Unfortunately, even though I write about being ok with the stares of strangers and being ok with questions about Austin, I still find myself avoiding those situations if at all possible. I avoid eye contact. I busy myself with "entertaining" Austin. I dig through the diaper bag. I adjust his harness. Or I just look at my phone, the ceiling, the floor. I do not make eye contact unless absolutely necessary. And I don't know why because I really don't mind answering questions about his differences or letting children or adults try to interact with him. I want those things. I really do.
However, deep down, I probably do know why. I'm still afraid of those instances when I catch someone staring or being curious, and I begin to smile or encourage an interaction, and they shy away instead. Somehow, when that happens I feel all the lovely rejection emotions for either myself or on behalf of Austin. Or I feel shame. I know. I mean there's nothing to be ashamed of. He's just a kid with a few medical challenges, none of them his fault. And of course, everyone says they aren't my fault either. So it can't be shame....
So there I was being all busy with Austin when a young mom bottle feeding her new baby plopped down on the bench next to me and started asking all the probing questions. I braced myself to be happy, enthusiastic, and positive. I mean this is who I want to be. Let's do this.
"How old is he...?"
"Does he have Downs or ....?"
"When did you find out about...?"
"Oh! That's when we found out too!..."
Wh...wait...what?
And that's when I came out of my little internal world of "all about me" and noticed for the first time the baby she was holding was a tiny newborn, probably a preemie, with Downs Syndrome. The young mom was in her teens.
I'd never seen a preemie up close before. I'd also never seen a newborn baby with Downs.
"...yeah, my mom is going to be here in a minute...she's helping me...my boyfriend won't even touch her yet..."
"Oh", I stammered. And as the gears in my brain slowly shifted away from me and my anxiety over being questioned about Austin, I realized this overly chatty young girl was looking for support from another mom who appeared to be surviving this special needs life.
But I had no plan. My mind was spinning, searching for the right thing to say.
I asked if she was getting support services. She said yes. At some point, I warned her that she might experience a period of grief over unrealized expectations, and that it was ok and normal. She said she thought her boyfriend was experiencing grief. I assured her with the most confident smile I could muster that eventually all of this would feel very normal. That things wouldn't seem so daunting. I think I told her it took me 4-5 years to come to this point of acceptance. Not sure that was the best thing to mention.
Then her name was called at the front desk.
"Can you watch her for a minute?" she asked as she set the baby in a carseat and nudged her in front of me.
Caught off guard, I stuttered an "um...sure" and watched her go check in. She was so young, and yet already being handed a huge challenge in life, something I didn't experience until I was 40. She was just a baby herself, nervous, searching for hope...from me.
I stared at the baby in the carseat, so tiny, so innocent and beautiful, and beginning to fuss and cry just like any other typical baby. I spoke to her in my high, mommy voice trying to soothe and assure her she was going to be ok, that her mommy was coming back in a minute. I rocked her carseat with the toe of my shoe.
I thought about how young this mother was and how she was just at the beginning this journey. How much strength she would need to get through the next few months or next few years. How many tears she might shed. How scared she might be. How strong she was going to become as she advocated for her child's health, education, and acceptance.
This whole encounter was a wake up call I haven't been able to shake. While not always easy, caring for Austin has become my normal. So it makes me wonder what my role is in this special needs/medically complex world? After having been consumed with my own disappointment and grief for so long, and now that I'm finally coming out of that phase, do I have a bigger purpose? Do I even have time "to give back"? Do I want to?
I don't have these answers yet. I'm reluctant to jump into something just to be doing something. I guard my energy fiercely. I've even been thinking lately that I don't identify as much with other special needs moms. There was a time I lived and breathed every word other moms wrote about this life. But lately, I find myself impatient with the words they write. It was as if they were needed for a time, they served their purpose, and now will serve their purpose for someone else. But maybe not me anymore. I've actually been having sort of an identity crisis.
So for now, I think I'll just try to be more aware of my surroundings especially in a clinic or hospital where I may be more likely to encounter someone looking for support. I'll try not to be afraid to make eye contact. And at minimum, whether in person or here on my blog, I can continue to share my story, and say with some degree of confidence, that I eventually perceived my situation as manageable.
