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?’”

Sharon and Ralph Spano, founders of the Michael Spano Foundation – named in memory of their late son – know all too well that Christina’s story is common among families with members with disabilities. Since the passing of their son, the Spanos have channeled donations given to the foundation to families like Karmann’s for the purposes of helping make their lives a little bit easier.

Karmann and her family began attending Northland two years ago after Karmann participated in Joy Prom, a formal event hosted by Northland’s Student Ministries for people with disabilities. Christina and Karmann then got involved with a distributed church that meets Sunday mornings at Northland, which includes a weekly Bible study for individuals with and without disabilities, as well as monthly worship and social connection opportunities.

The Gift of a Wheelchair-Accessible VanAs the van pulled up in front of Northland, those who had gathered to celebrate watched and cheered as Christina and Kayla helped Karmann wheel into it for the first time. Pastor Hunter offered a prayer over the family, and thanks were given for the power of a community that cares for its members.

“It’s hard for me to get my mind around this,” said Christina as she stared at the van. “I’m really in disbelief still.”

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.

For the next 13 days, we would go through the rituals of letting go. Phone calls, people coming and going, prayers, Michael stories, tears, all night vigils by his bedside. We would hope against all odds that he would once again open those big brown eyes.

Then, somewhere in the middle of it all, a young doctor I’ve never seen before entered the room and quietly suggested that we stop the nutrition.

Stop the nutrition? The words shattered my brain like cheap glass. Did he say, stop the nutrition? How can I, as his mother, stop nutrition when I’ve spent the last 27 years nurturing him to live?

I cannot. I refuse. If it must be done, let someone else give the order.

My husband bravely does what’s best for Michael when I cannot. I am useless.

On Day 12 we would release all hope. On Day 17, Michael would let go. And, we… we would be left to pick up the pieces of a life now cracked open.

But, the cycle of life spins on. You can’t believe it will, but it does. You cry. You mourn. You learn to laugh again. You have your bathroom renovated, and you pretend that it matters.

Even so, weird thoughts seem to be ever present. Like I woke this morning thinking about how odd it is that we are renovating a bathroom when six Septembers ago, we were renovating the kitchen. I had made the kitchen island smaller to accommodate Michael’s wheelchair. Now, I have a newly renovated kitchen and bathroom that Michael will never see.

There are restaurants that we go to that he’s never known. Babies have been born. Aging parents have passed on. In the midst of it all, his name is whispered. He is thought about and remembered. But, he is not here. I cannot touch him. I cannot hear his voice. Yes, life has gone on, but there is an emptiness about it now. An emptiness that will never be filled, and we are not the same people we once were. We will never be the same.

Still, Michael is everywhere. When the air breathes the slightest chill, I can hear him say, “Mom, it’s almost Fall.” I pass a car dealership, and his laughing voice teases, “I’ll buy you a Lamborghini on your birthday someday.” And so it is with every moment. Every thought, every action, every hope and desire somehow points to him. Michael, in the midst of it all.

Can there be a greater loss than losing your child?

In the first year, it’s like learning to ride a bicycle for the very first time. God is the big guy standing behind you, helping you learn how to balance in the darkness. But, then, as time moves on, He lets go. The numbing peace of grief wears off, and you’re forced to pedal on your own. Oh, He’s still there for sure, the ever-present Father, just in case you stumble and fall. But, you must learn to strengthen your own muscles so that you can move forward.

And when people see you pedaling down the street, they whisper, “Wow, look how great she’s doing. Look how she’s mastered her bicycle of grief. She’s moving through life much easier now.”

What they don’t see is that, on the inside, you’re still cracked and broken. The pieces are glued together by the love you’ve know, but they are pieces just the same. You’re no longer whole.

Here’s what I know. It is in the brokenness that we find strength. It is in the darkness that we find the blinding light of love and compassion for all mankind. We restore our hearts and minds toward God. We come to rely on He who is omniscient, almighty, and glorious. We come to find new purpose and passion in life. Yes, we are different, never to be the same. Yet, somehow, in our suffering and brokenness we come to be something stronger.

Perhaps that is the legacy of our lost child. Perhaps in their suffering they teach us how to embrace our own such that we transform our loss into something sacred and purposeful.

In her groundbreaking research, Bernstein (1997, 2010) speaks to several thought patterns that parents experience after losing a child. A few of those patterns are:

  1. Impatience with people who complain about trivial matters;
  2. A sense of empowerment and invulnerability to life’s hardship—as in no fear because the worst has already happened;
  3. A need to engage in deeper, more purposeful work.

I so get it. I’ve been living the first two perspectives for some years now, and I’ve been trying to figure out the third. I’m almost there.

Stay tuned. I think you’ll enjoy the ride.

Bernstein, J.R. (2011). When the bough breaks: Forever after the death of a son or daughter Kansas City, MO: Andrews McMeel Publishing, LLC.

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.

~

I’m in a small boutique on Saturday shopping with my friend Jeannene. It’s a rainy afternoon, and after an intense week of deadlines and to-do lists, we’re just looking to escape. I stand shifting through the new arrivals, when suddenly I’m struck by an odd consistent humming sound.

I turn toward the direction of the sound, but my view is blocked by several racks of clothing. As the sound continues, I assume that a woman with a young child is making a final purchase. I wonder, however, why the humming is not interrupted by a small voice demanding attention. Rather, it drones on like a gentle rush of contentment.

Moments later, I come ‘round the corner, and to my surprise, I stumble head first into the empty space of my own life. Before me is a family, a ghost of my own. A mother and father with their child. The father stands with both hands firmly planted on a wheelchair. In that wheelchair is his adolescent daughter.

I smile, lean forward, and ask the girl her name. But, she is a million miles from nowhere happily distracted by a small furry toy. She offers me a blank stare, and her father politely adds that her name is Renee; she is 19-years-old.

There is an awkward silence. The mother is watching me from the corner of her eye. I know what she is thinking. I’ve had those same stop and stare moments with my own child—those moments where you interpret every eye as judgment. People seem to silently click their tongues and say, “What a shame. I wonder what went wrong.”   

Is it a look of pity or grace? You can’t decide which but you want those people to move on, leave you and your child alone. You don’t want to make polite small talk. You don’t want their condescending expressions of sympathy. You don’t want to massage their curiosity. Because to you, your child is perfect, and you love him or her with all your heart, and you don’t want to explain why. Not because you can’t but because you know they won’t get it.

But, in this nanosecond moment, I’m staring for a different reason, and I want to say, “Please can I just stand here and watch her? I’m not judging your daughter. Can you just let me talk to her, touch her, hold her, smell her, kiss her . . . can you just go away and leave us alone for one moment, can you just let me look and remember what it was like to love and care for a special human being . . . someone who offers you all the unconditional love you can handle and asks nothing in return . . . can you just . . .”

The empty space lies in my inability to state my past and connect because how can I tell a mother who is smack in the throes of keeping her child healthy and alive that I have lost the battle?

And the empty space that I now live in is somewhere between a world of disability, a world of lost children, and a world of normalcy—women who have the luxury of shopping on a Saturday afternoon. I never really fit into any one of those worlds. It is the intersection of the three that is required, and since that rarely happens, I’ve come to rely on the grace of God to show me how the story of Michael can somehow intentionally add to His own.

We have moved through the awkward pleasantries, and suddenly, my mouth blurts it out. Out of my own selfish desperate stupid need to connect I say, “I had a child with a disability.”

“Had,Sharon. Did you say, “had”?

Oh, my gosh! I did. I said it, and I when I see the looks on their faces, I know that I have stabbed at the core of their greatest fear. Kids with disabilities die, often before their parents. Our greatest fear is that we will either lose them or that they will outlive us absent our watchful care. Fairy tale endings are rarely part of our story.

With my remark, the chasm between us grows and deepens for they dare not ask the details. They do not want to know.

And, I don’t know how to assure them that it won’t happen to them. Renee is 19. I remember 19 and how I still had hopes and dreams for Michael. I mutter something about their having a great day with their daughter and slither away.

Later that evening, while having dinner with my husband, there is another family. This one has a son with Down’s syndrome. I try not to stare, but my husband keeps looking over his shoulder hoping to steal a glimpse into their lives, into our past. It’s what we do.

Turns out, we’re not totally unique or crazy.

In her book, When the Bough Breaks, Bernstein (1997, 2010), speaks to the cycle of grief and the importance of accepting that we never fully recover. “We will mourn for our children every day for the rest of our lives,”she states.

There is no getting on with it in a day, a month, or a year. We are forever changed. We can never fill that empty space, however, we can adapt our lives to have meaning and purpose as a result of the loss.

We can grow into that empty space.

Bernstein adds that there is no supporting research for “the existence of distinct stages of mourning.”There is, however, a “progression of emotions that follows from initial shock and numbness, through the acute grieving, to gradual adaptation and integration of the tragedy into life.”

By all accounts of Bernstein’s research, my husband and I are well within the norm if there is such a thing. I totally connected with her story about following a young man in a supermarket because he had a beard similar to that of her own lost son.

“You see,”I told my husband after reading him this passage out loud. “We’re not crazy. We’re in the integration part. We see these families, and we’re learning how to adapt to being in their presence even though we’re no longer a part of that world. We’re good,” I say convincingly.

He nods silent approval. Still, we both know that the empty space of loss cannot be filled or relived vicariously through the life of another. We do our best to remember Michael for who he was and the difference he made in the lives of so many.

Until we meet again, this has to be good enough.

Question:  If you’re the parent of a child with special needs, and you ran into me knowing what I’ve just disclosed, what would you want me to say or do differently?

You can leave a comment by clicking here.

Bernstein, J.R. (2011). When the bough breaks: Forever after the death of a son or daughter Kansas City, MO:  Andrews McMeel Publishing, LLC.

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:

1. What’s Your Operational Focus?

Is your operational focus task-related or people-related?

This might sound like an odd question, but nonprofit leaders who run large organizations often get so caught up on what it takes to keep the machine running, they forget they are in the business of serving people.

The result of this type of operational focus is that the organization becomes more and more efficient but less and less effective. And, make no mistake about it. This focus stems directly from how task-oriented or relational the leader is.

For example, in the disability arena, I find nonprofit leaders who are doing all the right things to protect themselves from legal ramifications. However, somewhere in the midst of implementing policies and procedures, they foster staff who are more worried about meeting requirements than they are about quality of life for the people they serve.

If your operational focus emphasizes tasks over relationships, you’re probably one of those leaders. Here’s an additional question you may want to consider:

Are we, as a nonprofit, living out our mission of serving people in the way we originally intended?

In the disability arena, this would mean that the people being served have a better quality of life. They are integrated into the community; they have choices. And, they have direct care staff who are creatively addressing their needs not just executing the necessary tasks related to daily care.

Remember that all your policies, procedures, and systems are there to serve a humanitarian need. “People First”should be your underlying mantra.

When your staff comes to appreciate a more relational environment, they will be less fearful and more empowered to respond to the needs of your clients and your cause.

2. Has Your Constituency Changed?

What are your current demographics?

Most leaders can quite readily answer this question. However, if you’re a nonprofit executive, I would caution you to think through this question long and hard.

I have found that many high-level leaders have been involved with their organization in one form or another for perhaps several decades. They often fail to note that the demographics of their constituency has dramatically changed over time.

In the disability arena, for example, a new generation of parents has risen up over the past twenty-five years. They are more informed. They have been advocates across multiple complex systems. They have goals and dreams for their children that were never before imagined by past generations, and, in many instances, their children are living out those dreams.

These savvy parents have higher expectations for their loved ones, and because their children are living longer and have had more life experiences, they, too, expect more choices and opportunities for themselves.

Bottom line: nonprofit leaders sometimes fail to recognize that they are serving a completely different population. Such leaders are married to policies and procedures that exclude key stakeholders from the process.

If you’re one of those leaders who hasn’t paid close enough attention to the changes in your constituency, here are two additional questions you may want to consider:

  1. How have the people we serve changed since we started the organization?
  2. What can we do to more effectively meet their current needs?

Note that I once again stress the word “effectively”over efficiently. You’re probably already efficient or you wouldn’t still be in business. However, I challenge you to think of the endless possibilities that could surface if you consider these simple questions.

Times change. People change. While your vision and focus may remain the same, as a nonprofit leader, you never want to miss an opportunity to collaborate more effectively with the people you serve. Collaboration, however, requires going beyond why people need your services in the first place. I encourage you to take the time to learn what people are experiencing and how they feel.

What are the gaps in your system? Where and how can your current constituency contribute to your overall organizational goals?

3. What’s Your Share of the Market?

If you’re a nonprofit leader living in the past, you’re probably still thinking that people should contribute their resources to your cause because, well, after all, it’s a worthy cause, right?

One of the worst mistakes a nonprofit leader can make is to create a culture of entitlement. Entitlement causes leaders to become more and more focused on task orientation, the bottom-line, and just getting the job done.

In this type of organizational climate, the tail is definitely wagging the dog, and the nonprofit leader and the team burn out because they’ve lost the passion and purpose of the cause.

Remember that we no longer live in a society with two or three humanitarian causes. Today, there are literally thousands of nonprofits many of which are within your own community. Even the most generous are finding themselves overwhelmed by what efforts they should support. As a nonprofit leader, you can no longer hope that governmental funding, galas, or grants will sustain your organization.

What you need are philanthropic generous givers who are committed to your effort. When you have an operational focus that is relational and when you embody the wants and needs of your constituency, the money will flow. You will gain a greater share of the market.

People have a lot of choices about what organizations to support. It’s your job to make sure that you’re their first choice.

So, here’s the final question:

As a nonprofit organization, what are we doing to foster relationships among the people we serve (and their families), the community, and even our competitors such that we generate a climate of philanthropic generosity and gain a greater share of the market?

I challenge you, as a nonprofit leader, to delve into these three areas as I’ve outlined them above. Pull together your team and have the hard conversation—not about what you’re currently doing, but what you could be doing to take your organization to the next level.

Your work is simply too important to settle for what used to be good enough. For many of you, people’s lives are at stake. The community wants to take care of its own, but they have to know whom you serve and why it’s important. They have to know that it matters. They have to know what sets you apart from a corporate entity only interested in a bottom-line. They have to know that lives are being changed.

Question:  If you’re a nonprofit leader, what best practices set you apart from other organizations?

You can leave a comment by clicking here.

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.

Moments later, I stumble across Michael’s fifth grade notebook filled with stories we had created together. Another snap, and it’s closed.

I’m just not prepared to look through these now. Today, I’m focused on letting go, cleaning out.

My husband stands and stares, trash bag in hand. “These are Mike’s,” I say. “What should we do with them?”

“Well, you can’t throw them out. Let’s put them in the box of things to be stored,” he responds without hesitation.

It occurs to me in this moment that we are, all at once, at different and yet similar places within this process of healing. And, without even being fully aware of it, we still cling to certain rituals that keep us grounded in who Michael was, and who he still is in our lives.

Rituals of Acceptance

We’re all familiar with the obvious rituals of loss. In those first moments and days after someone passes, we engage in rituals that help us get one step closer to acceptance.

These rituals are often linked to our family history, religious beliefs, and societal norms. It’s the planning of the memorial service, the flowers, the gathering of family and friends. Whatever the tradition, these rituals help bring us collectively together to begin the healing process and to remember.

After this initial phase, however, there is a second wave of rituals which are unique to the individual.

In the early days after Michael’s passing, for example, I rose early each morning, gathered up my Bible and morning cup of tea, and settled into a big leather chair in my office to pray and reflect. Often I spent time with Michael via journaling. A simple letter to my son somehow made me feel connected.

Most often, these early rituals evaporate over time, and I find that those of us left behind move on to new ones or we come to avoid them altogether.

Grief counselor Kala Helbert speaks to rituals as purposeful actions that symbolize something more than the acts themselves. Our rituals represents our beliefs about death. She further reminds us that “rituals provide structure, meaning, and connectedness. . . they allow us to move through grief in a safe way.”

My husband, for example, still lives out his role as a very hands-on-dad by meticulously caring for Michael’s gravesite. His love, respect, and loyalty for Michael is now expressed via weekly trips to the cemetery to make certain that our son’s “sacred space” is brushed clean and free of encroaching weeds.

Rituals, it seems, are different for each of us. I’ve come to the conclusion that we learn to live with loss by embracing two very important rituals of the life/death experience: Story and Stuff.

Rituals of Story

Whereas my husband has rituals associated with his role as caregiver, I have a need for story. I was, after all, not only Michael’s mom, but his advocate.

Since I’ve spent most of my life advocating for people with disabilities, Michael’s story is one I’ve often shared. To end the story now would be unnatural for me. Michael may have left the building, but his story helps me keep the joy of him alive.

Here’s what I find interesting. Whenever I move into a funny anecdote about Michael, people often don’t know how to respond. They stop and stare. There’s usually an awkward silence. If they knew Michael, they might offer a comment or so, but then, they quickly move on.

One of the things I think people fear after losing a loved one is that the person will be forgotten. Story helps bridge that gap between what was, what is, and what will forever be.

For some of us, however, story may not be a ritual. It may bring up too many painful memories. I know, for instance, that I never have a desire to speak much about Michael’s last days of suffering. As for the rest of our joyous life together, I fully appreciate recounting those memories. More importantly, I am grateful to those who listen.

If you know someone who seems to enjoy taking about their loved one, let me suggest that this doesn’t necessary mean that they’re in denial or unable to cope. They just may need someone to listen and to help them remember. Story is part of the process of life. Why should we deny that it’s part of the process of healing?

Rituals of Stuff

This ritual is a bit more complicated than the ritual of story. In the early days of grief, I went about the business of clearing through Michael’s things.

I repainted and organized his room so as to remove any signs of “hospitalization” or illness. I sorted through clothes and gave away the good stuff to our friend Jonathan. I know now that I was trying to create some new-found order in my otherwise chaotic life, but it felt right and good to do so.

So, why then, am I clinging to every last piece of paper that hosts Michael’s name?

Insurance claims, educational plans, hospital records, letters from countless doctors, blood workups, neuromuscular biopsy reports, and on the list goes. Why is it easier to cleanse the house of personal effects and yet so hard to relinquish these now useless pieces of paper?

This is what I’ve discovered. These mounds of paperwork represent all our years of hard work, all our effort in getting Michael the best possible care, the best education, the best wheelchair, nutrition, you name it.

If I throw away these most intimate details of our life together, it’s as though he never existed, and I’m not ready to let go of even one bit of evidence that he was here and that his life mattered.

The rituals associated with stuff, then, are perhaps the most challenging. They’re challenging because they surprise us. One moment you’re cleaning out a closet, and the next minute you’re hit with the reality that someone you love is gone, and he’s never coming back.

My thoughts sting. I don’t need to save these papers, because I will never, ever again stand before a doctor or some other professional fighting for my son to have what he needs. I will never need this supporting documentation again. The fight is over.

Even as I embrace this reality, I’m still not ready to let these documents go, and I’ve decided, it’s okay. I don’t have to make this decision now. I can hang on to these remnants of Michael until I decide to do otherwise.

Someday, I’ll be cleaning out the garage, and I’ll come across a sealed plastic box. Maybe on that day I will have the strength and energy to read through that mountain of documents. And, on that day, maybe I’ll be able to toss them out.

But, not today. Not yet. Today, Michael’s stuff remains packed away, a reminder that he fought the hard battle and finished the race as a warrior against all fear.

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.

Here’s a few things to consider:

1. Respect the Process: Loss comes in many forms, and each person handles it differently. It’s important to do that which brings you comfort.

In the case of a sudden, tragic loss, it can be difficult to move to a place of celebration. For many of us, however, loss is a dance of letting go. I learned a great deal through our son’s transition.

When we accept death as a sacred process, we have the ability to handle the transition with the grace and dignity that our loved one deserves. By sacred I mean, God is in the house. He’s got this thing called death. May sound cliche, but He’s got your loved one in the palm of His hands. You don’t have the power to reverse the process; the game is afoot. You’re out of the picture; you have no control. Embrace the privilege of being there as your loved one transitions.

2. Be Prepared to Be Unprepared: It’s important to note that such transitions also take many forms. The slower process of transition might begin with the onset of Alzheimer’s or a stroke. Any significant change in health and behavior might signal the beginning of the end. However, a slow transition can escalate to crisis in a matter of seconds.

No matter how prepared we think we are, no one is ever equipped for those final moments. Death shocks our system, knocks us stupid. Be prepared to handle situations as they arise. It’s not your job to fix the person. It’s your job to balance their care with the inevitability of what lies ahead.

3. Gather the Information: You need to know the facts of what you are dealing with, and it’s not always easy to get them straight when someone you love is critically ill. Meet with other family members or people who can apprise you of the reality of the situation.

When my son Michael was dying, we obviously fought hard to get him the best possible medical care. There came a point in time, however, when we realized that we were prolonging the inevitable by forcing nutrition and hydration.

I prayed for wisdom and discernment during this time. I sought counsel from a close friend and advocate for the disabled. Dr. Tom Buckley helped me understand the reality of what we were facing. We were not living some miracle in a Jimmy Stewart movie; Michael would not regain consciousness. When I stopped focusing on the fear of losing him and started focusing on what was best for Michael, it was easier to make those hard decisions.

 4. Honor the Sacred:In these moments of transition, I’ve noted something interesting: The family often tries to conduct business as usual. For example, if the person is still at home, the television might be blaring. Relatives may be coming and going. The house abounds with the noise of life almost as if we’re trying to slam the door in death’s face. I’ve often wondered what the person-in-transition experiences in the midst of all this chatter.

I found it helpful to honor these sacred moments by trying to maintain some level of tranquility. Your loved one is half way between this life and whatever is next. In my case, I believe in an infinite God; it’s the good news. Just imagine the majesty of being in that place between the alpha and the omega, free of all pain, sorrow, and heartache. I didn’t want my son transitioning amongst chaos, noise, confusion, or even my own hysteria.

This moment where life ends and begins anew is a sacred time. Honor and respect that sacredness. Consider the power of silence, prayer, candles, soft music, whispers of love and affection. Think of the last words you want your loved one to hear. Love them enough to let go and prepare to celebrate a life well-lived.

Life is rarely easy; death even harder. However, death is a part of life that we can learn to embrace. When we do so, we are better equipped to experience joy. We can begin again.

This post was originally published on October 11, 2013 and has been slightly revised.

Question: If you’ve lived through this type of loss, what have you done to prepare? How has it given you comfort? 

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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?

The Rules Are: There Are No Rules!

A friend mockingly tells me that her uncle still goes to the cemetery every day to visit his wife of fifty years. “He should be over this by now,” she tells me. “After all, she’s been gone almost six years.”

My brain gets stuck on the numbers as I respectfully listen. Can six years really erase a lifetime of loving?

Death makes you stupid. You do crazy things when you don’t know what else to do. Nothing is intended to be morbid. No one wants to get stuck in grief. You just do whatever you can to love, remember, and get through. There really are no rules. There simply can’t be.

To those who would mock or judge, I would say, either you have never significantly loved such that you understand the suffering of loss. Or, perhaps, worse still, you have denied yourself the experience of grief.

Remembering Michael.

I decided years ago to give grief it’s time, but I refused to let it claim victory over me. I would learn to remember the joy of Michael, the life over the loss.

On this April 3rd, I sat in the patio basking in the warmth of spring. Only days before, I had stumbled upon a book, Lament for a Son (1987). Somehow it had mysteriously appeared among hundreds of books on my overcrowded shelves. I don’t know where it came from or how it got there.

My mind plays a silly trick: A gift from Michael perhaps? I leap to a memory of his childlike voice. “When I grow up, Mommy, I’m going to buy you a Lamborghini.”

Grief is stupid, too. One object of insignificance suddenly takes on new meaning; the heart leaps to a now cherished memory. I savor it like a rich piece of chocolate. Please, God, don’t let the memory melt away.

Suddenly, this dusty book becomes a must read, as in right now, today. It is, after all, a gift from Heaven, miraculously calling my attention on this most important day.

I move from the patio to the couch to curl up with my new found book. Reality strikes. There are no more gifts from Michael. Truth is, I was probably drawn to this book sometime after his passing, and don’t remember the purchase. Maybe a gift from a friend? Who knows. Does it really matter?

I commit to the read. It is glorious.

I am lost in the beauty of the words as they float across the page. And, I remember what it was like to love… and to lose… all that mattered.

In some strange, crazy way, there is comfort in remembering. Perhaps it’s the love that carries us.

In writing of the loss of his own son, Mr. Wolterstorff addresses the importance of giving voice to the pain of loss when something is over.

In Lament, he eloquently writes:

“The wound is no longer raw. But it has not disappeared. That is as it should be. If he was worth loving, he is worth grieving over. Grief is existential testimony to the worthy of the one loved. That worth abides.”

I couldn’t agree more.

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