Saturday, October 1, 2011

Three Years Later

My Little Bug will be turning 3 years old in just under a month.  It is when I am facing an occasion that I retrieve and relive those thoughts from 3 years ago, and I just wanted to share the beginnings of our OI journey with you as we prepare to celebrate a special day.  It is intended to be a reflection of how far we have come.

At the routine 18 week ultrasound, the technician was very chatty and animated, announcing happily (after we told him we wanted to know) that it was a boy, and then he got quiet, hardly talking for the rest of the appointment.  Both my husband and I knew something was wrong, but we really had no idea what it could be.  The technician left the room, and a doctor returned to say that our baby's femurs were measuring short, and we were being referred for a Level II ultrasound with a perinatologist (the first of many words now in my vocabulary that I had never heard of at the time).  We had no idea what "short femurs" meant, or why it was so bad.  (We are of a short people...what's the big deal?)  At 19 weeks, sitting with the perinatologist in a private office after a second long ultrasound appointment, we were told that our child had Type II or Type III Osteogenesis Imperfecta.  I had to get her to write those words down.  One of those types (Type II) is considered lethal, the other type (Type III) very severe.  Our baby boy already had broken bones visible on ultrasound.  According to the candid and unemotional data available, our situation did not look promising.

I didn't have a baby shower.  We bought only the basic baby necessities.  We got a crib and glide rocker (both second-hand), and some bookshelves.  I repainted an old dresser.  I purchased two outfits.  We also made sure to have a carseat, though we had no idea if a regular carseat would work in our case.  Some people gave us baby gifts, and others gave us clothes and books that their children had outgrown.  Basically, though, I wanted to have as few things as possible to have to get rid in case I never got to bring this baby home.  We knew from the time that I was 19 weeks pregnant that Little Bug's future was uncertain.  We were told things like "most women in your situation would choose not to continue this pregnancy," and "don't go to heroic measures for this one... you are young and can still have your statistical 2.5 children."  I don't think we were ever specifically counseled that we should terminate, but the suggestion was obviously there.  One doctor spent 15 minutes telling me all the ways that having a child with special needs is difficult, assuming, of course, that the child lived.

(This is one of the few pictures of me pregnant, taken days before we went to the hospital)

As expecting parents, where do you go from there?  In the span of a week, I went from a pregnant lady worrying about normal pregnant lady things to a pregnant lady drowning in the realization that my life would never, ever be the same.  I remember very clearly telling my father, at the time, that I just couldn't imagine ever feeling happy again.  The introduction of OI had cast a shadow over my world.  The only thing that I knew was that I did love this child already.  Very much.  I had no idea how I would manage to take care of something so fragile, so precious, so likely to break.  I didn't know if I was strong enough to deal with the emotional burdens of having a child with special needs.  I seriously doubted that I had enough roar in me to be anyone's advocate.  But I knew I loved this little bug growing inside me. 

And so I prayed.  First, I prayed every day (several times a day, actually) that God would give me and my husband enough strength to make it though the day, just that one day.  While I wanted very much to have the strength to make it through the rest of the pregnancy, birth, infancy, and all the childhood milestones, that future was too foggy and uncertain for me to imagine.  I needed to survive in the present and take each day and the burdens and hopes that I had at that moment in time.  (See Matthew 6:34.  Ah, the wisdom and comfort in the Gospel of Matthew...) 

Second, I prayed that God's will would be done with my baby, and that I have the grace to accept that when the time came.  I got specific with this request.  I prayed that God would let me know as soon as he was born... if Little Bug was going to live, that he be born screaming; but if Little Bug was not meant to be in this world for long, that God take him quickly before he could know too much pain.  If I had otherwise been tear-free, it was at this point that I cried each day during the remainder of my pregnancy.  Every day, I realized anew that both of those ends carried consequences, and at the time, I did not know which would ultimately be better for me, my husband, and our Little Bug.  Doctors had led us to believe that his existence would be a painful one, physically and emotionally.  We were told he might be so fragile that his bones could break coughing.  His lungs and ribs might not be strong enough to breath.  He might always have chronic pain, even when not acutely fractured.  Was it too much to hope that my son's life would not be this way?  Was it less selfish to hope that his life would be very short?

I could expand on all the thoughts, hopes, and fears that dominated my pregnancy for a very long time.  I have only included as much as I have in the event that a woman who has received similar news and is searching the internet with a sad but fervent sense of determination for terms like "skeletal dysplasia" and "shortened femurs" can know for certain she is not alone.  Other than prayers, the best things I did for me and my unborn OI baby were (1) to find doctors who cared about me and my son, and (2) to find other parents that have children with OI.  These two things (undoubtably answers to that first prayer that I was always praying) were the foundation of hope for me.  They did not make the fears go away, but I realized that life touched by OI is still a beautiful life.  I would be happy again.

This was my Little Bug, born October 2008, screaming.  I only saw glimpses of his head full of crazy black hair while an entire team of neonatologists circled him, but I heard his cries and knew he was mine.  This may sound a little sentimental, but I knew (like all moms, I guess, wink-wink), that he would be amazing.


And he is.

I wish I could have had more joy in my pregnancy.  I feel like I was robbed of that feeling during such a transient and precious time in life, the time of growing into the idea of being a parent for the first time.  However, having experienced low moments of despair make the good moments so much sweeter.  It must be magical to see any child take his/her first steps.  It is a whole other plateau of elation (and fear) to see a child with brittle bones who was not likely to live and never supposed to walk take his/her first steps.  Little Bug has already blown me away with how far he was come, and he isn't even 3... yet.  I am so excited to see how far he will go.

Tuesday, August 23, 2011

Public Service Announcement: Staring and/or Pointing Aren't Nice

I was never the center of any stranger's attention until I had Little Bug.  For almost 3 years now, everywhere we go, at least one person (if not five or ten) tells me how adorable my baby is.  "He has the biggest blue eyes!"  This is true.  Well, this is almost true.  He IS adorable, and he does have beautiful blue eyes.  But he is not a baby, only little.  I do not mind this, though, because people are well-intentioned, and I am happy to share my sweet boy.  Sometimes, if people are genuinely interested in him and strike up a conversation (yeah, people do that a lot, actually), then I am willing to share a bit more about him, like that he is almost 3 years, a very good boy, very smart, loves trains, and/or has brittle bones.

Little Bug is a great errand-runner.  He behaves and listens so well in stores (usually) that we go out and about several times a week.  I make it a point to go into stores for small errands to give Little Bug the opportunity to use his walker.  This is good exercise for him and good practice functioning in areas that, while intended to be handicapped accessible, are not always easy to navigate.  Plus, after that nasty humerus fracture (see my June Post), I think it is better to be in the habit of having that walker for extra support.

The attention that Little Bug attracted as a baby (or a child in a shopping cart seat that people assumed was a baby because of his size) is nothing compared to what can only be described as the "spectacle" of us shopping while he uses his walker.  Everybody---and I mean EVERY BODY---takes a moment (or longer) to check us out. 

OK, so I know that it is not common to see a small child using a walker.  I really do get that.  Little Bug is probably the size of the average 9-month old, which is smaller than the average child that is learning to walk.  After some mild to moderate gawking at us, most people smile and tell me how adorable he is, and then they continue on their way.  I am not bothered by this, either. (I mean, geez, he IS adorable.)  Some people ask me questions, and this is fine, too.  While I can't speak for every person or parent of a child with a disability, I think most people are receptive to respectful curiosity.  But it is not polite to stare or point.  I am really surprised by the number of people who are completely unabashed when they are blatantly staring at someone.

I hope it doesn't come across that I am being whiny or preachy.  But yesterday, I just had way too many children stop, back up, point at us, then yell to their mothers in the Target to "look at this baby."  (I think the whole county was there back-to-school shopping, or something.)  I don't generally take it personally when a young child says things like this because I understand that children are naturally interested in people that are different.  If it were only children who acted like this, it would probably not be worth mentioning at all.  But I have seen people stop at stop signs for a full 30 seconds watching us. I have seen people driving come to a full stop (who are not approaching a stop sign) to check us out. Full-grown adults have made it a point to stop, look, and point at my son.  I find it hard to believe that people are being cruel because I really do not believe most people are that mean-spirited.  I think that they just do not understand.  And I have no idea how to make them understand.  All I can say, for the record, is that staring and/or pointing aren't nice.

One day, Little Bug will be older, and I am sure he will find ways to handle these situations.  Undoubtedly, he will handle them better than I do.  (By the way, in the absense of a better solution, I generally just ignore these negative situations entirely.)  One blogger, who is a true sage and fantastic writer, posted this insightful piece about how to handle staring: Perfectly Imperfecta, "As Subtle as Snow in April".  I certainly cannot add anything to her words there.

I have included a short video of Little Bug with his walker.  This way, if you've never seen a little person with a walker, you now get your chance!  And if you see a little person with a walker in the Target some day, it won't seem so strange since you'll have seen it before.  (Plus, this is validation that he really is just adorable, so it is understandable why someone would gawk at the cuteness.)


video

Monday, July 11, 2011

Why Beads?

Why beads?

I don't exactly know what it is about them.  I just love them.  I love the teeniest tiniest seed bead.  I love faceted gemstones.  I love shiny pearls.  I love them all, really.  I've never met a bead that wasn't worth a second look.

My love affair with beads started when I was very young.  I don't remember the official beginning, but I have always horded beads and objects (which I would learn much later in life have a more official name---"findings") to use in constructing jewelry.  I also collected delicate little containers, like mint tins, sample-sized jelly jars, and film canisters, to sort them all out.  My early creative processes mostly involved just tying on a clasp (no doubt something I had scrounged off a decrepit old piece of broken costume jewelry) and stringing seed beads onto dental floss (mmm... mint).  The only bead stores my home town had were what I still refer to as "hippie bead stores."  For some reason, hippies sell really pretty beads, right there with patchouli essential oil, hacky sacks, and tie-dye shirts; I have never understood the cause/effect relationship with hippies and beads, but I appreciate it anyway.

The desire to create something with my hands has always driven me... jewelry, scrapbooking, crafting, etc.  Beads as a creative medium has waxed and waned and waxed and waned through the years.  The motivator (you fellow crafters probably get this):  Inspiration.  And of course, there is the Great Confining Factor (everyone gets this):  Time.  It can be difficult finding the inspiration to make something beautiful and even harder finding the time in which to make it.  And it is rarer still that the two should coincide.

When Little Bug came into my life, the thought occurred to me that I could---somehow!---use beads to raise awareness of OI.  The inspiration.  I began imagining all the ways I could use beads to portray some aspect of OI.  The only problem was that I had a newborn baby, so I could only let my ideas marinate for, oh, 20 months or so because I sure didn't actually have the time to do much with them!  Not all my jewelry is OI-inspired.  As I said before, I really just love beads, and I make all kinds of jewelry.

So, why beads?  After much rambling, I haven't exactly answered that question.  I feel like beads are really the only creative gift I have to give of myself.  My hope is to raise awareness of OI, one bead at a time.  I'm not sure how much of this really makes sense to the audience at large, but I am excited to begin sharing my beads with you!

Wednesday, June 29, 2011

Sigh! Another fracture...

All the best intentions can become very unimportant within just a few moments.

I had intended to write more about Little Bug and a lot about beads over the past few weeks, but life got put on hold after a nasty compound humerus fracture (our worst fracture to date).  That Thursday started out innocently enough.  Little Bug and I had a wonderful morning at home, playing and watching movies.  We had some time before nap, so we went to the library.  Little Bug * loves * the library.  I am so happy that my bug is a tad geeky like me (and his Dada) and loves books.  Of course, he also loves playing with the MegaBlocks at the library; they are much more fun than the exact same set of MegaBlocks we have at home.

Events at the library were without incident until we were checking out our books.  Then he fell.  The whole scene is hazy in my memory.  He was beside me, standing, by the checkout computer, then he was on the ground screaming.  I don't know how many eyes we attracted as I carefully picked him up and rushed him to a lonely corner to assess.  At first, I checked his head, since I saw that bump the floor.  Nothing, no bumps, no redness.  Then I saw his arm.  It looked awful, beyond description really, just hanging there.

That is the moment I kicked into Emergency Mode.  I just acted.  Looking back, emormous waves of gratitude flood me for having read the accounts and learned from the experiences of other OI parents out there.  I administered pain meds, put his arm in a sling, and ace-wrapped it to him as best as I could.  Then I calmly asked the librarian to please hold those books and that bag that I had left strewn across the floor in my haste, and I calmly marched out the door.  I called his orthopedic surgeon and informed them we were on our way.  The actual timing of the events of this paragraph in real life was maybe 3 minutes.  It seemed like forever.

Then there was the real waiting... driving the hour to the doctor...  waiting to be x-rayed...  Little Bug was surprisingly quiet and comfortable.  I was determined to be as calm as he was, but that truly was a test.  I just knew, without seeing the x-rays, that they would be admitting us to the hospital and doing an early morning surgery to fix that arm.  I just knew it.  And sure enough, that is exactly what transpired.

Thursday night---the night following the break and before the surgery---was terrible.  It took awhile to find the right mix of pain medications to keep him comfortable.  There is no feeling so helpless as seeing your child in that much pain.  Thankfully, the surgery the following day went as well as possible.  Is it called "surgery" when the doctor is able to put a wire inside the bone without making one incision?  (We love our orthopedic surgeon!!!) 



One and a half weeks later:  life is finally feeling more normal.  Little Bug's time convalescing is always a challenge.  Despite only having the use of one arm and not really being able to get where he wants to go as fast as he wants to go, his attitude really is amazing.  He's such a star. 

I struggled with writing this blog.  I think the Mommy Guilt really hit me hard this time.  I know it is not exactly my fault that he broke his arm, but there are about 20 things I would do differently to prevent that fracture if I could go back in time (like, No. 1:  Don't go to the library, or No. 2:  Don't let him walk by himself).  Of course, this line of thinking is just a fruitless exercise.  The balance between safety and letting my child explore on his own is very delicate.  Perhaps I should have been making him use his walker.  Maybe I will be better about that in the future.  But shouldn't he get the chance to walk on his own?  Or is that level of independence just too risky right now?  Sigh.