Fall Fun with Nifty Nippers

Well, fall has fallen upon us here in North America’s seasonally uneven northwest, and with it the beginning of preschool and activities and all those fun things.  We’re busy with dance class (Sara is soooo excited), Bible study (with the most amazing children’s program that both my girls love), youth group (mostly my hubby’s opportunity to serve God and the youth of our church, who he so loves, and I get in on it whenever I can), tutoring, etc.  And as the days go on, and I realize that Sara no longer needs nap time and she gets more time with me, I realize how much stuff I could teach  her in these glory days!  And how much time we get together!  Being a stay-at-home mom has its difficult moments, frustrating moments, hilarious moments, and boring moments (yes, those too), but the best part of it is that I get to be part of so many of her teachable moments.

So here I am, dreaming and hoping and planning for homeschooling, when I realize how much I have always dreaded arts-and-crafts.  And how much of teaching little nippers is about arts-and-crafts.  And about how I chose not to be an elementary/primary school teacher largely because of arts and crafts.  And how I seriously cannot even draw a stick person.

Well, with a fairly disgruntled sigh, I decided to start doing some research.  What can we do together these days that is fun, inspiring, and enriching?  Here are my ideas (pictures coming as we accomplish them)…

CRAFTS

A fall tree poster.  Draw a tree outline on a board of paper with black felt marker.  Using fall-coloured construction paper, tissue paper, or actual crumbly leaves (the latter being, probably, the messiest), glue bits of these pieces to the tree (encourage child to remember falling leaves, too!).

Ladybug Margarine Lid 

Materials:

  • CD Rom (or margarine lid)
  • printer
  • glue
  • scissors
  • something to colour with
  • a piece of paper

Instructions:

  • Print out the template of choice.
  • Colour the pieces as appropriate and cut them out.
  • You can cover the CD Rom with a piece of black construction paper if desired.
  • Glue the red wings onto the CD Rom.  You can make them together like he’s sitting or spread apart a bit like he’s flying.
  • Glue the head onto the CD Rom (over top of the wings).
  • Glue on the spots.

Apple Printing

Using an apple cut in half and apple-coloured paint (red, yellow, various light greens), create prints on any kind of palet – white t-shirt, paper bag, paper plate, paper, etc.  You could use carrots, squash, turnips, etc for a fall vegetable/fruit medley!

Leaf Sun Print Mural

Place three colours of construction paper (preferably fall colours like yellow, green, red, brown) taped together one one side on the ground where they will get lots of sun.
On top, place leaves of various types, in clusters or singles.
Use pennies or small stones to hold them in place.
Let them sit for 3-4 hours in the sun (check after one hour to make sure the leaves aren’t curling or blowing away)

Leaf Rubbings

Oh, this was fun!  Find some leaves, place them under thin paper, and use the side of unwrapped crayons to rub on the paper.  Really pretty and easy – Sara loved this!

Fall Fingerprint Tree

Using watercolour paints, paint your child’s arm and hand brown and have them make a print on the paper (as the trunk).  Then they dip their fingers in fall coloured paints and make fingerprint leaves all over the top.  Gorgeous, easy, but kinda messy!

ACTIVITIES

Fall Sorting

Materials: 4 egg cartons, 12 acorns, 12 maple seeds, 12 pine cones, 12 leaves, or other fall objects small container.

Description: Place objects in small container on table. encourage children to sort the objects into the egg cartons.

Pile-Up

The obvious: have kids pile up all the leaves and jump in, slide in, toss, search-for-ladybugs, etc.  (Sara did this with friends for an hour yesterday and couldn’t stop talking about it).

Scavenger Hunt

Make a list (picture list, if you happen to have time – or you could probably find one online) of fall things for the kid(s) to find.  Example of items:

  • Red leaf (or another colour) – make sure it comes off the ground and not from a tree
  • Acorn/nut
  • Pine cone
  • Really tiny/large leaf
  • Piece of smooth bark
  • Piece of rough bark (don’t need to remove these from the trees)
  • Two different types of grass
  • Flower

Sara finding her purple flower on our scavenger hunt

Thanks For Collage

Just got this idea now…so excited to try it.  Sara is an avid photographer, and we are going to go around for the next few days snapping shots of the things she is thankful for.  I’ll try not to guide her too much!  Then, sometime next week (before Thanksgiving) we’ll print the pictures and she’ll make a collage of things she’s thankful for.  This will be fun!!!

I’m sure we will come up with more in the near future.  But the ladybug is tomorrow’s activity, I believe, so we shall see how that one goes!

Do any of you have some fall ideas – particularly for activities (crafts are usually easy to find)?  What have you done with your own “nippers” that has been especially successful?

Precious Moments

Oh, there are those minutes in the day when you catch your breath, tears smart behind your eyes, your heart squeezes so tightly with love that it hurts.  Sometimes those moments are gentle loving moments – between you and your child, between your children, between your child/ren and their so-gorgeous-great-loving-involved daddy (I’m lucky, lucky, lucky!!!).  Sometimes those moments are hilarious – the laughs that are coated in chocolatey sweetness that you hope you will remember for the rest of your life.

I had oodles of those moments today.

  • Sara heading off to her first dance class, her hair in a coiled braid on her head and her eyes twinkling with excitement.

  • Finding Aliyah standing in her crib – from lying down, to sitting up, to standing, all by her sweet, brave little self!!!  (And laughing through the 45 minutes it took her to fall asleep during her nap – 45 minutes in which she sat up, stood up, lay down, stood up, sat down, and couldn’t decide which way was best).
  • Sara twirling in her new ballet body suit and leotard, tripping gaily through the house, learning to (kind of) hop on one foot (more like a little skip, but oh, just so cute).

She was spinning - I just couldn't get a clear shot! (:

  • Aliyah proudly holding onto Mommy with only one hand as she toddled along!  YES!  I have another toddler!!  (And oh NOOOOOO, I have another toddler!!!).

But the best moments were just now, as I crept up to their rooms knowing that they had finally fallen asleep.

Bedtime tends to be a bit of a dream with Ali and a bit of a long, funny, sometimes-frustrating ordeal with Sara.  Aliyah loves books (she is, after all, my daughter) and will happily read through three or four before we lullaby her and lay her down with Mamie (her adored stuffed giraffe), her water bottle (which she cuddles) and her soother.  Then she usually talks herself to sleep.  Tonight, a slightly different story: she fought through the changing-of-the-diaper, butt-scooched her way to the crib, pulled herself up, and said loudly, “BETT!”  Evidently she wanted not to sleep, but to play, because for the next hour, she wandered up and down the crib rails (her mattress is on a slant, so up-and-down is really what I mean), sat up, lay down, stood up…you know, a repeat of nap-time.

Sara, on the other hand, typically has a high-energy kind of bedtime.  We brush her teeth amid giggles and crazy tooth-brushing songs (some of which you know, some of which you will never hear), have several runs to the toilet (usually one such visit is very long, and includes Daddy or Mommy sitting on the edge of the toilet and telling some kind of bedtime story that typically involves a red trailer, don’t ask me why), and cuddle up to read a story (with lots of actions, funny voices, etc).  Then we read a Bible story, pray, sing a song, and close her door “a leetle bit.”  Her first sneak-out is a joke in which we chase her back to bed and close the door.  Then we have to revisit her bedroom several times to change her back into her pajamas (she loves to change by herself).  Sara’s bedtime tonight was fairly typical.  Except for that last step, during which I poked open the door and found her

laying straight as a pencil,
with the white sheet tucked around every square inch of her body, like a mummy.

She did this the other day, too – I realized then (and now) that she was playing hide and seek and I took too long to find her!  Note to self: check on Sara shortly after she falls asleep to ensure she does not suffocate herself (and to enjoy the adorableness of it).  Oh, how I wish I’d thought to take a picture.  Next time.

After checking on Sara, I popped in on Aliyah.  Apparently, she fell asleep mid-routine – that is,

she was in a semi-sitting position but folded in half over Mamie,
face-down on the mattress with her toes tucked up beside her cheeks.

Note to self: check on Aliyah shortly after she falls asleep to ensure she does not wake up unable to ever move again.

Too cute!  I love my babies – and when they are sleeping, among many other precious times, I am reminded of how much.

This week for dinner…

I hate meal planning.  That is all.

It is probably the most dreaded of weekly activities – and therefore it typically isn’t a weekly activity.  Fortunately for me, I have had a freezer-full of delectable home-cooked meals from well-meaning friends and family who have saved my butt a thousand times since Aliyah’s hospitalization.  But now that I’m running out of said home-cooked meals, it is time for me to carry the torch again.

I would rather let it burn out.

But that is an attitude that needs to fly out the window lest I have a horrendous day thinking about all the dinners I have to cook this week!  So, I’m going to post this weeks’ menu – largely so I don’t lose it (I can always check on here again).  Plus, I’m kind of copy-catting my incredible chef-ish friend Beth, whose meal-plan for the week was so inspiring (mine will lack some lustre, since I’m not allowed to go grocery shopping this week – too much food in every pantry/corner/shelf in our house to go through).  But I’m posting suppers only.

Monday

Kitchen Sink Quesidillas

KITCHEN-SINK QUESADILLAS
From: Real Simple magazine
These are really good, and you can cook all your quesadillas at once, which is nice

1 15.5-ounce can black beans, drained
1 11-ounce can corn kernels, drained
3/4 cup salsa, drained
1 8-count package large flour tortillas
1 1/2 cups (6 ounces) shredded Cheddar or Monterey Jack
1 small red onion, thinly sliced
1/3 cup fresh cilantro leaves
1/2 teaspoon kosher salt
1/4 teaspoon black pepper
Juice of 1 to 2 limes
2 tablespoons extra-virgin olive oil
1 head romaine lettuce, sliced 1 inch thick

Heat oven to 400° F. In a medium bowl, combine the beans, corn, and salsa.

Place 4 tortillas on a parchment- or foil-lined baking sheet. Sprinkle with half the cheese. Using a slotted spoon, transfer the black bean mixture on top of the cheese. Sprinkle with the remaining cheese and sandwich with the remaining tortillas. Bake until the cheese has melted, 5 to 7 minutes. Meanwhile, in a large bowl, combine the onion, cilantro, salt, pepper, lime juice, and oil. Add the lettuce and toss.

Transfer the quesadillas to a cutting board. Cut each into 6 wedges. Serve with the salad. Yield: Makes 4 servings.

Tuesday

Taco salad – yet to find the right recipe.

Wednesday

Sara’s request: Home-made macaroni and cheese (I wish I had bacon…hmmm…I may have to find my way to the store yet). (And to be truthful, her request would actually be KD, which I’ve been religiously avoiding for the last few weeks.  She asks for it regularly).

Thursday

Home made chicken fingers and a veggie bake (or other veggie side-dish)

Friday

Pita Pizzas and quinoa salad

Saturday

Frozen chili, buns, a veggie side dish (I’m cheating: I do still have a few frozen meals and I just can’t think of anything else at the moment)

Sunday

I believe my parents have the kids that day – we’ll do some fending for ourselves, probably breakfast for supper or some such thing.  Crepes, French Toast, Omlet, something like that.

 

Hopefully I follow this – it’ll cause much less stress.  And I guess I do have to make a grocery trip yet…rats.

 

To Grow With You

Five-Minute Friday with the Gypsy Mama:

1.Write for 5 minutes flat – no editing, no over thinking, no backtracking.
2. Link back here and invite others to join in.
3. Go a little overboard encouraging the writer who linked up before you. OK, are you ready? Give me your best five minutes on:

Growing

Go.

Grow with me, baby mine.

You are three now.  I remember those first big grins and first crawling steps, first time standing up in your crib and first time sliding down the slide and now your first time on the big girl swing.

You are growing into yourself, becoming the little girl, the big girl, the young woman that you are going to be.

And I am growing with you.

Parenting is so intentional, so stretching, so out-of-reach sometimes.  I see solutions but they are just beyond my grasp; I need a footstool (or a boost from a bigger hand than mine) to get to them.  I have to grow into it.  And it gives growing pains.  You know the kind.  The ones that attack your calves and so you ask mommy for a massage, those ones, but mine are in my head.

I have to grow into patience as I seek to teach you how to control your emotions, you girl, you.  I have to grow into gentleness when my nerves are taut and my eyes are heavy with sleep and you come into the room for the third time in the middle of the night, telling me “Mommy wants to cuddle me?”  I have to grow into wisdom as you ask questions I can’t answer, act in ways I don’t understand, look in directions farther than I can see.

But growing in love seems nearly impossible, though it happens constantly.  How can I love you more?  My love seems to overflow when I watch you, my growing big girl.  But every day it grows, stretches, pours out even more.  How is it possible to have so much love for you and for that love to grow always?  I am amazed.

Sara's first earrings...clothes pins!

Stop.

Am I a monkey? Part 1

Science.  Religion.  Dread enemies (or sleeping with the enemy)?  An unlikely marriage?  In direct opposition or complementary?

Scientists are the new priests of the day, I heard recently on a radio broadcast (or something).  Historically (like, way back pre-Reformation), the Bible was written only in Latin (because that was holier than Hebrew, Greek, and Aramaic, apparently) and priests alone could understand, interpret, and teach it.  Through a priest, the common man learned how best to get to heaven.  It was sort of an ugly situation.

Nowadays, scientists wield the same kind of clout.  That is, we see them as the way to absolute (relative) truth, through facts, observation, hypothesis and inference and proof and theories.  Religious people are viewed by many in the scientific community as blind and voluntarily ignorant at best and evil at worst (there’s irony for you).

In recent months, I’ve been engaging with a respected (atheist) cousin in debate.  Or, to be honest, in discussion – because I cannot say I was entirely certain in what I actually believed anymore.

Brief personal history:

I “asked Jesus into my heart” at about age 5
proceeded to attempt to convert my neighbours’ kids
encountered God through solitary prayer beneath the outside staircase at primary school
met Jesus again in junior high
was baptized
knelt nightly by my bed, devoured Scripture, desired missions
studied at Capernwray Bible School on the shores of Lake Constance, Germany
found challenge to my faith and yet a deeper faith while studying in university in Winnipeg
became a spiritual mentor at a Bible school explored ourselves, our world, and God – in South Africa
proceeded to “work out my salvation,” sometimes with fear and trembling, as I dated, married, began a career, and had babies
And then met Science.

Whew.  Okay, so, enter Cousin.  I already had a few questions about things.  I was eager to explore and felt I was strong enough in my faith, in spite of said questions.

And then, enter Cystinosis.  Now my questions ballooned.  Those few with whom I shared my questions wondered if I was one of those “I always trusted God but now I’m in pain so where is he?” kind of questioners, but I don’t think that was the case: I don’t wonder why us/me/Aliyah, or think it’s unfair, or any of that.  But I started seeing people in the hospital differently, and feeling skeptical about “oh your faith is so strong” comments when I saw people surviving far worse diagnoses with far less faith (there’s question numero uno in my books – still have yet to answer that one).

Over the last few months, I have started picking out library books (and losing them, which is rather costly) to explore some of my questions.  Currently, I have read a biographical account of the marriage of Charles and Emma Darwin (fascinating), selections of Dawkins’ The God Delusion (oh my word, aggressive and antagonistic much), the first three chapters of David Berlinski’s The Devil’s Delusion (which, unfortunately, hasn’t totally impressed me), A Shattered Visage: The Real Face of Atheism (Ravi Zacharias), and Am I a Monkey: Six Big Questions about Evolution (Francisco Ayala), as well as numerous websites that include Dawkins’ responses to the responses to his book and a Biologos website.

For a long time (okay, 3 or 4 months), this exploration has been somewhat emotionally and spiritually devastating.  Everything I read discredited any scientist who was a Christian (as opposed to Christian Scientists), any creationist ideas, any Intelligent Design theorists.  My biggest fears seemed to be becoming somewhat of a reality.

And yet.

The thought of no God is equally unbelievable to me.  No God equals no meaning, no hope, no future, no purpose.  It equals no world where Aliyah can live cystinosis-free.  It equals purposeless Christmases, moral relativism, total aloneness (in the universe and in our individual circumstances because, let’s face it, no one truly walks your journey with you – not even those closest to you).

This incredible conflict makes me feel, and often, like a hypocrite.  I go to church on Sundays and sing praise and worship songs.  I nod when people tell me about their experiences with God.  I teach my children to pray, read them Bible stories and sing them God-songs – in fact, I desperately want them to love God, obey him, pursue an adventurous life with him, find their solid foundation in him.

Anyway, to the point.   I was browsing (and I mean, really barely skimming) titles in the shelf – actually, only looking at the covers that actually faced me – as I looked for a Stephen Hawkings biography in the science section.  My eyes grazed over the skinniest, oldest-looking little book binding on the shelf as I headed away from that section.  A little voice (imagine that) urged me to return, and so I did and pulled Am I A Monkey off the shelf.  Francisco Ayala, an eminent scientist, prolific scientific author, and Templeton Prize winner, wrote this in 2010 to address basic questions about evolution – including chapter 6: Can One Believe in Evolution and God?.  (Because, by now, I could not deny evolution, especially in light of my new understanding of it).

The passage that “got me”:

Science is a way of knowing, but it is not the only way.  Knowledge also derives from other sources.  Common experience, imaginative literature, art, and history provide valid knowledge about the world, and so do revelation and religion for people of faith.  The significance of the world and human life, as well as matters concerning moral or religious values, transcend science.  Yet these matters are important; for most of us, they are at least as important as scientific knowledge per se (Ayala, 74).

He said a lot more than that.  He explained evolution (no, evolution does not say we came from monkeys but rather from a common ancestor) and discussed, of all things, its compatibility with a deity (specifically the Christian God).  I do realize that a lot of writing has been done about how evolution is incompatible with the need for salvation, among many other things, and I haven’t read those things at length (I do intend to some day in the near future, hopefully), but Ayala’s arguments were very compelling.

With all of those things said (and really, it’s only barely touching all of my thinking and reading on the topic), I have come to agree with the above quote, that science does not address all of the questions we have, and therefore Something else is needed for the discussion.  We have questions not just of origins but also of meaning and purpose – the why are we here anyway question that, if it has indeed pervaded so much of historical philosophical thought, must indeed be a valid question.  Science that denies the purpose of faith/spirituality/religion is equally as ignorant and arrogant as the faith that ignores the findings of science.

There is so much to say on this subject.  I am still so incredibly ignorant of all of the thinking out there.  But I am so hopeful that we are not alone in the universe, that there is a purpose beyond just daily life, and that we have a future beyond this desperately painful and endlessly beautiful earth on which we dwell together.

More another day.  If you read this, kudos to you, I’m sure it was confusing and unresolved, much like our lives often are.  Bear with me.  As a friend says,  “I am but dirt – and sometimes I do (say) something good.”  Hopefully there was something good in here.

Confessions of a (sometimes) wannabee homeschooling mom…

In my previous life, I was a teacher.  That is, I stood in front of 30 pairs of eager eyes that shone with the desire to learn, and imparted my vast amounts of English literary/grammatical wisdom upon their motivated teenage brains (somewhat a biased version of my past, perhaps…).  I have a somewhat ridiculous love of education – and I don’t mean the sitting-in-class-listening-to-someone-lecture-you-while-you-feign-interest kind of education, but the life-is-learning-let-me-help-you-explore kind of education.  That’s why I still love tutoring so much, maybe.

With that in mind, I suppose it wasn’t too much of a shock when I went from completely denying I’d ever homeschool (Bob’s always asked why I was so against it and actually was shocked when I changed my mind) to saying I’d definitely consider it.  And then became profoundly enthused by it and started gobbling up the homeschooling literature (this tends to be my pattern: totally against something, re-read and hear about it, and jump trains loudly and enthusiastically).  But that’s a story for another day.

So today I baby-sat another little girl, age 19 months, which by the way makes for a very full and entertaining and hair-raising day when combined with a 15-month-old and a three-year-old.  We headed toward a school playground near our house in the morning.  As the older two girls scampered through the open field under wide blue skies toward the very-busy playground, the bell rang, and all the primary school kids ran hollering to the doors where they lined up for class.  And I was reminded how much I love love school (geek).  Especially in fall!  I love the excitement of backpacks and class lists and school supplies.  I love watching children walk in small clusters to school, hearing their lively voices, thrilling them with the excitement of what’s to come that year (in elementary school it is thrilling).  I love the buzz of classrooms as kids work on projects, laugh together, get something at last.  I love leaving the school on warmly golden autumn afternoons.  Can I steal that from my kids?  (I know the lists of positives about homeschooling – again, another day – but this does seem like a big loss for them).

Anyway, the schoolyard emptied and my three little ones and I romped over the bridges and slid screaming down the twisty slide until the preschool kids from the community school toddled out, holding onto a long blue rope.  It would have been Sara’s preschool class, actually, but we took her out in favour of dance class (plus we go to Bible Study Fellowship once a week, and the kids’ program is very much like preschool but with a God-focus, imagine that).  And again my heart had a twinge of ahhh longing, as I watched the cute 3-year-olds climbing on the play structure with all their little friends, hanging onto their teacher’s hand, and heard the teacher explain that next was circle time and then was snack time.  Oh, the joys.

And then, wonder of wonders (and kind of annoying wonder at that), I got the phone call.  The one I looked for all last winter while I was trying to figure out what I wanted to do this fall.  That’s right – I was offered a teaching job-share position at my old school.  With a friend, whose teaching I greatly admire and appreciate.  A gem of a job-share (if the teaching assignment is good).  (Let’s be honest, most job-shares are incredible opportunities to work part-time, no weekends, good benefits and salary, and summers/holidays off.  Teaching is awesome that way).

Oh, man.  Oh, it hurts.  Can I say I really want to do it?  And can I say I still really want to be at home with my kidlets and, in the future, homeschool?

Good thing this is months before I have to make any decision, because seriously, I have no idea at this moment what to do.

In celebration of chub: an Aliyah update

It has now been nearly three and a half months since Aliyah’s diagnosis, and life has certainly changed for our family!  Our little munchkin has gone from frighteningly tiny and lethargic to a still-tiny-but-not-scary-tiny bundle of ridiculous, non-stop energy and laughter.  Here’s the update.

The food update

Some have told me that a baby/toddler will never starve himself, no matter how little he seems to eat.  In Ali’s case, that does not ring true as many cystinosis kids have a really hard time eating.  To this day, I’m not quite sure why: is it cystagon that suppresses the appetite, or cystinosis itself?  Not sure.  Regardless, one of our earliest concerns about her was how incredibly little she would eat at any given meal.

That concern continued for a long time.  Many families whose cystinosis children have g-tubes have been really concerned that their baby will not take food orally.  For the last three months, we have laid off oral feedings with Ali, choosing instead to hope that she’ll gain weight through tube feedings.  We would still sit her at the table with food, but her preference by far was to toss it over her high chair rather than put it in her mouth.

Well, in recent days, that has begun to change.  She has definite favourite foods now: spaghetti, carrot sticks (to suck and slobber on and then try to feed to mommy – gross!), yogurt (vanilla only – just like her sister), cheerios, peaches.  At supper time she practically falls out of my arms to get to the food!  She also loves to drink her formula – through her syringe.  Sometimes she’ll drink half the dose!

Bottom's up!

Certainly, she does not eat enough to sustain herself, and still gets the full tube feedings while we attempt to grow into the growth chart, but it is a definite improvement and encouragement.  People often ask if she’s allowed to eat through her mouth.  Heck yes, and anything she darn well pleases!

The Growth Chart Update

That said, I guess chub is a strong word for our tiny little Ali, but truly, she has gained about 1/4 of her birth weight in 3 months!  When we were admitted to the hospital two weeks before Aliyah’s 1st birthday, she weighed 11 lbs – barely more than some babies’ birth weight!  At her 1 year check-up (3 months late), the scale shouted 16.5 lbs!  And counting!  Every gram brings her that much closer to that beautiful day when she can face forward in the van. (:

The Cystine and Electrolyte Update (**and, to me, the most important of the updates**)

Almost three weeks ago, Aliyah had her 3-month cystine appointment, the time when her blood is tested for cystine levels in her body.  The first test on June 3 revealed her levels at 3.8 – when they should be well below 1.  Today, the pharmacist called to let me know Ali’s white blood cell cystine count is now 0.7!!!  A phenomenal drop – but not quite the target level of 0.4, so now our cystagon levels are on the rise again.  Apparently it’s due, in part, to the speed with which little Ali is gaining weight.  No complaints here!

Our doctor decreased two of her supplements, charted her in the 3rd percentile for height and weight, commented on her incredible astounding vocabulary.  (She has several dozen words that she uses on a regular basis.  They include whale, book, puppy, bubbles, bath, more, thank-you, and various animal sounds).

The Motor Development Update

Two weeks ago, our home care nurse visited, bringing with her a visitor – a physiotherapist to look into Aliyah’s lack of mobility.  Now fifteen months old, Aliyah still had not rolled from lying down to a sitting position, nor did she crawl (a source of frustration to me; she just grins and lets Sara bring her everything she wants, the little queenie).  Within two days of encouraging particular movements, she has, today and for the first time, sat up by herself!  (<– Note: that was last week, now).  While camping last weekend, Aliyah discovered transitioning from sitting to standing, but didn’t seem interested in continuing the exercise until today, when her bath consisted of up-and-down, up-and-down from bum to feet, with a lot of happy and proud giggles.  One of the most fun things I hear these days is, from Sara, “Yay!  You did it, Ali!”  and an echoing, “Yay!” from Aliyah when she accomplishes such a feat (she loves cheering for herself and does it quite regularly).  Now, she is beginning to scooch on her bum from one place to the next, and has started pulling herself up on any piece of furniture nearby.  This is SUCH a joy – and now we have to baby-proof the house again!

It’s not all easy.  Some days I miss her flat, perfect tummy – with no tube in it.  Her hair and skin and breath has started to release the faint chemically sweet odor of cystamine – and I miss that fresh baby smell.  She still throws up on a fairly regular basis (particularly if she bonks her head pretty hard).  Bob and I look forward to a break in the night-routine, and know that Aliyah won’t get that.  I wish, sometimes so deeply that it hurts, that she did not have this horrible disease.

But she is growing – she is happy – she is a fighter and a cheerleader and a laugher and a breath-takingly wonderful baby girl.  We are so thankful for her, and so proud of her.

We named her Aliyah, which means “to ascend” in Hebrew.  Our prayer is, indeed, that she rises high above her condition and lives life triumphant, joyful, and free.

Her next appointment is the eye appointment next week – and then in November another cystine check.  And so the routine carries on.

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