Sunday, November 3, 2013


I am wearing a pair of shoes. Each day I wear them. Each day I wish they'd feel more comfortable and some days, they do. Some days my shoes hurt so badly that I do not think I can take another step. I get funny looks wearing these shoes. I can tell in others eyes that they are glad these are my shoes and not theirs. They never talk about my shoes. To learn how painful my shoes can be might make others uncomfortable. To truly understand these shoes one must walk in them but once you put them on, you can never, ever take them off.

I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some people ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No parent set out to wear these shoes. Yet, because of these shoes I am a stronger person. These shoes have given me the strength to face anything. They have made me who I am.

I am a parent who has children with special needs and I will forever walk in these shoes.


We're home, we're settling in.  I am Wiped. Out.  I don't think I've realized how one edge, how on alert I have been these past many months. 

My dad used to fly rescue aircraft in Alaska.  There was always a team "on alert."  Always.  24/7/365.  'Cause somehow pilots and planes didn't get the message that emergencies needed to be scheduled, and during business hours at that.  Now some people could go their whole assignment (measured in years) without ever being called out while on alert.  My dad though, he seemed to have the magic touch.  It seemed like every time he was on, they called him.  He had to  be ready to go in a moment's notice.  We had to live within a certain time distance from the base and he had so many minutes from the time of his page to be in the air.  (I'm sure that to this day, 30 years later, he and Mom could tell you exactly what that was.) 

Yeah, that's where I've been living.  Except, I don't rotate off, and it's my kid, my flesh and blood.  Not some stranger whose life has crossed mine briefly.  I don't know what it's like to come back from the war zone.  But I imagine I'm not too far off.  And yeah, the PTSD is definitely there.  His pulse/ox is our warning alarm.  And it has alarmed and alarmed and alarmed over the past six months.  And they haven't been false ones.  For the past few days though, it's alarming when the monkey disconnects it.  Silly boy.  Maybe he doesn't want me to get too comfy.  That's okay, I'll take it.

Another measure, we used to use a pediatric regulator on his oxygen tank all the time.  I did carry the regular one, just in case, but it sat, mostly forgotten, in the bottom of his "go bag."  It's telling that the pediatric regulator has been sitting on the table long enough that it's dusty.  See, the difference is, I can fine-tune his oxygen much better with the pediatric one, but it only goes to four liters.  It used to be that gave us plenty of wiggle room.  Not since April.  The regular one goes to eight liters, and I've sometimes needed that. 

But now, the last few days, when he does dip, we're turning him UP to 1.5 or two liters.  Yep, I think I see that royal blue pediatric one making a come back. 

So I'm regrouping, collecting myself, breathing more deeply and calmly myself.  And my shoes, they're feeling better and better each day.

November is Thanksgiving time.  Here's to focusing more on gratitude:

November 1st:  Easy!  I'm grateful we have answers that can be worked with!

November 2nd: I'm grateful to be home, to not have a whole lot on the schedule and to be able to relax.

November 3rd: I'm grateful for my mom.  Today's her birthday, so send her lots of Happy Birthday wishes.  She's amazing, and she even survived six great, but sometimes insanely intense kids, and she still loves us.  (I'm really lucky, both my parents are born in November, so I get to be thankful for each on their special day.  You don't get much better than that.)

When you have worn out your shoes, the strength of the shoe leather has passed into the fiber of your body.   
~Ralph Waldo Emerson

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