For those that love us…

In December 1991, I was 23 years old, happily married, working at a good job and pretty much doing whatever I wanted in my free time. Traveling, skiing, hiking – it was a great life and Scott and I were having a ball. And then my Dad was diagnosed with terminal pancreatic cancer. We knew he wouldn’t have very long, that’s just the way it is by the time you get that diagnosis, already late stage and very aggressive. I have talked/blogged many times about my Dad and his dignity, acceptance, grace, and perseverance through his disease. He was always my hero and remains so to this day. He died on May 8, 1993
While he was sick, we rallied around him as a family and my brothers and I each did our best to help, but through all of what my Pop went through, my Mom was right there with him at every turn. She attended his appointments, his treatments, and helped him through the sickness and fatigue he felt after each chemo, helped him when he was so weak he couldn’t bathe himself, and was smart enough to get hospice to the house when it was time. She tried to cook anything and everything that might sound good to him only to see him throw up or have it not taste good after a bite or two. She coordinated visits from his many fireman friends, our family, and others to make sure he was never too tired, but still got to stay in touch with everyone. She really was amazing. And she did it for many months as he went through treatment, without complaint or even a second thought. So naturally, at the end, the last words I heard him speak, after many hours of silence were to her, and they were simply “I really love you.” After he passed away in our home that day in May, my Mom walked him out of the house to the coroner’s car waiting outside and didn’t come back in until the car drove off out of sight.  And that finished their journey on this earth together. And the vision of that will remain with me all of my life as a symbol of their deep and never ending love for each other.

And now, here I am some 25 years later, and I see my sweet Scott and think about all he’s already done and all he’ll have to do on my behalf. He’s always been and remains my best friend, but there’s a change that occurs when one of you is diagnosed with an incurable disease. And while I’m still doing quite well, I see the stress this brings to him and I know he’s under great pressure. I feel guilty about putting him and our boys through any of this and wish I could do something to change things. But we both keep plugging along, because, well, there is no alternative. We have kids to raise, jobs to work, and giant dogs to feed. And for right now – we’re hanging in there. But I do want everyone to know – how much I appreciate him and love him. And that I know he’s going through so much and keeps it all close to his vest because he always puts me and his kids first.

I think we all have an idea about how difficult it is to be a caretaker of someone that is chronically or terminally ill, but I don’t know that anyone can really grasp the toll it takes on the people we love and are closest to us. Disease changes the person it has infested – physically, emotionally, in how we think and feel about ourselves, and in so many other ways you don’t see coming. And our caretaker has to adjust to this new you as well. I’m so much more emotional than I used to be and so much more irritable (at least I keep telling myself that is a new quality!). Sometimes I imagine Scott must feel like he has to swallow his own feelings, pain, hurt and confusion; that it is somehow secondary to mine. But it is not at all. What he is feeling matters just as much. And it can be so easy for both of you to just shut down. But that’s the last thing we can do. Anyone in this situation has to figure out this new relationship and even to somehow embrace, or at least accept it and the changes it brings to our lives or you’ll lose each other.

I certainly don’ t have it figured out and don’t pretend too. But I did want to take the opportunity to tell Scott and my Mom, “thank you.” I know it isn’t/wasn’t easy and you both are amazing. And I’m so sorry my Mom has to find herself worrying about me now at this point in her life, but I’m in good hands.  And of course I want to send mad props out to my siblings, in-laws, friends and everyone that cares for me. I love you all!

Also, there are a few things I want you to know if I check out before Scott does:

· Don’t you dare, anyone, criticize Scott if he chooses to date and/or remarry. I totally trust him to bring home only someone good for our boys and he deserves to be happy – always. Trust me, it would have been our druthers to be together until we were both crusty old farts, if that had been our choice.  And I haven’t given up hope that will still happen!

· Do not question how Scott raises our kids. He knows what I would do, and frankly, it’s not always what he would do, but he will always put what is best for them first. NO QUESTION ABOUT IT.

· Make sure he remembers to go out and have fun. No being a fuddy-duddy! He needs to do at least one or two things a year that I would force him to do so that he remembers to be a kid every now and then. The bowling league has been a 32 week reminder of that which I know he will never forget … or forgive.

· Remind him often, of how much I love him and how thankful I am we got to share our life together. Not because he’ll forget, but because it will be nice to hear. Everyone likes to hear nice things from time to time.