying for fear that my little fighter would never have friends and that his big brother would suffer as well. Minutes later a nurse entered to check on me. She told me the story of her own sons; the youngest had special needs, but her oldest son's friends stuck by him and defended him no matter what. I was reassured, and as the nurse left I realized that every single one of our own friends had had or would have had a baby the same year as our little fight was born--built in friends--God's design. After reassuring my husband I was going to be fine, I went back to sleep.
The next day I was allowed to attempt to nurse my little one. I was nervous because of all of the wires and monitors connected to him, but I knew nursing. I had done it for a year with my first son, and there was comfort in knowing that at least this part of the plan would be my own. The lactation consultant warned me that because of his prematurity and his "possible" Down syndrome that he may not have the strength and tone to latch on; it was probable that he "just won't be able to do it." Much to my amazement he did--on the first try. Later that same day, our little fighter was doing push ups in his crib; our son, who was supposed to be immobile and have low muscle tone, was stronger than he was supposed to be. His doctor even noticed as she walked by joking, "Wow! That's not low tone at all. We need to make sure the rails are up on his bed!" In that moment I learned never to listen to the "might nots" and "can'ts" that our little fighter may have thrown at him. He could. He would. He will. Again I was reassured. Miracle number eight: God gave me reassurances exactly when I needed them most.
After my own release from the hospital, we spent fifteen more days with our little fighter in the NICU. Early morning arrivals, coaching him through feedings, late night calls to check on him. Juggling two lives between our two children was a challenge, but my husband and I met it head on and saw each other in passing a great deal. There were moments, however, when we would find time together, and one in particular I will never forget. It was in the hospital cafeteria about five days into our adventure, and we had stolen away for a lunch date. We slowly walked around to see the various selections for our meals, paid for our final choices, and made our way to the table. The first few minutes were silent; it was as though we were soaking in the peace. No monitors. No responsibilities. Just the two of us and a simple lunch. Once the conversation began, it was centered around the to-dos and the kiddos but somewhere along the way it took a surprising and amazing shift. I don't remember how we got there or what we were talking about, but I will never forget the words spoken by my husband, the nonbeliever, when he said, "I get it. I understand faith and why people lean on it because right now it's all I have." In our eleven years together we had discussed God and faith many times; I knew where he stood--somewhere far away from God. I also knew where I had been--somewhere with my back turned. Yet in that moment in that cafeteria we were on the same page, walking forward in faith that the God of all things had a plan for our family--a plan that we did not comprehend but a plan that we were ready to be in the middle of. It was peace. Miracle number nine: my nonbeliever husband found his faith.
It has been two years to the day since that first day when our world fell and was reshaped. The lessons and gifts have been around every corner. Not every day has been easy, and not every day has been a burden, but each day has indeed been filled with God's blessings. The ease at which he became a part of our lives. The forgetting about the Down syndrome entirely. The smile that brings the purest joy to a stranger's face. The fears of losing our little fighter to health issues at six months old. The challenges of his many food allergies. The way he makes his friends feel safe and loved. The love he has brought into our lives. The blessings from God manifested in this little life that I once saw as a burden have been endless.
I used to see perfection as something I could prepare enough to attain. A well-developed lesson plan. A spotlessly tidy home. A dream for my family's future. Today I see true perfection regularly as I watch my sons play and grow--when I see God's perfect plan unfolding in our lives. Perfection has never been something attainable through my powers; instead, all along the way it has been God by my side even when I ignored him. It has been God loving me onto a path that He knew I needed. For that I am truly blessed. Miracle number ten: God has forever changed my life and led me to a path I never imagined I would be walking.
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