What's Good about Today?

Some days you need a reason to get out of bed.  Today wasn't one of those days, though.  The last two days I've made some decisions, some discoveries, and some observations, most of which make it easier to get up and function in the morning.

Although Facebook is not everyone's favorite and we can all probably agree it can be a giant time suck, it is an amazing place to make connections.  I hooked up with a group of people that have the same congenital heart defect as I do a few years ago.  Although many of the members are parents of children with EA, not all are.  I have learned more about the condition itself, who is the best known specialist, and what types of surgeries are available to treat it now than I ever did from any cardiologist I ever saw.  Through Facebook, I am drawing on the knowledge of doctors and patients all over the world.

Based on this success, I wondered if there was a group for people with feeding tubes.  First I found the blenderized diets group, which again is mostly parents of kids who are tube fed.  That led me to the adult tubefeeding group, which has been an amazing resource. That group led me to the survivors of head and neck cancer group, which has shown me there are more of us out there than you think.  Again, I am able to draw on the knowledge and experience of all of these people and ask questions.  I can also help people who are in situations similar to mine.  I like helping people.  It makes me feel useful!

Being a good parent is a lot more work than being a bad one.  If I was willing to let my kids watch unlimited tv, eat whatever they wanted, never practice or do homework or go to bed at a set time, (or bathe, or brush their teeth, or...) my job would be cake.  It is much harder to say no, to turn off the tv, to endure the screaming, yelling, complaining, and yes, sometimes even wrestle them into pjs and bed against their will.  In the long run it makes your life easier, but let it slide a couple of days because you are tired and yikes! It is like you are starting over.  Back to cracking the whip!

The UPS man brought us packages today.  Beautifully wrapped Christmas gifts from someone we should be sending gifts to instead.  From a family that has already given us so much over the years and we dearly love them.  We continue to receive get well cards, gifts, well wishes, text messages of encouragement, food, and so much more outpourings of love.  I would never dream so many people would be thankful that I am still here, or that so many people would be inspired by this jaunt through Hell.  Who couldn't appreciate such tidings?

Moving is good.  It does not seem to improve the swelling, unfortunately, but it otherwise makes me feel better.  Morning is the best time.  It is best to get up and get as much done before I'm pooped.  Then I don't have to feel guilty if I actually sit and watch a movie or read a book.  Well, at least less guilty.

I'm still figuring out how to do things when my translators are not around.  I had to go to the gas station and I resorted to writing a note that said, "fill it, regular" because that is a lot of letters I don't have (especially L and G.)  Yesterday at the grocery store the clerk asked me if I had gotten my hair cut.  I wanted to say, "and my neck, too," but I settled for the nod yes.

Some of you may be wondering about the Dynavox.  I've been keeping something from you.  I never really even got to use it yet.  When it arrived, the girls were fascinated.  They played all the different voices at different speeds.  They discovered the interesting phrases.  Neither Karina or I could figure out how to switch it to a QWERTY keyboard, so I handed it over to Kelly, my tech support guy, to configure for me. There was a little mishap.  He was having some issues, so he thought he'd just re-set and start over. Unfortunately, that was a "factory" re-set, which deleted all of the text to talk software and turned it into a not very good tablet with big speakers.  Yes, he felt/feels horrible about it, which is why I haven't mentioned it.  We were hoping we could just download the software, but no, it had to be sent back to Pittsburgh to be repaired.  Several exchanges with tech support to get the necessary info, during which their site was down, so it just went back today.  I am looking forward to the second attempt.  At least the girls will be back at school when it comes back and I may get to  play with it myself.

So much to be thankful for today, and everyday.  I won't pretend that everything is perfect. Swallowing continues to challenge, although if I can get something on the back of my throat, I can taste it.  The neck is uncomfortable at times, as is the feeding tube, as is my left arm.  Communication makes me crazy, especially when I open my mouth to speak and drool comes out.  Not the best first impression.  The realization that I am really, really dependent on Kelly is sinking in as getting a job would be very difficult for me at this moment.  There are still a lot of emotions to work through.

Oh, and the EOB came in for the first two days of my hospital stay.  Want to take a guess???  I'll tell you tomorrow.  Until then, be thankful and remember, you don't know how strong you can be until strong is the only choice you have.