You've Come A Looooong Way Baby!

A few days ago, as I watched my son splash in the summer ocean waves, I found myself reflecting on how far my little man has truely come.

There were days where I never thought we could have the life we have now.  Days where sick dominated our every breath

our every minute of ourt everyday.

Here are some snapshots from the past couple years:

February 2009--the after affects of a masto reaction

March 2009--masto reaction with angiodema

April 2009--4 week hospital stay

May 2009--Happy that teddy has a PICC line too : )

May 2009--Steroid face! : (

He went from frequent ER visits, weekly doctor appointments, and regular hospital stays--

from staying indoors all summer infront of our portable air conditioner because getting to hot meant epinephrine shots--

from months and months of taking dangerous steroids--

from being a hermit in our own house because leaving on a hot summer day meant anaphylactic shock

from getting more epi pens that I can recall because even though we did everytihing "right", he still went into shock

from writhing in pain in the middle of the night without any respite

from throwing up undigested food 26 hours after he ate it.

He spent the first 4 and a half years of his life like that.

We spent the first 4 and a 1/2 years of his life like that.

Though we managed to find a reason to smile together in our love for each other, it was a sad and scary time for us.

Today--{though he still has the same disease, the same triggers, and the exact same potential complications}--he is doing better.

Not because the disease process has improved, but because we have the tools to manage it so much better than we ever have.

It means pushing the limits on medications

and being aggressive with administration

and timing doses with activities

choosing one activity and missing out on others so that he doesn't over do it

it means sitting in a wheelchair instead of taking long walks

it means always being on the ocean shore on hot days with extra medications in hands

it means avoiding most food and only taking in what little is tolerated

it takes all these med doses every single day:

breakfast

lunch

mid-day

dinner

bedtime

but it's all totally worth it.

It's worth every tear, sweat, and effort we have had to put into his care because

he now lives life.

He has friends

He has playdates

He can swim in the ocean and the pool without worrying about a central line getting wet

He can go weeks without having reactions--sometimes even months

we have avoided epi pens for two years

he can play in the ocean and in the pool on a hot day (by the coast) without getting sick

We don't spend every waking moment at the doctor's office

We've only been to the hospital once this year

He lives life with an appreciation that most don't have.

What a blessing it is for him

for us

and I'm so thankful that I recognize it.

It would be easy to pity ourselves and focus on what isn't normal about his normal

it would be simple to get angry at God and say "Why us?"

But then I would miss the blessing

I would miss the gift of life he has been given

And I wouldn't want to give that up for anything.