OI

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 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.

 

Your kid has an incurable disease, now what?

osteogenesis imperfecta

In January, when we discovered that Jack had Osteogenesis Imperfecta, it was nothing short of traumatic.  Just a month earlier, I had gone through unmedicated labor for the fourth time.  I was much older than the last time I’d done that and frankly, it was miserable.  I’d spent a day in the hospital, trying to keep it together as I sent my baby off for a circumcision for the very first time and again when we discovered that Jack’s legs were unmistakably bowed and his left arm not moving properly.

For such a time as this.

Hindsight is truly 20/20.  Usually that expression is used to denote a bit of regret at decisions that perspective would have prevented.  Today, for me, it is an expression of gratitude at all the experiences I have had that have prepared me for what I am going through right now.  We cannot understand the full effect of life’s experiences until we can look back on them and their influence on today’s.

Four years ago, when Tim and I decided we wanted to have another baby, we fully expected to get pregnant within a couple of months as I had with my four girls.  Miscarriage was not even on our radar.  Our expectations completely shifted after 9 months of menstrual cycle after menstrual cycle and then 5 miscarriages within a 2 1/2 year period.  

Just like that, our lives changed forever.

Less than a week ago I was gearing up for a return to “normal”.  Less than a week ago the biggest challenge in my life was the grief I was suffering from not being able to breastfeed.  Now that seems like chump change.  I don’t mean to minimize breastfeeding struggles, they send me plummeting into the depths of postpartum depression – read more here about how I feel when breastfeeding doesn’t work out.  Still, breastfeeding issues seem trivial in comparison to the happenings of recent days in our family..

This past Sunday I returned to church for the first time since Jack entered the world.  He was exactly a month old, I had missed attending with my family, I was geared up to teach a lesson in Young Women.