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Beyond the NICU

It is hard, if not impossible this time of year for me to reflect back on a late November day nearly 15 years ago, when my eldest daughter Hope came bursting into our world. Weighing only 15.6 ounces, and at only 24 weeks gestational age, our lives were forever changed.

Last evening, I was privileged to be able to share some of our story speaking at an event in a nearby town. Sharing stories of crisis, and laughter, of FEAR and gratitude. I shared stories of her birth, all of the little "coincidences" around her and the incredible journey we all have travelled.

In the early days of her life, we hung on every breath, willed her to breath it, manifesting the strength in her to carry on. Each week that I volunteer in the NICU, I see that again and again, so little, with such a will to live, battling through each day.

I believe the experience makes us stronger, more compassionate, more understanding, and more appreciative of life itself. As a parent, you are the advocate for your child, in the trenches every day, hanging on every breath, or pause between them. Your child is protected by the sanctuary of the NICU. Behind locked doors and an intimidating scrub station, lies a world many never have the privilege to witness. A world full of anxiety, celebration and grief, a world also filled with warmth and love and a lot of precious cargo.

But the NICU is not the real world, once you emerge from those doors, a whole new hosts of challenges emerge. There are no alarms which sound when your child faces difficulties or challenges in the world beyond your control. Certainly, as with any child, a parent does their best to protect, council and prepare them for the world the live in, but as we well know, control is an illusion.

I recently came across this statistic:
"66% of students with special needs report being bullied in school compared to 25% of students in the general population, according to the Disable Bullying campaign's Walk a Mile in Their Shoes report. In fact, students with special needs are 2 to 3 times more likely to be bullied than their "normal" peers." (

Two thirds, I can hardly believe my eyes, two thirds report being bullied. How as a society do we accept that? How as parents, who fought for every breath, every day prepare our children for the near certainty that some other child will choose to victimize them? I have long been of the opinion that bullying can be summed up in four words....Hurt people, hurt people. But that is not where that concept ends, read more below.

“Hurt people hurt people. We are not being judgmental by separating ourselves from such people. But we should do so with compassion. Compassion is defined as a "keen awareness of the suffering of another coupled with a desire to see it relieved."  People hurt others as a result of their own inner strife and pain. Avoid the reactive response of believing they are bad; they already think so and are acting that way. They aren't bad; they are damaged and they deserve compassion. Note that compassion is an internal process, an understanding of the painful and troubled road trod by another. It is not trying to change or fix that person.”
― Will Bowen, Complaint Free Relationships: Transforming Your Life One Relationship at a Time

Does that mean we should sit idly by and see our children victimized? No. In recent days the media has been filled with reports of the abuses at Penn state. Another report of a special needs child being verbally abused by teachers that was only dealt with after parents audio taped the child for several days. Debates of who knew, who may have intervened, and who turned a blind eye and what each of their responsibilities to ensure that the victimization be stopped. Are parents who sit by and do nothing to intervene as guilty as the perpetrator? What as parents can we do? Has bullying/abuse become acceptable in our society?

How do we begin to see through the anger and see the perpetrators as damaged and deserving of compassion? Is it possible to turn the other cheek without turning a blind eye?

Today, on this day of the awareness of prematurity, we honor those who have struggled to be here, to those who care for and protect them, and those who continue to face challenges long past the days of the protective gates of the NICU.