Saturday, September 7, 2013

Two years ago tomorrow...

...we got on this crazy roller coaster called special needs parenting.

There were three precious hours where we got to get to know our girl before hospitals, blue babies, tubes, wires and air ambulances.  The roller coaster started with a jolt.

It's a tough gig, the whole medically-fragile-special-needs thing.  Don't get me wrong, I know things could be far, far worse.  Each day all of my kids can breathe without equipment to help them, each day that I wake up knowing each of my kids are safe at home, each day my kids can move their own limbs - I am thankful.  But it's still tough.  This past 8 weeks the kids have been passing around a cough that Kaylee picked up when we were at the hospital for a check up.  For most of those 8 weeks I have been deciding between staying at home, seeing the GP or heading in to the hospital.  I have been fiddling with feed rates and drugs and venting.  I have been praying I would make the right call here.  We have fought pneumonia before and kicked its backside well and truly - but each new battle carries new risks and those precious airways I have fought so hard to keep clear for the  past two years, I don't want to risk them by making a wrong call.

I am tired, in every way possible I am tired, and we still have a lifetime to go.

But in the midst of the tired, the hard, the hurt, the sad, the tubes, the wires, the drugs, the feed rates, the risk assessment, the therapies, the doctors, the procedures - there is Christmas.

And hilarious purple hippos

and beautiful new friends

And smiles

and big brothers and sisters (who can never get it together for a good group photo)
and deliciously long eyelashes
and pretty red dresses
and impromptu naps
and trips out bush

and toys to chew

and little sisters to love

It is so much harder than people imagine it to be.  
And it is so much better than people imagine it to be.

Happy birthday Kaylee Grace.

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