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.

1 comment:

  1. My dearest,

    I have had to ask myself those questions many a day. And the days that I don't directly ask, they still loom overhead. Having a child who is medically fragile, one whom you know will close their eyes before you do, is a burden few parent carry. 21 years into a life I didn't believe would make it past 1,3,5,9 and 15 I can take for granted that tomorrow is promised. Until the next cough or sudden illness pops up. It reminds me to let him eat goldfish for dinner some days, make endless toys out of bottles and obsessively put them in my Hope chest lined up neat as a pin and guzzle my glass of wine. Those times are precious and his choices of thrills limited. I share this to let you know I know, I feel you, I see you, I'm sorry and I'm here for you.

    Much love, Djenne

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