Tuesday, August 27, 2013


The internet is full of experts. Real experts with credentials and half the alphabet in their titles. Self-proclaimed experts with more confidence and bluster than knowledge. Wily capitalists posing as experts to cash in on our every fear and imagined flaw.

I am none of these things. In fact, some days I’m the farthest thing from an expert a human being can be, and still walk upright. Sadly, the older the I get, the more apparent this becomes to me. I’m doing my best. Usually, that’s good enough, thank God (literally… insert comment about grace and prayer and all the people who pitch in along the way).

When the Daily Press Writing Challenge came out this week I immediately deleted the link. Write a blog post on “Health and Wellness.” Ya, right.

Don’t get me wrong, I’ve got some things figured out. My house is pseudo-tidy, which is impressive to anyone who’s spent more than 20 minutes with our clan. My family’s routine is the right balance between flexible and predictable. My spiritual life is meaningful. My marriage is strong. My children are wonderful.

But I wouldn’t consider myself especially healthy in a physical sense.

I am overweight, overtired and overwhelmed.

I don’t think I’m unusual in this, although I do have a special mix of kidney problems, weak immune system and chronically injured/swollen/makes-creepy-noises-when-I-move joints. I may be developing arthritis. I’ve been tested for Lupus 3 times and they won’t rule it out entirely. Two of my four children have special needs and are A LOT of work. I have very little time to myself. Or money. Also, I love food. It is my drug of choice. Also, I’m not wild about exercise, never have been, probably never will be. I can rail about how unfair this all is and make excuses ’til the cows come home, but this is the way it is. This is the body I’ve been given and I need to take care of it. Probably more than most people.

I try. I really do. I’ve always tried. And I’ve often failed. Which brings me to this expert post. You see, I do have some degree of expertise in this area after all.

I’m the What NOT To Do Expert on Health and Wellness.


I have thoroughly and exhaustively explored these habits in my own life. I can say with expert certainty, they only ever make things worse.
  • Over-schedule yourself – you SHOULD be able to do it all. Anything less is weakness.
  • Stay up as late as possible. Then stay up even later. Sleep is for the weakness.
  • Compare yourself to others – if someone else can do it, you SHOULD be able to too.
  • Don’t cater to introverted needs, that’s just selfish.
  • Obsess endlessly about your weight and appearance.
  • Diet.
  • Measure your worth on the bathroom scale each morning and evening. Naked. With all but one toe hovering in the air.
  • React accordingly. If you’ve lost weight – time to relax; you’re clearly a rock star and might as well celebrate (by eating and being lazy). If you’ve gained – time to give up; you’re destined to fail and might as well binge out on an entire box of Oreos.
  • New Diet
  • Realize that the latest health food craze or exercise routine or New Diet is your true Savior. Sorry, Jesus. You just don’t burn that many carbs praying.
  • Put life on hold until you feel comfortable in a swimsuit/little-black-dress/jeans-that-fit-in-high-school. It’s not like your kids are growing up and you’re missing out on it all.
  • Immediately assess how many people are skinnier/better dressed/prettier than you when you walk in a room (hint – EVERYONE).
  • Make careful lists of all the ways you need to improve. Don’t bother with all that gratitude crap, you’re not Oprah. Guilt and self-loathing is the key.
  • Take drastic steps to overhaul your life. Slow and steady is for losers and YOU DON’T HAVE ANY TIME TO WASTE!!!! Panic!!!!
  • Fad Diet.
  • Avoid being in pictures at all costs. Someday when you look perfect and act perfect and all the stars align… on that day you can show up in your own life.
  • Everything you do is a test of personal worth. Every mistake is a failure. Every failure is absolute. It’s all or nothing, all the time. (For a really good time, apply this standard to everyone you meet. Make sure you point their failings out. People will really appreciate that.)
So here’s me, I wish I could say all these habits are behind me. They’re not. There’s a few I still fall back into from time to time. But I know them for what they are. And according to G.I. Joe, “knowing is half the battle.” I never argue with plastic soldier toys.


Wednesday, August 21, 2013


Once upon a time 
I reached for the steaming hot ducky felt rice bag for the umpteenth time.  “Thank you, son” I weakly whimper to my fourteen year old.
Lying helpless in bed is not the Mom-image I dream of being for my boys. In spite of the storybook family image I try to write for them over the years, I finally resolve, “I can’t write their story.”
While my youngest boy perfected the ability to stitch straight seams in his 8th grade class, I am certain he never imagined his Mom would be getting so much use from the ducky bag he made.
Up and down the stairs he runs as he takes care of me, commenting how the bag stinks now. Zapped so many times,the rice burns beneath the soft flannel duckies. I place the bag on my gut where bright red burns have created a design the doctor thinks may never go away.
It’s the middle of summer and I have spent weeks in painful misery and long hours in the E.R. I’ve experienced too many blood tests, cat scans and increased doses of ox-codeine than I care to count.
This is not the plan I envisioned for myself or family this summer. The boys and I were going to cook from Alton Brown’s cookbook together. I hoped they would teach me how to lift weights in the garage. I took for granted sitting in my lawn chair cheering on the soccer team, taking videos of their swim meets and watching them improve their stroke.
Instead, I am an absent mom and my husband has taken on the role of Mr. Mom in their summer frolics.
I certainly never planned to listen to the family laughing and splashing in the backyard or conversing around the kitchen table from the misery of my darkened bedroom. I roll over saddened, maybe even ashamed, as I watch my boys walk quietly past my door.
“Please take him out of the room” I whisper to my husband as he shuffles our boy with special needs away from his mom. I can’t bear the thought of him being confused or anxious as I groan and weep in pain.
“Feel… better…. Mommy” he carefully tells me.
This is not the perfect family story I wrote for my children. I don’t want them to have a helpless mom. They shouldn’t have to take care of me at their age. They shouldn’t have to completely care for themselves throughout the day.
I should be vibrant, energetic, interacting with them. I should.
I should be cooking for them and driving them for milkshakes.
I should.
I should.
Wrestling with pain…Wrestling with “should’s”… Wrestling with God…
He stills my heart.
He reminds me this is what I prayed for over the years. I ask the Lord to grow character in my boys, to make of them godly men. I ask Him to orchestrate opportunities for them to rely on Him in a deep and personal way.
This is their opportunity to experience disappointment, even fear and worry — then learn to lean on and listen to their Heavenly Father.  They need to witness the hand of God, to experience their own answers to prayer.
It’s what makes faith real.
On my sick-bed I relinquish to God my rights as Mom. I confess my delusions to control the fine details of my children’s lives. 
Jesus, You be their Master Teacher.
Step into my children’s lives when I cannot and should not.
A sickly Momma is not the image I create in their story. But, God is working with them to create His own story in their lives.
He weaves their joys, disappointments and life experiences for His own good pleasure.
I don’t want to get in Your way, so Lord I am letting go–again–today.
“Be assured, if you walk with Him and look to Him and expect help from Him,  He will never fail you”-George Mueller

Friends, it is almost a year since my surgery and diagnosis of Crohn’s Disease. I have taken time to get my life back in order and enjoy a pain-free summer with the family. Now it’s time to share with you what God keeps trying to teach me at my bedside.


Monday, August 12, 2013


My friend Krissy of Venspired had the perfect image to describe how and why I stepped so far out of my box this year. I was tired of being comfortable.  Sure, I loved what I was doing, and I was very successful at it, but at some point I lost track of the days and my purpose.  I was too comfortable.

I wonder how many times my students became comfortable about what we were doing in class?  Did I challenge them enough, make them squirm a little because it was hard?  Did I push my kids to never settle for the same old, same old?

I hope that I did.  I hope that I showed them that always challenging yourself and pushing beyond your limits was a learning exercise in and of itself.  I hope I showed them that if you make a mistake, you learned in that moment instead of considering it a failure.  I hope that when students received their first "B" they understood that they fought tooth and nail for it and need to feel proud.

I hope that my parents received those same messages about their students.  The message that a B is sometimes hard earned.  That if students are consistently getting straight As that maybe it's too easy.

I pray that I taught my students how to work through a struggle and find a solution - maybe not the first time, but maybe the 2nd or the 3rd.  That it doesn't always come easy - that real life thing is really messy and knowing how to power through the struggle is the real skill Mrs. Looper was trying to teach.

I hope that I taught my students that sometimes you have to take a leap because while it's nice and warm and cozy, it's just too comfortable.

Friday, August 9, 2013


I could feel the grit of sand beneath my toes, the heat pushing down on my head and the icy tickle of the incoming tide.

I could hear the roar of the surf and the gentle buzz of adult conversation.

I could smell the salt and tang of ocean.


Perhaps my mind has simply filled in those details, like an artist shading and highlighting to give the picture more depth. What I DO know is that as I stood at the edge of the ocean, an enormous wave knocked me down and dragged me under the water.





Until my Dad reached down, pulled me out of the water and held me tight in his arms.


It was a split second in time, so heavy with sensation and emotion that it imprinted permanently on my young mind.

It’s easy to overlook children’s earliest experiences, especially when they are too young to form lasting memories. But those first three years shape our understanding of ourselves and the entire world. In a way, those traumas and triumphs, however small, are the most important memories of all. Even if we can’t quite recall them. Even if they are hazy or incomplete. Even if they are only a feeling. They become the scripts in our psyche – how we interpret events, what we expect from life and, ultimately, who we are.

At a very young age I learned that the world can be a scary place.

That waves are stronger than me.

And my Dad is stronger than the waves.


So here’s me, at age 2. I am convinced that this memory, and countless others like it, are the foundation if my confidence, resiliency, intimacy, trust… and faith. A good reminder that the endless menial tasks of parenthood – keeping babies safe, fed, warm and comforted – have lifelong effects.


Tuesday, August 6, 2013


You greeted me this morning with “By the way…” then gave me a passionate kiss.

My hands were full of dirty laundry. My heart was pounding frantically as I rushed to get us all out the door for an early morning dr’s appointment. My mind was overflowing with forms to finish and children to dress and snacks to pack. My hair was a frizzy mess. My glasses askew. My eyes still gritty with sleep.

I wasn’t my best me.

I’ll admit, my first reaction wasn’t entirely positive. I’m not a morning person. I have tunnel vision when I’m in a hurry. And I don’t like to be interrupted at the best of times. Which is why we don’t usually make out in the hallway in the middle of the morning rush.

As you grabbed me, I thought “What the…” As you leaned in, I thought “Really?!” I may have even growled under my breath.

I have so much to do. All the time. Most of it is important, or at least seems important at the time. And it never stops. Not when you get home from work. Not after “bedtime.” Not on summer holidays. I don’t get it all done. I don’t even try most days. But it’s always there, hanging over my head.

This is a particularly busy season of life. For people who once enjoyed sleeping in, lazy days and reading for hours, the past decade has been an adjustment. We’re often snappy and overwhelmed. We’re usually sticky and smelly. And we’re almost always exhausted.

We’re not our best us.

We’re parents. Parents of young children, at that. This isn’t a crisis or a problem, or even a surprise. This is just the way life goes. It’s easy to get stuck in survival mode.

But I kissed you back, in the middle of the chaos, and by the end I was smiling.

Because you are still so good at that! It wasn’t something I thought I needed or wanted right then, but, boy, was I wrong. It’s one of those important things, that doesn’t seem urgent, but probably is.
Sometimes I forget to kiss you. Or hold your hand. Or tell you the ways you are wonderful.

That just won’t do. This year, I promise to kiss you every time you leave me and every time you return. Because “being us,” even in the middle of chaos, is a habit worth pursuing. We need it more than ever these days.

18 years ago today we promised to love each other, at our best AND at our worst.

Not just when it’s expected. Or easy. Or convenient.

We have some pretty great moments – romantic moments, life-affirming-can-you-believe-how-awesome-our-family-is moments, inside joke/kindred spirit moments, laugh-until-we-cry moments… but I think it’s the not-so-easy ones that matter the most.

This is when I know you love all of me, the parts that aren’t so pretty or so fun (or so rational if I’m honest). Not in the gushy, I just-FEEL-so-loving-towards-you way… but in the I’ll-stick-around-and-won’t-just-take-your-crap-and-will-hash-it-out-and-forgive-and-apologize-and-hug-you-anyway.
And I love you that way too!

For Better or For Worse.
Happy Anniversary to the best man I know!



Friday, August 2, 2013


You are not broken, sweetheart.

At least, not in any way that really matters. Not like people who are spiteful or small-minded or utterly self-absorbed. I hope the day never comes that you suspect “special” is a code word for defective. Or that having “needs” is a shameful weakness.

There are people that think this way. Ignorant people who simply don’t understand. Cruel, stupid people who simply don’t care. Less than there once was, but still… too many people.

Part of me wants to take a swipe at anyone who suggests you need fixing. To crouch in front of you and bare my teeth and unleash my primal maternal instinct on them all. Because the possibility, the mere hint of the idea that you are less than anyone else is repugnant.

Hoos ll Family Portraits-21

You are different, sweetheart.

This is the truth. You work harder than anyone else around you. So many skills and activities which other people take for granted are a real struggle. Your health has to be monitored closely as you contend with a number of medical problems and risk factors. It takes longer for your brain to process the words you hear and the memories you are trying to recall. Your best efforts don’t always make the words clear enough for us to understand. You are often frustrated and overwhelmed.

I want to fix that for you. Not because you are less; because you deserve more.

You are so precious, sweetheart.

Your sense of humor and your kindness and your stubborn will come to mind. And so many other wonderful qualities too numerous to describe here. There is no one in all the world like you. The world may look at you and see Down syndrome. I look at you and see… you.

Down syndrome is part of your story. Maybe you wouldn’t be quite so exceptional if you didn’t have all these struggles. This reality has significant challenges, but there are gifts also. One extra chromosome has not been a tragedy for you.

You are so precious, exactly the way you are, sweetheart.

So when I was asked to speak on a radio talk show this week (CBC Radio – The Current) about breakthroughs in genetic research (Researchers turn off Down syndrome genes), it was harder than I expected.

Of course when the news agencies use provocative words like “eradicate Down Syndrome” it conjures up thoughts of Nazis and final solutions, not dedicated scientists striving to make the world better for you. Of course I have reservations about safety and risk factors. Of course I hope that the professionals involved will continue to be respectful of our children’s needs, and strengths. Of course I wonder if this is yet another false hope alongside the dubious therapies and vitamin regimes often peddled to desperate families.

But after a deep breath and a closer look I realize that it is incredibly good news.

I’m thrilled about the possibilities the future might hold. Targeted therapies which ameliorate the harmful, even life-threatening effects of Trisomy 21 are more possible than ever. Research may not translate into reality for many, many years, but it isn’t overly idealistic for me to hope that early onset dementia (which affects 60% of adults with Down syndrome by age 60) will not be a problem for you. After all, they still have 52 years to figure it out.

So why the difficulty? Why a panel to express a range of opinions? What could possibly be controversial about this?

We all agreed, from Dr. Jeanne Lawrence (the head researcher who now has a HUGE fan in me), to the show’s host, to the rest of the panel, that anything which leads to longer, healthier lives for people with Down syndrome is a wonderful thing.

But it always comes back to the question:
what if we could “fix” Down Syndrome entirely?

(We can’t, by the way; the geneticist made it very clear that while the research makes the treatment of symptoms of Down syndrome a possibility EVENTUALLY, eliminating it entirely via gene therapy is extremely implausible.)

Nevertheless, this is where controversy finds the most traction. Is Down syndrome a problem to be fixed? Or is it a part of our genetic diversity to be embraced?

There was a mother on the other side of the country, and the other side of the argument presumably, who was on the air with me. We don’t disagree about much. I appreciate her viewpoint and share her enthusiasm for the unique Down syndrome culture that has emerged in recent years. It makes me happy to know that you’re a part of it.

People with Down syndrome are worth celebrating. They are a remarkable group of unique people who share a common struggle. Some lead meaningful, rewarding lives. Some don’t. Some are kind, affectionate and openhearted. Some aren’t. Some are funny. Some are serious. Some are sociable. Some are shy.

None are pitiable creatures to be patronized, nor angels to be revered. First and foremost, they are individuals who each have their own story. They are not extraordinary because they have Down syndrome, but because they overcome and thrive and contribute so much to the world. The Down syndrome community is inspiring.

But Down syndrome itself is not something I celebrate. As grateful as I am for the many positive aspects of our experience, it is a medical condition that needs treatment, just like diabetes or asthma. So when asked if I would eliminate Down syndrome if I could, my answer is yes.

I would choose this for you, sweetheart.

I am so proud of all the challenges you overcome almost daily, and of the person you’re becoming because of it. But I would bulldoze every one of those obstacles if it were in my power. Life is hard enough.

There was a time when a child with Down syndrome was considered a hopeless case, when parents were encouraged to stash them away in an institution and try again. There was a time when children with Down syndrome wasted away and died due to a number of undiagnosed medical conditions. There was a time when children with Down syndrome were not expected to learn or participate or reach any level of independence.

We’ve come a long way since then. I can only be grateful for the research that has brought us this far; not just the education and social support, but medical science also. Now minor heart defects and thyroid deficiencies and a host of other problems are detected and treated as a matter of course. Maybe someday, speech delays and low muscle tone and leukemia will be dealt with as efficiently. And maybe someday, Down syndrome itself will be little more than a passing mention in a medical history.

I want that. For you and for the children with Down syndrome who haven’t yet been born. But it was hard for me to express that, both on the radio and here in the blog. Because I don’t want you to hear me wrong.

You are not broken, sweetheart, not in any way that really matters.

You are different, sweetheart, and life may never be easy for you.

You are so precious, sweetheart, exactly the way you are.

So here’s us, grateful for what is, and grateful for what could be, just as long as it involves many, many years with our sweet girl!

Hoos ll Family Portraits-23Beautiful photos by Taliah Leigh Photography
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