“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.
- Posted in: Uncategorized
- Tagged: children, chronic disease, compassion, courage, disability, encouragement, faith, families, friendship, help, hope, illness, love, medical needs, resilience, resources, suffering, support
Good morning, Julia!
Obviously, I have far less experience than you on this subject.
I do remember: when I was sick as a child, my mother would say things suggesting that she’d rather be sick herself, instead of my being sick, like she’d trade places, if she could. At the time of course I thought she was crazy.
But that’s a Mom (or parent) thing, not wanting our children to suffer.
So, I agree, suffering kids get a lot of love and support from their compassionate parents. I think the kids sense and appreciate that.
Hopefully they do. During my surgery (which I was crazy enough to forgo being sedated in favor of local — I’ll never do THAT again– and if the surgeon knew there would be complications, he likely would not have given me the option) I kept thinking of Matt and all he has endured, and at one point it just made me cry. Only through my eyes, of course, since my mouth was full of all sorts of painful stuff and bloody gauze, too.
Sending prayers and blessings for you and Matt.
Thank you, Mary Ellen! We need and appreciate the prayers. Thanks for being here, too.
Wonderful smile. I was not aware of the term cardiac cirrohsis- a term usually applied to the liver i believe.
I think i have mentioned to you my niece Karissa who just turned 36. She was a miracle baby-weighing less than two pounds and spending almost all of her first year in hospital, with bills of one million plus. She was about the size of a Barbie doll. She was and is a F,A.S, kid, fetal alcohol syndrome with a mom who used a lot of different things and did time at Western State women’s prison in Wash. for intent to distribute cocaine- i believe. Karissa was on high O2 as a baby and suffered subsequent eye damage which continues till today. And now she has developed COPD in large part to her early months. She is using Oxygen now most of the day. She is a great kid and has worked for the State- now remotely- for over 20 years. As she has been pretty immobile this past year- she has gained a ton of weight.She was born with more than one strike against her- Never married- some boyfriends over time. I fear her health is on a downward spiral from which she may not recover. It all seems so unfair. Yet she seems to keep a sunny disposition most of the time.
Mike, it’s liver cirrhosis, but it is called cardiac cirrhosis because it is caused by problems in the heart. Cirrhosis of the liver, from whatever cause, is irreversible. We are doing everything we can to keep it functioning, which so far it is– but Matt’s liver is now as worrisome, or more so, than his heart is. We have to see the liver specialist even more frequently than the cardiology team, and many more tests have to be done every 3 months now.
Thank you so much for opening this window into your families world and the attitude you share which is both inspiring and transparent. Truly a faith walk with so many variables. I so appreciate your sharing of these thoughts and events. It has blessed me, greatly!
Thank you, Steve. It’s always a joy to hear from you. How are you? Do you still live in Tennessee? I’m toying with the idea of getting a second home there, to be closer to my sister in north Alabama.
I am doing well, thank you. I have been blessed with two very special daughters, 3 grandchildren and a son in law that is more than I prayed for. My youngest daughter is single but heading towards matrimonial bliss in her timing, ha! She lives with me for the time being and the aforementioned, along with both my parents, are the mainstay’s of my world. That’s the most important aspect…and then there is my hand attached to many hat 🙂
I believe your idea of a 2nd home here, would be a very good decision!
Thank you again for asking and always, your very special thoughts shared with all of us.
Julia, what a remarkable tribute to Matt, by a remarkably resilient woman. Sending loving thoughts and prayers your way.💐
Thank you, Chris. We definitely need those prayers!! And we appreciate your thinking of us. The flowers you and Jeanne sent when I was first injured were some of the prettiest I’ve ever gotten.
It’s been a longtime since I posted but wondered if you and Drew have gotten back in touch?
Aside from one or two brief texts here and there, no. It’s been almost 3 years since Matthew or I have seen Drew or his sons. Nearly 5 since I’ve seen Megan.
Thank you for your lovely post. Matt is indeed a beautiful shining light!
Thank you, Kathy. I know you can understand the turmoil that Reeve described in her quote.