Reflections Around the 16th Birthday

First off, it's been months since I have posted. I do write each month for Key Ministry, and that's often all I have time to write for lately. (Here's a post from January on their site if you missed it.) I do like to write when I am inspired or have something on mind. Lately, my thoughts have been centered around an upcoming milestone.

My daughter with Down syndrome will be turning 16 years old in a few weeks. I truly do not know where all this time has gone. I have a hard time accepting that Jaycee is getting older and not my "baby" anymore. She is closer to the age of adulthood than childhood. At the same time, her disability has her functioning at a much younger age. 

Jaycee needs light help with activities of daily living (i.e., showering, wiping, cutting up food). She still likes to watch Cocomelon and other shows geared toward young children. There is this strange dichotomy between her age and developmental level. There is a balance in seeing her grow up while acknowledging that she isn't like others her same age. At times, this difference is front and center. 

In the past year, I have scrolled through pictures and posts on Facebook featuring some of Jaycee's previous regular education peers. I have seen celebrations of getting a driver's permit and license. My sweet daughter is struggling to remember that a nickel is 5 cents and to read a simple sentence, so a driver's license is not even close to being a reality for her. I have also seen pictures of peers at school dances in fancy dresses. I made the choice to send Jaycee to a school that does not offer these opportunities. It's really not a big deal in the long run. For a moment, however, I consider 'what might have been' for my daughter. Her life, and mine, would be much different in an alternative reality where that extra chromosome was not present. 

I wonder what kind of teenager she would be like had things been different. Would she be interested in boys? Would Jaycee be athletic and part of school teams? Would she be a socialite or prefer to stay home? What kind of vehicle would she want to drive? Would she slam her door in my face in a heated exchange or roll her eyes at me? Would she want to spend time with me? 

I picture her wearing the pinkest dress she can find to school dances. Would she still like pink in this alternative reality? I picture her dancing without any reservations much like she does now surrounded by a group of friends. I imagine that on her birthday she would take her used compact car to the driver's license facility. She would be a ball of nerves, but she would pass her test. Later that day, she would take her first solo trip in her car while I sat in my living room tearfully thinking about how grownup she is. 

For some reason, this birthday has made my mind dream and reflect a little. That doesn't mean I am unhappy about our lives-simply curious. After all, our family is on a much different path than most.

This birthday still signifies much for us. We are using this age of 16 to recognize her growth and track towards as much independence as possible. In the last few weeks, we have made changes to her bedroom. The Beauty and the Beast wall stickers have been peeled off. When the live action version of that movie came out, Jaycee watched it at least 100 times. She absolutely loved the characters and songs. It's not her favorite show anymore, so her decor centered around the movie is being replaced with more teen friendly items. 

The big hair bows that she insisted on wearing at one time have been packed away too. She hasn't been wanting to wear them recently, and they are designed for young children. Now is a good time for them to part ways. 

There are other things that are being replaced or removed. So far Jaycee has not really cared about the changes, which probably means she was ready for them. 

As we talk about her upcoming birthday, she tells me she wants a "pink party dress." When looking at pictures of cakes, she gravitated toward layered cakes, mostly with pink hues and flower accents. She wants her cousins to help her celebrate her birthday. Jaycee is still a bit confused on when her actual birth date is, but we will make sure she does not miss it. 

Despite everything I have wrestled with lately, I have no doubt that Jaycee's birthday will be joyful. After all, this girl has survived two heart ablations, two open heart surgeries, and a dozen or so bouts of pneumonia. I prayed so many prayers to God that Jaycee would live through one health scare after another. There were days that I never thought we would see her turn 16 years old. So, her birthday- her life is cause to celebrate. We plan on celebrating with genuine smiles in a few weeks. I just hope to fine a pink party dress for her.