I grew up with 2 sisters and 4 brothers, and I have always said my brothers were meaner than dirt. I played rough football, basketball, mowed the pasture and lawn, got punched more times than I can recall. I worked in the garden with my grandma, baled hay, and rode on the bush-hog with my grandpa driving the tractor. De-tasseled corn walked beans and can make a mean stew or scrambled egg/bologna combo.
Princess was not a term I was used to other than reading fairytales. My dad didn’t want to hear any complaints, so unless you were on a deathbed, you got used to working through not feeling well or a mild ailment. If you asked anyone who knows me well, I doubt you could find anyone who thinks of “princess” as a way to describe me.
I did, however, LOVE LOVE LOVE babies. My oldest sister had her first when I was about 5, and her children became my obsession. I wanted to and did care for them as if they were my very own. I wanted to be married and have babies, and that is how my life has played out.
My first child is a beautiful fantastic blonde, blue-eyed boy. He is all things boy and was from the moment he could interact physically with a ball. In fact, “ball” was among his first words.
I’ve written my dreams for my children are based upon their souls and what they show me. What they wish for their life at a given time, as it changes as they grow and mature (or don’t mature as the case may be), and I am there to help pave the way for those wishes but keep them on a path toward education and learning to be a good human being.
Maybe it’s because my wishes weren’t options among 7 kids, and I often didn’t feel heard, but either way, when Larkin was born and diagnosed with Down syndrome, my world didn’t cave in because I didn’t have the “death of a dream” problem. I didn’t feel those emotions yet because we struggled with her health for so long ~ my focus was on getting her healthy, healing her brain, and hopefully finding a quality of life for her.
Until today when I watched the royal wedding. I watched as Kate stepped out of a car where her father sat, her sister billowed her beautiful train, and she stood as an absolutely gorgeous regal bride. She was stunning, and I took a hitched breath as I watched a family event unfold.
One of the twins, Erin, looks just like Larkin. I have been going through photos on my camera cards, and last week I stopped because I had to read the date to figure out if it was Larkin or Erin. Chase once asked me what Larkin would look like if she didn’t have Down syndrome, and I answered him honestly in that I hadn’t really thought about it. I have loved her face since I first saw it, and just like his … I wouldn’t change a thing.
So I hadn’t considered how she would look without the features of Down syndrome. Her beautiful almond eyes & button nose. Her amazing smile and the frown that will turn her entire mouth upside down.
Then came along Erin, who is the spitting image of Larkin; only Erin doesn’t have the features of Down syndrome, so occasionally, it’s a bit of a hiccup to my heart when I see Erin doing something that so resembles Larkin. Those hiccups “what might have been,” and then I breathe and keep moving as my father has always expected of his children.
Watching the royal wedding made me think of my daughters and what they might look like as brides, who they might choose to marry, and maybe … babies. My girls may not want those things, and they will show me through their spirit and actions what and who they will be with our guidance and love.
She will never be a bride, and she will never have a child. Those are my sorrows, and those were my dreams, not hers, but they are real feelings a parent has for a child, and I hadn’t stopped to think about until the twins came along, today they watched the TV with me ~ and Kate stepped out of a car. I go back to my touchstone of Jeremiah 29 and remember the message. Don’t listen to other people’s dreams or ideas, and God does have a plan and a place for Larkin. He makes no mistakes, and the difference Larkin has made in my soul has made me a better and more compassionate human being.
I see things with clear peripheral vision, but before her, it was more tunnel vision. She lit the fire of passion in my soul to make a difference in our community and the world. A little girl that might cause those who don’t know her (or me) to smile with pity or think how sweet she is ~ but not fully understand the impact of loving someone with a disability and how it makes you a more evolved human.
I shed tears this morning and again as I type this thinking of how beautiful Kate was in that dress marrying her prince. Kate’s looks remind me of Erin, and I thought of how she might look on her wedding day, which led me down the thorny path of “what might have been” for Larkin. Thankfully I don’t go down that path often and remind myself to live in the moment and be grateful.
I am sure tears will often fall in life as we watch the twins & Chase hit milestones and move into their own lives, and their sister won’t have those same opportunities. That is natural and a part of grieving, which all parents and those who have a loved one with developmental disabilities know very well.
My dreams are there for all my children, no matter their strengths or differences, and today I shed a few tears for a couple of dreams that I know will never be the reality.
I will eventually dry my eyes and keep moving just as my father expects .. right after I adjust my tiara.