Wednesday, July 22, 2015

Searching, revisited

Being married for nearly 13 years changes you in many ways.

For instance, I know most (hopefully) of the strange expressions used by the Brits, I understand the football leagues and various titles, I appreciate the taste of Irn-Bru, and I can make a pretty good full English breakfast. (just to name a few)

After my last posting, one of Tony's BRs told me that the song I Will Return always makes her think of Tony. It echoes themes I have heard before, that the departed are still with us as long as we remember them.

She reminded me of something... Tony is a part of me. Forever. All I need to do is listen to that voice inside me... he'll help me... and I'll make it through this.

Thanks, Kim.

Saturday, July 18, 2015


I used to believe that there was no problem that Tony and I couldn't solve together.

We weathered the early years of marriage learning to talk to each other, listen to each other, sort out money issues, etc... standard stuff I'm sure. We were just ready to start life as a family of four, when life proved us wrong. ALS was the problem we couldn't solve together... that no one seems able to solve.

So then our strategy became "one day at a time." Make the best out of each day, because we didn't know how many more we would have.

Maybe it's näive, but it worked for us. I remember asking Tony in January or February if the good still outweighed the bad. He said yes, but I knew he meant barely. He always made the difference for me. If I had a bad day, he was there to make it better... just a twinkle of his eyes made it better.

But here I am now... still one day at a time... but without my problem solving partner, and without the guy who always made my day better. I'm trying to find that ability in myself... I know I have to... one day at a time.

Tuesday, July 7, 2015

Happy Fourth of Louise

I want to wish a very happy fourth birthday to our sweet Louise! You are a wonderfully sweet and cheerful girl, and I'm hoping you've outgrown the temper tantrums (for a little while at least).

Today brings many thoughts of Tony too, of course. It's hard to observe these milestones without him, plus there are few other connections with this date...

It was two days before Louise was born that Tony first went to see a doctor about the persistent muscle twitches he had in his arms. Everyone gets twitches, but these never went away. Plus, his arm muscles had been getting smaller... but that's a difficult subject to raise with your husband. Since I waited outside the room, I don't know exactly what the doctor told him, but I know it weighed on Tony. I also remember telling him I was sure it wasn't anything serious (ugh).

And last year, Tony told me he thought he would live to celebrate this day with us. I thought to myself that there was no way... but again, that's not something I shared.

Louise has Tony's eyes, his complexion, and his indomitable spirit. She doesn't remember him before the affects of ALS, and might not have any real memories of him as she grows up. I'm going to do my damnedest to fill her head with stories of him... and I'll need help from all of you.

Happy birthday, Louise... and know that your daddy loves you very much and is always proud of you. Ditto for me!