The Gift of a Wheelchair-Accessible Van

Written by Olivia B.

The Gift of a Wheelchair-Accessible Van
It was a party in Northland at Longwood’s foyer as people gathered around a family on the brink of a life-changing moment. A young woman named Karmann sat, dressed in her Sunday best, in a large wheelchair. She let out peals of laughter every few minutes, drawing smiles from her mother, Christina, and sister, Kayla.

The family was awaiting the arrival of a wheelchair-accessible van, a gift from the joint efforts of the Michael Spano Foundation and various Northlanders and distributed churches.

The Gift of a Wheelchair-Accessible Van“People don’t realize how limiting it can be to load over 150 pounds into and out of the car every time we go somewhere,” Christina explained. “When people help me transfer Karmann and the wheelchair into our car, they ask, ‘How do you do this every day?’”

After Losing a Child . . . Then What?

sunlight through dark clouds

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.

The Empty Space of Losing a Child

starry sky

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.

Having a Child with Special Needs . . . Can Be Complicated

A man holding hands with someone in a wheel chair.

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.

Are You a Nonprofit Leader Who’s Letting the Tail Wag the Dog?

children reaching for the sky

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:

Living with Loss

Photo Credit: jessica mullen via Compfight cc

Photo Credit: jessica mullen via Compfight cc

If you’ve been living with loss of a loved one, you’ve probably discovered that it’s a process. I’ve been in this process for almost six years now, and I’m still amazed by the things I keep learning. Like just yesterday.

I was rummaging through the closet in my home office. The mission was to scan and toss all the old files that are no longer relevant. And, then it happened. There before me, several large folders filled with yet more of my son’s medical records.

When you have a child with a disability, you save everything because you never know when a doctor, psychologist, therapist, or even lawyer is going to ask you for a date, time, or diagnosis. We have mounds of paperwork that represent Michael’s journey.

I take a quick glance through the first record, and quickly snap the folder shut.

How to Prepare for Loss of a Loved One (Revisited)

Photo Credit: James Whitesmith via Compfight cc

Photo Credit: James Whitesmith via Compfight cc

Many of my friends are losing parents in their 90’s. It seems like every time I turn around, I’m heading to a funeral. A few of those funerals have even been for much younger spouses. If you’re someone who is dealing with end-of-life transitions, this post is intended to ease your fear.

Celebrate the Loved One’s Life

I decided long ago that funerals should be a time of celebration.

I came from a family of Roman Catholics. Wailing at funerals was my grandmother’s specialty. For most of my life, I thought that end-of-life transitions and funerals were supposed to be morbid and depressing.

Well into the planning stages of my own son’s memorial, however, I realized the importance of celebration. Frankly, I couldn’t handle the drama. I simply wanted to bask in the joy of loving Michael.

Since that time, I’ve determined that the agony of loss, that internal wailing, is really for ourselves. We weep for that void in our lives. However, if we’re focusing on the person whom we love rather than our own pain, it’s really much easier to prepare for the loss.

When Life and Death Intersect, What Are the Rules?

Photo Credit: Rennett Stowe via Compfight cc

Photo Credit: Rennett Stowe via Compfight cc

Our son Michael’s birthday was last Wednesday, and even though it’s been over five years since his passing, my husband and I still haven’t quite figured out how to honor this most important day of our lives.

Something is over, and it feels a bit awkward celebrating a new beginning when it’s already past and gone. When something is over, it’s not just different or changed. It’s done, complete, final. Never to be again.

I woke this April 3rd wondering, when life and death intersect, what, then, are the rules?