If you have read one post about my family then you know that the youngest member of the clan is a sweet & spicy, sassy & spunky young lady. She is smart, an excellent selective listener, wannabe twerker and chef. She also happens to have Down Syndrome.
By now, most folks know that is a spontaneously occurring chromosomal arrangement. It is also the most common one. Each person, like all people, are unique. The arrangement (please know regardless of how you feel, this is not viewed as a disorder or disability in my home) affects every one differently; there is a wide range of outward and inward variety, but there are some prevalent commonalities in personality and in accompanying medical diagnoses that are screened for very early in life.
I have a friend who also has a daughter with Down Syndrome, or Trisomy 21. Annually she writes these super cool posts about 21 things she loves about her girl. I tear up every year and vow to write my own, but alas! So, I am just going to say a few things in general.
Get over your grief
Get with it! Seriously. Individuals with DS or any thing or not are all just humans doing the best they can with what they have. And to be clear, these folks have a lot. They have abilities, talents, dreams, and feelings. Believe me when I say I meet folks all the time, including new parents to children with DS, who do not have this viewpoint. I honestly feel sorry them. But I also try to help them to understand that it is okay to grieve. Grieving the loss of the “life” you had hoped your child or family member *could* have had is normal. Especially when you view people like my Boo as some how intrinsically “less than”. But then, friend, find a way to get over it because life is going to come at you and there are a ton of things that you do not want to miss.
Attitudes have certainly changed, but not enough or enough people. Fun fact: my daughter is the second child I have given birth to with DS. 15 years apart. There is a big difference in the way I viewed her birth and the subsequent confirmation of DS. This time I hit the ground running with information and lessons learned. My son died from complications of pneumonia when he was two. And even with the little experience I had as mom with him, I had racked up a few more years with my eldest daughter, who was 11 years old when sis came along. I took it one day at time as there was no other way. I went into parenting this child with eyes wide open and was proven wrong countless times when it came to setting expectations, especially limitations. So, we threw previous conceptions out the window and we’ve been hanging on for dear life every since. We are a bilingual household and she’s done well understanding in two languages. She’s learning to ride a bike and swim. She’s reading some words and learning to use a calculator. She’s a professional YouTuber…lol. She doesn’t see herself as limitless and we don’t impose any on her. She’s a joy; a student and a teacher. She’s also very bossy and stubborn and makes a lot noise. She’s a typical kid who happens to curse like a sailor. Ah, well. She’s belongs to us!
Love more fully
This last little bit isn’t so much about what you bring to the life of a person with DS, but more about what you can expect to learn from an individual with DS. There is no way for me to truly express how much wider and deeper love became with this kid. Not just for her but for everyone. There is something so magical about happens when you truly accept the sheer power of pure love. As much of a hellion she is, she’s also perpetually innocent. She loves unconditionally. She’s never known anything but that love reflected back so just gives that kind of love to everyone. It’s a kind of heart-pumping, soul-expanding love. Don’t get me wrong. She’s basically a horrible listener and it seems like she understands but really she doesn’t. Not in the way you want. She destroys the stuff of her older sister, still writes on walls, and the fear of her just going off with a stranger with snacks looms in the back of my mind. But, she’s sweet and genuinely loving and oblivious to flaws of mankind. She can ask you the same question for ever…Then when you think you’re going to lose it if she asks you one more time about slime, she puts those chubby little hands on your face and tells you she loves you. And means it. She waits patiently for you to reciprocate. Then she sits in your lap and hugs for like 5 minutes. And you’re like, okay I’ll order the slime. Then she’s like okay. And hugs you for five more minutes. And you weren’t expecting it so you’re in a bad position and your legs are numb because she’s heavy and totally relaxed and supported by you. But your heart is happy. Always.
So be ready for that part. It’s the one that you experience the most often. It’s the reason why I’m a better wife, mother, sister, friend, daughter. Because that is the love I’ve been gifted through this child.
As a way to bring awareness to these fantastic individuals, their worth, and loving influence, break out your attention-getting socks and wear them on 3-21. This day was chosen to symbolize a reference to their being 3 genes on the 21st chromosome.