05/21/2013 01:31 pm ET Updated Dec 06, 2017

Message For All Moms: Love Your Kids As If They Were Dying

Suzanne Perryman

Tragedies that take kids too soon are always unexpected. As busy moms, it is hard to remember how fragile life is. We sometimes forget that the messy room, the lapse in homework, the bad grades, aren't the important things about mothering.

My day began like any other. I was up at 5 a.m. packing lunches and backpacks while trying to gulp down some coffee. I had an appointment at the office later in the day, so I spent a few minutes standing in front of my closet sighing before getting dressed and rushing through the morning rituals to drop my oldest daughter at school first.

Later, it is just Zoe and me in the car. The sun is streaming through the car windows. I put on some music and began making small talk with Zoe about her day.

I am used to the starts and stops in our frequent conversation. Zoe is almost 11 now, and a thinker, yet she slowly forms her thoughts, chooses her words and processes it into speech. There are pauses as she searches for the word she wants, and fatigue can slow the pace, slur the word. Remembering all the years she could barely even communicate, I wait patiently and am still grateful each time she begins to speak.

Her thoughts come in word pieces and listening carefully, I fit the puzzle together...

"Mom, when I grow up and become a Mom, would this be a good car for me to drive and how do you learn to be a Mom, anyway?" There it is, her question. And suddenly, it's as if the clouds have pushed the sun away, and my daily "cup half full" approach to life has been smashed to hell. Zoe can't see my face, and I am glad. I don't want her to know the raw pain that is causing me to to hold my breath.

My girl is growing up, and thoughts of the future are close, more menacing than when she was 5, and although she is an awesome kid doing amazingly well, she still has a progressive metabolic disease. She still has generalized epilepsy, kidney disease and although she grows more steady with the growing size of her body, she will always use a wheelchair and a walker to explore her world.

What I couldn't say to Zoe is that with her vulnerabilities I can't imagine her "being a mom," that her physical impairments alone will prevent her from ever driving a car. I refuse to even contemplate the complex medical conversations we have had about Zoe's life expectancy, we just don't go there.

In the last few months, I have heard too many stories about children lost too soon. There have been national tragedies, like Sandy Hook, the Boston Marathon and now the Oklahoma tornadoes. We have seen the images and heard the parents talk about the spirit of their child who will always live on. Within the special needs communities, we hear of children lost too soon from the families that were fighting and winning. Their kids survived surgeries, hospitalizations and the everyday challenges that often come with raising a special needs kid. These parents were managing their kids health, their kids were stable, even improving with therapies. Their parents were seeking refuge in that stability that meant success -- until the day their kids weren't stable. Until one day, they were just gone.

I am guilty of doing it too sometimes. Getting caught up in the day to day. Zoe is doing well, we are managing, we are "winning," and then an illness comes along, a news story, a medical test, or a conversation like this one Zoe and I shared -- and reality comes crashing through, grounding me again to what is really important.

And it's this reality that I wish every mom knew. It sounds harsh, I know... but it's a secret that special needs moms have learned along the way. It's something that I think all Mom's should know, or just think about sometime. That all that other stuff just really doesn't matter.

Commit to be present in their moment, love like they are the MOST important, love with that heartbreaking pain that comes with it. LOVE your kids, as if they were dying.

suzanne perryman