Friday, November 15, 2013

Monday Coffee

I'm pleased to announce that an essay I wrote about John, my son with Down syndrome, is included in a book that was released on Saturday.  Monday Coffee and Other Stories of Mothering Children with Special Needs is available on-line at Barnes & Noble and amazon.

As I was looking at the title this morning, I got to thinking that I feel like a fraud.  I don't think I know much at all about mothering a child with special needs.  John's "special needs" are so minor.  He's delayed, there's no doubt about that, and who knows what the future holds as far as what kind of support he'll need once he leaves the school system, but for now my job is relatively easy.  The most difficult part of mothering John has been dealing with his medical issues. I deserve a medal for working through some of the complex medical stuff we've had to deal with.

If you've ever been intimidated by doctors as I once was, you'll find that having a child with unusual medical issues quickly fixes that.  I've sought second, third and fourth opinions to find the care John needs.  When you've seen more than one doctor for the same issue and no one seems to know what's going on, you educate yourself and end up with just enough knowledge to go back to the medical professionals and demand they take your concerns seriously.  I've gotten good at creatively combining words in a Google search to locate the information I need, and then reading studies in medical journals, stopping every other sentence to define unfamiliar medical terminology.  I can explain the meanings of porcine bronchus, posterior urethral valves, methemoglobinemia, os odontoideum, and bipartite atlas.  When it comes to John's medical care, to keeping him alive, I'm a rock star!  The other stuff, the special needs stuff, is easy.  This is pretty funny considering how I felt when he was first born, how I didn't think I was up to the task of raising a child with special needs.

So, go order the book, but know that at least one essay-writing mother included in the compilation feels a bit like a phony.  (I've also been pretending to be an adult for a few decades, but that's a post for another time!)

Friday, November 1, 2013

You can't sit on an iPad

Isn't technology fascinating?  I'm amazed by all the fun devices out there, by how small they are and what they can do.  Sometimes it feels as though I've stepped into an old episode of Star Trek: "Beam me up, Scotty!"  Every time I use my flash drive, I look over my shoulder for James Bond, certain he'll be there ready to steal the highly classified information contained on that super secret, super small, technologically incredible invention.

What I can't get my mind around is the cost of owning and operating most of the new technology.  I don't have a smart phone because I can't imagine spending money every month for a data plan.  I like having a cell phone--I've gotten spoiled that way.  The money I spend on my basic plan is worth it to me, especially if it means I can be out running errands but the school can still get ahold of me if they need to.  But what would I do with a smart phone?  Do I really need to be connected all the time?  Sure, it would be fun to post pictures on facebook from anywhere at any time.  And it might be convenient to find out how late a store is open or where a particular restaurant is located when I'm not near a wifi connection, but all that still isn't worth the cost to me.  At times, though, I feel a bit panicked, like I'm being left behind technologically.  I watch other people use their smart phones, iPods and iPads--it all looks like so much fun!

I went out with a friend recently.  She had a small Samsung tablet.  She showed me pictures.  She showed me videos.  She showed me how she could connect to the coffee shop's internet.  I wanted one!  I could keep my pictures there.  I could take videos of my kids.  I could buy ebooks and read them on it.  It would slip so nicely into my purse, I could leave my laptop at home.  I could load it with music.  I've never owned an iPod because of the cost, but this would do so much more than an iPod, I reasoned, it would totally be worth the cost.  I went to Best Buy to look at them.  They weren't as expensive as the Apple products.  I went to Best Buy again.  I wanted one, but there wasn't any extra money in the budget.  Until there was.

Years ago while John was still on treatment for leukemia and inpatient at the hospital, I watched an infomercial late one night sitting in his dark hospital room.  Beautiful, thin, fit women demonstrated the use of a piece of exercise equipment.  The exercises seemed easy, like something I could do.  The women had all lost weight.  It was expensive, but I was sure it would change my life.  I ordered it a few days later when we were home again.  When it arrived, I took it out of the box and set it up.  Then I folded it and carried it downstairs, and we tripped over it in our basement office for years.  Years.  I never opened the DVDs that came with it.  I never inflated the little exercise ball that came with it.  "We should sell that thing," Tim said a few weeks ago.  And then when I was out of town, he dragged it upstairs, took pictures of it, and sold it on craigslist!  (Many thanks to the Fluidity company for re-running the same infomercials and re-igniting interest in my long-ignored fitness exercise bar!)

Suddenly I had the money needed to buy myself a Samsung tablet!  On Monday I went to Best Buy and relinquished a handful of cash for the sleek, lightweight electronic device.  I brought it home and turned it on.  The screen lit up with vibrant color and I discovered a whole host of cool apps, many of which were free!  When I asked my daughter about downloading music from her iTunes account, I was disappointed to learn that I needed an Apple device to download music from iTunes.  (Of course, I thought to myself. That little "i" should have clued me in.)  Now what could I do with my new tablet?  I tried surfing the internet, but it was more cumbersome than with my laptop, which was sitting next to me on the coffee table.  I could take pictures with it, but I wasn't very impressed with the quality. I have a digital camera that works just fine.  I could play games on it, and I did.  For four days I played games on it.  Had I really just paid all that money for a handheld gaming device, a toy?  I'm already so good at wasting time I don't have, did I really need another distraction?  A full-on case of buyer's remorse settled in.  It would slip so nicely into my purse, I thought.  So what? I thought.

This morning I returned my Samsung tablet.  As I left Best Buy with my cash tucked safely back in my purse, I decided that I'm still fascinated by technology, but I'm fine with being left behind.  Someday I may yet own a sleek tablet I can slip into my purse.  For now I'll save my money for something more low-tech, like sheetrock for our unfinished basement, or a new living room couch.  After all, when James Bond shows up, he'll need a place to sit.

Monday, October 14, 2013

What a Difference a Year Makes!

One year ago today I completely changed the way I eat.  One year ago today I quit eating bread, pasta, white potatoes and all grains.  I got rid of my vegetable oil.  I quit eating sugar.  And I did it all cold turkey.  I’m not sure how I was able to make such a drastic change in a day.  Maybe it was because I had spent so much time wallowing in what psychologists call the pre-contemplation and contemplation stages of change.  Maybe it was because I was just plain sick and tired of myself.  Maybe it was because I have six little people depending on me and I need to live as long as I can.  One year ago today I made a change, and today there’s 46 pounds less of me because of it.

I credit my success to two things: the book Made to Crave by Lysa TerKeurst, and the blog Mark’s Daily Apple by Mark Sisson.
Made to Crave
Lysa TerKeurst takes a biblical approach to weight loss and her book is full of wonderful nuggets of wisdom.  She doesn’t provide a weight loss plan, but she does promise to help you find your “want to.”  I thought I had my “want to.”  What overweight person doesn’t want to lose weight?  But I was missing the heart of the matter.  What I found in her book were pieces of a puzzle that spoke to my heart and helped keep me on track as I started eating differently.

One of the fruits of the spirit is self-control.  I had read the verses in Galatians 5:22-23 many times before: “But the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness gentleness and self-control.” (NIV)  Whenever I didn’t display these traits, I assumed I wasn’t a good enough Christian.  What I decided is that these fruits are there for me to grab, like actual fruit hanging from a tree!  If I'm living in the spirit, then these are available.  When I don’t feel like I have self-control, I can reach out and grab the self-control of the Holy Spirit.  I grabbed and I grabbed and I grabbed, day after day after day.

You crave what you eat.  Duh!  I craved popcorn because I ate popcorn.  I craved ice cream because I ate ice cream.  If I changed what I ate I would eventually crave different types of food.  When I craved popcorn, part of what I was looking for was crunch.  Now I grab a couple of big orange carrots, peel them and crunch away.  Yes, I actually crave carrots!

I was made for more than this.  I was made for more than to feel defeated by a bowl of popcorn.  I was made for more than to waste a single moment feeling bad about the way I look.  I was made for more than excuses.  I was made to glorify God.  My eating was distracting me.

Mark’s Daily Apple
When I decided I was ready to change the way I was eating, I decided I wanted to try low carb because, well . . . because I had never tried low carb before!  In my on-line search for what low carb meant, I came across Mark’s Daily Apple.

Mark Sisson started his blog in 2006, sharing with the world his views on the standard American diet.  He has a background in biology and he's a former triathlete.  His blog posts are full of links to studies backing the claims he makes about how the food most of us in the US are eating is making us fat and unhealthy.  At the heart of his beliefs is that humankind evolved to eat animals and plants, but not the cultivated kind, like wheat and corn.  He cites evidence that human health (and even our teeth!) was negatively impacted when we ceased to be hunter gatherers and became farmers.  After writing his blog for several years he compiled his beliefs into a book with ten guidelines he calls The Primal Blueprint.  They’re simple guidelines that touch on everything from food to exercise, sun exposure to sleep.  (You can buy the book, but everything you need to know is available for free on his website!)

I read and I read and I read.  I learned about good carbs and bad carbs, good fats and bad fats.  If I had a question, I did a search on the website and read and read and read some more.  If I didn’t agree with something I read, I did my own research.  Most of what he said made sense to me, so I took the plunge.

As I said, I’ve lost 46 pounds.  I can honestly say it was easy!  And it isn’t just the weight loss, it’s how I feel both emotionally and physically.  I feel normal.  I don’t feel defeated or distracted.  I feel strong.  And I’m hopeful that my six little people will have me around for a very long time because I made a change for the better.

Friday, October 11, 2013

Just OK is OK

I used to be really uptight (yes, more uptight than I am now!).  My older kids lived under the tyranny of having to have things "just so."  After a few (or more) babies, and then when John was on chemo for three years, it was impossible to hold onto any kind of standard of cleanliness or neatness.  And then John had liquid diarrhea for months on end.  "There isn't poop on the floor?  Great!"

Today as I stood in the bathroom drying off my hands, I noticed teeth marks on the white faux wood blinds hanging in the window, many well formed, half moon impressions.  In the past I would have taken this as a personal insult.  I would have hunted down the guilty child (and I know exactly who that child is based on the height of the marks) and dragged them into the bathroom for a serious talking to.  But because there's been a considerable whittling down in the area of caring about such things, I just chuckled.

Don't get me wrong: I like my white faux wood blinds.  I still like having nice things.  And I will speak to the guilty child, but I know now that bite marks on my blinds aren't very important.

When my older kids were little, I'd hear other parents talk about the things their kids had done, and I'd marvel at their calm reactions.  How did they know what was important way back then?  Why didn't I figure this out a long time ago?

My house may be a mess, my nice things may not be so nice anymore, and I may have bite marks on the white faux wood blinds in my bathroom, but I'm a calmer, more loving mother who has been far happier with just OK than I ever was with just so.

Monday, September 30, 2013

Why I Cried in Church Yesterday

I cried in church yesterday.  I cried hard in church yesterday.  My 10 year old son, John, stood next to me during worship time.  He loves music.  He loves the drums.  And we have a great worship team.  The music is rich and it always reaches right into my soul.  For years while John was on chemo, I cried every Sunday during worship time because it was such a release, a re-set so to speak.  Here I am, God.  I’m broken and I hate what we’re going through, but it’s in your hands.  You give and take away.  Please let me keep my Johnny Bubs. 

I haven’t cried in church for a long time.  Yesterday, however, the floodgates opened, and here’s why.  Yesterday it was all suddenly clear.  What once felt like the rug being yanked out from under me was all blessing, only blessing.  What was promised came to pass.  Yesterday it all came full circle, but to understand what happened yesterday you have to understand where the circle began. 

My son John has Down syndrome.  I’m not proud to say that the day of his birth was the most difficult day of my life.  A day that should have been one of celebration turned to one of deep sorrow when I heard the news of his diagnosis.  Fifty percent of babies with Down syndrome have heart defects.  Maybe he’d have a serious heart defect and die quietly before we ever brought him home from the hospital.  What mother thinks these things?  Down syndrome wasn’t a problem I wanted to deal with.  His heart was fine and we took him home when he was four days old. 

I cried often in the beginning.  I cried for John.  I cried for my other kids thinking I had ruined their lives.  I cried for myself thinking I had ruined my own.  I felt inadequate to be the kind of parent a child like John would need.  What would be expected of me?  Would I be required to fight for his rights? 

And I prayed.  I remember sitting in my living room with the morning sun shining through the front window holding little baby John tight and praying, God, you made John.  You put that extra 21st chromosome into each of his cells, cell by cell.  I know you can take it out cell by cell.  Please take it out. 

God didn’t take it out.  He didn’t change anything about John and his diagnosis.  It became apparent that the only thing that needed to change was my heart.  On another morning several weeks later I was again holding John tight, sitting on the edge of my bed, praying to God to help me accept everything about John.  I don’t know if I actually heard God’s voice or if these words just popped into my head: “He will bring you great joy.”  Really?  OK, God, I’ll hold onto that. 

When John was diagnosed with leukemia at 2 ½ years old, Down syndrome ceased to matter to me.  Watching your child suffer and having to make peace with death render little things like extra chromosomes meaningless.  And now, 10 years later, Down syndrome is merely a nuisance.  Down syndrome affects everything about John’s life, but he isn’t Down syndrome.  He’s a little kid trying to make his way in the world like every other kid.  My job is to help him in any way I can so that when I’m gone he can operate without me.  My job description isn’t any different for John than for any of my other kids. 

Which brings me back to yesterday.  John reads well and likes to sing along with the music, but yesterday during one song the projected words were in cursive.  John’s still learning to write in block letters.  Cursive isn’t even on our radar, but I knew yesterday that it should be.  John needs to learn to read cursive even if he never writes it, I thought to myself as I sang the words and John sang to that song by repeating what I was singing. 

Then he threw his hands into the air.  He does this every week observing the members of our congregation who raise their hands in worship.  John takes it to a whole new level, though!  Sometimes he looks like he’s directing air traffic.  Sometimes he mimics the movements of the drummer.  Yesterday he was completely absorbed singing, waving his hands, worshiping God in his own way.  And I started to cry.  John’s love of music, his love of life, my love for him and my desire to make his life better by helping him learn to read cursive all brought me someplace I had never been before in all my years of going to church.  What I felt in that moment was complete, soul filling JOY! 

“He will bring you great joy.”  And in that joy you’ll know that you are dearly loved by your creator, and you’ll know that what you once saw as a burden was only ever meant for good. 

That’s why I cried in church yesterday.

Sunday, September 29, 2013

I'm Starting a Blog!

The house is a mess.  The dog is barking.  But I'm starting a blog!