These are the days of our lives…

So much has happened in the last few weeks!  How do I summarize?  Once upon a time I taught my students a five-word poem, the irony being that it is based on 5 words but has as many as you really feel like adding.  This will not be a poem; I can already tell that from what’s in my head.  But I’ll follow the same premise.

These are the days of

Adventure – Calaway Park and brave Sara chuting the chutes, crying all the way (now she says it’s her favourite).  Riding the Caterpillar and the Carousel at Heritage Park, savoring fresh bread with jam and cheese, and licking melted vanilla ice cream as we stroll.  Stopping for a picnic so Sara can play while I pump Aliyah full meds through the g-tube.  Sara’s first “big girl” swings – under-ducking her to her heart’s content.  It is true freedom to watch a little girl shrieking with laughter, hair blowing in the wind as she reaches the blue blue skies.

Emotion – Watching Aliyah suffering is like a heartache.  Besides cystinosis, she has a duplex kidney, which means one of her kidneys has an extra chamber that has partial function.  Urine therefore backs up a little bit, collects bacteria, and burns on the way out.  It explains her recent fevers, excess vomitting, lethargy, and irritability.  Sticking a little bag to her bum to collect her pee causes violent crying because it hurts – she sees the little bag coming and tears stream down her cheeks as she fights it.

Exhaustion – Night-feeds start at 11 – and, 2 hours later, I fall into bed, my eyes crossed from fatigue.  Five hours after that, Bob wakes up to do the morning feed, another two hour ordeal.  Throwing up after meds is a common thing – we can catch it just before now, so we can lean her over the tub, but she wails for us to cuddle her even as we know she’s about to explode.  Periodically in between midnight and early morning feed, either Sara or Aliyah wakes up for cuddles or water.

Sweetness – Sneaking in at night to give Aliyah feeds, I watch her while she sleeps.  She lays on her side, her tiny feet pressed up against a crib bar and her arms wrapped in snuggle-form around her sippy cup and a teddy bear.  Without opening her eyes, she pops out her soother, draws the bottle to her lips, and slurps thirstily until sated, when she brings the sippy cup back down into a cuddle.  In the morning, Sara loves to play nurse and help me feed Aliyah, and she’s fantastically cautious with the speed at which she presses the syringe.  She prays daily, “Dear Jesus, help Baby Ali not to puke.”

Love – Cuddles from Aliyah, who loves to wrap her arms around my neck and squeeze.  Laughter from the girls as they play together, dancing to music or squealing with joy over some crazy thing they’ve done.

Gas(oline) – endless amounts draining through my tank as I make countless visits to the Alberta Children’s Hospital – the Hilton of Hospitals.  Trip after trip that takes so many hours because it includes a feed/med time, which gobbles up 1.5 hours of every meal.  Sara is remarkably patient for an “almost-fwee” year old, but she has her moments of frustrated.  “That’s annoying,” says she, one fine day.  We have to laugh.

Angels – so many people have poured themselves onto us.  We have a deep freeze and a freezer full of frozen meals, and several more promised hot meals to come.  People have weeded our garden, cleaned our bathrooms, done our laundry, baby-sat our girls, prayed for us and encouraged us and gifted us, often in the name of a God of love.  One doctor has gone to bat for us with the Alberta government – even getting our cysteamine prescription insured!  We are amazed by the angels among us.

Joy – Riding in the van while we listen to scores from the Lion King, Sara asks me to name the instruments for her.  We tell stories that fit the mood and emotion of the music.  We clap together and Ali joins in.  My girls are my delight.

 

Sudoku is boring in the dark

The other day, my dear love did the midnight shift (currently midnight feedings take 1.5 hours, and that’s if the formula+medication combo doesn’t make a return appearance – such an event usually equals another 1.5 hours).  In those dark, silent hours, whoever is “on shift” has a few options: blearily watch TV, read a book in the dim light of Aliyah’s new dimmer-switch lightbulb, eat yummy chocolate (thanks, friends), or play sudoku while rocking slowly in Aliyah’s rocking chair, squinting to see the tiny numbers and identify 4s from 9s or 3s from 8s.  In one moment of silliness, Bob sent me into gales of laughter over how boring sudoku was in the dark.  Now, it truly wasn’t that funny (I see that in the light of day), but to my tired ears it was a tiny piece of hilariousness much needed in this crazy new reality of ours.

And in contemplation, we realize it’s not all grim and dim.  There are some very hilarious things about cystinosis (in my mind) and we’ve had some uproarious moments in the last few days as we figure things out and develop some “tricks of the trade.”

Here’s a bit of silly cystinosis stuff:

• Some day Aliyah can point out how cool her parents are: “Look, my mom and dad mix my drugs for me!”
• Aliyah has a g-tube for meds (and feeds for the time being).  She can do all kinds of tricks with it, including farting through her tummy.  Bahahaha!  (Elementary school boys will love that one).
• You could probably bottle Aliyah’s pee and sell it as a high-electrolyte drink (Ali-ade, anyone?).
• One day in the (hopefully) far distant future, dear daddy will not need to polish his rifle to keep the boys away.  He can rock in his rocking chair holding a syringe of potassium as a highly effective threat (“If you break her heart, I’ll stop yours.”)

We have lots to learn and probably this crazy learning curve will not turn to a gentle slope anytime soon.  But for the moment, the sun is shining, my two oh-so-breath-takingly beautiful girls are sleeping upstairs, the house is silent, and all is good with the world.

Perhaps I should take a nap.

Our new reality

Tonight Bob and I encountered, for the first time, the changes these meds mean to our own lifestyle.  After figuring out how to do things, organizing my mind around it, getting out supplies, I took a look at the table (which had equipment and medications enough for four days) and felt my spirits sinking.  I know that at some point, this will not take 2 hours with two of us working diligently; I know that one day we will be more efficient and it will just become routine; but right now, this new reality is very daunting.

The start of a 2-hour process...

And Sara?

My little princess Sara, what a trooper she has been!  Since day one of this incredible journey, she has been bounced from one loving home to another, sleeping in various beds and fitting into various routines.  For a few days, she went haywire when she came to the hospital – hitting mommy, avoiding Aliyah (the ng-tube kind of freaked her out), ignoring directions, racing around yelling and generally letting us know how she felt about this whole thing.  But as she adjusted, she began to show real understanding.

“Ali has a nose tube for meds,” she would say to her cousin J.  “Ali in the hop-sital.  We going to see her,” she would boast proudly.  She plays with the stethescope at home, pronouncing it correctly and using it – well, kind of correctly!  (She tends to push her victims – ahem, her patients – down as she checks their hearts).

She’s gotten taller, has more words, sees more things.  The other day, at Grandma’s, she and I were playing with the bricks and blocks.  When Grandma came down, Sara said, “Would you like to join us?”  She uses all her pleases and thank yous without prompting.  But she is indeed totally exhausted, and needs her naps more than ever before (perhaps this is a result of her growth spurt?  Or perhaps she feels exhausted with all the change!).

Her life has changed, through no cause of her own.  I have always wanted her to learn compassion, develop a servant’s heart, know how to spot a hurting person and help them.  Now she will learn these things not through teaching, but through personal experience.

I walked a mile

I Walked a Mile with Pleasure

I walked a mile with Pleasure;
She chatted all the way;
But left me none the wiser
For all she had to say.

I walked a mile with Sorrow,
And ne’er a word said she;
But, oh! The things I learned from her,
When sorrow walked with me.

-Robert Browning Hamilton

G-Tube Surgery and a lot of tears

Okay, the nurse warned me not to try to be Supermom, but I didn’t listen.  Actually, I didn’t realize how incredibly hard it would be, sending Aliyah off into surgery.  My mom was with me in the afternoon, and I sent her home so I could nap before we headed to the operating room, and just didn’t imagine what it would be like when a porter came to take me and my baby down the long hallway to meet an anesthesiologist.

We sat there, Aliyah cuddled happily in my arms, while the anesthesiologist listed off the risks of sedation and while I imagined my baby’s whole body falling asleep, and then all of the tubes and scopes that they would put down her tiny throat as she slept, and then the incisions in her perfect little tummy.  And I realized, I wanted my mommy.  And I wanted my hubby.  And I wanted not to be leaving Aliyah in the arms of a stranger and walking away from her, alone.

Thank God I knew I was not alone!  “Yea, though I walk through the valley of the shadow” (Psalm 23 something).  Indeed, a dark valley was that one!  And it would not get easier yet.

When Aliyah was returned to me, my parents and my husband sat in the room together with me.  We watched her, dopey as she slowly woke up, smiling at us.  She proceeded to fall back asleep, but alas, that sleep would not last long.  My family left, and at 8pm Baby’s meds were administered through her ng tube (the skinny tube in her nose), and after all of those meds were administered the nurses realized her tube was blocked.  They told me they would return to pull it out and replace it (yet another tube down her throat).  She still slept.

By 9pm, the nurses hadn’t returned, and Aliyah had woken up and was whimpering, oh so pitifully.  The tubes down her throat had taken their toll and she sounded hoarse and pained, and now the meds were hurting her tummy but she had nothing to throw up.  She rolled and moaned and whimpered and tears trickled, a silent stream, down her cheeks as she gagged and coughed for two hours.  The nurses pulled her kinked ng tube out and replaced it while she cried and struggled; they used the IV for anti-nauseant medications and morphine for her pain, and she tried to free her foot from the IV.  I could not be strong enough for her, and cried together with my daughter for how she did not understand what was happening to her and how her mommy could not save her.

Finally, at 11pm, she drifted into an exhausted sleep, as did I, and all was still until 4 in the morning.  Then she woke, again, her tummy taut with gas and pain, and cried for fluid or food – since she had been fasting since Thursday at 1am and it had now been 28 hours since she’d had anything in her mouth.  We were not allowed to give her a bottle – she had fluid enough in her IV – but she was weak, and hungry, and oh-so-thirsty, and begged with two hands for a drink, pointing at every bottle in the room.  She could not understand why I did not answer her.  Then at 6 the white coats came to draw her blood, and she was too weak to do anything but lie still and gaze at them with hurting blue eyes.

Only a few minutes later, the surgical team came and told us she could have fluids at last, and she sucked that bottle greedily, downing nearly a litre of water and pedialyte in less than and hour.  At 8:30, she sunk into sleep again.

My friend R. showed up, then – a woman of God who knows what it is to watch her child suffer, and I was so thankful for her shoulder and her chai tea!  Sometimes, God sends exactly the right angel at exactly the right moment.  My nurse was another one – she swept in with toast, propped up my feet, turned off the lights and closed the curtains, and after I ate, I slept again.

I write this not for sympathy, but to remember.  It is already fading from memory as we head into sweeter times with a happy, energetic little Aliyah, but I don’t want to forget the depths of those moments.  I am among a crowd of millions who have suffered with their children, and there are millions more who will suffer with and for their children in time to come.  I do not want to forget.

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But I DO have a tremendous amount to be so thankful for.  In no particular order:

1. Aliyah.  She is a beautiful angel, a gift from God.  Every day she charms new people with her friendly, cheerful greeting.  Every day she has more energy and is pushing herself around the floor.  She greets me with a smile, cuddles me with love, kisses me with slobbery lips.  She is a treasure.
2. Sara – my first child, the best little big sister, who has persevered in a crazy transition time and still gives me squeezy hugs and lots of love.

It was so great to see Sara get more comfortable with Aliyah's new situation and love on her sister again.

1. The support of friends and family.  SO MANY PEOPLE are praying for Aliyah and for us.  SO MANY PEOPLE have brought food – frozen or otherwise – to sustain us while we are away.  My family has housed Bob and Sara for weeks, feeding them and supporting them.  We are endlessly, endlessly, grateful – beyond words.
2. We are Canadian.  Thank GOD that when we come out of a 2-3 week hospital stay, we will not meet a bill in the mail that forces us to sell our house and go into debt.  I am honored that my taxes gave such freedom to other families in this situation and grateful that the taxes of others now give such freedom from worry to us.
3. Other families who have Cystinosis, who have researched and fundraised and gotten grants for more research to improve care and quality of life for people with this life-changing disease.  A Cystinosis family on facebook who sympathize, offer advice and wisdom, and share stories that are encouraging and helpful.
4. The grace of a God who allowed us to have the psalms – words of despair that help me express pain; words of praise in the midst of fear and heartbreak; words of encouragement to persevere and trust in a God who is there.

Four days after G-tube surgery, Aliyah started to come back to her joyful little self. It was SUCH a relief!