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.