“Don’t worry about your baby achieving developmental milestones as they are listed for a typical child. Your baby will do it! He will crawl. He will walk. He will talk one day. Enjoy your child in each of his stages of growth. Neither your child’s diagnosis of Down syndrome, nor his congenital heart defects, defines him, or your life as a family.”
I had the pleasure to interview Alissa May Baptista, a Down Syndrome & CHD Advocate. Alissa Baptista is a homemaker and caregiver of four children, Hugo, Marlo, Sabine and Dashiel. She and her husband, Cesar, live with their children in Saugerties, New York. As the mother of a child with Down Syndrome and Tetrology of Fallot, Alissa is an advocate and has built a community of support for Down Syndrome on Instagram.
Thank you so much for doing this with us! What is your “backstory”?
Thank you for inviting me! I am a mother of four kids. Hugo is 11, Marlo and Sabine are eight-year-old twins, and our lovely Dashiel will be two this June. I am very fortunate to be a homemaker and have the opportunity to homeschool my three older children. We live in a brick house with our Standard Poodle, Fabio, and our cat, Evie, on the edge of the village of Saugerties, NY. Dashiel was a surprise pregnancy and was born on my 45th birthday. We had found out at my 20-week ultrasound appointment that our baby had a heart defect called Tetrology of Fallot, and a few weeks later were told there was a good chance that he would have Down syndrome. My husband, Cesar, and I made the choice to deliver our baby at NewYork-Presbyterian Komansky Children’s Hospital, as there was a chance that he would need heart surgery soon after birth. We were told to plan on a two-week hospital stay, but two weeks turned into four days short of six months.
What has the experience of raising Dashiel been like for you, from raising him for 6 months in the NICU to bring him home and integrating him with the rest of the family?
Raising Dash in the hospital was interesting. It took me longer than maybe it should have to see that the hospital was his home. Dash was born with a full head of red, spiky hair and weighed 8lbs, 1oz, which made him look like Goliath compared to most of his NICU neighbors! That head of hair was what pulled in the nurses, respiratory therapists, and even members of the cleaning staff. Everyone wanted to see the baby with the great hair. The nurses loved him. Watching how sweetly they cared for Dashiel gave me the strength to travel home to love on my older children every other day. If I could have ripped myself in two, I would have. It was very difficult to have my babes separated by such distance, for so very long. Dashiel’s first morning at home was a dream come true for me. To have all my children snuggled onto the bed at once was a very healing experience for my mama soul. My big kids have been by my side learning along with me how to best encourage Dash to eat, move, learn American Sign Language and play. He has thrived at home and his brothers and sisters have played a major role in his growth and development.
How has Dashiel changed the lives of your Instagram followers?
Sharing Dashiel’s journey has brought such love and encouragement to our family. I am constantly amazed when followers write how seeing a photo of his happy face on their feed each morning lifts their spirits. Other followers share that they have sent prayers to Dashiel and our family. This support comes from people around the globe. With news that prenatal testing and selective abortion are on the rise, I hope that Dashiel will continue to be a happy light on Instagram, and that our story may help other families to not have fear of his diagnosis. A follower from Australia, and longtime friend recently wrote, “You have made me re-examine my attitude to Down syndrome & also highlighted my lack of understanding of the condition.” These words were huge for me.
A few of Dashiel’s nurses began to follow my Instagram feed while he was still living in the hospital. It was wonderful to share more of our life with them. I wanted his daily caregivers to see photos of Dashiel in his hospital isolette next to portraits of his siblings in our home. I hoped this would help them to see Dash as more than a patient under their care. I wanted them to know he had a place in our family and that we were all anxiously waiting for Dashiel to be well enough to live with us. In mid-December 2016, Dashiel was finally discharged to our home. The nurses continued to follow Dashiel’s journey as he adjusted to life at home and watched as our family adjusted to a medically fragile baby now in our daily care. Those first days and months of caring for Dash were precious, but at times, also tricky and stressful. Our favorite nurses read between the lines of my posts and sent me private DMs and text messages asking if I was okay and gave me their support. A nurse who developed a tight bond with our babe has offered to travel update and babysit the Dashiel and the kids so that Cesar and I could have a few undisturbed hours together. I love these men and women. When I imagine Dashiel’s future, I see these people from the NICU and PICU playing an active role in his life. I was Dash to know where he lived for so long, and to know the hands and faces of those individuals who cared for him when I could not.
What made you choose to share your story via Instagram in the first place?
I’ve had an account on Instagram since 2012, before that I shared our daily life on a blog. Instagram fulfilled the desire in me to create memories through captured moments on my iPhone and journal parts of my everyday in a quick and easy format. I have formed real friendships with other mothers through this platform. These friends were excited about this new miracle of birth about to take place and shared in our collection of squares. Then Dash was born and taken straight away to the NICU and I had no newborn in my arms to photograph. No photo of our new family of six. We realized that Dashiel did indeed have Down syndrome and were gaining more information about the defect of his heart as we waited to hear the decision of when his first surgery would take place. The waiting was frightening. The day I first shared information about Dashiel on my public Instagram account was liberating for me. It forced me to own that we had real challenges to face and that our future was a bit uncertain. To tell the world, and our families, that Dashiel had Down syndrome was important, but what I really needed them to know was that I undeniably loved him and knew he was meant to be a part of our family.
What are your “5 things I wish someone told me when I first started caring for a baby with Down syndrome and congenital heart defects.”
1. Don’t be afraid. Don’t dwell on the negative. Your baby needs you to see them as the infant that they are, not their diagnosis
2. It’s okay to cry. It’s okay to mourn the loss of the baby of your dreams who is not before you. Now hug and kiss the baby who is in your arms. He needs you. Your baby does have a bright future, so dream big!
3. Don’t worry about your baby achieving developmental milestones as they are listed for a typical child. Your baby will do it! He will crawl. He will walk. He will talk one day. Enjoy your child in each of his stages of growth. Neither your child’s diagnosis of Down syndrome, nor his congenital heart defects, defines him, or your life as a family.
4. You are the voice for your baby. Ask questions. Find a local Down syndrome group to connect with other families.
5. It is possible to breastfeed your baby with Down syndrome. Breastfeeding not only is the best form of nutrition for your infant, it is also a wonderful form of exercise and therapy for your child’s mouth. The muscles used while breastfeeding will later help his ability to speak clearly.
Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might see just see this. 🙂
I’ve noticed through Instagram that there are a few conferences held for families of children with Down syndrome. I feel like my legs are finally back under me, allowing for the kids and I to make progress in our new normal daily life. I think I’m ready to sign up for a conference to educate myself more on all the good that is before us with Dashiel in our lives. I would like to meet more families who are sharing this life journey with us. I can’t wait for Dash to have a little buddy of his own one day. Three of my favorite Instagram accounts who share their daily lives with a young child who had Down syndrome are @sarahszu, @rightnao and @rafigrowsinbrooklyn. I’ve learned much from their examples of a teaching heart and finding joy in the everyday.
Originally published at medium.com