"I should not talk so much about myself if there were any body else whom I knew as well."
-Henry David Thoreau

Wednesday, August 14, 2013


I have the opportunity to sit down and post again because Alex is having a better afternoon than she did morning.  Thanks be to God. 

Last night I checked on Alex before I went to bed and she was completely dry.  This morning when she woke she was completely soaked.  I’m talking, strip the child to the nude and taker her straight to the shower soaked.  It is particularly difficult to bath her first thing in the morning because I’m dealing with a stiff & writhing body that has had no medication for 12 hours.  Since the last few days have been so difficult, morning showers have proven even more  challenging.  From the bed to the shower to the living room… dress Alex, strip her bed (sometimes even the bed mats can’t protect the bed) and then immediately give her first feeding.  In the past I’ve given her 20 or 30 minutes to wake up before the first feeding, but for the last week or so it has been essential to get her medicated ASAP.  This morning I did something a little different.  I didn’t change any of her medications, I just altered when I gave them.  I think giving these two particular medications together first thing in the morning helped Alex to feel more comfortable more quickly.  The intensity of the morning discomfort didn’t last quite a long and the rest of the day has been tolerable.  She did therapy with Heidi this afternoon and had lots to say with her computer.  Heck, right now she is laying on her blanket in the floor laughing at the television.  That’s a beautiful sound. 

As for me, I’m feeling better this afternoon, also… not quite so frazzled.  After a quick stop at the pharmacy, I went to the gym and got in a good jog/walk during Alex’s therapy.  That’s twice this week already and I’m anticipating going again tomorrow if all goes as planned.  It’s been slow going, but I’m still gaining miles for the year.  I’m at 122.7 miles for 2013.  Today is August 14th and that makes it the 226th day of the year.  In January I set my goal to walk/jog 365 miles this year.  I can’t imagine that happening now, so I’m adjusting my goal to 200 miles.  Yep, I think that is a realistic number that will encourage me to get in at least 4 miles a week, which is at least two days a week on the treadmill.  I’m not going to lie, when I reach 200 miles I will be super psyched. 

In the mail today we got something from Children’s Mercy.  At least once a month for the last 17 months we have received some sort of mail about Emma.  It is intended to be encouraging and comforting, I know, but that’s not what it does for me.  What is intended as a note to say, “Hey, we care and we haven’t forgotten,” feels more like a note to say, “Hey, remember when Emma died?”  I find no comfort in any of the mail, but feel obligated to open it anyway.  Today’s mail was an invitation to a memorial service next month.  I’m not interested.  I do appreciate the effort that the hospital makes, but I still don’t feel like I belong in a group of people who have lost children.  Weird, right?  I guess that technically we do fit the description, but I’m just not interested in validating my membership.  I fully appreciate that some parents find comfort in this sort of thing, but I’m not one of them. 

Moving on from such an uplifting topic (cough, cough), does anyone want to place bets on whether it gets hot enough to swim again this summer?  It’s 77 degrees out there right now.  Here’s one plus to our soggy summer… hopefully the autumn leaves will be beautiful when October rolls around. 

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