On Motherhood

The world is full of tall people.  The world is full of short people.  I am one of those.  I don’t mind being short.  I’ve never known anything different.  For those who aren’t short, there are many wonderful advantages to shortness...high heels; tall men; short men who aren’t too short.  Short often is related to ‘cute’ and you usually can get discounts on things because of your ‘age’.  The last one is when you’re younger, but it still applies in the ‘reasons short ain’t bad’ list.  

The world is full of men.  The world is full of women.  I am a woman.  For whatever reason, the world is more accepting of a short woman than a short man.  Randy Newman wrote the song “Short People” and honestly, it should have been “Short Men” when thinking about how the world perceives a man of challenged height.   

I have three short children.  One of them happens to be a handsome, lovely and entertainly con-artist-like, six year old boy.  In the beginning, he was a fat and happy baby weighing in at nearly eight pounds.  Delivered by C-section two weeks late, he likely would have been smaller had he plopped out on time, but apparently he wasn’t done with the baking process.  I however, was done.  The excitement of his arrival was description less.  No words could tell you how I felt, though each mother out there might have a handle on those emotions.  I became a Pitbull/Rotweiler mix. It’s a mother thing. 

I had no worries about this child other than the normal “Will he get abducted?  Will he have a terrible illness?  Will he pass-on before me?  Will he have a drug problem?  Will he be a total criminal?  Will he fall off the bed and crack his head open?” You know the drill.  I still have all of those worries and likely will until the day I die.  Except maybe I won’t worry so much about him falling off the bed then.  Hopefully he’ll have that whole staying on the bed thing down by the time I kick the bucket!   What I didn’t realize, was the monstrous amount of other worries that I would tackle.   

My son has led a charmed life.  I am completely aware that there are children out there who suffer greater problems, illnesses and terrible circumstances far, far worse than what my son has had to endure for the six years he’s lived.  I get that.  I appreciate that God has given me a miracle and blessed me with the ability to raise him as I’ve been able.  I am not selfish or heartless or uncaring.  I feel for each and every one of the children in our world who suffer at the hands of fate or whatever circumstance has brought them to the life they have.  If I could change that, I most certainly would.  I do my best to support the causes and charities I feel closest to and I involve my family in fundraisers and such to help our children.  I do my best to be thankful daily for what I have.  But I want my son to be tall.  You may laugh at that.  I know it sounds silly.  But I want my son to be tall.   

My son has grown approximately three inches in the past three years.  The average child grows that in one year.  He is the size of a three year old.  A first grader, he still wears toddler sized clothing.  His choices are often Elmo, Bob the Builder or Winnie the Pooh.  For what it’s worth, these are the most ‘un-cool’ things a first grader can possibly wear!  Imagine how that makes him feel.  Thankfully ‘big’ is in and I am able to buy him bigger clothes that he finds creative ways to wear and still feel cool.  Me, I feel like a failure.  How hard can it be to create a tall child? Heck, I’d even shoot for ‘average’ at this point.  But the size of a child half his age? That’s a tough one to handle.  

After years and years of doctors appointments, specialists and tests, we finally figured out that my son suffers from a growth hormone deficiency.  We’ve not been able to determine specifically what the cause of this deficiency is, so it’s been labeled “ISS”. To me, ISS stands for “Inexplicably Short Shit” but medically speaking it means “Idiopathic Short Stature”.   

The Minnesota Department of Health defined ISS in their February, 2000 Executive Summary as “Inadequate production of growth hormone (GH) results in short stature, defined as a height for a given age that is two or more standard deviations below normal. Children with short stature may have classic GH deficiency or an underproduction or insensitivity to normal levels of GH caused by pathologies such as Turner's syndrome or renal insufficiency. Idiopathic short stature (ISS) results when children are short, compared to others in their age cohort, for unknown or hereditary reasons. There are an estimated one million children with ISS and 24,000 with medically defined short stature in the United States. Recombinant human growth hormone (rhGH) was first produced in 1985 and is now available in potentially unlimited amounts. This report evaluates the use of rhGH for children with ISS.”    Yup.  That about sums it up. 

We’ve gone through countless tests to try and determine what is happening inside my son.  Actually, he’s gone through numerous tests. I’ve just sat there in emotional turmoil offering no true “Mommy Magic” to make all the pain and suffering go away.  In the beginning he only had to be measured four times a year, just to track his growth.  Once it was determined that the growth was irregular and often non-existent, the first test was scheduled.  This was easy.  He simply had to have an x-ray of his hand to determine ‘bone growth’.  Apparently your bones are measured in age just as your ‘self’ is measured in age.  If you’re a child and you’re short, the desired result is that your bones are younger than your birth age.  This means you’re simply a slow grower and they will catch up.  If they’re the same age as the rest of you, then you’re on track for however tall God’s chosen your body to be.  Justin’s bones were right are target with his birth age to land him at about four feet nine inches when he finished puberty.  Yes, you just read four feet nine inches.  That’s a whopping total of 57 inches.  The size of the average eighth grader. 

My heart crashed to the ground and broke into pieces with that news.  Why?  I couldn’t figure out why he was so short.  Sure, I’m a whopping five feet two inches and my husband is an average five feet eight inches, but we have siblings who are over six feet so it should have balanced out.  Right? That’s what ‘they’ say...whomever they are. And apparently for children with normal growth hormones, it does.

The second test was a lot more fun than the first.  We had to get up way too early for either of us and drive downtown sans breakfast, snacks, water, anything in our stomachs.  (I did it with him in a support/might as well try to diet effort).  For three long, agonizing hours my son sat with an IV in his arm and had blood drawn every 10 minutes.  This all to determine how much growth hormone he actually made.   I’m sure I don’t have to describe how agonizing it was for both of us to have that IV put into his arm.  And don’t ask about the sitting still in a cold medical chair for three hours.

After all is said and done, my little guy produces only 65 units (what type of units exactly, I’m not sure. Could be milligrams, could be something else entirely) of growth hormone nightly.  The average child produces a whopping 268.

Whoa. Now we know why he’s not growing.  Let’s just figure out why he’s not producing the growth hormone! On to the next test.

An MRI.  Ever had one of those? Stuck in a tube with loud, roaring machines banging all around your ears for 20 minutes, unable to move.  So much fun for a six year old!  Here came the next IV.  Unfortunately, due to the intense freak-out session from the previous one, which has I’m sure scarred my son for life, he just couldn’t muster the strength and courage to do another one. I imagined days and days of trying to get him to sit still.  As ever, he continued to amaze me again and lay down in that tube, noise and all, watching a video through a mirror, for 20 minutes and didn’t move without getting the IV to give him medicine to knock him out. 

Thank you God.

The MRI lets us know if there is anything wrong with his Pituitary Gland, which apparently is the top producer of growth hormones. Clean as a whistle. Hmmm....

Needless to say, we fought the fight and lost.  All tests and all measurements showed my little guy was just not going to grow on his own.  Time for the chemically created growth hormone. 

For those who don’t know, this chemical hormone Nutropin, is not cheap.  And it’s not typically covered by insurance.  Apparently there are a lot of parents out there who want their children to be tall for sports and thus have abused the system.  To be accepted by your carrier for this medicine (if it’s even covered in the first place) requires the crossing of many T’s and the dotting of even more I’s.  Three months after applying for the meds, we found out our acceptance status and cost. 

My kids don’t need to eat, do they?

I hope my son ends up with a scholarship because he’s going to be taking this medicine every day for the next 12 years.  Literally.  Most kids are lucky, it’s just used to stimulate the production of their own growth hormone and after a year or two, they’re off.  My son, the lucky guy, doesn’t produce enough on his own and unless by some miracle, will have to continue on this until he’s done with puberty.

By the way, ‘this’ is a shot a night.  After two weeks, he’s finally gotten used to the shot and it’s not taking an hour to get him to allow me to give it to him.  Not of course, without any screw ups by the “mother of the year”.

At first, Justin cried like he’d been beaten beyond repair each time I even got the ‘pen’ ready.

(This is the ever so innocent looking pen.  The little hole you see up here...(look up now )...
that’s where the needle comes out.  You have to push down on his skin with it while at
the same time, press the black button on the opposite end.  That’s what makes the
 needle come out and puncture the skin, making my son scream bloody murder.

After about a week, I knew for certain I was screwing up. He’d stopped crying and when I asked if he felt it, he’d smile and say yes.  Smile like a little con-artist.  I thought he was scamming me so I wouldn’t have to do it again.   I read and re-read the directions and did it over and over again (going through dollars and dollars of needed medicine in the process).  Read what I wrote again.  “...and did it over and over again...”  Do you realize what that means?  I had to give my poor son this shot repeatedly to make sure I was doing it right.  Little did I know he was stronger than I thought and while the needle was actually going in (I thought it wasn’t) he just wasn’t feeling it after a few days and THAT’S the reason he didn’t cry. Not because I didn’t do it right, but because it didn’t hurt anymore.  How’d I figure it out?  Like any other good mother would.  

I shot my husband in the arm with the gun. 

When he flinched and said, “It’s working!”  I knew I wasn’t being conned. 

Now we have ‘fun’ when he takes his medicine. We’ve got a routine.  He says he loves me. I tell him to drop his pants so I can shoot him in the butt!  He calls it a ‘gun’ and it must be done in his backside, triceps or quads.  I like the butt best only because he’s got the cutest, most tightest little cheeks around!  Then he says “Wait, I want to tell you something.” And tells me how much he loves me again.  It makes me cry just thinking about it.  I’ve explained over and over how much I don’t want to do this but I have to and eventually he’ll notice a change.  His feet will start to grow and one day he’ll say, “Mom, my toes hurt.,” because they’re touching the tops of his shoes.  Later that day, he excitedly told me his toes hurt and were growing.  Unfortunately, it takes about three months for anything to happen, so we’ve got about two and ½ months to go!

Justin will never be tall.  Best guess estimate is that he’ll end up his dad’s height. I’m okay with that.  Society will be okay with that.  It’s been researched and ‘short’ men (under five feet five inches) have a harder time getting promoted at work, make less money than ‘tall’ men and divorce more often.  Society sucks in my book and I hate that I have to bow down to what’s socially acceptable, but when I consider my son’s emotional well being, it’s a decision well made. 

Do I have to say how much fun I had giving my husband that shot?  Too bad it was in the arm and not in his cute, tight little butt cheek! 



More From Carolyn