Bittersweet!

Bittersweet!

There is no better word to describe today!

Unless you use the word "chance".

Today, is the start of a chance for Emu.  A chance to grow.  A chance to defy one of the ways he was intended to be.  It's such a bittersweet day!  As I look into his eyes, I see a boy who is clueless about what is really going on....a priceless little man, who looks up to me and trusts that I will always do what's best for him.  Always looking out for his best interest, some decisions are a no brainer...other decisions take a little more thought.  This was one of those decisions. 

What parent doesn't look at their children in disbelief of how fast they are growing up.  In the midst of one of the many moments that take my breath away, I've often asked my children "Do you have to grow so fast, can't you just stay little for mommy"?  I think all of us parents have thought that one time or another, but I never really expected that my children wouldn't grow the way they should.

If it weren't for him not outgrowing clothes...I don't think I would really notice that Emu wasn't growing.  Unless maybe he was standing next to a sibling or maybe his younger cousin.  You never really "notice" you own child growing the way you would notice someone else's child who you haven't seen for a while.  A few months can go by and when you see a friends child, you can quickly notice how much they've grown since the last time you saw them.  You just never really can tell how much your own child has grown on a day to day basis.  The same rule applies when they aren't growing.  You just don't really notice. 

Emu is 4 1/2 years old.  This is his third summer wearing the same clothes...he wears a size 18 -24 months.  It's hard to believe this little guy used to be such a chunky monkey when he had just turned 1 year old.  At 2 years old...he stopped growing.  It was discovered at his 3 year check up that he hadn't grown since he was 2, but after being monitored for a year, then undergoing testing/diagnosis...he has finally reached treatment time.  His treatment comes with a hefty pricetag, one that insurance companies do not cover...but we are blessed with a healthcare plan that covers the entire cost of his medication...more than $250 per day.  His own "liquid gold".

We've talked briefly about his special "Superman Stamp" that he'll soon be getting that will make him grow big and strong like Superman!  Somehow, in his own smart little mind...he has figured out that his "stampers" will be needles.  Maybe it was the purchase of the two boxes of bandaids that he got to pick out the other day.  He is really much too smart for his own good, you just can't pull one over on this little guy! 

We went out and got some supplies to make a chart and to decorate his "delivery pen", sharps container and possibly his Medpack too.  Of course there were no Superman stickers to be found, but he happily settled for Spiderman stickers to complete is project.  He eagerly awaited all of his medical supplies to come and when the packages arrived, you would have thought it was Christmas!  As he tore into everything he pulled out the two boxes of needles from the box.  He picks one of them up and says "Oh, these are my needles", as if it was something that did not upset him.  Curious, he wanted to see one, so I opened one so that he could look at it.  They come in a protective cap and the cap will not come off unless the needle is screwed onto his delivery pen, so it was safe to allow him to explore it a bit.  He decided to torment his brothers and sisters, teasing them as if he was going to get them with it.  It was all in good safe fun and it was great to see that he was not afraid of it.  Emu is one lucky little boy who has two awesome big brothers who love him so very much!  Despite the 90 degree tempuratures, they arranged for a special visit from Spiderman and Batman to help him make his chart.

Decorating his sharps container

His medpak containing all of his supplies and his chart

Today, his nurse came and trained me on how to give him his shots and the proper care of his supplies and medication.  When she arrived, he excitedly grabbed his backpack as if this was the moment he had been waiting for...even the nurse was impressed and surprised to see a little boy so anxious and excited!  Just as soon as she got her training supplies out....he took off!  I gave him a few minutes, thinking maybe he ran in search of something to show his nurse.  I decided that I better go see what he was doing...and there he was...on the far corner of the top bunk.  Refusing to come down, I had to send Hawk up to pass him to me...and down the steps I went with a kicking, screaming child.  Now, this is more of what I had expected!  These past few days, I was thinking "wow, my kids never cease to amaze me"...because I couldn't believe how well he seemed to be dealing with everything.  Today, I was thinking "wow, my kids can really fool me"!

So, after one practice round, it was time for the real deal!  I was so nervous of hurting my precious boy...tough love sure does suck!  The nurse was surprised by his strength...but with two of us holding him down...I was able to shoot the little bugger in the thigh.  He didn't cry long and was easily distracted soon after his injection.  He was able to compose himself just in time to dispose of his needle all by himself.  He put his first sticker on his chart then, off he went with his prize from the $1 store that was worth a million bucks to him.  He has already picked out his bandaid for his next shot but, I'm sure this road will get rougher before it gets better.

Emu has been through so much the last 6 months and now, this will be part of his nightly routine.  Someday, he won't remember a time when he didn't have to have a shot everyday and hopefully, someday he will thank me for the difficult choice I had to make to put him through all of this! 

I'm so proud of my little Superhero, he is so brave!