PART OF OUR RESOURCE 2024 SERIES: Expanding your options and your community
Featuring guest blogger, real estate specialist, co-founder of EmpowerMe Living, and mother of Luke, Emily L. Kendall.
I remember waddling through our neighborhood on my daily walks when I was pregnant with my second child asking him to stay in as long as possible. I delivered my first born at 29 weeks, so every day we made it through this pregnancy was a small miracle. I was deemed high-risk, with ultra-sounds and monitoring every two weeks, which increased to weekly as my due date got closer. Even though the pregnancy was stressful, I felt like I would get messages from my son in utero – it’s all good, Mom, I got this.
Luke was born a little over 37 weeks after a quick and easy labor. He latched on to nurse right away. He looked a lot like his big sister and had a head full of blond hair. Then the news, delivered by the neonatologist, “I’m sorry, your son has Down syndrome.” And our world changed, but Luke’s message did not – I got this.
The name Luke means light, and until I met my son, I didn’t fully realize how fitting his name is for him. He is the light that leads the way. Throughout his young life he’s reminded me to trust my intuition, education, and instincts to advocate for him.
Luke spent time in the special care nursery and was transferred to the Cincinnati Children’s Hospital NICU four days after birth. Through testing, the medical team suspected he had Hirschsprung’s disease, a condition that impacts nerve endings in the colon. I stood in my pajamas sobbing as they loaded him into something from a space launch to transport him in the ambulance. It’s okay, Mom – I got this – he seemed to say, remaining calm.
Once we got situated in the NICU, another neonatologist told me dismissively not to expect much from breastfeeding. According to the organization, Julia’s Way, 30% of mothers of babies with Down syndrome are told something similar and discouraged to breastfeed. I knew Luke could breastfeed, he did it right after he was born! I trusted my instincts and my son’s abilities, and with support from the lactation team Luke went on to breastfeed for 10 months. Thanks to my experiences navigating breastfeeding with my oldest daughter and Luke, providing support for other moms has become one of my passions. Luke’s light led me down a path to publish a breastfeeding journal to encourage moms to practice mindfulness and self-compassion during what can be a difficult experience.
A few days after being admitted to the NICU, Luke had surgery and returned with an ileostomy. About two-thirds of his colon didn’t have nerve endings, and his small intestine was now routed to his stomach, called a stoma, and he had an ostomy bag. How am I going to do this? I thought to myself. I am a marketing professional, not a medical professional! Luke remained in the NICU for three weeks and our family learned how to care for an ileostomy – emptying the bag, changing the ostomy appliance, and keeping Luke’s skin healthy.
We immediately got involved with our local Down syndrome association and engaged Early Intervention. Looking back, one of the most important things we did as a family was start learning American Sign Language. Luke was only six months old, but we went to classes and started using it frequently at home. As Luke got older, he developed a wide range of ASL vocabulary that he uses to communicate. He also “code switches” – Luke can pick up very quickly on who knows ASL and who doesn’t and will adapt his communication style accordingly.
Luke was nine months old when COVID struck. His therapies and early intervention moved online. Once we could attend therapies in person, I realized that going to speech therapy with the speech pathologist wearing a mask wasn’t effective, so we switched back to virtual speech therapy. This worked out much better because Luke could sit in his highchair and focus, the therapist was close to the screen, and he could easily see their facial features and mouth movement.
In April 2020, Luke got very sick with some kind of GI illness. He was lethargic, not eating, and hadn’t had any urine output for hours. I knew something was wrong and he needed to go to the hospital. My husband was very worried about us going during the height of the pandemic, but I trusted my instincts and took him to the ER. Luke had enterocolitis and needed antibiotics and IV fluids. It would be our first of many hospital stays over the course of the next three years.
Luke is more susceptible to gastrointestinal viruses because of his ileostomy. As a family we’ve learned how to watch for the signs of dehydration, which if not addressed can lead to serious complications. We’ve logged many long days and nights waiting for his ostomy output to stabilize so he can get off IV fluids, and it’s during some of these hard times where I’ve found my strongest voice.
I’ve learned to tell the medical team, no, you are not drawing blood at 4 AM, you can do it later in the morning when he is awake. I’ve learned to make sure we have the vascular access team do his blood draws and IV placements. I’ve learned how to read the medical charts and ask pointed questions about treatment plans and made the case to adjust when I didn’t think it would be best for Luke. Our family has developed great relationships with the entire team on the GI floor at the hospital because we believe everyone from the cleaning crew to the head surgeon plays a part in Luke’s care.
During these long stays, Luke remains resilient. He smiles and jokes with the nurses and doctors, lets them know when he doesn’t want to be messed with, and will even sign thank you after having a blood draw or IV placement. He makes the most of tough situations and shows me how to do the same. We spent this past Christmas morning in the hospital, and while it was hard to be away from the rest of our family, Luke and I got the gift of snuggling together just the two of us.
As he’s grown up, Luke continues to show us, I got this. Trying to manage the endless parade of specialists and therapies can be overwhelming, so we turned to hippotherapy – occupational and physical therapy on horseback. Luke was two-and-a-half the first time we put him on a horse. We didn’t know how it was going to go, but we did like the idea of trying something different than going to a therapy room. Luke got on the horse like he was a cowboy in another life and has been riding ever since. Riding helps strengthen his core muscles, reduces stoma prolapses (where his small intestine protrudes too far out of his stomach and can cause issues), and builds his confidence.
Luke started preschool the summer after his sister was born. With that big change in his life, I was nervous about how he would do in school, another big change. The world of IEPs was new to us, but just like the hospital, we vowed to treat everyone involved in Luke’s education, from the janitor to the principal with respect and appreciation. We hope to maintain that mindset as Luke gets older and we hear the IEP process can get tougher. Going through the ETR evaluation and reading some of the comments and results was disheartening, but I reminded myself that Luke is not a “typical peer.” Luke has Down syndrome, and he does things in his own time. I try not to let those standards cloud my vision and let Luke’s light clear away the clouds.
Luke loves school. At the end of his first year of pre-school, his teacher recommended he would be ready for riding the bus. Part of me hesitated but the other part of me knew Luke’s got this. The first ride home was hard, but once he saw us waiting for him the tears subsided and never returned for the rest of the year. Mom, you are right, I got this.
Sometimes I think Luke is really telling me – Mom, you got this! His light illuminated a path for me that’s led to the most incredible journey. There have been ups and downs but with each step forward I’ve learned, grown stronger, and met some of the most amazing people. Luke also helped me write a book and re-envision my entire career to use my years of experience in commercial real estate and equity capital fundraising to start a real estate company with my husband dedicated to providing more housing solutions for adults with intellectual and developmental disabilities. We didn’t know it before he was born, but we chose his name well. Of course, he already knew, he’s got this.
Resources for Breastfeeding Support
Julia’s Way
Let it Flow – A Journal to Guide You on Your Breastfeeding Journey
Available on Amazon:
https://www.amazon.com/Let-Flow-Journal-Support- Breastfeeding/dp/1955791694/ref=sr_1_1?crid=1WYN2PJHBHAP0&dib=eyJ2IjoiMSJ9.XHgn 5zU_i2A_lY2Za3RlOA.NRngS0M7qbHTBMzk7oqRfMpNuD8EF_wAeEygOXwLxU0&dib_tag=s e&keywords=let+it+flow+emily+l+kendall&qid=1719598492&sprefix=let+it+flow+emily+l+k endall%2Caps%2C140&sr=8-1
Article I wrote for Insider on breastfeeding Luke: https://www.businessinsider.com/down-syndrome-breastfeeding-baby-success-2024-1
Hippotherapy
Interview Luke and I did about hippotherapy for our local news station: https://www.wlwt.com/article/milford-hippotherapy-horses-healing-patients- cincinnati/60582337
Resources for Housing
Beyond Down Syndrome has a wealth of resources on housing options, planning for independence and more!
EmpowerMe Living – empowermeliving.com
First Place Global Leadership Institute – researching and leading the way for new housing innovations
Guest Bio: Emily L. Kendall
Emily is a highly experienced marketing and sales pro with a twenty-year career focused on high-growth companies. She spent over ten years in commercial real estate, leading the sales team for a student housing company that went public, and then overseeing the marketing strategy for a multi-billion-dollar equity raise at a grocery-anchored shopping center company. She spent the last three years helping female-founded venture capital firms raise equity before co-founding EmpowerMe Living with her husband and partner, Mark. Emily is also a writer and author of Let it Flow, A Journal to Guide You on Your Breastfeeding Journey and writes a Substack column, The Letdown. Emily is a mom of three kids and stepmom of three. Her son Luke was born with Down syndrome.
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