“The emotional energy created by the critical illness of a child is unlike anything else in a family. The medical situation devours much of the family’s life and leaves its mark on everyone involved: parents and siblings, grandparents and friends. Passions are generated, enormous resources are called upon, any moment can suddenly turn into a life-threatening crisis. Yet the child at the heart of all this, time and time again, is a vitally appealing human being who seems to concentrate and radiate the intensity around him in a powerfully sustaining way, as if it were a form of light.”
– Reeve Lindbergh
Some children face a formidable uphill battle from birth onward, and others are hit with a devastating diagnosis before their teenage years. Lindbergh’s quote, drawn from a book review of one father’s memoir, touches on several aspects of these crises. Her description sounds a bit overwhelming, but if anything, it is an understatement. There is nothing that changes family life more permanently than a child’s chronic serious illness.
Yet, as Lindbergh attests, there is something almost superhuman about the way many such children not only survive, but thrive. Sometimes they seem happier than their peers who have no such burdens. Perhaps the focused effort of so many who care — parents, siblings, therapists, educators, doctors, and friends — instills a deep sense of being loved that enables them to endure the physical and psychological pains that are inseparable from being challenged daily with obstacles most of us cannot imagine. Or perhaps they are blessed in unseen ways we will never see or know about.
Whatever the reasons for their inspiring psychological stamina and endearing smiles, I hope you are lucky enough to have at least one or two such children — or the adults they grew up to become — in your life. Please don’t assume that their stubbornly cheerful demeanor implies that they are free from loneliness or the need for human caring and everyday friendship. Quite the opposite, in fact.
One of the sadder aspects of living with such diagnoses is that, almost inevitably, most of the people in one’s life are paid to be there. While we all are profoundly grateful for those who choose careers in service to others, remember that the doctors, therapists, teachers and families get tired too. More importantly, we all long for connections that exist purely for the sake of relationship, separate and apart from our needs and challenges. Reaching out in friendship to a child or adult with chronic illness and/or disability might feel awkward at first, but you are likely to find them among the most appreciative, understanding and forgiving people you have ever known.
If you are experiencing difficult times and dark days, try going where the light shines. It’s sometimes brightest where you least expect it.
This post was first published seven years ago today. During the years since it first appeared online, Matthew has endured a fifth complex open heart surgery, another valve replacement surgery in May of this year, a broken arm that required weeks of difficult physical therapy last year, a devastating diagnosis of irreversible cardiac cirrhosis, and several cardiac hospitalizations scattered over the past seven years, with the next one already scheduled for this September. As if all this were not enough, during those years he lost his beloved Daddy, who was his best friend and companion, and all three of the loving grandparents he knew. At 37 years old, he has been through more than anyone of any age that I know personally, but he remains cheerful, loving and full of faith, only occasionally giving way very briefly to frustration, sorrow or resentment. Day after day, he and the ever-increasing team of professionals who care for him continue to live out the truth of Reeve Lindbergh’s beautifully articulated quote. I thank God for him and don’t really know how I would have survived thus far without his shining spirit.
The original post, comments and photo are linked, along with two other related posts, below. These links to related posts, and their thumbnail photos, do not appear in the blog feed; they are only visible when viewing the individual posts by clicking on each one. I have no idea why, nor do I know how they choose the related posts. That’s just the way WordPress does things.