Wednesday, October 14, 2020

Being "Mom" to My Daughter with Down syndrome

My daughter can say "mom" in a half-dozen ways. 

"Mom" is the name she calls when she sees me in the morning. Jaycee seldom wakes up grumpy, unlike myself. 

She giggles out a "mom" when I do something that amuses her. It could be the funny way I sing a Disney song or a family joke that I know will get her to laugh. 

Sometimes, "mom" is a call for help. The help Jaycee needs may be easy to spot or I may have to decipher what's wrong. 

"Mom" can be said in a frustrated tone. Jaycee may not understand what's happening in a particular situation, and I need to try to explain something to her. 

She has a scared voice that she uses with my name. "Mom" may mean I need to reassure her that everything will be fine. 

In the past year, Jaycee has developed a "mom" said in teenager tone. If I do something to embarrass or annoy her, she lets me know in the specific tone she says my name. 

The first few years of her life, I barely heard any words come from my daughter. Jaycee first called me "mama" much later than most children. Her tiny voice was so sweet and hearing my name even sweeter. 

I am her mom. It's a role I adore and take seriously. I haven't always known how to simply be her mom while navigating all of her needs. It's been a complicated journey. 

When my daughter was born with Down syndrome 14 years ago, I was a scared twenty-something, first time mother. I didn't have much confidence in my child rearing capabilities at that time period; I certainly didn't think I was equipped to tend to Jaycee's unique needs. It is no exaggeration to say that her care was extremely intense for the first few years. At first, the primary concern was her heart defect that needed two open heart surgeries, oxygen at home for a few months, and medications for awhile. My calendar became filled with specialty appointments for her heart and other medical conditions. I had barely ever stepped foot in a hospital prior to this; I was suddenly forced to learn the ropes quickly. 

Back then, I was a new mother who wanted nothing more than her daughter to be healthy. Her care required me to do a bit of nursing at home. Being her "nurse" was something I was unprepared to do. I did not know the basics like filling up a medicine syringe let alone more difficult tasks like watching for signs of worsening congestive heart failure. It was overwhelming, and I second-guessed myself often. I felt the weight of being responsible for her little life. If she wasn't gaining weight or keeping down her medications, I felt it was my fault. Being Jaycee's mom meant doing the medical stuff that sometimes made me feel stressed, uncomfortable, and worried. I did all that was required of me and then some, but my motherhood encompassed medical aspects that many moms do not understand. 

It was a heavy burden that I tried to carry far too long. I felt that if I did everything right, I could achieve her healthiest self. What I didn't understand at the time was that there were many variables out of my control. My parenting and nursing skills couldn't prevent all the issues with her eyes, heart, lungs, and ears. Finally understanding that was freeing in a way. 

Early on when my thoughts were consumed with medical issues or basic baby care (like those months of lovely round-the-clock feedings), her developmental needs kept me busy too. We started her in home therapies when she was two months to address her low muscle tone and delays. It was a blessing and a curse to have home therapies. I loved having access to well educated therapists in our home, but I put way too much pressure on myself to address her delays in our mother-daughter time. I became my daughter's therapist, which wasn't always a good or noble thing. Being a speech-language pathologist who works with children only intensified the blurry lines I created between assisting my child in her development and personally trying to fix her delays. Therapy was part of my motherhood experience but sometimes it became too much of my focus. 

These are examples of how I struggled to find balance in being mom to Jaycee. I let aspects of her care take center stage. It was hard for me to simply sit down in a rocking chair, hold my baby, and be in complete peace. We had those moments; don't get me wrong. Her diagnoses and extra needs often kept my mind and actions busy with a running lists of concerns, to-dos, and fears. 

I'm so thankful for personal growth because I eventually found the balance I desperately needed. I discovered how to take care of my daughter's medical needs and help her achieve new skills while being a fun and loving mother. I have become the mother that my child needs, loves, and appreciates. When she calls out for "mom," I am there, ready to help her with whatever she needs. 

I'm happy to do all of that for her. She's my daughter. I'm her mom. There's nothing more natural than that. 

October is Down syndrome awareness month. Each year, I try to spotlight some aspect of Down syndrome to bring understanding to those not personally acquainted with an individual with Down syndrome. I encourage you to learn about Down syndrome, appreciate those with differences, and celebrate the lives of those with the diagnosis.  

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