To declutter, to de-stress, to deemphasize, to re-evaluate…

We are in process of preparing for a yard sale.

It is enlightening.  It is wearisome.  It brings laughs of memory, serious evaluation, some contemplation.  And it humbles.

Truly, when I examine all of our closets, our pantry, the storage space, and the tops of all surfaces, I am surprised by how much “junk” we have.  And I don’t mean, literally, junk, since a lot of it is quite nice and pretty and sentimental.  But how much of it do we really need?  Isn’t simpler, less clutter, less busy, a better way to live?  Why then do we feel we have to buy/accept/use everything we see/are given/own?

When I assess our “one-man’s-junk-another-man’s-treasures” I realize how much time we – I – spend on things.  Because we have so much stuff, we have to find ways to organize it.  Clean it.  Use it.  And all those hours when I could be playing with my children or writing therapeutically or immersed in a lazy, iced-tea-on-the-porch conversation with the love of my life, I am instead spending either in re-organizing, cleaning, or stressing out over the never-ending clutter.

It amazes me how good it feels to purge.  Really good.  Even when some of the things in my “to-sell” pile are beautiful things or useful things or sentimental things, they are still just things.  I have my memories without these things.  They can be beautiful in someone else’s simplicity rather than in my mess.  They can be useful in someone else’s kitchen where they can be hidden away rather than tripped over.

It’s made me think a little bit about the clutter in my head and heart these days.  So many things consume my mental energy and prevent me from doing what really matters – seeking answers to some of the Deepest Questions I Have Ever Felt (not Asked, or Voiced, or even, in some cases, Formulated – I haven’t gotten that far yet).  Confessions: the clutter in my head includes, among other things, envy.  Dreaming about more “things”.

I guess purging your house of stuff is kind of a metaphor for purging your mind and time of Useless Thoughts and Things.  It’s hard work.  Draining.  Frustrating.  But so worth every effort.  Because once your house is purged, you can start arranging it in the way you want, in the way that reflects your priorities, your mission in life, the way you want not just to be reflected but the way you truly want to be.

I told Bob today that I’d like to know why we have everything in our house.  I realize that’s not entirely possible – there will be things Bob understands that I don’t and vice versa.  But it’s a good goal.  And it will prevent me from buying things that I don’t want to have to a yard sale to get rid of later.  To really think about why I’d like something, why we “need” something.  Isn’t it better to do the same in my mind – to select the things I want to contemplate, study, understand, express and know?  To re-prioritize my thoughts and dreams and goals.  To seek being the best wife and parent and sister and daughter and friend that I can be requires mental energy – space in my head to really work those things out.

So, now a yard sale.  Choosing and pricing items, preparing them for quick exit of the house, making and posting signs…all that goes with it.  I’ll be glad to be done.  And I look forward to creating a more simplified, less cluttered, more people-focused and thought-focused and living-focused life.

** Confessions: this post is a few days old.  Yard sale is now complete.  Our little money canister includes an extra $52.50.  Tiny pennies for a whole lot of work and a great big lesson.  Stuff just isn’t worth a whole heck of a lot! **

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“Train up a child…” and she will call you a big meanie!

Well, today was a first.  Kind of a yucky one.  In process of putting Sara to bed, I agreed to allow her to have some yogurt (plain Greek yogurt with unpasteurized honey to sweeten it – oh my, heavenly).  Already dawdling as she was, Miss Sara sat down and twiddled her thumbs, started telling stories, tried to make the amount of yogurt on her spoon “just ‘zactly right, not too much” (a process of filling the spoon, then gently tapping it against the bowl to let some go, then realizing there isn’t enough left and adding some, and so the cycle begins again).  Finally, exasperated, I told her if she didn’t finish the yogurt in ten seconds, I would very happily eat it for her.

“Bad mom,” was her prompt and non-too-gracious response.  “You’re mean.”

Seriously, how can you say "no" to that face???

Or that one? Boy, we're in trouble.

Needless to say, while I gave her a death glare she very quickly gobbled up the remaining bites of her yogurt.  The rest of bedtime did not speed up at all – let’s just say dear daddy is still up there (I’m not sure he’s aware that she’s already had a glass of water, brushed her teeth, gone to the bathroom, had a story and a Bible story and a prayer and a song and a kiss and a cuddle – since it sounds kind of like those things are happening again and I just don’t feel like going up there to end the whole thing).

At any rate, Sara’s little sass-back really caught me off guard and made me wonder two things: a) was I being mean? (my tone can be kind of harsh, my personal Mirror has told me) and b) have I spoken to her that way?  But then I realized a more important and unfortunate truth: as I seek to train up my daughter(s), guide them up in (hopefully) godliness, lovingly discipline them, teach them good habits and good character, they will in turn call me a big meanie, despise the help, and seek to do things all their own way.

The truth of the matter is, discipline is a going concern in my brain (and not just in our home).  Do we demand instant obedience (keeping in mind those circumstances where disobedience is a safety issue) or pursue only relationship (knowing this is at the heart of our relational God)?  One author, Danny Silk (Loving Our Kids On Purpose), says something that shocked me (on first read): “I want to propose to you that freedom is a top priority in Heaven, because it is what makes relationships possible…He is trying to prepare us to live absolutely free lives in an environment of unlimited options more than trying to keep us from sin.”  And he suggests that since Heaven is not an external government, neither should our homes be.

This is a fascinating approach to behaviour – and a mightily terrifying one.  It relies on

our own living-in-total-freedom-or-not approach to life (and our definition of said freedom),

the depth of our trust in our children and our relationship with them,

and our own dynamic (or not so much) relationship with God.

Our desire is that our children obey because they trust us, because they believe that we have their best interests at heart and can see ahead farther than they can.  This reflects our own relationship with God and our own trust in him.

So how to do it “right”?  Are there better and worse ways of training up our children?  Are there right and wrong ways, morally?  How can we possibly know the repercussions of the way we discipline our kids?  What kind of dysfunction am I going to leave on my beautiful babies by the way in which I discipline them?

And the biggest question – for me – is how to we together raise up our girls to share our heartbeat, to know the depth of our love for and commitment to them, to desire to walk joyfully and gracefully in relationship with their parents, each other, and other people, and to know that sometimes that is most closely reflected (in these early years) by trusting obedience – to their parents, and to God.

Thank God for the wisdom he gives us freely!   Thank God that he can cover over those areas in which we are not perfect!  Thank God we don’t have to do this on our own!  (And man, am I glad for my fabulous parents and in-laws, my dear friends – mommies and otherwise – and all those mommy-bloggers whose stories and insights challenge and inspire).

                              Or else all those “bad mommy” and “big meany” comments that are coming down the pipes might really get to me…

(** Reminder: I signed up for this when I chose to have children **)

Five-Minutes Friday: Beauty

For five minutes, just let your fingers go with the flow.  Don’t self-edit.  Don’t pause to evaluate.  Just write.

The topic:  BEAUTY.

Ready: GO.

Beauty is my 3-year-old daughter running ahead of me down the sidewalk.  Her gorgeous blonde hair dances around her shoulders, glistening under the sun.  It is hair that does not come from me.  Her beauty does not come from me – physically, that is.  She reflects so much of someone else: the gorgeous, dark-lashed blue eyes, the porceline skin, the golden tresses, the slender height.

But beauty is not only physical.  Every day – almost – I tell my Sara that the best thing is to have a beautiful heart.  A Beautiful Heart.  What does that look like?

Compassion.  Generosity.  Mercy.  Justice.  Truth.  Love.  Grace.

And in a little girl’s terms, what is true beauty?  To share her toys.  To cuddle her sister.  To obey her mother (with a twinkle in her eyes).  To kiss daddy and squeeze her arms around his neck.  To confess.  To forgive.

All my life I wondered if I was beautiful.  Compared myself to pictures in magazines, images on TV, girls described in (usually Christian) novels (aren’t they almost always beautiful?).  Hoped someday a boy was think I was pretty.  Focused on the wrong kind of beauty.

I hope and pray I can teach my daughters true beauty

STOP.

These are the moments…

Sometimes you either must laugh or you will bawl your eyes out over the antics of your kids.  The endless screeching gets tiring one day; the next you worry about their silence and wonder if they’re sick.  One minute they play beautifully together, loving on each other like only young siblings can; then next you truly believe one of them will die at the hands of the other.  But there are those things that are hilarious – even in the moment.

Such as:

Sara parking herself stubbornly at the feet of Aliyah-bouncing-like-a-kangaroo-in-the-jolly-jumper and then freaking out when Aliyah’s twinkle toes land on her head – sometimes unintentionally, other times, not so much (in fact, Aliyah was swinging herself as far as she could and stretching her tiny little leg to reach Sara’s nose).

This could turn dangerous...and sometimes does...but in the moment it makes all of us ROFL (roll on the floor laughing...)

Aliyah sneaking said twinkle toes out of her high chair and onto the table with a sly grin.  The grin is especially sly and smirky right after I gently place that foot back where it belongs.

Always. Sheesh.

Sara being “so ‘sited” about her doctor “poin-ment” that she fairly bounces, even while sitting on the high tissue-covered bed.  Sara announcing that the blood pressure arm hug is “sooo cute.”

Aliyah being the noisiest baby in the world, babbling (screeching, really) up and down every aisle of Staples as she attempts to grab everything in sight.

Sara “helping” Mommy clean by spraying everything in the house with a vinegar-water cleaning solution.  Everything.  Including my clothes.

Aliyah desperate to grab the cat’s tail, screeching (did I mention she’s loud?) “cack!  cack!” as poor cat attempts to escape her finally-chubby fingers.

Sara putting diapers on puppy and announcing he’s “poopy now.”

What a serious goof!

Aliyah, once again in the jolly-jumper, picking things up with her toes.  Oh, those cute little toes!!

Both girls digging into the cherries and leaving dark purple streaks all over their cheeks and chins and hair and neck and clothes and legs and mommy.

Oh, these are the moments indeed.

Slamming “the church”

I’ve been doing a lot of thinking.
Questioning.
Analyzing.

Not a lot of praying, I’m (not totally) ashamed to admit.  Neither Scripture reading.  I’m afraid I haven’t really been seeking answers to some of my questions, only venting them (or letting them roll around in my brain).  Truth be told, I am not yet completely interested in exploring some of the questions because I’ve grown up with ready-made answers and those ready-made answers don’t fit.

In all honesty, I have a gut feeling about God.  About his love.  About his grace.  About how he is big enough for these questions.  And about how everything I have always believed makes sense.  It’s just that, at the moment, I’m in a bit of a faith funk.  And I’m thankful for all the people who are praying for me because, like the kids’ Bible song (there’s a lot of those in my house these days), “It’s me, it’s me O Lord, standing in the need of prayer,” and because I’m not the one doing it at the moment.

But that’s not actually the point of this particular vent.

I’ve been reading a lot of mommy blogs lately (only yesterday I realized what a trend I am joining.  It’s kind of embarrassing, really).  So many of them have challenged my thinking, inspired my actions, and increased my hope in humanity.  (And made me realize how many totally incredible writers are out there in the world.  Sheesh).  I’m starting to notice a pattern of thinking, however, that really bugs me.

A lot of people are totally slamming the modern church and Christianity in general.

Now, don’t get me wrong, I know about the Crusades and other evils done in the name of Christ.  I am fully aware of the judgemental hypocracy that exists and has existed in the church.  But hasn’t the church also done tremendous good in the name of Christ?  (We are beneficiaries of said good; see my “gratitude” post).  Doesn’t such judgemental hypocracy exist in other, for instance political, arenas?   Haven’t the theology and interpretations of the modern church been the roots of growth, change, and new forms of thought?  What kind of arrogant are we if we decide to berate the church and Christianity on the basis of believing we know better?  Are we not also judgemental, then?  I’m not saying I agree with all the methods of the modern church and I definitely think we should be seeking ways of cultural relevance (not compromise) in our method (not message); I do think historic “sit-in-the-pews-and-listen” doesn’t fit with my generation of learners (there’s my “educated” pc coming out).

I also say the church is still people and not a building (not a new thought by any means, obviously), and by discarding what has gone before us, we are invalidating our own “new” positions (emerging, post-emerging, whatever we call them).

AND, if the church is full of people who think this way and are silently pouting on our blog soapboxes rather than prayerfully and actively pursing a new way of doing church among our church, then who, really, is to blame for a stagnant and judgemental church?

It’s a vent, I know.  And as my eyes blur together this midnight hour I realize it may not make much sense.  But I’m kind of tired of the trendy “I’m sick of church” mentality.  I have no stats to back it up.  These are just my thoughts, such as they are.

A tent-camping adventure…

The sun shone as we headed northwest to Gull Lake for our first tent-camping experience with small children, a 3-day/3-night vacation only a few hours from home.  It was beautiful.  It was wonderful.  It was NOT restful (but what kind of tent-camping is restful with small children?).  We had no idea of the clouds that were in store…and that it would be wonderful fun anyway!

Canola fields – can you tell I love them?

Nap time.

Aliyah slept like a trooper.  As long as Mamie Giraffe is with us and she has a bottle of water along, it doesn’t matter where she sleeps; the tent was no exception.  Perhaps because we disturb her sleep every night and morning, she now sleeps like the dead and does not wake up to play at ridiculous times, for all Sara’s valiant efforts…

Mmm sticky goodness.

A beautiful boardwalk - a few moments later, she fell into a giant mud puddle. Too bad I didn't catch that on film!

In spite of a fairly chilly Friday night and an uncomfortable drizzle Saturday morning, we enjoyed a Saturday camping breakfast of oatmeal and fruit and mmmmm bacon, and then the sun shyly peeked through the clouds and let us in on a wonderful day.  After a VERY muddy playtime at the beach (again, photos missing – perhaps our co-camper has some good ones), we headed back to our site for a meal fit for kings: marinated barbecued steak, fire-roasted potatoes, mushrooms and onions pan-fried in butter and garlic salt, and a crunchy-fresh garden salad.  Little did we know what was brewing to the west!  We had only just finished dinner when the dark, pregnant-with-rain storm clouds broke over us with a blustering wind and torrential rain.  Scrambling to hide food, utensils, and anything else that might blow off to Oz, we grabbed our children and buried ourselves in our tents for the night.  Sara had a mass panic attack at the wind that whipped at our tent (I think the following lyrics from a children’s Bible song kind of got to her: “The foolish man built his house upon the sand/and the rains came tumbling down/and the house on the sand went SPLAT”) until we pulled out her first “paint with water” – a saving-grace-disguised-as-a-birthday-present.  After that we cozied up with books and songs and paints and colours until we all drifted into sleep.

Things to do of a stormy night...

Camping tips for those parents who would prefer not to resort to a DVD movie during family-nights-in-the-tent-in-a-crazy-storm:

  1. Bring a delectable children’s novel (older kids – can’t wait to bring Narnia!) to read aloud.  For small children, The Gruffalo does wonders.
  2. Include easy-to-pack and entertaining indoor toys: colouring books/crayons, those lace-cardboard combos, a couple small cars, perhaps finger puppets!
  3. Try to have a small arsenal of funny or interesting childhood stories to tell your children.  Note: try not to include stories about tents that fell down on your family.  It may entertain your child at other times, but not when the wind is knocking at your…ahem…cloth door.
  4. Sing camp songs!  Whether or not you can sing, very distracting for kids.  Especially if you have actions that make you seem really dorky and hilarious.
  5. Include a night light.  We had a battery-operated candle that was very comforting.

Yummy ice cream at the beach...

Contest: can you make the funniest caption? WHAT was he thinking?

Words cannot describe such cuteness...

Thank goodness for friends with whom we “shared” cooking – it was so helpful to have people around while we cooked and managed Aliyah’s meds somewhat simultaneously most nights.  All in all, a smashing success.  Can’t wait to go out again!

Parenting Aliyah

Some of you have asked what our lives look like now.  Since it’s changing so rapidly, it’s kind of hard to say!  The pathway on what started out as a seemingly impassible mountain is beginning to widen, the slope to decrease, and the pace to relax, so we can freely say everything is looking smoother from here, although it isn’t without bumps.   But parenting Aliyah is a joy beyond words.  For her sake, I would erase cystinosis in an instant.  But I would take her any way she comes, she is just that amazing.

These are the new pit-stops on the Walker Highway of Life (haha).  (If you have cystinosis or a child with cystinosis and are reading this, I’d love to know how your schedule compares…).

Meds and Feeds

5:45am-6:30am (or so) – Bob’s shift

11:30am-12:10pm (ish) – Crystal’s shift

4:45pm-6:15pm (kinda) – Crystal or Bob’s shift

11:45pm-12:15pm (thereabouts) – Crystal’s shift

Each dose includes some or all of the following syringes:
Supplements: calcitriol (breakfast only), potassium, dicitrate, sodium phosphate, carnitor, iron
Medication:
locec (supper only), timotheprim (midnight only) cysteamine.

Each feed starts with about 60 mLs of formula and the supplements (6 at breakfast, 5 at all other times).  It takes about 15 minutes to administer into her g-tube (which is a tube in her stomach.  The meds taste icky and Aliyah doesn’t like to eat, although, lately, she’s been sucking the formula out of the syringe.  A good start).

About an hour after the first part of the feed, Aliyah receives cysteamine and the last part of the feed (also 60mL).  Sometimes this last feed is given in one dose, sometimes divided into 2 smaller doses, depending on how she’s responding.  For awhile there, she would throw up 3-4 times a day, but since the new antacid has been introduced, that has decreased significantly.  As in, about once every two weeks and usually in conjunction with a missing nap.

Sara likes to administer these feeds, under great supervision.  She’s my “little nurse.”  Hopefully, she grows into deep and active compassion, gentleness, and empathy through this!

Our little nurse

In between feeds, life is pretty normal.  We go to the park, play in the pool (yay summer!), clean the house, colour, dance.  All the good fun times of a toddler, her baby sister, and an entertaining (and entertained) mommy.

A busy calendar

Daily preparation of cysteamine, the primary medicine, by mixing pills and water and drawing syringes.  She’s currently on a 112.5 mg dose/6 hours and we’re tapering up again because she grew!

Monthly trips to Shoppers for an antibiotic Aliyah requires (preventative) and her antacid.

Weekly (Thursdays, so far) med prep nights.  It takes 2 people 1.5 hours to pull 130 syringes full of meds.  The time it takes is shrinking, though!

Weekly (at the moment, not forever) visits from the nurse to weigh Aliyah.

UPDATE: Aliyah weighed just under 13 lbs when we first were admitted to hospital June 1.  Today, she weighed in at 15 lbs 13 oz – almost 3 lbs in two months!

Every six weeks, ordering food supplies and formula and picking them up from the warehouse.

Quarterly (Sept., Dec., March, June) visits to the Alberta Children’s Hospital for the cystinosis clinic, blood tests whereby Aliyah’s cystene levels are evaluated.

Quarterly trips to Shoppers Drugmart for a boatload of meds.  Must say, the pharmacists’ eyes widened a bit when they saw Aliyah’s file.

Yearly order of colour-coded syringes, which are (thankfully!) sent straight to our door.


I know it sounds like a lot.  But if I’d written up the schedule in the first few weeks that we were at home, it would have been several pages long with multiple dosage times!  It is getting easier to manage and the times for all of the preparation less cumbersome.  The hardest part is actually not the schedule, but the realization that by the time Aliyah is administering her own meds, she will never again experience more than 6 hours of sleep in a stretch.  Rarely does either one of us do both the midnight and the wee sma’s dose; we have been able to leave the girls’ with our parents overnight for a “vacation” from the meds.  Aliyah will always have to do both and will never get a vacation.  Even the hope of a delayed release drug is hard to hang onto, as it will be ridiculously expensive and not covered by insurance.  But she is a trooper; it will be her routine; she will be a strong, compassionate, and napping young lady!

I look forward to rewriting this as it gets quicker and easier.  Eventually, according to one mom, we will notice that she has cystinosis “four times a day, five minutes each.”  Can’t wait!