Where do I begin? Starting right from when Luke and I first met doesn’t seem like an appropriate introduction. My story of motherhood and some of what made me the Mom that I am began even before I laid eyes on my son. From a very young age, I knew that I wanted children. I was a natural with my ‘real life’ dolls and that practice paid off when I began to babysit, and then later nanny for twin girls. The Moms whose children I took care of would call me “the baby whisperer” and I took a lot of pride in that reputation. I took this nurturing disposition to the classroom and enjoyed teaching and caring for children I considered my own. It cemented the notion that I would make a great Mom myself one day. So, when we decided to have a baby, I knew it was my time. Plus, being married, and a teacher in your thirties seems to create an imaginary sign that begs, “Ask me when I will have children of my own.” We stopped birth control and I immediately got pregnant. I was convinced God was just waiting for us to get the show on the road and made it as easy as possible for my body to house a little human.
I loved being pregnant. I had an instant bond with this child I had never met. There is something very romantic when you blend your DNA with the one you share your life with. It’s so magical and wonderful. So, I took my job seriously to make certain this baby was getting only the best. I worked out, ate well (with the exception of the occasional donut), and just reveled in it. We went to birthing classes, read brain books, “what to expect” books, and we were determined to be as ready as we could be for our baby. All of the ultrasounds were routine and nothing stood out to my OB-GYN. We elected to get the genetic screenings done, but again, nothing indicated we needed to be alarmed. Nearing the end of my pregnancy, our baby’s head was measuring small. My doctor attempted to ease our concerns by explaining her daughter’s head measured small as well and still does. Nothing to worry about, she insisted.
We went to one of our last appointments two weeks before my due date on September 19th. I was spotting and my doctor suspected it would be sooner than we thought. I went home and that afternoon I started to experience some cramping. The pain worsened as the hours passed and I called Dave to come home. We timed the contractions and sure enough, it was time.
Now the following hours are pretty foggy and I know that Dave would be better able to fill in the blanks. We arrived at the hospital at about 5:45, checked in, and they came to find I was eight centimeters dilated. We settled into our room, I got my epidural, ate a banana popsicle, and before I knew it, our baby boy was ready to meet us. At some point, both my heart rate and the baby’s started to plummet and they gave me oxygen. I remember right then I prayed for God to help us get through this. I looked away from everything and everyone and just focused on my breathing. It didn’t take too long for everything to normalize and then I was pushing. I pushed for maybe ten minutes and then at 9:36 p.m. we welcomed Luke Thomas into the world. He was perfect. I can still remember the first time I held him and just falling in love. I told him while he was in my arms, “It’s so different, isn’t it?” meaning that it was such a different place, this new colorful world. I think about that now and I wonder if I was really telling myself how different he looked from how I imagined. Because he did. Although babies are sometimes smooshed and swollen when they are born, there was something different about how Luke looked. I didn’t say anything. I chalked it up to the meds. Luke took right to breastfeeding and I felt relieved. We spent the rest of the night marveling at the new addition to our family and I will always remember the joy on Dave’s face. He was so proud.
We were pretty tired the next day but were so excited to have Luke with us. The neonatologist came in to examine Luke and didn’t say much; instead, she said another doctor would be coming in soon to speak with us. In my gut, I knew something was wrong. Even the nurses acted a little vague. Both of our parents were there visiting when the other neonatologist came in, picked up Luke, and explained that our baby was showing signs of Down syndrome. The floppiness and the physical characteristics were apparent, but they would have to run some tests to confirm. He had zero bedside manner and did not ease any of our accumulating fears. I remember my legs shaking uncontrollably. Dave and I were consumed by confusion. I equate that moment in my life to what I believe it would feel like to enter the twilight zone. This couldn’t be happening. It felt like an out of body experience, yet I was trapped in this new world and I couldn’t escape. I so badly wanted to escape. Suddenly, it felt like we were mourning a loss. I remember taking Luke into my arms, holding him close and wanting him back into my belly. I could protect him. I could protect us. I knew I loved him, but where was my baby? Who was this child? Where was the one we envisioned? What is our life going to be like now? What does all of this mean for Luke?
We had so many questions. One that I remember Dave asking is “Why us?” I thought hard about that question. Something came over me and I thought, “Why not us?” I don’t know if it was a sense of peace, but for a moment I accepted the path I was put on and knew I needed to forge ahead and care for this child. Why did we think we were untouchable? Why did we think something like having a child with special needs couldn’t happen to us? Perhaps because there were no signs, no heads up? Now, let me assure you, my calmness came in waves. I had breakdowns almost every couple minutes. I would get myself together, be able to take care of Luke, and then it would hit me like a ton of bricks that life, as I thought it should be, would never be what I imagined.
Dave had gone home to get some rest when the geneticist came in to evaluate Luke. She said she was 95% sure that Luke had Down syndrome. Perhaps it was her kind demeanor or just that the day completely sucked out everything I had left, but at that moment, I lost it. The nurse held me tight, reassuring me that it would be alright. Once Dave came back into the room, she repeated her speculations. She also explained that we would be better people because of Luke and we would find out who are truest friends are. I would learn in the later months that she could not have been more accurate in her predictions.
That night the nurse took Luke to the nursery so we could get some sleep. I think she and the rest of the staff knew that that night we couldn’t be the caretakers Luke needed us to be. Dave and I put the hospital bed next to the cot and held each other as close as we could. Sniffles, cries and soft whispers were the only sounds coming from room 320. We needed to grieve. I woke up in the middle of the night to a strong yearning to see Luke, to hold him, and let him know that I hadn’t abandoned him. The nurse told me that his oxygen levels were decreasing a bit and they wanted to move him the Neonatal Intensive Care Unit to be monitored. She said she would return in a little while with an update.
The next day Luke was located in a different room, all his own, surrounded by monitors 
and hooked up to IVs. The doctors ran tests, including an echocardiograph to take a look at his heart. The cardiologist informed us that his heart looked good, and miraculously the hole that would have caused concern closed while the echo was performed. When we heard this news, we were relieved, but unaware of how big of a blessing this was. We would later learn that 50% of children with Down syndrome have a heart defect. That morning we received a crash course about Down syndrome from another neonatologist. He pointed out the different markers present on our Luke and explained that cognitive delays can be mild to moderate. My OB-GYN came to visit Luke and explained how sorry she was that she didn’t look deeper into our previous concerns.
I was discharged from the hospital, but without a baby in my arms. He had to stay behind. That was one of the hardest things I’ve ever had to do. I was a brand new mother with no child to bring home, let alone not the child I expected. Nevertheless, I hated leaving him. He was mine and I needed to take care of him. We decided to go home and get some rest. I was most grateful for my group of girlfriends that insisted on coming over to be with Dave and me that evening. “Even if it’s just for a second,” they said. “We just want to hug you.” We named our group the 6pack awhile back when we realized we had a really special bond between the six of us. We are sisters and have grown together during good and bad times throughout the years. They came over and brought us much more than just hugs. They brought us food, sat with us, and prayed for our little family. They are my tribe and I will never forget how their presence, words, and love calmed my anxious heart that night.
Mornings were by far the most difficult. First, I would wake up to realize I hadn’t been dreaming. Then, I felt a bang of guilt that I wasn’t there with Luke, having chosen to heed the advice of the nurses and get sleep while I could. I would wake up early, wait for the shift change, give the nurses some time to pass off notes, and then call to get an update on how Luke was doing. I asked what my specific prayer should be and reported how much milk I was able to pump for him. (Luke was not breastfeeding well, after all. My milk hadn’t fully come in and, due to emotional stress, was taking much longer to do so. The NICU supplemented with formula until I could get a good supply). We went to the hospital at about 9 a.m. and stayed until the evening. Our parents and the girls came to visit, providing love, support and snuggles to Luke.
The ten days that Luke spent in the NICU seem like a blur to me now. We were blessed to have such amazing nurses that we still keep in touch with a year after Luke was in their care. I remember snippets and I have plenty of snapshots, but it’s such a painful memory. There were many highs and lows. I pumped, got updates from doctors, talked with physical and occupational therapists, breastfed and tried to take care of Luke the best way I could while he was there. My Mom, who has and always will be my rock, bought me a book about parents of children with Down syndrome. She knew I would find comfort in their words. I started to read one night while I was snuggling Luke and it didn’t take long for me to stop and close it. I wasn’t ready. I decided that I couldn’t read someone else’s story when I was beginning to write my own. I wanted Luke home and then I could deal with his diagnosis. I ached to take care of him the way I imagined.
Although there are plenty of details in between, Luke finally started to breastfeed just enough for us to get the green light to go home. On October 1st, Luke met his sister Cory dog for the first time and slept in his bassinet next to our bed. I would be lying if I said he came home and we lived happily ever after. The first few months were emotional and the fog didn’t lift until around January. I know that it was the grace of God that got me through those hard times.
I often think about who I was a year ago when Luke was born. I feel like I was so much younger then. I was ignorant and scared of the unknown. Many people say that they regret their reaction to the news that their child has Down syndrome. I am not one of those people. Maybe it’s because I was in denial or completely preoccupied with giving Luke what he needed. I couldn’t control how I was feeling one minute to the next and my emotions were raw and real. My heart was broken and I didn’t think it would ever heal. I can’t make apologies for that. It is Luke that mends this heart each and every day. He mends it with his snuggles, smiles, midnight sounds, his little victories, his darling almond eyes, and his love for me. I have my moments, understandably, when I grieve or I am afraid of what the future holds for Luke. I throw myself the occasional pity party when my strength wavers. Then I am reminded that God has his hand on Luke and He always has. This was the plan all along and this is the life he intended. God is on my side and I can trust that He will take great care of us.
I think about what I would tell myself back then, the new Mom who was so shaken with fear. I would tell her that you are going to be a better mother to this little boy than you ever imagined you would be. He will love you just as fiercely as you love him. You will find the bond with him is unlike anything you have ever felt before. You were created for him, to be his mother
and care for him well. You will discover a strength that you didn’t know you had to be his advocate and educate others. You will become resilient and grow a thicker skin. You will learn more about Down syndrome, physical, occupational, speech therapy, and child development than you would otherwise. You will have good days and bad. On the bad, you will curse the diagnosis and want to pull the covers over your head. But then, you will remember that he needs you and those bad days will eventually become less and less. He will greet you with kisses and smiles intended just for you to make you forget why you thought it was so terrible in the first place. You will miss the old you from time to time. But it is because of him that you are a newer, better version of yourself. He will remind you that the road we are on is unique and a gift that should be handled with such care as it requires slowing down in order to really enjoy it. He will invite new people into your life that will offer support and understanding. He will soften hearts and change perceptions. He will reach the goals that you set for him, but it will be in his time and on his terms. This will test your patience, yet it will prove to be worth it because he will show you his determination. He will teach you to listen carefully, think with your heart before you speak, and be kinder to others. I believe he was sent here to make this world a better place. There is so much more I can’t wait to learn and share while living this life with Luke.
“Perhaps this is the moment for which you have been created.” Esther 4:14
Luke has perfected his crawling so much that he is moving on to bigger and better things! Climbing, half-kneeling, and standing! Seeing him stand upright is a bittersweet reminder my baby is no longer a baby, but now a toddler. Dave and I couldn’t be more excited to see what this year holds for our sweet bubby as he climbs mountains–figuratively..for now, and changes perceptions–quite literally. From our family to yours, we wish you much happiness and many blessings in this new year!
Another aspect of the crawling goal was that he had to master cross-crawl pattern before he could sit independently. This method goes against the traditional order of mobility. Most babies are taught to sit first and then crawl. This explains why most of the time he posed for pictures on his belly. Yes, he sat in a high chair to eat, but it wasn’t the same as sitting on the floor to play. Our therapists agreed, and although they supported us implementing the NACD approach, I know they questioned if we were further delaying the typical developmental milestones. I kept him in his car seat when we went to the grocery store and restaurants. This, along with the work we were putting in at home, was painstaking. I wanted him to sit up, socialize, and greet strangers with his smile. I felt others thought I was hiding him or even thinking, “I guess that baby can’t sit because he has Down syndrome.” It was probably all in my head, but it was certainly not what I envisioned for the both of us when I imagined our outings to Target. I knew he wasn’t stable enough to sit on his own yet. As much as I believed NACD and understood their rationale, it was hard for me. But, I also believed that he would get there in due time.
Life with Luke 321 