Out for a nature walk over spring break

I suppose any parent can associate personal confidence with raising children. After all, parents spend decades doing all they can to keep their children healthy and happy, pouring blood, sweat, and tears into making their little people all they can be. I’m only three and a half years in, but let me tell you, there’s been a lifetime of blood, sweat, and tears pouring from this house already.

Despite what someone meeting me now might think, before having children I was happy to keep my head down at work and to spend quality time with just a few special friends when the occasion called for it. So when we learned our daughter would have Down syndrome, and later that our son would have an upper limb difference, the uniqueness of our family makeup wasn’t lost on me; neither were the optics.

Henry at music class

One of the scariest parts of having a special baby is that I no longer get to be a forgettable face in the crowd. I’m now an advocate, a sign language instructor, a fashion designer, and a performer, all while spewing out public service announcements that my daughter’s shouting means she’s excited and that my son is not in any sort of pain…and this is just during an average trip to the grocery store!

I’m constantly dreaming up ways to remain in hiding. Not because I’m ashamed in any way at all of my beautiful children, but because it’s just so much easier to not deal with the looks and the questions everywhere we go. Even when we go out and haven’t received looks or questions, we’ve spent energy taking notice of that as well. It’s so much easier to just do nothing.

Hope loving the New England Aquarium in Boston, a side trip we took before a day of appointments at the Mass General Down Syndrome Program

But what do my children get from nothing? If I’m feeling nervous about fielding questions about Henry’s arm from curious children, does that mean it’s okay to rob him of a morning of being silly at the playground? And if I’m tired and not much up for translating Hope’s expressions to her skeptical peers, does that mean it’s okay to deprive her of a fun walk through downtown to a yummy restaurant full of all of her favorite foods?

Henry’s first race! Mary’s Mile at the MTRF 5K in Mahwah, NJ

The only feeling stronger than my anxiety is the love I have for my family. Love wakes me up at 5AM to bake so that Hope can have fresh banana bread to take to school. Love understands that the boogers smeared all over my left shoulder just before leaving the house were absolutely worth the sweet hug I got from my little guy. Love even trains my belly to eat at 9PM so that my husband and I can have a grown-up dinner once or twice a week that requires forks and knives and sometimes chopsticks.

My children have taught me to be brave and to look past the superficialities of the world, straight down to what really matters. In my experience, the following is what it takes to penetrate that final layer of anxiety in order to give my children the very best I can give:

1. Don’t worry about what other people think of you. I focus myself physically on my children, who are relying on me to keep them safe and happy. When I maintain focus on them, the noisy rest of the world tends to fade away into the background.
2. The more you go out, the easier it gets. When Henry was new, I was terrified to bring him out. My husband told me I needed “reps” on it, and he was exactly right. I wasn’t afraid of responding to questions or looks, but rather I was afraid of the unknown. Not knowing how a situation can play out is very scary, but the more I do it, the easier it gets. And then there’s little left to fear.
3. Be genuine. Faking confidence or feelings results in shattered expectations for everyone. If I’m worried, I share my worries. If I’m excited over something that would be simple for someone else, I allow myself to be excited!

Some days are harder than others, particularly the medical ones. For those days, “Hercules” by Sara Bareilles* is pretty much all I need to get out the door. But all joking aside, no matter how our days go, once those little people fall asleep at night I tend to miss them horribly and watch them on the monitor, review the day’s photos, and replay videos to hear their voices babble oh-so confidently.

Hope and Henry are two beautiful little souls and I can only pray that for the rest of my life I remain brave so that they can shine.

Happy Mother’s Day!

*”Hercules” by Sara Bareilles (from the album “The Blessed Unrest“)

I miss the days my mind would just rest quiet
My imagination hadn’t turned on me yet
I used to let my words wax poetic
But it melted a puddle at my feet now

It is a calcifying crime, it’s tragic
I’ve turned to petrified past life baggage
I want to disappear and just start over
So here we are
And I’ll breathe again

‘Cause I have sent for a warrior
From on my knees, make me a Hercules
I was meant to be a warrior, please
Make me a Hercules

I’ve lost a grip on where I started from
I wish I’d thought ahead and left a few crumbs
I’m on the hunt for who I’ve not yet become
But I’d settle for a little equilibrium

There is a war inside my heart gone silent
Both sides dissatisfied and somewhat violent
The issue I have now begun to see
I am the only lonely casualty
This is not the end, though

‘Cause I have sent for a warrior
From on my knees, make me a Hercules
I was meant to be a warrior, please
Make me a Hercules

‘Cause I have sent for a warrior
From on my knees, make me a Hercules
I was meant to be a warrior, please
Make me a Hercules

This is my darkest hour
A long road has lead me out here
But I only need turn around to face the light
And decide flight or fight

‘Cause I have sent for a warrior
From on my knees, make me a Hercules
I was meant to be a warrior, please

‘Cause I have sent for a warrior
From on my knees, make me a Hercules
I was meant to be a warrior, please
Make me a Hercules