Remaining Flexible in Parenting

Remaining Flexible in Parenting

Written by Trista Park 

I was 20 weeks along in the pregnancy with my third daughter when it was discovered she had a major heart defect requiring surgery within the first few weeks of her life. I was shocked to say the least. What I didn’t expect to go along with the initial heart diagnosis was the 99.9% chance she would be born with Down syndrome. 

The second half of the pregnancy was spent in and out of appointments with various specialists, all working diligently to bring this baby safely into the world. I saw my life changing before my eyes, preparing for the unknown road ahead. 

She came into the world ahead of her due date ready to fight. Her first surgery came unexpectedly at 2 1/2 weeks old, her tiny body fighting against low oxygen levels and high respiratory rates unable to gain weight. She was closely monitored after the first surgery, her heart proving to need to the second major heart surgery much sooner than anticipated. At only 8 weeks old, I kissed my newborn on the forehead goodbye with tears streaming down my cheeks for the second time and watched the anesthesiologist wheel her crib through the double doors for an all day surgery. 

Her heart desperately needed the repair and her recovery went much quicker than expected, considering the major issues she experienced following the first surgery. After nearly two months in the hospital, my husband and I finally brought our newborn home to face the reality of our new life as a family of five. 

Bernadette’s first several months home were spent supporting her post-op. Her body was adjusting to the heart repairs and I was adapting to caring for her. She came home on heart medication and a feeding tube, two things I wasn’t mentally prepared to handle or entirely confident to take on. However, she desperately needed the feeding tube to provide her body adequate nutrition. Her respiratory rate was still extremely high coupled with feeding difficulties not unheard of due to her low muscle tone, made it a necessity I would have to quickly adjust to. 

Around five months of age, she started receiving therapies through early intervention. Our team included a physical therapist to help with her gross motor development and an occupational therapist to address her feeding issues. It proved to be a long year of trying to settle into a good rhythm with new faces coming in and out of our home, but eventually we did. She slowly weaned her way off of the feeding tube and her physical therapist worked diligently with her twice a week. Eventually we added more therapists and playgroups, our schedule quite full.

It was a big adjustment for all of us, including Bernadette’s sisters. They were only two and four years of age at the time of Bernadette’s birth. Both girls were still so young and not quite to a stage of full independence. I would do my best to set them up prior to a therapy visit with an activity but often times, their attention span to the activity was limited. Soon enough, they would both wander into the living room seeking attention from me. It wasn’t perfect, but we managed. Some days felt more successful than others and some days I had to let go of whatever exception I set knowing there was grace to cover that day. 

One of the biggest questions I had in the pregnancy with Bernadette was what it would be like to parent a child with Down syndrome. I wondered if would differ from parenting my other girls and if I would need to adjust how I parented. As with any child, I soon began to discover, what works for one child doesn’t always work for their sibling and it was important for me to approach parenting Bernadette with flexibility and a compassionate heart. 

First and foremost, each child needs love and security. Telling each girl everyday how much they mean to me and how much I love them is important for them to hear from the time they are born. I want these girls to grow up knowing they can rely on their parents for love and support through any season of life. They are deeply loved and cared for. 

I also wanted to create a nurturing environment, one they feel secure in while supporting their growth. My oldest daughter walked well after she was a year old. I remember encouraging her growth and providing opportunities for her to walk as best as I could. All the while knowing that she would walk in her own time and I didn’t need to stress over it.

Bernadette started walking shortly before her third birthday. It felt like a long time coming. The support she needed was far different than what I had experienced with my oldest daughter, but the encouragement we provided her was still similar. The excitement erupted from all of us the day she took her first couple of steps. Her sisters had been eagerly anticipating the day she would walk and when she did, they were there to cheer her on and hold her hands every single step of the way. 

I have realized the importance of not comparing any of my daughters to each other or to their peers. This can be a difficult task. But, I have to maintain perspective being fully confident where my own kids are instead of believing they are not measuring up to some hypothetical standard. This is particular true with Bernadette. For her, setting her up for success, supporting, and encouraging her along the way while celebrating who Bernadette is allows me to move forward fully confident in her and her timing. 

The biggest thing I have come to embrace as mom to my three daughters is they are each uniquely and individually created. Each girl has their own set of strengths and zeal for life they bring to the world, each looking quite different from the other. Helping them navigate through the little years and supporting their growth in the years to come allows me to see those strengths and encourage them onward. 

Flexibility is essential when parenting three different girls. My days look vastly different now than they did when my first daughter was born. Playtime has evolved into incorporating activities from therapy sessions we need to work on and also includes all three girls. The two older girls take turns working on sign language vocabulary with Bernadette. They daily have dance parties that work on Bernadette’s gross motor development. They also patiently color with her at the dining room table while Bernadette continues to work on her fine motor skills. 

Having the gift of raising a daughter with Down syndrome has given me a greater perspective in life. One of slowing down, taking deeper breaths, and acknowledging the hard work of our entire family. Each of us working together to support one another and having a deeper sense of compassion towards one another. Crying together through the hard moments and certainly celebrating any milestone, big or seemingly small. It’s a challenge in the harder seasons to maintain this perspective, but it is one worth remembering.