Still

Five minutes Friday.  That’s all the Gypsy Mama gives you to freewrite about a topic.  No self-editing (I do that a lot), no stopping to analyze or think about things or be interrupted by something outside (that’s tough).  It’s enough time to wet your appetite, open your mind up a little, get the creative juices flowing…but not enough time to get it all out! (:  But it’s a great exercise.  Try it.  I dare you.

Here I go…

Still

10:15pm.

Be still.  And know.  That I.  Am God.

Be.  Still.

How often are we still?  What is stillness?

Antonyms: disturbed.  agitated.  unquiet.

Synonyms: calm.  quiet.  at rest.  hushed. tranquil.

My house is still.  That is, it’s quiet.  Is it calm?  Well, at the moment, while the girls sleep and rest.  It’s definitely hushed.  I hope it’s tranquil, most of the time.
Is stillness the same as solitude?
Can you have stillness when your house is full of sounds and agitation?

The dishwasher.  The TV.  The ipod.  The radio.  The alarm clock.  (Okay, that’s not a constant, but it’s frequent enough to interrupt stillness…)

I want my heart to be still.  To carry stillness into the business and busy-ness of my day.  To have calm and rest when my mind is confounded by the millions of thoughts that bombard it.  About cystinosis.  About adoption.  About parenting.  About faith.

Can I be still when my mind is full of questions?  When it’s hard to shut off the noise in my own head?

Be still.  And know.  That I Am.  God.

10:20.

The paradoxes of a 3-year-old…

Mmmmmm…why eat cake when you can lick beaters?

This afternoon Sara and I baked her birthday cupcakes, and while I watched her licking chocolate off the beaters, wistful memories and reflections of my beautiful oldest daughter flittered through my tired brain.  She is a child of paradoxes, changing moods the way Calgary changes weather and finding joy in totally opposite things on a regular basis.

She’s a dress-a-holic.  Frilly, girly frocks hang in her closet.  Her first words in the morning are, “Can I wear a dress?”  She changes at least three times a day (into different dresses) and wants to sleep in her favourite skirt.  Frequently, I find her rummaging through my make-up drawer looking for lipstick or body sparkles (yes, I still have those leftover from my wedding day).  Every time she sees me putting something on my lips, it’s “Can I have some chapstick, just like you, Mommy?”  In a million different ways she shows me how she loves to be pretty and how she recognizes beauty in others (okay, cuteness rather than beauty, but it’s close).


She’s obsessed with cars.  I mean, obsessed.  She sleeps with a little schoolbus near her bed, has imaginary conversations with Thomas the Train (okay, not a car, but I’m a girl so I lump them together), carries her favourite little green car around with her, and always pilfers a car from Grandma’s collection (I find it clutched in her hands when I’m unbuckling her from the car seat).  Daily, she tells me she wants to take a ride in the van.  For a time there (about two months), the constant refrain around our house was, “Get a car wash today, Daddy?”  She built car washes with her duplo blocks, and washed the van with a bucket and a rag – leaving a few streaks here and there.  Grandma’s aforementioned toy cars are lined up, counted, driven into “parking spots – dat one’s kina snug,” and raced down tracks.

Daddy spending hours setting up Sara's birthday gift. It is now getting dark. Soon he will wrap this parking garage in Barbie wrapping paper. Paradox?

She alternates between, “I do it mySELF, Mommy!” and “Arrggghh!!  I can’t do it.  Help me!”  One day her favourite colour is pink; the next day, blue.  One day, “It’s too windy!” (insert screaming and crying here) and the next, she is racing up the street, wind blowing through her blond hair, shouting, “I love wind!”

She isn’t all paradoxes.  She has figured out the camera and most definitely prefers to be behind the lens rather than in front.

Sara photographing her shadow. Without anyone else noticing. Quite a surprise when I scanned my pictures!

She loves helping me administer Aliyah’s meds, and calls herself my “little nurse” who “shoots s-ringes” into Aliyah’s g-tube (shooting is indeed the correct term; I believe she has occasionally flooded Aliyah with a little too much formula at once).  To be honest, she adores Aliyah, helping her learn how to walk (with perhaps too much speed), “sharing” toys (which involves grabbing them away and holding them just out of reach so a screaming Aliyah can look at them), and dancing with a jolly-jumping Aliyah to the tunes of the Lion King.  Her most common story request is that I tell a story about Princess Sara and Princess Aliyah.

But my baby girl is already growing up.  In one moment, she wants to be a baby like Aliyah, and in the next, “I’m a big girl now!  I’m almost free!” (Lol).  Yes, Sara, you are almost free.  May you be free forever! (:  Happy birthday, Princess.  I love you more than you will ever know.


Half-full nothing!

This morning, after Aliyah’s blood work was done and we’d received discussed Aliyah’s medical needs, caloric needs, weight gain (a whopping 15 lbs 1.8 oz!!!  Way to grow, Baby!), the social worker popped in to say hello.  She introduced me to our team psychologist (yeah, we have a team of people we don’t have to personally pay who care for Aliyah and for us; we love the Alberta Children’s Hospital), who is supposed to make sure we are coping well enough with Aliyah’s diagnosis.  The social worker noted that I seemed “lighter and happier” than I had for awhile, and then said in her sweet Irish brogue,

It makes all the difference, if you see your cup as half empty or half full.”

“Half full, nothing!” I chirped.  “It’s totally full!”

And as I reflect on fullness tonight, I realize that it’s true.

Half full is noting I have a house but it isn’t big enough or has a too-small kitchen.  Full: I have a roof over my head.  I get to renovate it to suit our needs – and our fancy.

Half full: I have a daughter with cystinosis who is tolerating her meds and gaining weight, but still too small.  Full: I have Sara and Aliyah, two lively, precocious girls who, once upon a time, I did not think would ever be.

Aliyah in all her goofy glory.

Sara, such an introspective. How can one not be full with such hilariousness in the house?

Half full: Our church family loves us.  Full: Our church family loves us, and we love them.

Half full: I married my childhood sweetheart.  Full: my husband is my best friend, my rock, the father of my children, our breadwinning provider – and he still melts my heart.

Half full: We have head colds.  Full: we have head colds but we are otherwise completely healthy, have a comfy bed to sleep in and can fill our diets with a variety of delicious things full of nutrients.  I’m not stuck eating “ugali” at every meal!

Half full: I have so many questions about my faith.  Full: I believe in a God who is big enough and wise enough and full enough for those questions.

 

Half full nothing.  My cup is full.  And overflowing.

Niagra Falls, full and overflowing. As is my heart.

Stones, popsickles and a million giggles

It is 1:16am and I am enjoying the dark, silent house in between feeds and meds for Aliyah (a nightly routine).  We just returned from our first camping trip with cystinosis this afternoon, and it was a soaring success!  I must admit, we were rather daunted Thursday night while we were packing and preparing.  First of all, Bob got called out to a site for work; secondly, it was med-prep night (so my wonderful mother-in-law came over to help “pull meds,” (a cherished few friends and family members have helped with that already), and thirdly, we were scrambling to get the trailer ready with everything we needed.  A lot of work with any small children around, to be sure, but with Aliyah’s extra needs it was quite the mental-list-making-journey to have everything ready to go!  I will confess, we stayed very local just in case, and camped in nearby Okotoks at Riverbend Campground.

En route to Okotoks - those clouds hung above our campsite, actually. Beautiful.

Our first night, a rainy downpour complete with thunder and lightening, didn’t seem too promising, but according to the Weatherman we were headed into some sun, so our spirits were high.  We met my cousin and his family in Okotoks for Sara’s first bowling experience – glow bowling (which we weren’t expecting and kind of freaked me out because I know those flashing lights can cause seizures – just another thing we didn’t need to worry about).  Sara loved it, and was adorable in her little bowling shoes carrying the little bowling ball around.  Even Aliyah got in on the action, sitting with legs apart at the bowling lane and pushing the ball across the line (slowest bowl EVER).  After dinner at Boston Pizza I got some much needed cuddles with Sara, who, it turns out, doesn’t ask for Mommy-cuddles a whole lot (she’s a serious daddy’s girl).  Fortunately, I get my share of Sara-touch with wrestling…

In the dark cold of the trailer that night, neither Bob nor I got much sleep: meds came far too soon and Sara wasn’t completely comfortable on the table-bed, especially as the rain tinkled on the glass and the lightening flashed.  I ended up sleeping with her at about 5am, too tired to bother returning to bed once she started snoring again.  And in the morning we had a soggy surprise: since I had forgotten to change Aliyah in the middle of the night, and Bob didn’t change her at the 6am feed, she was sleeping in a puddle of pee that reached all the way up the back of her neck to her hairline!  I guess that addressed the question of whether or not she actually needs to be changed in the middle of the night!  (FYI, to bed Aliyah wears diapers with ladies’ long overnight pads in them, which is pretty freakin’ hilarious).  Turns out that even with a mid-night change, Aliyah swam in her sleep again Saturday night.  I guess sleeping in one kind of squishy position without room to move leaves her vulnerable to soaking…

To make a long weekend story short, the sunshine showed up on Saturday and we spent the day throwing stones in the river (and there were plenty of them at our campground), strolling along the muddy, tree-lined paths, and enjoying Sara’s first orange creamsickle.

Sharing is lovely with a baby - it doesn't have to be exactly equal! But just you wait, "Yaya," until she's counting bites...

Some truly delightful moments:

  • Aliyah demanding to walk (constantly!) but this time, not satisfied with being in my arms, she wanted to use her chunky little goose-stepping legs herself
  • Sara learning to ride her pedal-less bicycle, and her endless giggles as she tried to run over Mommy’s toes
  • Aliyah desperately pointing at Sara’s bike and wanting a turn to ride it (she even says “bike!”  What the heck?!?!).
  • Sara, terrified of riding on the wooden swing or the unusually wide-bottomed cloth swing, giving the empty swing underducks
  • Sara’s first wiener and marshmallow roast (I was far more enthused about this than she).
  • Holding Sara under her armpits in the river while she splashed and shrieked with laughter
  • Quiet hours with Bob around the fire while our little cherubs slept away in the trailer

Happy cycling!

Oops - a little burnt!

All in all, Aliyah’s meds only slightly disturbed our freedom.  We had to make sure we had her med bag every time we left the site, and we’d forgotten the ice-pack for the cysteamine; we had soaked diapers and baby clothes to contend with and meds in the middle of the night and the wee smas.  Other than that, our spirits have been boosted: this thing will not beat our ability to enjoy the outdoors, and does not have to prevent Aliyah from being spontaneous!  Spontaneity will simply require a little bit of foresight…

And this last photo sums up the entirety of the weekend, and how we are recuperating…

 

With Humble Gratitude

A million little gifts.

With our gratitude grows hope

With our gratitude our hope grows

Today is only a glimpse into the things we have to be grateful for.  A friend and her daughter came to hear Aliyah’s story and to entertain Sara, who rested on a towel-covered couch with a bucket handy to catch the results of over-heating yesterday.  An acquaintance from church dropped off (to our surprise!) a warm meal so I did not have to cook.  My own dear mother, who has the biggest servant’s heart of anyone I know, took Ali for a walk while I tended for Sara, and then cleaned my house while I napped after two hard nights.  Another friend, also from our church, brought beautiful, hand-made blankets sewn with love for my daughters.  And another couple from church invited us to their home for a delicious barbecued pork dinner, so that I did not have to cook OR clean the kitchen.

A flower blanket for baby Ali

Sara's butterfly blanket, made with love

Sara's butterfly blanket, made with love

Creativity and service abound in our friends and family.  We have had:

Over a month of frozen meals, as well as multiple hot meals both brought to us and served to us in someone else’s home

Financial gifts to help with medical costs (plus a doctor who went to bat for us and got coverage for Ali’s crazy, unapproved-in-Canada, life-sustaining drug)

Loving care for Sara whilst we sojourned in hospital with Aliyah

Garden-weeding

Flowers to greet us upon return from the hospital

Freshly baked muffins

Laundry washed and folded

Care-takers for the girls so I could rest, shop, or clean

Grocery shopping

House-cleaning

Gifts of teddy bears, hand-made blankets, clothing, home-made cleaning supplies

A brand NEW garden by the garden fairy (my mom!)

Bathroom cleaning (this is the humbl-ing-est gift and so helpful)

Friendship and listening ears over chai tea lattes

Endless amounts of prayer support

***

If you have ever been in the hospital for an extended period, or had a major life-shift that consumed hours of your days and nights, you know the significance of these gifts.  If you have never has such “luck,” you can imagine the significance.  And if you have ever wondered how to help someone in a life-changing situation, see the above for ideas.  These gifts saved our sanity.

These we have been given as we have entered into our new reality.  My heart is overwhelmed with both humility and gratefulness.  This is what it means to be part of a family.  This is what it means to be loved.

It reminds me of a hymn that, years ago, struck me as applying to someone else and now apply fully to me and mine.  I hope and pray that I can return this abundant love to others.  May God bless you as you have so blessed us.

The Servant Song (Richard Gillard)

Brother, sister, let me serve you
Let me be as Christ to you
Pray that I may have the grace to
Let you be my servant, too.

We are pilgrims on a journey
and companions on the road
we are here to help each other
walk the mile and bear the load.

I will hold the Christ-light for you
In the night-time of your fear;
I will hold my hand out to you
Speak the peace you long to hear.

Brother, sister, let me serve you
Let me be as Christ to you
Pray that I may have the grace to
Let you be my servant, too.