Why I Don't Always Appear Emotional About Our Hardships

I recently had two friends say to me that it would be nice if I could show more vulnerability.

When my daughter was growing up, I always told her that if one person tells you something about yourself, think about it. If two people tell you something about yourself, seriously consider it, and if three people tell you something about yourself, it may be a fact.

Cut to 1996. Probably the only thing I’ve ever meticulously planned was having my second child. We already had a perfect, beautiful and brilliant 3-year-old daughter who was anything but planned. But through luck, hard work and sheer ignorance, my husband and I, despite our young age and small bank accounts, made it work, so we thought, Why not have another? We went into 1996 thinking it would bring nothing but joy, happiness and perfection. Then in March — three months early — our son Miles was born, bringing with him fear, sadness and vulnerability beyond belief.

Miles was a little over 2 pounds and near-death at birth. My world flipped, enveloped and then proceeded to seemingly implode for the next 18 years, with a series of devastating diagnoses, multiple brain surgeries and physical and developmental delays. We became a family who spent its spare time fighting a school district and sleeping bedside on wooden chairs in pediatric ICU’s. Our daughter learned how to ride a bike on the hospital sidewalks. Miles spent his 16th birthday in the ICU. I’ve seen a mother at the hospital fall to the floor, violently shaking after her child had passed away in the room next door, and I’ve seen what the face of my child looks like when his heart rate drops to 20 and hordes of medical staff rush into his room. Believe me, I know vulnerability.

Every day we shower, shave, feed and dress Miles, and each day he eats the same thing. If I’ve calculated correctly, I’ve probably made more than 4,246 peanut butter and jelly sandwiches with raspberry jelly and no crust. We’ve probably made nearly 5,000 Boboli pizzas, and we should own stock in Goldfish. We’ve had to cancel plans. We’ve lost friends along the way because they don’t understand why we rarely invite them to do things, why we can’t go out to dinner with them or why we rarely attend functions as a whole family, if at all. Over the years, I became tired of the letdown I experienced. I’d become accustomed to loss and fear, and it began to shape me.

When Miles was younger, he was called a monster. He threw chairs over balconies at school. At one point he dislocated a teacher’s shoulder. He bit teachers countless times. I lived in fear that Miles would hurt someone and be taken to a residential facility. Fortunately, those days of violence have passed, and Miles has become a sweet and caring young man who loves music and trucks. He’s honored and respected at the local high school. Last year, he turned 18, was the Junior Homecoming Prince and learned to read through his iPod. On prom day, he buttoned his pants for the first time, he attended a pre-prom party and then went to the dance for a bit. My heart exploded with pride when he walked into the party and peers and their parents invited him into their group photos. My composure was gone when he jumped out of the car and proclaimed that he didn’t need us to walk him into prom.

For every sad, devastating and epically terrifying day I’ve had in the last 18 years, I’ve had more paralyzingly happy, proud and grateful moments — all bringing with them unfathomable vulnerability.

However, I realize I’ve become insensitive to my peers’ everyday (what I perceive as menial) angst. I lack empathy when their husbands spend too much time skiing, when someone forgets their name or when their child gets left out of playdates.  At any given moment, Miles can require a 911 call. I sometimes feel like I don’t have the time to worry about the small stuff. So when I do get to hang out with people, I don’t want to waste that special time being “vulnerable,” because I live vulnerably all the time. I want to spend my precious time with friends laughing, in good conversation and having fun.

So in being told that I needed to show more vulnerability, I’ve looked inside long and hard and come out knowing one thing: In my home, every morning, of every day, I’m excruciatingly vulnerable when I have to tie my adult child’s shoes. I melt when he cuddles up to me with his newly stubbled chin and gives me kisses. At his next brain surgery, I will sit in the waiting room with waves of fear washing over me. Every day, when I’m making the umpteenth peanut butter and jelly sandwich, I’m reminded that I’m so very lucky to be making it for him — again. Because I’ve learned that life is short and precious and that I don’t know how long I’ll have Miles — or anyone for that matter — and once again I’m paralyzingly vulnerable.

So friends, don’t worry. I am vulnerable beyond belief. I’ve just been on a long climb helping my son live. If, for whatever reason, you need to see me vulnerable, just stop on by when I’m getting him ready for the day or when he’s going to bed and I’m fortunate enough to tuck him in another night, or when someone asks me what he’s going to do for the rest of life now that he’s 18, or when I’m sitting in the back of an ambulance with him when his heart rate drops to 20. You’ll see exactly what you’ve asked for.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.