Sunday, February 20, 2011


I’ve been feeling the need to post all week, and have actually written no less than three posts, none of which will probably ever be posted.  Thankfully I did not post impulsively and took the time to come back and re-read them….all rather whiney and I am pretty sure none that anyone would have enjoyed reading.  Getting it out served it’s purpose….I vented even if I didn’t share it with anyone.

I want to say we had a “hard” week, however the reality is, we had a “tedious” week.  I am reminded again how much being sick messes with my mood (lovely sinus & ear infection that’s been kicking my butt), and how writing during that time is generally very “blue” and not at all inspired.  All creativity is drained when I feel like crud!!  And let’s face it, when your feeling blue, keeping perspective is harder.

Now, before anyone says anything…, I don’t think I am important enough to worry about whether my posts move someone else.  I know that this is MY place, and if I need to just “get something out”, it’s okay.  I get that I am not expected to be creative (if that’s even a hope) or clever, or meaningful all the time.  I want to try though….and the posts written this week fell well short of that mark.  They contained all kinds of information, some less than stellar feelings, and just blech….WELL short of the mark.

There is another reason though that I have not posted them, and that’s where the perspective comes in. 

I am the first person to tell people that while perspective is awesome, and keeps us from wallowing in the depths of despair, our “worst day” is still our worst day and deserves to be acknowledged as such.  So, if a families worst moment is their child having an ear infection, their emotions about it are as legitimate as any I might have dealing with something most would consider more significant.  Our reactions are predicated on our experiences, and thus, there are issues that I might not even blink at, but hit others very hard.  ALL normal and understandable.  All worthy of our sympathy/empathy and support.

Perspective is also a valuable tool for existing day to day though.  It helps you step outside of yourself and your circumstances, see how much “worse” it could be, and be thankful your plate is “only” a little full to over flowing.  It gives you a measuring stick if you will, that allows you to get back up and continue the good fight.  I cannot imagine living life without perspective.

That perspective has been intense this last week, and truth be told, for the last 6 months or so.

The Mito community, at least the part that communicates regularly, is really rather small.  While there are many more families out there fighting the good fight, I am well aware that most are not involved with the groups I am a part of, or have a blog I can follow and keep up with their journey.  I hate that because I know how much knowing others walking this walk has meant to me, but at the same time get that it’s not for everyone.  The upside to being connected in this way is the support and companionship of others that can “get” our exceptional life…..the downside, if you will, is having a window into the difficult, and often heart wrenching, trials these families are going through.  It provides perspective….sometimes intensely.  It also proves to be incredibly hard sometimes.

Having been in the mito world for ten years I know we go through heart breaking times when too many of our angels are earning their wings.  For reasons I cannot quite explain it tends to come in waves, but even I can see that the last 6 months has been far more heart breaking than ever before.  I know part of it is that I have had the honor of meeting some of these kiddo’s, and it is no doubt the sheer number of kids we have lost or who are fighting for their lives as we speak. 

Please take a moment and do a couple of things for me……hug your babies a little tighter, and pray for these families. 

As I said….our week was tedious but doesn’t come close to qualifying as “hard”.  It included:

Catching up on laundry from Houston (tedious)
An art party (fun)
The elder daughter dealing with intense nausea for 4 days straight, and actually sleeping during the day (never a good sign)
Two hours in the pool for aquatic therapy (good)
The worst sinus headache I have ever had & generally feeling cruddy all week (tedious)
First appointment with the palliative care team (good, but draining)
A trip to the pediatrician for all three (seriously tedious, but needed)
(resulting in)
A nasal swab for the nauseated, exhausted kiddo (in case it was the flu – negative)
A trip to the imaging center for an xray of the boy’s foot (no signs of a break)
A trip to the lab for blood draws on the 2 oldest trouble makers (lots of blood needed, 2 sticks for Madi, 1 for Chance)
A trip to the pharmacy for another antibiotic for the youngest (recurrence of sinus infection)
An increased in Advair for the youngest (wheezing & course breath sounds)
Orders to monitor heart rate on the wheezy sinus infection kid (higher than we wanted to see while at the peds….continuing to be while monitoring, but not bad enough to have to call)
A movie with all but Madison (cool documentary and a momentary sighting of Phil, host of our fave show Amazing Race)
Two hours of massage therapy for the two eldest (good…and I am jealous)
A run to Urgent Care for me (which means I finally gave in to the crud)
Another trip to the pharmacy for an antibiotic for me (no comment)
Three hours for getting to horse back riding therapy, riding, then getting home (well worth the time in the car & the early morning)
Watching the old man get ready for & take off on a bike camping trip (good)
Watching the old man ride down the street towards home (even better)

When all is said and done, not sure this ended up being much better than the others I have written!!!  I am pooped and anxious to start feeling better!!!! Forgive me!!

Hope all have a good week!!!

1 comment:

  1. I love this post. It is so incredibly well written.


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