I have had the honor of knowing beau for a couple years and he is just the sweetest, happiest little guy! It is so moving how much they relied on their faith and how they are always trying to see the best! I am so thankful Marisa shared her story with us!
I watch my 3-year- old boy with awe and wonder. He is learning to jump and dance. He uses his short fingers to communicate through sign language, many of which are approximations only his dada and I know how to interpret. He would let me sing, “If You’re Happy and You Know It” and read Little Blue Truck on repeat all day long, his favorites. He eyes light up when a horse shows up on the book page so he can say, “neigh, neigh,” his only audible word. He is starting to shake his head, “no” whenever I ask him a question, and he is finally tall enough to flip the light switches! He goes to a special needs preschool every morning, walking up the steps of the school bus like a “big boy.” His smile lights up any room, a grin from ear to ear, and he brings joy to all who know him.
Our story began when we received a prenatal diagnosis shortly after my 20- week ultrasound. We were thrilled to find out we were having a boy and had a fun gender reveal photo shoot at the beach! News came in the days to follow that the doctors saw something irregular between the chambers of his heart. After further ultrasounds with Maternal Fetal Medicine and then Pediatric Cardiology, his doctor discovered multiple heart defects under the diagnoses of Atrioventricular Septal Defect and Tetrology of Fallot. Our doctor informed us that she had never seen a child with these heart defects and not have a chromosomal anomaly. She suggested he was likely to have Down syndrome and encouraged us to get the Non-Invasive Prenatal Testing, which was done through a simple blood draw. At this doctor’s visit, she introduced us to the poem “Welcome to Holland” by Emily Perl Kingsley, which has become near and dear to my heart.
My husband, Andrew, and I have a very strong faith and immediately turned to the Lord on behalf of our baby’s life and the formation of his heart. We had always envisioned saving the name to announce after delivery but felt it was important to have those we love rally in prayer for our son, Beau Maverick. Our prenatal diagnosis gave us time to accept and prepare for a life raising a child with Down syndrome. Of course there were sad days, tearful days, and days of wondering what life would be like, but there were even more joyful days as we decorated the nursery, watched my belly grow, and prepared to be first time parents! We continued to trust the Lord’s plan and remained steadfast holding to the promise that God would protect our little guy and walk every step of this journey with us. We immediately began studying Down syndrome and what we would need to know. One of the first websites we stumbled upon was NoahsDad and started reading the popular book Babies with Down Syndrome by Susan J. Skallerup. They both gave us a plethora of knowledge and we soon came to understand that Beau would be more alike than different. He would reach milestones as typical children would, just at his own pace. I was an education teacher, my husband had taught high school adaptive PE before entering the military, and we have family who work in the field of special education; we knew the Lord had long been preparing us to be Beau’s parents.
An official diagnosis from the NIPT came at 26 weeks and we began to share the news with our family and friends. We knew he would be loved and we wanted to be an “open book” when it came to creating awareness and acceptance of those with disabilities. We learned quickly that many people have very little knowledge about Down syndrome and we wanted to bridge that gap by opening up his life and our story to others. Feel free to visit our personal blog at babymuhs.blogspot.com Beau was born premature via urgent c-section at almost 34 weeks. His fragile little frame was 3 pounds 9 ounces. He spent the first three months of his life in the hospital battling feeding difficulties, the challenges his heart brought, and typical “preemie” issues related to oxygen and growth. He came home from the hospital at 8 pounds, on a feeding pump, but ready to grow to twelve pounds when he would have heart surgery.
At four and a half months old, we traveled to the Children’s Hospital of Philadelphia for Beau’s first open heart surgery. His surgery was a success but complications in recovery opened the door for what began a battle with feeding difficulties, reflux and aspirations, and now a sensory and oral aversion. This has created a dependence on a feeding tube for the last three years. Without going into too much detail, this has been the biggest challenge of having a child with Down syndrome. Though not all kids with Down syndrome fight this difficulty, we sure do! We have worked daily since heart surgery to get him to orally feed. Months turned into almost two years where he wouldn’t let anything in his mouth. Slowly, in the last year, he has allowed pureed foods and now is swallowing stage 3! This is a huge milestone for us but we know we have years of hard work ahead of us. Our little guy has worked incredibly hard to get to where he is. Since arriving home from the hospital after birth, he began receiving therapy through the Early Intervention. Therapists came several times a week to work on skills that a typical child would naturally develop; skills that require extended time and effort for Beau to learn. After multiple hospitalization setbacks along the way, he finally sat up at age one, crawled like a bear for a year before finally learning to walk at age two and a half, just in time to show off his new skills to Dada when he arrived home from deployment. He continues to receive therapies in preschool as well as from private therapists around town. He is learning new things everyday, continually amazing us!
We got plugged into the local Down syndrome association where we have met wonderful families to travel “Holland” with and it has served as a great resource to me as a new mom. We enjoy the monthly playgroup and the annual Step Up for Down Syndrome Awareness Walk. Additionally, I found a special needs moms support group “Living in Holland” through a local church. It has been the best blessing, a place where I can openly share with other moms who “get it!” We pray through the struggles, celebrate the triumphs, grieve together (yes sometimes sadness still creeps in), and do life together along the way.
Beau has multiple additional diagnoses under the “umbrella” of Down syndrome and has endured more surgeries, unsuccessful IV pokes, sedated procedures, sleep studies, swallow studies, and hospital stays than anyone would ever like to endure. He is truly a little warrior and bounces back from each with a smile. I have coined the term “nurse-mom” because I have learned to manage a daily load of medications, feeding pump schedules, doctors appointments with specialists, most of whom I didn’t even know existed, and even give him weekly antibody injections. With each new diagnosis Beau receives, it is an opportunity to continually surrender Beau to the Lord and trust that He will sustain him, strengthen us all, and show Himself faithful in the process. We continually have people say, “I don’t know how you do it!” and we simply reply, “with the strength of the Lord.” Our BEAUtiful boy is In His Hands.
Photography - Brooke Waldroup Photography
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