Alexandria's Journey

Original Text of an E-mail from Douglas to Family/Friends

Preface:  After reading this the note seems to be a lot about me, and I apologize for that.  I’m experiencing something I’m not accustom too, spoken to Kim about it briefly, but perhaps I need help grasping this.

Alexandria turned three weeks old today (Friday, January 6th).  The last few days have been good for her, she hasn’t had a full-blown episode (cardiac or respiratory) in a week now.  She’s eating, she’s… processing food like any other child, she sleeps.  She seems so healthy to me.

I had lunch with one of my closest friends this week, although he doesn’t know what to do with me when I cry he’s straight forward and blunt when I need it.  I’ve told him how I feel, that I no longer feel that she’s dying, that I have this strange peace about her now, like everything will be ok.  He’s clear and tells me, in no uncertain terms, that I’m probably wrong and that the fall I’m headed for is a big one.  I know I should feel he’s right, but I don’t, and that scares me a bit.  More on that:

I’m sure there are people who would disagree, but I tend to think I’m a fairly rational guy most of the time.  Part of my job is to assemble facts, opinions, distinguish between the two and then make judgment calls.  Do we design the system “this way” or “that way”.  Do we choose technology “A” or go down the path of technology “B”.  I make a call and I can rationally back that choice up, I make sure to have my ducks in a row before I walk into meeting/review/fire-fight.  So here I have friends, doctors, nurses, my wife, everyone I have ever trusted telling me that she’s going to die.  My heart STILL tells me, “Nah, they’re wrong, she’s going to be fine.”  I am absolutely serious about that.  Don’t get me wrong here, I know she’s going to have physical and mental setbacks.  I just don’t believe she’s going to die anytime soon.  How do I deal with that?  Is that normal?  Is this what real denial feels like?  We’ve all denied things were true in one situation or another, but you always had that nagging feelings in your heart that you “knew” it wasn’t really true and you were false to deny it.  For the first time in my life I’m experiencing the exact opposite of that… everything points in one direction, but it’s just not believable to me.  I didn’t even know that was possible.  Re-reading this paragraph makes me wonder if people are going to think I’m losing my mind.  Now I’m wondering if I should delete it all and just give a “happy” update.  I consider that it is denial, I am hopeful that it is a grace of faith.

Nope, going to leave the above.  Never been one to stop people from questioning my sanity, why stop now, right?

She’s laying on chest while I write this… fast asleep, peaceful, perfect.

I just don’t get it.  I’ve dealt with death before, many many times.  All of my grandparents are gone.  My parents are gone.  Cousins, friends, even children.  I should be prepared for this, but I don’t feel like I need to be.

I wonder how I’ll feel about this note next week.  Or the week after.

Back to Alex.  She’s had a good couple of days.  Kim thought her color was a little “gray” today, but I think she seemed as pink as she ever was.  Kim felt it might have been the lighting.  Gretta and Harry came by to pick up Aden and Gabriel (taking them to Midland for the weekend, big thanks to them) and Gretta thought she seemed to have a good color.

She’s perfect.

I wish mom was here.  She’d know what this was.  I feel so lost.

Kimberly painting Alexandria's Toenails

Original Text of an E-mail from Douglas to Family/Friends

Alexandria had another great day. Kim painted her toenails today, she had to use a toothpick as a brush because her toes are so small. Nothing ever seems to go quite as planned though and I accidentally spilled the nail polish on the carpet trying to shut off the heart monitor.

Gabriel asked to hold her today and I let him. He sat singing to her, telling her he loved her, and lightly brushing her hair with his fingers. He has a lot of very deep feelings.

Gabriel holding Alexandria

When I got up this morning I sent Kim to bed and eventually wrangled all 4 kids at once. While doing that our neighbor Joy walked over and shoveled out our driveway. (Have I mentioned I love the neighbors?) Later on in the day Gabriel, Aden, and I took our shovels over to their place and did their sidewalks. It was a cold day, but good to get the boys outside and let them run around for a bit. Aden and Gabriel did some sledding down the back hill as well.

Another set of neighbors called us from the grocery store today to ask if we needed anything, then later came by with their daughters for a visit.

I gave Alexandria a bath today and she seemed smaller to me, as if she’d lost some of the “baby fat” she may have had while in the womb… not that she had much to begin with. At some point I need to find a scale that we can use to accurately weigh her.

All in all it was a good day. Good enough that tomorrow I’m going to attempt going into the office for a bit.