Sunday, February 19, 2012

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 blogs daily over at Connor's Song.


  1. You know how on an airplane they tell you to put the oxygen mask on yourself *before* you put it on your child? I like to think of it that way. You can't be the best parent/spouse if you're slowly suffocating.
    I just wish it were easier to find the time! I hope things ease up on you (and Connor) a bit.

  2. I'm sorry things are so hard. It doesn't help when the weather has been off kilter too. Many of us here know that.
    Going along with the comment above, you do need to take care of yourself first. A few of us started a new project on Facebook called The Oxygen Mask Project ( just for remind tired and weary parents to take a moment to breathe on their own so we can help our families. Before we break. I hope you check it out if you're on Facebook. Or read the new blog that we have going at
    Wishing love and strength.

  3. 2 – الابتعاد عن قطع العفش المتكلفة و التى تحتوى الكثير من الخامات المعرضة للكسر مثل الزجاج و الصدف ؛ تَستطيع اختيار الثريات و النجف من مواد عملية أكثر و فى حال كانت لديك أغراض من الزجاج أو الكريستال يلزم معاملتها على نحو خاص و اهتمام طبيعة المادة الصانعة منها عن طريق خطوات مدروسة .
    شركة نقل عفش
    شركة نقل عفش من الرياض الى الدمام
    شركة نقل اثاث من الرياض الى الدمام
    شركة نقل عفش بالقطيف