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.
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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.
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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.
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?
September 1st marks the beginning of a 17-day journey down memory lane. Memories I wish I could erase. Memories about the last 17 days of my son Michael’s life.
The loss of a child is one of the hardest things that any parent endures. It’s been four years now. Some things are easier. It’s true what they say about time. I can’t say that time heals all, but it does toughen the scar. Yet, every year, on September 1st, I begin the day by looking at the clock. Tick, tock. Tick, tock. I remember the exact moment in time when I received the call that Michael was in trouble. And the moment of his words, I love you and dad. The shock of code blue/red, whatever. And that final black hole I fell into when he took his last breath. All those horrid memories flooding in, and my wishing I could have stopped time, turned back the clock. If only I could have done or said something different that would have reversed the circumstances. Even still, I have these thoughts. Not only through the September days of mourn, but each and every morn.