Quests and Motherhood

June 30, 2009 by Rieshy
Frodo Baggins; Difficult, dangerous, and physically exhausting task set in front of him. No free time. Scary bad guys after him. Nothing but Lembas bread meal after meal. Failure = the end of the world. So why do I often envy him?

Difficult, dangerous, and physically exhausting task yes, but no multi-tasking. No wondering if he has his priorities straight, no quality versus quantity time issues. In fact very little thought required. Frodo just has to keep putting one foot in front of the other to fulfill his duties. When he does his job right he gets instant feedback. The tower of Sauron falls. The End. He's the hero forever.

Bad guys? They all wear black cloaks, and ooze, easy to spot. Just run away.

Nothing but Lembas bread? It's already paid for, fully cooked, is healthy and doesn't make him fat, enough said.

Failure = the end of the world? That one is a little bit trickier, but for Frodo failure would also equal his demise -so he wouldn't have long to feel guilt.

Lord of the Rings also has excellent healthcare, free of charge.

A Quest would be a breeze compared to Motherhood.

I hope going back in time is not cheating for Steady Mom's 30 minute challenge.  I vividly remember writing this very quickly- almost as a whiny prayer for mercy during a particularly difficult time with my little one's chronic illness.  Thanks to God we got through that time:)

Little Things

June 25, 2009 by Rieshy
Our oldest child was 14 years old when our 6th child was born.  Suddenly having a child with a chronic illness changed a lot of "big" things in our lives but it also changed a lot of the "little" things. For instance; the size of my purse.

I had always carried tiny clutches.  I mentally scoffed at women who had to take suitcase sized diaper bags to the grocery store.  Obviously, they or their children were wimps.  Who could need more than a disposable diaper, a wallet and the one true necessity- a tube of lipstick?

After each of the first few runs to the hospital, experience slowly filled my purse:
  • The first time we rushed Jack to the E.R. I was wearing sandals.  Brrr, cold feet, so I added non-slip socks. I also added our own glucometer because I learned that blood sugar checks were faster and less painful for Jack if I did them.  
  • Second trip: pull-ups and medicine droppers.  Jack is potty trained, but after a few days of D-10 it's hard for a little guy to make it to the potty, especially with tubes sticking out everywhere.  Medicine droppers, because the hospital gives oral medications in oral syringes that are identical to I.V. syringes.  Jack's not about to let one of those things near his mouth.  Picture a two year old levitating out of a hospital crib!  
  • Third trip: empty sippy cups and my Bible.  Generally our hospital stays are over once Jack can eat and drink normally, having his own sippy cups seems to facilitate this.  The Bible for obvious reasons.  

After the third trip I ditched the clutch and just added items willy-nilly.  Started brainstorming up all the things I'd always like to have on hand.  Now see my "purse", a little thing grown big indeed.

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Wilting in the Heat

June 24, 2009 by Rieshy

It's Summer and very hot and humid here.  Jack's geneticist and pediatrician both want Jack to get as much exercise and outdoor play as any other 3 year old.  I have other children who want to be out, even in the heat, and I love being outside too, so- great.

The problem is that Jack just doesn't handle the heat like everyone else.  My other kids will play, with just a bit of water every now and then, till the sun goes down.  Jack just wilts.  Picture a limp head of lettuce, only this lettuce cries and throws tantrums all while being limp.  Not fun.

Before we knew that Jack had a genetic metabolic disorder I had noticed his trouble playing at the park.  I saw it as a discipline issue and tried to work with him to not hang-out on my lap.  Sometimes he did great when the temp. and humidity were low, but I had not figured out the pattern.   Even more confusing were the evenings when he would cry and tell me his legs hurt.

Now we have a pretty good regimen of aggressive hydration and carbohydrate pushing that we call- get ready for a technical name- "Go Go Juice".  In other words if you want to get to "go" you have to drink the juice.  When playing outside  Jack has to drink 8 oz of gatorade with 1 to 2 tablespoons of cornstarch mixed per hour of playing.  I've found it works best if he has his first dose on the way to the park, rather than after he's played for a while.

 Even so he still has problems with excessive sweating, leg cramps, bloated belly, exhaustion, and hypoglycemia after outdoor play.  Any of which usually hit their peak a few hours later or the next day.  I've been experimenting with trying to feed him easy to digest foods after he's had especially tiring days, but that's still a work in progress.  I hope when he sees the G.I. doc about possible gut dysmotility that she will have some answers.

Now to the interesting part…

I'm a member of a tremendous Gmail group that's linked to The Fod Family Support Group. One member recently shared info about Cooling Vests.  It is based on the principles of evaporative cooling.  I can't believe that I've never heard of it before: Heat Intolerance & Mitochondrial Disease | MitoAction   No idea if it will help but I'm extremely excited about trying it.  I'm also perplexed that something so relatively inexpensive and non-invasive wasn't already recommended for Jack.

We'll see.

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Family Stories

June 22, 2009 by Rieshy
The only book I've come across that deals with parenting chronically ill children is Chronic Kids, Constant Hope - Elizabeth M. Hoekstra, Mary Bradford. It was in our hospital's lending library- yeah for great children's hospitals!

A section in the book talks about writing the story of your child's illness. I've been pondering this for a few months now. I've sketched out the details of my 6th child's birth and first metabolic crisis.

I can write the bare bones, but how can I describe the first ambulance ride with my unresponsive son wrapped only in a towel? Or write about the amazing relief of seeing his grey body turn pink after an injection of D-25? How can I adequately chronicle my husband's lonely drive to meet us in the E.R.? Where do I fit in the story that occurred 6 months after that first crisis when my 7 year old son fell apart, his thin body sobbing in my arms as he confessed that he should have done something to keep his little brother from getting sick?

I don't think I'll ever get the story finished. I'll never be able to capture all the emotions, partially because the story is monumentally defining to my family, but is of little importance in the world-wide scheme of things .

I do, however, think that the exercise has been helpful. It's made me look at the experience from multiple points of view. I've talked with my other children about their impressions of that first crisis and life since. My husband and I have taken time to compare our memories, which has given us opportunity answer questions about events that we both had.

I've slowly come to accept that what I am in essence writing is not the story of one child's illness, or even two children (our 7th child is currently scheduled for testing), but the story of my whole family's transition into a life that includes, but need not be defined by, chronic illness. That story is a story that continues to evolve and will hopefully be a story full of laughter.

This was an unpaid review. I always love comments. If you know of any other books on raising chronically ill children please, please, put the info into a comment.

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Surprise Ending

by Rieshy
My husband thought he was about to have a deep conversation with our 3 year old about the nature of life and death, until...

3 yo: "Where is his Dad?"

Dad: "What?"

3 yo: "Where is his Dad?"

Dad: "It was his Uncle and he's dead now."

3 yo: "Well, where's his Uncle?"

Dad: "He's dead."

3 yo: "Where is he?"

Dad: "Ah.  Well, his body is buried in the ground..."

3 yo: (Interrupting Dad with concern) "Well, where is his head?"

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Happy Father's Day & Constant Vigilance

June 21, 2009 by Rieshy
My husband said the best thing about Father's Day this year is that Jack is still alive.  We are feeling blessed.

Feeling blessed led to a conversation about how Jack is doing.  After a stressful run of hospitalizations he has been doing really great.  It's easy to start feeling blasé and even start mentally downplaying the seriousness of his condition.

We came around to the conclusion that Jack is doing so well largely because of our constant vigilance.  Or to say it as Professor Moody from the Harry Potter series would say it, "CONSTANT VIGILANCE."

My husband and I are meticulous about Jack's medications and eating schedule.  We continually evaluate his energy levels and the energy requirements of any activities.  I take notes of everything so we can spot trends and try to head off trouble before it turns into a crisis.

It is all such a mental balancing act.  Constant vigilance could easily morph into morbid paranoia. Monitoring activities and food could morph into an overbearing and fearful existence.  Whereas feeling blasé could lead to taking stupid risks.

Therefor, I propose that I need something akin to the AGPAR scale or the Pain Assessment In Children Chart.  Except this scale needs to be the Constant Vigilance Scale.  When I am unsure of a parenting choice I am about to make, the answers to the questions on the scale will mathematically rank my decision ranging  from: Neglectfully Foolish, Constantly Vigilant, to Fearfully Obsessed.

Unfortunately, I think caring for Jack is more an art form than a science. The whole idea of a mathematical ranking system is probably in the Fearfully Obsessed category anyway.  I guess I'll end where I began-

Happy Father's Day and may the grace of God and constant vigilance give us another wonderful year with all our children.

Chronic Illness=Odd Supplies

June 20, 2009 by Rieshy

For our family of nine a 12-passenger van is a necessity.  Nature abhors a vacuum, thus our extra seats are usually filled with our children's friends.

Recently we had 3 extra teenagers along for dinner out and a band concert.  In the van after dinner one of the passengers croaked that they felt sick.  I whipped a bag from my purse and handed it back.  A few seconds passed and then I heard widespread laughter accompanied by a shout of incredulity; "This puke bag has measurement markings!"

Why yes, doesn't every mom keep calibrated emetic bags in her purse?
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Medical Disclaimer

by Rieshy
I have a B.A. in Art History.  If you are ever tempted to regard any information in my blog as medical advice repeat to yourself, "She's merely an artsy woman with an internet connection and an odd sense of humor."  Then walk away and find someone qualified to give medical advice.
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