Our Special Needs Sibling: Growing Up with Susie.

Our Special Needs Sibling.

My sister is aging. I can see it in her sweet little face and I can see it in her shrinking little body. She is shorter than she used to be. She is hurting from her arthritis, and it is hard to see the pain in her face.

But at the same time, she is still Susie. She is still ornery. She is still referring back to our childhood days and the inside jokes and stories that only we understand.

We are all aging but for some reason, it is harder to accept in this childlike human, and it makes it harder to say goodbye at the end of each visit.

We have been so blessed to have her with us for all of these “bonus” years. She wasn’t supposed to reach her twenties, but here she is verbally reminding us that she will be 56 soon.

Susie loves birthdays and now that another calendar year has changed, she reminds us of how old she will be “soon” on a frequent basis.

We remind her that my birthday comes first (March) and a few others next, THEN comes her birthday but she already knows that.

She knows all of the birthdays. Last night when she said she was almost 56, we started quizzing her after each announcement. “What day is Destiny’s birthday?”

Susie replied, “May 12th. But I’m going to be 56 soon.”

“When is Dave’s birthday?” She puts her head in her hands and doesn’t want to say it out loud, but finally says, “September 11”. She doesn’t want to say it out loud because she is reminded of the sadness of “9/11” but adds, “I’ll be 56”.

We play the game until she gives us a dramatic eye roll and says, “No more. I’ll be 56 soon.”

She’s all about habit, repetition, and routine but the one-liners that occasionally pop out of her mouth make us laugh. Like when we hear her use the “b-word” when someone on TV has annoyed her.

She is very political, “hates” many politicians, and loves to vote. She can change her mind in a heartbeat depending on who’s around her, but her “beliefs” are solid.

She’s a good “hooky” player and drives Mom a little crazy when she discreetly calls the bus to announce that she won’t be going in to “work”, as Mom knows she’ll turn it all around within a few hours and be “fine”.

She is all those things and so much more, she is Susie.

With all of her funny routines, her opinions, and stubbornness, she is our Susie. The gal who as a seven-year-old spent 87 days in the hospital after having major open-heart surgery.

She has an artificial/pig’s valve, has had more pacemakers than we can even count, and is Mom’s “miracle child”.

It was hard to have an ill sister at times in our life. There were times when my brother and I lived with grandparents during the longer hospital stays so that Mom could be at Susie’s bedside.

But I wouldn’t change that a bit – not even for a second. As a mom, I know that Mom was exactly where she was supposed to be.

But there are also early memories of days when it was embarrassing to have a special needs sibling. Acceptance of individuals with Down Syndrome wasn’t a “thing” yet, and sometimes it was a bit scary.

She taught our friends and classmates what it was like to be around someone special and they all benefited from it.

There was an initial awkwardness or “fear” from some, because it was new to have people like Susie “out of the shadows”. But that was okay, they figured it out and soon knew what it was like to be loved by Susie.

Susie attended a special school, rode a yellow bus, and was stared at a lot. But she didn’t know she was different. She just knew she was our sister.

And loyalty? Don’t even think about crossing Susie’s sister or brother! Hell has no fury like the wrath of a sister! If anyone ever mistreated someone Susie loves, they were out for the count. Period. And boy, would she let it be known!

She loves being included and that is why my mom, my brother, and I know how blessed we have been by the amazing friends we have. They have all included her and loved her through the years and they still do. (And they still laugh at her “Susie-isms”).

• 

• 

• 

Susie is a great auntie. Auntie Susie loves her nieces and nephew and also loves to boss them around. She has a little wooden plaque that says, “Best Aunt Ever” from our nieces. I could take offense at being considered number 2… but I don’t. I’m okay with Susie having that title. 

• 

• 

The title of number one niece is also a title Susie has given herself and I accept being number 2 there as well, after all, she is quick to remind us that she is the oldest!

Susie is a lot of things. A whole lot of eye rolls, giggles, and personality. I guess you could say a whole lot of wonderful in one tiny little package.

But most of all, she is our sister, and she hates when we are apart.

I will miss you too!

Love you Susie Q.

See you “soon”.