I Have This Fear That People Think Our Story Is Sad


Several years ago when my daughter Julia was about 2, I met up with a friend for coffee at Starbucks. We had just settled in to our seats with drinks in hand when two little ladies shuffled by us. Upon further inspection and a little eavesdropping I realized the pair was an elderly mother with her adult daughter, who had Down syndrome. Both my friend and I observed them for a few moments before turning back to each other. I was about to comment on how precious the two of them were when my friend spoke first and somberly said, “Some days you see the sad ones.”

I’m sure my face fell. Sad ones? I had not expected that.

I don’t remember what I said in response; I probably just tried to move us quickly on to safer ground. But the moment stuck with me. We had just witnessed the very same scene but saw two very different stories.

I saw happiness and family. I saw something I prayed for in my own story: many more years with my daughter.

My friend saw sad.

***

I have this fear that people think our story is sad.

That people hear or see “special needs” and automatically categorize us as sad.

And no matter how many times I profess the opposite, some people will continue to think my words are nothing more than a positive spin on a negative story.

And no matter how many different ways I try to explain that Julia is a blessing, people will assume I am simply making the best of a bad situation.

I fear the assumption will remain for some that we are putting on a brave face to hide our disappointment. That we are somewhere between a saint or a martyr for loving our child. That we are admirable for continuing to put our best foot forward given the hand we’ve been dealt, but the bottom line remains our story is sad and we are the sad ones.

And while I know I will never change every person’s mind on this, the fear of being so grossly misunderstood drives me to keep trying. Julia deserves that.

So once again, for the record, we are not sad about Julia.

We are not enduring her, we are not tolerating her, we are not suffering as a result of her. We love her, and we like her. And it hurts when loving her is seen by some as heroic — it hurts because nothing could be farther from the truth. It does not take heroism to love our child — and I wonder what I am doing wrong in telling our story that some would still think this is the case.

In regards to the compliments we are given, I am grateful for them and humbled by them. I know they are being given in kindness, and for that I say thank you! But I do not make the connection between Julia and these qualities. I hope I would be that kind of person with or without Julia. I have a long ways to go, but I want to be a positive, optimistic, grateful, strong, brave, vulnerable, compassionate person period. Not in spite of something or someone.

And the same is true when I do not display those positive attributes (which is most of the time). When I am moody, and negative, and anxious, and snarky, and grumpy, and overwhelmed — I am those things by my own doing — with or without Julia. She is not to be blamed.

If I am positive it is not an act of overcoming Julia; if I am negative it is not to be blamed on Julia.

mom and julia selfie If you see any good in me, it is by the grace of God.
And when you see the bad, the fault is my own.

A lot of people are happy in seemingly hard situations and miserable in seemingly great situations. I think we have to stop assuming we understand situations based on appearances and let people tell us how their story goes — and then believe them.

My story with Julia is a good one. My situation makes me happy. She is my best gift. She is not the hard part of my life; she is not where I have to be brave or dig deep.

In her memoir, Lena Dunham wrote this in response to people praising her: “It’s not brave to do something that doesn’t scare you.”

This is how I feel about my life with Julia. I’m not being brave; she doesn’t scare me.

What scares me is thinking about life without her — that is when I have to be brave.

A little girl with epilepsy died suddenly two days ago. She had been doing well recently, she wasn’t even in a really bad place with seizures. But she died. Unexpectedly. At the age of 13, while sleeping in her daddy’s arms, because of epilepsy.

This scares me.
And this is the sad story.
But not ours. Not yet. Not while we are still together.

So friends, will you promise me something?

Will you promise me you will try to fight the thought that we are a sad story? Will you trust that the story I am telling you is the true version? That Julia is a blessing, without qualifiers. And every moment we get with her only makes this story better.

And if, God willing, we are given many more years together, and we get to be little old ladies, leaning on one another as we shuffle side by side through Starbucks, will you promise to think to yourself when you see us go by, “Some days you get to see the really happy ones.”?

And that will be the truth.

Follow this journey on I’m Julia’s Mom.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


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