You'd Be Surprised

Things continue to go well in my expansion.  We are all so thankful that it has been uneventful.  Really, we are just trying to go about our lives, for the most part, with a few hours on Sunday morning set aside for my injections. 

This gives us a lot of time to reflect.  When it's going smoothly like this, the process of tissue expansion appears to be easy, simple, and routine.  To some extent, that can be true.  But what's the hardest part of all of this?  You'd be surprised.

It would be easy to say that surgery is the hardest part.  It's true, surgery is rough.  It's rough on all of us.  And we will never be happy that I have had to endure so many surgeries, so much trauma, so much pain and emotional distress.  But I would venture to say that's not the hardest part.  Surgery comes, surgery goes.  I heal.  I get over it.  And then I kinda forget about it.

You might expect that wearing my bubbles for 12 weeks is the hardest part.  Nope, that's not it either.  Once I adjust to them, these big jugs just become a part of me.  They certainly don't hinder my activity level!  I run, I jump, I play, I climb... you get the picture.  I even learned to crawl and walk with expanders in last year.  I've just gotten used to them.  It's like they're not even there.  Oh, by the way, check them out after today's fill ---

My back is up to 550cc and my legs both have 255cc

It's true these can be a bit inconvenient.  Mom definitely has a hard time finding clothes that work with these things.  We have to make constant adjustments to the carseat, and have made changes to my bed and changing table too.  But that's all easy to do.

It used to be difficult completing the fills.  I would get so anxious, fearing the pain that lay ahead.  But luckily, the numbing cream works about 99% of the time and I don't really feel much.  So I've gotten over that too, and I've realized the process is no big deal.  So, the weekly, multiple injections are not the hardest part either.

It's not the lengths we go to protect my expanders -- the antibiotics I have to take when I get the slightest glimpse of a cold, the constant doctors appointments, the lotions and creams that get slathered on every day, or even the bandages I have to wear in the extreme Phoenix heat.  It's not the wound dressings we have to do three times a day for six weeks when my skin tears during recovery.  

Nope, it's none of that.
 
What's seems to be the worst is the impact this has had, and continues to have, on our everyday lives.  That part is not as visible as the rest.  Not as understood.  My family, once a group of social movers and shakers, has gone MIA since my surgeries began in December, 2010.  We have to lay low a lot of the time, losing contact with friends and passing on party invitations, playdates, and outings in places that are "too public."  Germs are feared in our lives more than in most peoples, because even the simplest cold could cause a delay of surgery, a missed injection, or even a serious infection that can completely torpedo a round of expansion (which I had the opportunity to experience myself).  When other kids get to go to Toy Town or The Children's Museum or even simply the play structure at McDonald's, I have to stay home.  Or worse, I have to watch my sister in her swimming lessons, standing outside the glass and not understanding why I can't "swim too."  Being excluded and missing out on childhood because something could damage my surgical plan -- that is the hardest part.       

But we manage.  We do this because we need to.  Because it is the right thing to do.  Because we are lucky enough to be able to, and literally have the best doctor in the world to do it.  And most of all, because it will give me a better life.  That, and that alone, makes the process tolerable.  And we will always be grateful for having done it.