9 months

This is a difficult video to watch, even for me, but if you haven't seen it yet take the time to watch.

 Often Awesome: Episode 32

Wow! Heart breaking, sobering, inspiring, phenomenal > whatever your take on Tim's video, many of the PALS I interact with are in a similar condition and the rest of us recognize we may be there someday.  So after my recent clinic visit and now nine months since diagnosis, figured it was a good time to update what my days are like.

• 7am - Wake up, shower, dress > I can roll to my sides but Gina has to help me sit up and get to the shower. I can stand with the hand grips and wash my hair, some days I can the soap. I shave using an electric razor and brush with electric toothbrush.  G dresses me for the day, shorts and T shirts for summer.
• 8am - Breakfast, helpers > Usually before she leaves for work I get morning meds ( mostly supplements), a cup of coffee through a straw and cereal for breakfast. Good news is I can still eat and drink all foods and I still feed myself. The home health ladies arrive during my quiet reading and prayer time.
• 9am -noon- TV, computer > Morning First Take on ESPN2, Quick Pitch on MLB Network maybe some jazz or gospel music depending on the mood.  Facebook, updating fantasy team lineups, reading other blogs and alsforums.com keep me busy most mornings.  Restroom trips require assistance from the ladies; they get to unwrap the package and handle clean up on aisle five!  Not sure I'll ever get used to private parts being public parts but I don't really have that choice so I try to make the best of it.
• noon -5pm.- lunch, Jeopardy! > All those years in fast food means I still eat a late lunch, then it's reading or maybe a movie.  We get in the range of motion exercises to keep me limber and most days a power nap.  Then the hilight of the afternoon, Jeopardy at 4:30, I'll take Morons for a thouusand Alex.

I know, sounds really boring, but it's not so bad. I get an occassional visitor, always appreciated, and we do get out of the house regularly.  I have a new platform walker which should get me up in the house more and my father's day present was a sturdy new bar stool I can use in the kitchen, maybe I can even get cooking again!  While it takes more effort, more help, more planning and more time, ALS has not yet stopped me from doing anything I've really wanted to do.  Mardi Gras, Jazz Fest, wedding, Astro game we've done them all!  Looking forward to Hayden Lynn getting here for her summer visit and all the fun that we'll have together, time to make another deposit in the memory bank.

*** It took me 3 hours 15 minutes to type this blog entry.

Wedding Weekend

Well, what a weekend it was as we welcomed Sarah and Caleb to the Connell family.  The trip to Houston has been a breeze the past few times and it was clear sailing again. First on the agenda was Nolan's adoption of Sarah's 16 month old son Caleb. When we got to the court house, we found out that the hearing was upstairs and the elevator was broken. Uh oh!  While I was prepared to wait it out down in the lobby, the judge was persuaded to move downstairs into a different courtroom. With the families crowded in and a couple of surprises along the way, the judge finally got to say "You are now officially Caleb Issac Connell" to which he responded with a long loud raspberry, priceless!

The hi light of Friday's rehearsal dinner was me playing chase in my power chair with Caleb, we went around the room about 100 times laughing and having fun. Up early on Saturday to be at the country club for 8:30am, the guys enjoyed a peaceful morning on the back patio before heading in to get into the tux.  The wedding was held outside overlooking the rose garden, a little warm but doable, brides maids in red and guys black tuxedos with red tie and vest.  Nolan wore his Marine dress uniform and Sarah was simply stunning in her gown.

Long time family friend Clint Summers did a fantastic job with the service and proud poppa teared up more than once. With family and friends gathered, these two childhood friends declared their vows and became one new family. The reception followed with yummy food, dancing, cake and tons of fun.  I learned that the power chair doesn't do a very good Cupid Shuffle, but with a little help I was able to dance with my honey, at least until my pants started to droop and almost tripped me. I sure hope that somehow I'll have many more chances to dance with the one I love!  The happy couple changed and headed off for their honeymoon cruise and we wrapped up the party in style.

A very special thank you to our dear friends and now family, Sarah's parents David and Anna Valle, for planning and executing a fantastic weekend for all of us. We've known for a long time that God brought us together by divine appointment and you have been the biggest blessing in our lives, look forward to seeing our kids live happily ever after!