Walking The Tightrope

It's always something, isn't it?

The last three months have been kind of crazy around here.  Since November, Connor has had strep throat, RSV, double pink eye, a yeast infection around his g-tube, three GI bugs, impetigo caused by strep and staph and had nasty allergic reactions to sulfa drugs and to surgical tape.  Last month I didn't blog because of the freak snow and ice storm we had here in the Pacific Northwest that knocked out our power and Internet access for a while.  Now we're monitoring Connor's kidney, which is starting to show evidence of some wear and tear.  The nephrologist thinks it might be due to one of the little guy's seizure meds, which of course is the one that stopped him from having seizures that require me to do mouth-to-mouth on him.

It's always something, isn't it?

Here's the deal.  Even though the past three months have been rough even by our standards, I figure that it's always going to be something.  Managing the care of a child like Connor is like juggling while trying walk a tight rope strung between two buildings-- everything I do affects everything else, and I have to constantly readjust to find the best combination of therapies, medication, interventions and rest to keep Connor moving forward without tipping him over one side or the other. 

So yeah, always something.  How much I have in reserve to handle the issues and keep things going the way they need to go ends up being the main issue I'm struggling with right now.

I have to do my very best to find my own balance-- to recognize when I need to add some rest, time with close friends, or maybe a bit of pampering so that I can continue to do what I need to on a daily basis.  And after the past three months, I absolutely need all three of those things right now.  I'm starting to lose my patience more easily and I'm getting snappy with Jer-- warning signs that I need to take some time for myself or I'm going to start dropping balls not just with Connor, but with other aspects of my life as well.  It's a lot harder for me to keep the house running well or to make all those phone calls to the insurance company when all I have the energy to do is sit in a chair and stare at the wall for a while.

It took me a while to figure out those signs when I first started parenting the little guy, but I've learned the hard way to listen to myself and to stop feeling guilty about taking some me time every once in a while.

So I'll take a step back, let our respite care worker juggle the load for a day or so, and spend some time finding my feet again.  Then I can return to giving Connor the attention he needs and deserves.

~Jess

 

Jess blogs daily over at Connor's Song.