September 4th marks the day our son Michael officially stopped breathing. One minute we were all packed up and ready to leave the hospital—in the next his lips began to quiver, and we were suddenly marching down a dark road to nowhere.
It was a horrific scene. One of those Grey’s Anatomy moments when everyone comes rushing in. Code blue, red, whatever. Suddenly Michael was their child, no longer mine. I’m shoved out the door—just one more hysterical mom in the hallway, out of the picture, erased from his life.
It’s taken me six years to stop reliving every second of that hour. Still, when I wake on this day I remember that September 4th marks that moment when Michael officially left us.
I’ve hit that empty space of loss again. It’s like a wave that never subsides, only diminishes in shape and form.
Seems I’ve been writing about spaces a lot lately, in-between spaces and sacred spaces. Now, another kind of space has emerged. That empty space of loss where I’m reminded of the awkwardness of life without Michael.
I’ve come to accept these empty spaces. Yet, as we near the anniversary of his passing, I still hunger for the sound of his voice, the touch of his skin, the smell of his hair.
There is good news. After almost six years, my joyful memories of Michael, once overshadowed by the nightmare of his last seventeen days, are now resurrecting.
Still there are moments. . . there will always be, empty spaces.
If you have a child with special needs, you know life can be complicated. The nature of those needs is irrelevant. It doesn’t really matter if your child is physically challenged, has visual issues or is learning disabled. When a child—your child—has special needs, a different kind of parenting is required. Once that child enters into adolescence or adulthood, things get even more interesting.
Our son Michael was born with a rare metabolic disorder known as Cytachrome C Oxidase Deficiency. I remember meandering our way through a young allergist’s office one day when Michael was in the third grade. By this time, we already had a host of specialists we saw on a regular basis, so I was used to the look of perplexity that swept across a new doctor’s face when I offered up Michael’s diagnosis.
Image credit: geralt via Pixabay
If you’re a nonprofit leader who sometimes feels like the tail is wagging the dog, this post is for you.
At the heart of everything I do, I am first and foremost, the mother of a child with special needs. Even though our son Michael is no longer with us, I still get calls from parents who struggle with nonprofit leaders who are so busy working the business they sometimes forget why they exist in the first place.
Times have definitely changed, and in my many years of working with nonprofits, I’ve come to realize that such leaders can enhance their capacity to fulfill the mission by exploring three specific questions: