Everyday life

Wishbone Day 2017

I meant to post on May 6th, which was Wishbone Day, but between soccer games, Saturday projects, play dates, concerts and a mommy/daddy/daughter date with Eve, the opportunity escaped me.  Still, the entire week is OI awareness week, so I figure I’m still on time and can call it a win.

We all wore yellow on Saturday to raise awareness of osteogenesis imperfecta, the genetic bone disorder with which Jack was born.  We are still learning about OI ourselves, and hope to participate more fully in raising awareness and improving the condition of life for the individuals affected by this rare disorder.  Lily wants to become a geneticist and find a cure for OI, so there’s that.

When Jack was diagnosed over a year ago, after suffering a femoral fracture at the tender age of one month, we were pretty clueless as to  what life would look like for our sweet little boy.  The type of OI with which he was diagnosed (Type III/IV) indicated anywhere between dozens and hundred of fractures in a lifetime, moderate to severe bone deformities, short stature, potential hearing loss in early adulthood, 50% chance of brittle teeth, etc.  We weren’t even sure if Jack would ever walk.

To be clear, we have never feared what the future holds for Jack.  Our understanding of the purpose of this life softens the blow of every hardship we encounter and we would go forward in faith no matter how severe Jack’s condition.  Likewise, our understanding of the purpose of this life demands that we recognize and are grateful for every way in which Jack’s condition has exceeded our expectations in terms of severity.  And it has.

So we still don’t know much.  Here’s what we DO know:

  1.  Modern medicine is glorious.  Without the regular infusions Jack has been getting to strengthen his bones, I dare say we would have seen a much higher incidence of fractures.  He’s only had one  in over a year.  As a side note, when we viewed the X-ray of his wrist after his recent fracture, you could see lines across his lower arm bones, much like tree rings, indicating bone growth.  Without pamidronate, the regular course of treatment for young OI kids, Jack’s limbs would be even shorter than they are.
  2. Jack is going to be short.  This comes as no surprise and we are, in fact, grateful that he is even ON the growth charts, albeit hovering in the 3rd percentile.
  3. Jack has dentinogenesis imperfecta, or brittle teeth, which is present in about half of OI patients.  He popped his first tooth at 6 1/2 months, WAY before any of my other kids had, which made me suspicious.  Sure enough, as his teeth have grown in, they have the telltale signs of a dentin deficiency, as they are discolored and somewhat translucent.  His dental care began at age 9 months and will prove to be rather involved.  And expensive.  We still think he has a winning smile.

4.  Jack has met all of his gross motor skill    milestones on schedule and is walking like a champ!  With increased mobility comes risk, so although we are thrilled that his bones are holding up under the weight of his body, we can’t help but cringe every time he tries to scale something.  Nevertheless, I would say he is the most cautious of all my toddlers.  It is apparent that he was blessed with a personality to match his fragile body.  Not foolproof, but to say we are grateful that he is not throwing himself off the top of the backyard slide (or anything else, for that matter) would be an understatement.

Jack is a bright, sensitive, sweet child who has brought a light and joy into our home that cannot be measured.  We are grateful for the concern and support our family and friends continue to demonstrate and look forward to many years of learning from the unbreakable spirit with which Jack has graced our lives.

The isolation of having a special needs child.

When I was pregnant with Jack I looked forward to the day I could join the local mommy workout group at our neighborhood church meetinghouse.  The other kids would be in school all day, I would have some pounds to lose, and we could incorporate it into our routine.  I’m very much a social exerciser-there ain’t no way I’m gonna bust my rear unless there’s someone else counting on me to be there or pushing me to do my best.

Alas, it was not meant to be.  As soon as we found out that Jack had OI, I knew that there was no way I could take him to an exercise group where energetic kids run around largely unsupervised.  It’d be like throwing him to the wolves.  I wasn’t willing to take that chance.

That isn’t the only concession I have made or will make on Jack’s behalf.  Contrary to when my daughters were young, Jack has never had a real play date.  I can’t really do “swaps” because it’s not exactly a fair trade to expect someone to baby my child so that her kid doesn’t inadvertently injure him while just doing what kids do.  The few times I’ve done social stuff during the school day, I simply bring Jack along and watch him like a hawk.  Which inevitably means my so-called social event ends up being pretty light on the social side of things.

I’ve also had to limit the amount of time I spend in my kids’ classes at school, an activity which has a fair amount of social benefits.  Toddlers are not exactly conducive to teaching art lessons so I’m relegated to leaving him with  dear friends with no kids (or really gentle kids)  at home to care for him while I support my older children.  Understandably, I don’t want to put these sweet friends out more than I have to, considering the huge hit to productivity it is to watch my delicate little boy.

I am lucky though.  We are comfortable enough financially that, if we need to spring for a sitter, our pocketbooks can handle it.  Consequently, our regular date nights haven’t suffered too much.  That has been a lifesaver and I realize that many marriages crumble under the strain of having a special needs child.  I suspect not having the time, money, or  energy to invest in maintaining your most important relationship might have something to do with that.

Still, during the daytime it’s just me and Jack and I’ve found it a little more complicated to foster relationships with friends (his AND mine) than it was when my girls were little.  Add to that the fact that all the friends I made at the time are no longer having kids and are knee-deep in teenage/school-age children probs.  Meanwhile, I’m being left in the dust with my lengthy to-do list, afterschool chauffeuring schedule, and a toddler clawing at my legs begging “up”.  The loneliness of it all can eat at a person.

Some of the questions I ask myself are, what am I going to do for preschool?  With my other kids, I ran a mother’s coop where we all took turns teaching.  Is that even possible or will I have to teach more often to compensate for the fact that the other mothers will have to hover over my child more than the others during free play time when she could otherwise just send them out for unstructured play?

Will I even send Jack to public school?  His height, bone fragility and discolored teeth might label him a target and I shudder to think of the possibilities of kids bullying him.

Don’t get me wrong, I LOVE having a baby in the house again(if you can still call Jack that).  I’ll save that topic for another blog post.  And I’ll survive.  I’ll make new friends, revive much of the wonder of having “littles” in the house again.  I’ll just have to go at it a little differently this go around.

Having a special needs child is a game changer, for sure.  While I am grateful for the tools and means with which to deal with this new set of circumstances, the isolation is real.  I have a new perspective and greater compassion for those who find themselves having to navigate a world that is not designed for anyone who does not fit the norm.

Another fracture makes it 4-0 for mom.

Jack broke his arm this week.  Considering the diagnosis we got over a year ago, I count it a huge blessing that he hasn’t had a fracture until now, particularly after some of the spills he’s been taking since becoming mobile.  After all, he doesn’t know he has fragile bones.  It was rather uneventful.  In fact, some of the spills he’s taken up to this point elicited louder gasps and subsequent examination of limbs.  He cried, I held him until he settled, then sent him on his merry way to get into more trouble, as all toddlers should.

Then he tried to use his arm to stand up.  It buckled.  He cried out.  Darn.  The next few hours made it clear that, though he could use his arm for non-weight-bearing movements, it was definitely broken.  Called the pediatric orthopedist under whose care Jack is, made an appointment to see him the next day, confirmed fracture and bam!  Blue cast for three weeks.

Kids are resilient humans.  Within 24 hours, Jack was toddling around like any 15 month old, even trying to climb the ladder to the trampoline.  Yikes.  We have had a lucky 14 months since his last break but it is clear that it will take a few years for Jack’s recognition of his fragility to catch up with his desire for mobility.  Pretty typical of any kid, really.  It makes bubble wrap sounds like a pretty great option, in fact.

Nevertheless, I’m pretty grateful, for a number of reasons:

  1.  I got to see the xrays, which displayed lines across the bones in his wrist, much like tree rings, indicative of the bone growth that each of Jack’s infusions has stimulated.  So thankful for modern medicine.
  2. Jack’s femoral fracture at one month old was such a traumatic experience for me(not to mention, for Jack) that I admit I had residual fear of future breaks lest they resemble the last.  It’s nice to know that some fractures don’t require a frantic rush to the ER and hours of uninterrupted pain and screaming on the part of my sweet baby boy.
  3. Three weeks in a cast is totally doable.
  4. Knowing that a simple fall while trying to climb on my lap resulted in a fracture confirmed to me that our trampoline is going, going, gone as soon as Jack figures out how to climb on it.  I think Tim especially had a false sense of security after 14 months without a fracture and toyed with the idea of keeping it and just strictly enforcing safety rules.  Nope.  There are simply some pleasures in life of which we will have to be deliberate in steering Jack clear.
  5. Before his break, Jack was mostly walking but falling back on his trusty bear crawl if he wanted a little speed.  Now that his arm is forced into a right angle for three weeks, he’s been relegated to walking at all times.  He’s a sturdy little fella on his feet now, presumably building bone strength in those short little legs of his.

 

The light of our lives.

Shortly after Jack got off his first cast at eight weeks old, I strictly enforced tummy time.  Owing to the fact that he’d lost an entire month of gross motor development, I figured he had a lot of catching up to do.  Tim remarked, “You sure are militant about torturing that kid on his belly.  Is it because he’s a boy?”  Ha!  No, it couldn’t possibly be because he was born with a bone disorder and I was desperate to help him build bone strength despite his deficiencies.  Funny Tim.

I do, in fact, find that I force Jack to do things that I wasn’t in a hurry to do with my girls.  I definitely go out of my way to allow him maximum mobility – things like not installing a safety gate for the stairs but instead following him up and down so that he is not stifled in his motor development.  Or, being extra careful to encourage a healthy diet instead of resorting to convenience foods.  Or, severely limiting exposure to screens, at the expense of getting stuff done.  Anyone who has a special needs child can tell you that it’s anything but convenient.  I sort of think that I’m finally bringing my A-game to this parenting thing and I’m embarrassed to admit it took a disability to force me into it.  Don’t get me wrong – I have always been a deliberate parent, but I definitely cut corners in certain ways for the sake of convenience.  I don’t beat myself up about it, but it does make me ponder the long-term effects that my laziness may have had.

In any case, Jack is meeting all of his physical milestones at the same time or before my other kids.  We weren’t even sure if he’d be able to walk, let alone at a time that is on par with others his age!  So understandably, we are incredibly grateful to witness this sweet boy’s unforeseen progress.  We all adore Jack.

 

Magnify those talents.

As a child I think I took a grand total of three years worth of piano lessons.  I started young, but am unsure of how, when or why formal lessons became a thing of the past.  Somehow, I kept playing, despite my inexperience.  I attribute it to my insatiable appetite for singing – and the absence of anyone else in my family capable of accompanying my melodies.  Where there’s a will, there’s a way, though for me, that way involved a whole lot of fudging the bass clef and playing many an errant note.

Somehow I made it to adulthood with those meager lessons tucked under my belt and, aside from playing the keyboard for a few recordings I made with a friend in college, didn’t really develop my piano-playing ability any further.  Then, as many a Mormon missionary in a foreign country can attest, I got to try my hand at every hymn in the book practically every Sunday for 18 months straight because I WAS THE BEST THEY COULD FIND.  (Except for the three months I was being trained because I actually had a companion who could play better than me).  Those poor Taiwanese people.

When I came home, and later got married, Tim and I were fortunate to have a piano loaned to us by his grandmother until we moved to Boise, so I got to fool around on the keys, but again, not to hone my piano skills but to accompany myself singing my favorite tunes.  Still, I considered a piano a fixture in any decent home, so within a year of moving to Boise and purchasing our first home, we found a great little upright on craigslist and have had it ever since.

Those early years of motherhood did not exactly facilitate piano practice.  At the first hint of a note, some lovable toddler would find her way into the living room and bang out her version of Ode to Joy.  At least one of us was joyful.  And it wasn’t as if I were about to take a chance on practicing during naptime at the risk of waking said toddler(s).  Heaven knows I needed that time to last as long as humanly possible.

My wish list always included a whole host of piano songbooks from Broadway to Disney (not so much classical – remember the whole part about only wanting to sing along?), most of which I have now acquired, though they for some time collected dust on the shelf, waiting for a more accommodating time.  The early lesson books I used to teach my littles beginning piano got much more use, as did the piano, now that the toddlers had become grade-schoolers capable of reading music and practicing to their hearts’ content.  Naptime was still sacred so I was relegated to an occasional Sunday evening for a little dabbling in piano fun.

And all of sudden the piano players suddenly moved out of our ward congregation at church.  And the most accomplished one who was left behind was called as the choir director.  I asked her, “Who the heck are you going to get to accompany the choir?”  She gave me a “deer-in-the-headlights” sort of look and mentioned inviting a couple of the youth to do a song or two.  I offered my services, to lighten the load, not realizing at all that I had pretty much just signed up to be the “official” accompanist.

To go from playing painfully imperfect accompaniment for oneself on occasion to accompanying a choir in front of a couple hundred people was a steep learning curve, let me tell you.  I came home from choir practice every Sunday with a massive headache and a fervent commitment to practice every spare moment I could find.  My embarrassment at my inadequacy was palpable, though I plugged through over a year’s worth of accompanying and realized that I had witnessed a miracle.  I played pieces I could never have dreamed of playing because I had committed myself to serve and the Lord made up the difference.  Boy, did He make up the difference.

That was about five years ago.  I still teach my youngest grade-schooler beginning piano, and have passed my older daughters off to experienced teachers.  They will inevitably surpass me in skill, owing to my utter lack of technique.  Still, I am given opportunities to volunteer in my kids’ schools, most recently by accompanying the choir and guess what, I actually LIKE playing the piano.  For the sake of playing the piano, not just so I can sing along.  And I’m not too bad either.

Most recently, I accompanied Lily’s 5th/6th grade choir as they sang on the floor of the Idaho State Senate at the Capitol building.  Then, I played for Anna’s benefit concert, a bunch of songs from Sound of Music and Into the Woods.  I’m learning that nerves will always be part of the package but that perfection is not the goal.  While practice is absolutely vital for one so inexperienced, I know that an errant note or two is not going to make or break the song because I am not the main attraction.  I just have to make the choir(or soloist, as the case may be) sound good by not royally screwing up.

Lastly, I am grateful that I get to use my talents and see them flourish as I use them in selfless ways.  As a young performer, I daresay it was all about the glory.  As an old(er) behind-the-scenes accompanist, I get to enjoy the fruits of giving the glory to someone else.  Which, counterintuitively, is a really great place to be.

Strangely, though this post was pretty much all about me, THIS girl here was amazing. I got compliments about her being everyone’s “favorite” left and right. She was my favorite, too. Anna performed “On the Steps of the Palace” from Into the Woods.

Getting a tour of the Capitol before the performance.

Soaking in the rays while waiting for the bus ride home from the Capitol.

February fun.

 

Sometimes Valentine’s Day is pretty special. Other times, heart-shaped chocolate chip pancakes is about all you can muster.

The seats were comfy, and it was a good thing. The adults mostly slept through the movie. Fun to join Noah for his fifth birthday!

Cousin time

And more cousin time.

The long-awaited Art Night. It might have been one of the busiest weeks of my life. With artwork from all three of my elementary student’s classes to display, early morning practices accompanying the sixth grade choir, and a huge youth fundraiser to pull off the following week, I’m just lucky I didn’t get sick. Eve looks pretty stoked, though!

Joan Miro-esque project by Eve.

 

Marriage-putting off “the natural man”.

I’ve been reading a lot of articles on marriage lately and, all of a sudden, more articles start showing up in my news feeds.  A little creepy, to be honest.

Lately, Tim and I have been taking out our stress on each other more than usual.  Chalk it up to the five kids and their activities and needs, the sleep deprivation having teenagers and toddlers affords and the demands of work and heavy-duty church assignments. There’s no excuse for it, but there’s no shortage of things to which nurturing our marriage sometimes takes a back seat.

Last week we had a full-blown tizzy, ahem, minor disagreement.  As is often the case when Tim and I don’t see eye to eye, I start hunting for any and all marital advice, searching the scriptures, reading counsel from church leaders, and yes, scouring the internet for related content.  Hence the uptick in marriage articles on my newsfeed.

So today I stumbled across an article with this title: Scarlett Johannsen says “marriage a lot of work, monogamy unnatural.”  I clicked on it, despite my usual distaste for celebrity opinion.  It was disappointing, as one would expect, to hear a high-profile individual simultaneously state the obvious and then pooh-pooh the greater good.

Yes, marriage can be a lot of work.  And sure, monogamy is unnatural if you want to lump ourselves in with the rest of the animal kingdom and ignore the fact that we were endowed with complex brains and the ability to make moral decisions.  (Incidentally, several animal species employ monogamy, perhaps with more consistency than humans.)

In any case, why is it that we’re so quick to absolve ourselves of moral character?  Why do we assume that when the going gets tough, the tough get going?  As in going, going, gone.  What makes us think that we should do what comes naturally instead of what is right?

“For the natural man is an enemy to God, and has been from the fall of Adam and will be forever and ever unless he yields to the enticings of the Holy Ghost, and putteth off the natural man, and becometh a saint through the Atonement of Jesus Christ”.

I believe we are so much more than what the world would have us believe.  We are sons and daughters of God, created in His likeness, and endowed with potential to become like Him and inherit all that He has.  And I believe that marriage, with all its “work”and “monogamy”, is the perfect training ground in which to do so.

Everything of value in my life has required work.  What a convoluted view to suggest that marriage would be any different.  Monogamy provides stability and satisfaction to a relationship, and, by extension, to a family.  How ridiculous to think that we can experience any real measure of joy by doing what comes naturally!  What comes naturally to me is sleeping in every day and eating chips and chocolate around the clock but, last I checked, that isn’t exactly a recipe for a life full of meaning.

So eat your heart out, ScarJo, and set that bar low for yourself and humankind.  Me?  I’ll take work and monogamy with a huge helping of joy and happiness on the side.

Twelve.

This girl is a delight.  Just look at that smile!  She’s a quirky one, for sure, asking for baby snacks for her twelfth birthday, jeesh!  Lily has an inner confidence that is astounding – she simply doesn’t care what others think.  She knows she is fantastic through and through.  (This can be problematic in the parenting department because she occasionally doesn’t give a darn about impressing her parents, but I still count it an attribute, nonetheless.)

For Lily’s birthday, she dragged a few of her favorite friends to a movie at the “real” theater.  As in, not the dollar theater… or home theater, as the case usually is for our family.  I even indulged her fancies by springing for soda and popcorn – unheard of.  We then returned for a pizza dinner and Just Dance.  Lily has been blessed with a fantastic circle of friends.  We affectionately refer to them as the Catholic, the Muslim, the Mormon and the Jew, though I’m not entirely sure as to what extent each of these friends’ families practice their religion.  They are four peas in a pod, however, and we love having them in our home.  Almost as much as we love Lily.

Winter Carnival.

We’ve lived in Boise for almost 14 years and finally decided to make the 2 hour trek north for the McCall Winter Carnival.  Grandma and Grandpa were sticking around after the baptism for a few days so we figured, what the heck, more cold and snow won’t kill them.  We selected a Monday to pull the kids out of school and make a day trip out of it.  We thought that would be a safe intro to what is, on the weekends, more aptly described as a “carnival”.  We found the weekday atmosphere to be less crowded, easy-going, and, to be honest, a little underwhelming.  To be sure, there were some pretty phenomenal ice sculptures.  We even rode the ski lift up Brundage mountain to catch the first place winner – an intricate train sculpture which was no less impressive than the scenery at the top of the mountain.  Still, I must need atmosphere for a complete experience.  Trekking around town with the pressing throng, city-wide events, beckoning restaurants…it just isn’t the same without the crowds.  Not that I would know.  Just a hunch.

Playing hooky, however, was pretty darn fun.

Eight is great – take four.

Our baby girl turned eight!  Eve has brought us so much joy in her short life – her tender heart and desire to do what’s right are admirable traits.  She chose to be baptized unflinchingly, with all the innocence of youth, understanding that it meant she was covenanting to follow Jesus, yet not comprehending how difficult that will be at times.  Eve has a strong sense of faith in Jesus Christ that brightens our home and her future.

For her birthday, she chose to invite a few friends to join her at the local ice-skating rink.  A couple of weeks later, family joined us for her baptism.  We kept the celebration going by ringing in the lunar new year with delicious stir-fry, homemade egg rolls, and our traditional nasty food-eating contest.  The adults took the cake this year – with all of them making it to the final round.  Lots of laughs over the faces generated by this year’s selections.  Eric won for the best poker face.  Although I think Grandpa J actually enjoyed most of the offerings.  Strange folk, those Jacksons.