Just Being

It's been a whole month since I posted. In that time, we went on a houseboat trip for an intended three nights, but did just one and hot a wonderful resort in Ely called Burntside. LOVED that place! We had a beach side cabin and one of the most beautiful nights ever where we just sat out til past dark and grilled and watched the water. We actual had two nights at the resort, and the first one it was poring rain but we went to their wonderful restaurant. The resort is so cool in part because it has been operating since 1914. It features no TV, no wireless, just an Up North kind of experience in a beautiful setting.

Our next trip, about two weeks later we went to Hoveland, MN and stayed in a fabulous house and ignored the TW and just soaked up the lake. We spent a lot of time just listening to and looking at Lake Superior, talking, having drinks, being with our dogs. Just being.

Our last trip was just this past weekend, and my mom was with. We had this beautiful bedroom with a deck that overlooked the harbor right in Grand Marais. One night we just hung out and admired the full moon for an hour. It was awesome.

Then Friday night we went to the MADACS awards  (Property Management Industry awards) and made a party of it. We got the junior suite at the Hilton, and went to the after party where we saw the Vikings stadium and actually got to go down and see the 50 yard line up close and personal.

We watch all the Vikings game and we are going to see one in October - looking forward to it. Here at home, I cook and we just hand out and soak up the game. We loved last season and are loving this one too.

Work is work, for sure. I just take a calmer view of it then I did before I am really seeing how if you are going to keep on as a Regional Manager for 1200 units plus, you gotta take it all in your stride and keep your perspective.

I feel closer to Brian than ever. We had a conversation on how there is no set schedule on anyone's progression, and he really could be one of those lucky people who has a lot of time left before this progresses into more substantial disabilities. Of course, it could go the other way too. We know that. ALS is an unpredictable beast for sure. I was just talking to someone online who's wife was doing great for two full years post diagnosis, walking/talking/eating/using hands and arms, then suddenly just pretty much lost her ability to breath on her own. She was limb onset, like Brian was. That could happen to us - in 30 days or a year or two. We know that.

Once again though, my perspective has changed a lot from what it was even three months ago at diagnosis. I imagined a fast downhill slide then and was in pretty much constant mourning for the near perfect life we were losing so very unexpectedly. I LIVED through that grief, never curled up and gave in to it because I just refused, but I sure felt it at all times.

Now, I feel very much in the present. I also don't see - refuse to see everything in our past and present through the prism of ALS. I can look at our wedding pictures without tearing up. Honestly, the odds Brian will be here even let alone walking around in a few years are slim. The prognosis for this is 2-5 years with substantial and progressive disability before that day comes. I think though that what we both realize is that we can either live IN that prognosis, or we can say who knows what our situation will actually be, and keep living life and enjoying each other. We cannot live in maybes and eventualities, only in what we have today.

Do I have moments? Absolutely! Does he? Of course! He got downright angry listening to some friends fuss on their retirement finances. I nearly cried when the VP of my organization asked Brian Friday how he was and how I was and she spoke of thinking of him often. That's okay. Sadness is normal sometimes. Life gets better and easier when we don't run from pain.

I feel very much that something greater than ourselves walks with us. Yup, my sort of heathenish self and my agnostic husband, lol! Yet I heard a hymn about burdens being to heavy, and how you can "lay them here" at the cross (the reference being to Jesus of course). Somehow that made my heathen self feel much better, and I felt less alone and more like I could put this very heavy thing with a higher power because it is too big for me. My religious exposure was Catholic, so I am sure I am not worthy of that higher power because well, I have only talked to him much when things get really hard but he seems to be an understanding sort, and just lets me do that. Thanks and amen :)

We are life. We are love. We are not a diagnosis.

Love out to all.