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 naïve 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.
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.
My dearest,
ReplyDeleteI 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