July 30, 2017

Love Never Fails

She’s not that sweet baby girl you once knew.  Somehow, when you weren’t looking, she grew up.  And in spite of 18 years of your very best parenting and your most fervent prayers and your consistent love and nurture and training, somewhere along the way she chose a different path.  A dangerous path that has left you frightened and anxious about her future.

When you look at her piercings (27 at last count), black eye make-up, and dyed hair that covers most of her face, you barely recognize her.  Who is this person sitting on your front porch sharing a cigarette with her tattooed boyfriend?  How can this young lady with the slumped shoulders and bony ribs possibly be the same girl you once tenderly rocked to sleep?

This is perhaps the most difficult path that you have ever been asked to take.  It requires more faith than you think you have.  What are you supposed to do now?  Does she need “tough love,” where you lay down the law, keep the standard high, and accept nothing less?  Or does she need grace and acceptance and unconditional love?  Do you let her live with you while she struggles to find her way, or, since she has chosen such an immoral and self-destructive lifestyle, do you make her leave your home and find a new place to live?  There are no easy answers.  Or rather, so many possible answers!  How do you know which one is right?

July 22, 2017

Asking the Hard Questions

What should you make for dinner?  Should you enroll your child in piano classes, swim team, drama camp, or art lessons?  Or all of them?  What should be the theme of his next birthday party?

These are questions that mothers tend to think about.

There are other questions, however, that mothers should never have to ask themselves.  Hard questions.  Questions that quite possibly have no answers.  Questions that are almost too painful to ask.

If you have ever asked yourself these questions, if these thoughts have ever entered your mind, you just might be a mother of a child with a chronic life-threatening condition . . .

When every single day is a struggle to feel well, do you insist that he take care of his chores and responsibilities anyway, or do you give grace and let him sit back and take it easy?

When he feels dizzy and has constant headaches and his mental functioning is impaired – whether from his health condition or from the medications, it’s impossible to tell - or when he's admitted to the hospital for the 3rd time in 3 months, do you make him do his school work anyway?  If he has a shortened life expectancy, does it really matter if he knows his multiplication tables?  On the other hand, are you even allowed to make that decision?  Isn't school required?  Will you get into trouble with the law if he doesn't go?

When the super-nutritious, all-natural, grain-free diet doesn’t seem to be working any more, do you keep researching and trying and restricting every morsel that goes into his mouth, or do you just forget the whole thing and let him eat the darn Big Mac he’s been asking for?

When the tiniest germ will send his health into a tailspin, how much do you protect him?  Do you keep him in a safe bubble at home where he is painfully lonely, or do you let him be a kid for heaven’s sake, playing at the public playground, attending children’s events, participating in Vacation Bible School?   At what point do you just let it go and let him find a few minutes of joy, knowing that doing so will most likely land him in the hospital?  Is it better to live long, or is better to live well?


What about when you see that great sale at the mall?  Do you buy clothes for him to grow into, or do you wait and see if he will need them?  Should you buy them in faith, eternally hopeful?  Or is your optimism really just living in denial?  At what point do you become realistic?

How do you make plans for next month?  Or next year?  Do you go ahead and plan that family vacation, trying to give him a normal childhood with fun experiences while he is still healthy enough to enjoy them?  What about all the other times before when you had to cancel your plans at the last minute because he was too sick to travel?  How do you help your other kids (not to mention all the extended family members) deal with their deep disappointment when this one child’s health has the power to derail every family event?

When you feel like you are drowning in overwhelming fear and frequent medication changes and endless specialist appointments and debilitating insomnia (his, which means yours too!) and endless unanswerable questions, what do you do?  Do you take a break from him and his never-ending needs, or do you spend every precious minute that you can with him, making it all count?

What do you say when people ask, “How is he doing?”  When every day there is this huge question mark hanging over you and your family?  Today, this moment, he might be feeling just fine, but tomorrow he could be back in the hospital.


(These pictures were taken exactly 1 week apart.)

Do you tell him the details of his medical condition, or let him stay na├»ve and innocent as long as possible?   What do you say when he feels miserable 24/7 and he says to you, “I wish I would just die!”  How does a mother possibly respond to that?

What do you do with the sweet picture that he drew for you?  The picture of himself in heaven, with the words To Mom, God is always with you.  Do you hang it on the refrigerator as the precious, priceless artwork that it is?  What if it makes you cry every time you see it?

What do you pray for when healing might not be an option?  How long do you keep believing in miracles?

These are the questions that mothers should never have to ask themselves.  Hard questions, that quite possibly have no answers.  Questions that are almost too painful to ask.

But when you're the mother of a child with a chronic life-threatening condition . . . you find yourself asking the hard questions.

May 27, 2017

How the Impossible . . . Becomes Possible

Somehow, a single day can seem like a lifetime when a child is in the hospital.  When one day of admission turns into several days, and then into several weeks, it’s more like an eternity.  What day is it again?  Time seems to stop and the tears seem to never stop.  It is utterly exhausting, both physically and emotionally. 

After many years of caring for medically-fragile children, children who spend thousands upon thousands of hours in the hospital, you would think I would get used to it.  Nope!  It never gets easier.  There are days – and usually interminable nights – when I cry into the darkness, I can’t do this!  This is impossible! 

Indeed, it is impossible, at least for one person.  There is no way I could continue caring for these precious children with their complicated medical needs if I had to do it alone.  I depend on my community, my “village,” those invaluable friends and neighbors and church family who are ready and willing to step in and offer support when things invariably get overwhelming and difficult.

During these seasons of long hospitalizations, the most common offer I am likely to hear is, If you need anything, please let me know.  I love the openness of that!  The generosity and kind-hearted intent.  The love that those words communicate! 

But honestly, when I am focused on the child in front of me - on the medical complications and the doctor’s prognosis and the long-term implications of this current health concern – and when I am completely drowning trying to balance the time at the hospital with the ongoing responsibilities at home, it becomes almost impossible to articulate what I need.  I search my over-burdened brains for the right words to ask, and come up empty.  All I can think to cry is, Help me!

What I need more than anything, what has encouraged me the most during these stressful days and weeks in the hospital, is a specific offer of help.  When someone is willing to take the initiative, and give or serve or love from the abundance of their heart.

I am so grateful and humbled to be the recipient of so much love!  I can barely begin to count the ways that thoughtfulness has inspired me to not give up on these frail children.  Ways that generosity has encouraged me to press on with this hard calling.  Ways that kindness has made the impossible . . . become possible.

April 29, 2017

The Magic of a Wish

What could possibly be more magical than a Ball?  The sequins on my royal blue gown catch the sparkle from the crystal chandeliers overhead, and it doesn’t seem real.  I feel like a common villager, trying to pass as a princess.  I can hardly believe that I am the same person who, just a few hours ago, was checking our son’s lab results, confirming the next appointment with his specialist, and measuring out his daily medications.  That was real life, messy and routine and sometimes exhausting.  But this opulent ballroom with cocktails and hors d’oeuvres and the small ensemble in the corner playing beautiful classical music?  This is magical!


I can’t help staring at our son all decked out in his black suit and tie – the first one he has ever worn in his life – and admiring how dashing he looks.  The blue sash across his shoulder, the one with the words Wish Kid on it, make him seem almost royal.  He and the other Wish Kids like him, are the reason everyone is here.  We have been invited to this Wish Ball, an annual charity gala to celebrate the wishes that have been granted to children with life-threatening medical conditions.  If the cost of admission is having a child with a life-threatening medical condition, it is a steep one indeed!

March 11, 2017

When You Say Yes


Everyone you know is asleep at 2:00 in the morning, but not you.  In the stillness of the hospital at this hour, the noise of the irregular beeps and sporadic hisses and frequent alarms are jarringly loud, ensuring that sleep is impossible.  But because the annoying sounds are coming from the machines that are keeping your child alive, how can you complain?

As you reposition yourself on the blue plastic chair beside the bed, attempting every contortion possible to make yourself comfortable, you think to yourself, What in the world am I doing here?  How did I become the one who is responsible for the child in this room?  Is this really the life I had envisioned I would be living?

February 22, 2017

Worth It

The foster placement had been a hard one.  Really hard.  He had many complicated medical issues that required surgeries and procedures and appointments and specialists.  His development was significantly delayed, which was frustrating for us and for him, and which required countless therapy sessions.  He had very few social skills and he (literally!) pushed me away when I tried to get close to him or pick him up.  He was aggressive towards the other children in our home. 

And to top it off, his mother disliked me.  Almost daily she would find fault with the care her son was receiving, constantly complaining to the social worker about me.  It was disheartening, to say the least.

It was hard, and I wanted to quit.  In fact, I had asked to quit!  Several times I had requested that his social worker and case manager please, please find another home for him.  Surely there was someone else who could love him.  Someone who had more time, energy, patience, and resources to give that child the care and nurturing and attention that he so desperately needed.

And yet, he was still here.  Apparently there was no one else.  Apparently I needed a lesson in perseverance.  And faith.

January 7, 2017

When You Come


‘Twas a few nights after Christmas, when all through the house . . . the creatures are indeed stirring.  Every bed in the house overflows with relatives – aunts and uncles and cousins and grandparents – who have traveled long distances to celebrate this holiday season.  But none of us can sleep on this not-so-silent night.  The little ones are tossing and turning and squirming fitfully in their beds, refusing to succumb to sleep.  Their wild footsteps echo off the hardwood floors in the hallways.  Their agitated cries ensure that none of us will be settling our brains for a long winter’s nap.  At least not anytime soon.

This is not exactly the image of my home and family I was hoping you would see when you come.  Just a few days earlier, we are all cleaning and sweeping and polishing in anticipation of your arrival.  We look out the window frequently, waiting for you to come.  The hour gets later, the clock ticking well past the usual bedtime.  Finally, you come!  And out in the driveway there arises such a clatter, the littles ones spring from their beds to see what is the matter.

Which is fine, just this once.  I want them to see you.  While you are here, I hope that you will get to know these precious children who are living in my home.  I want you to love them and treasure them as much as I do!  During your visit, I hope that the bonds between you and them will be formed and strengthened.  May they find in you, unconditional love and acceptance.  May they find, in your warmth and tenderness, a sense of belonging and connectedness.
The hallway soon fills with rolling suitcases and zippered jackets, excited laughter and lively conversation.  So wonderful to see you!  I’m glad you made it safely!  How was your trip?  Do you want anything to eat?  Understandably, it takes a while for everyone to settle in.