We’ve come full circle in this year of firsts without the love of my life.  No more second firsts, because I’ve been through them all already.  First Christmas, New Years, birthday, etc.  Each one had it’s own feeling of regret that Tony wasn’t here with me.  If I had to say which ones, I’d have to say my birthday, because he always made me feel extra special that day, and probably his birthday, because even though he hated celebrating his birthday, I always managed to change his mind by the end of the day.

But I don’t want to wax poetic here about what a perfect relationship we had, because it was far from that.  We loved, we fought, we disagreed, he always thought I was right, I trusted everyone, he trusted no one (but me and his son Joe!), he loved me completely and told me every day I was beautiful – but as with any relationship there are ups and downs, but at the end of the night, any disagreement we had was put to bed before we went to bed.  We would end with a kiss and a hug because at the end of the day, we both knew that we were in this for the long haul.  I always told him that I didn’t care if we lived in a cardboard box, as long as we were together, that’s all that mattered.


Last night a year ago I was home alone with Tony.  My PIL had already gone back to their hotel, Hannah and Jacob and gone home and my brother and his family and my Mom went home too.  He was lying in the room on a hospital bed.  The last time I heard him speak was that morning when he recognized his Mom and Dad in the room and briefly held his hand up to them.  His bed was so high, I couldn’t figure out how to lower the damn hospital bed, so I took cushions off the couch and made a make shift bed on the floor of the room – I feared if I slept in my own bed if he needed me I wouldn’t hear him since even in a situation like that, I was a heavy sleeper.  I remember standing over his bed saying goodnight.  He hadn’t moved much, but I was able to stand on a chair next to the bed and reach down to kiss him on the cheek.  I stepped down off the chair and I saw a tear drip down the side of his face.  I told him I loved him.  That he was my best friend.  And that I was going to miss him so much. And I am pretty sure I said “this isn’t fucking fair.”

I finally willed myself to get some rest.  When I woke up the next morning, he was in the exact same position.  His breathing was a bit labored, but the hospice nurse said she’d seen people go without dialysis for up to six weeks! 

What I am happy is that his family was able to see him before he died. 

PicMonkey Collage - family

My MIL stood hand in hand as we watched him take his last breath.  I still don’t know what made me at that exact moment go in the bedroom, and what prompted my MIL to follow me in, but I am forever grateful that we were there until the very end.


So to say it’s been an interesting year is an understatement.  I’ve started reading posts I wrote in January and February of this past year and literally can read that I was going through the motions, almost as if in a fog.  I was still going to the gym.  Still walking, making food, posting recipes.  I think it was the only thing that kept me sane.  Well that, and having Hannah and Jacob move in with me.  Not only could I not have gotten through everything from when we left the hospital for hospice, but having people to “take care of” has helped me, even though at 23 years old they don’t need me to.  They got engaged last December!  But honestly if they get married before they are 30, I’ll be shocked.

PicMonkey Collage - jacob hannah

My life was defined for so long as Tony’s caretaker – even in between illnesses, that’s just what I did.  I took care of the house, the bills, the doctors appointments, basically all of the “adult” stuff, and I didn’t mind doing it.  That was a role I took on and accepted without hesitation.  The few weeks that I was alone before they moved in, I literally came home, poured myself a glass (or five) of wine, eat a deep dish pizza, watch stupid shit on youtube, go to bed, go to work and repeat.  When they moved in I knew I couldn’t continue that behavior and while I know their stay here is temporary, I believe by the time they move out, I’ll be completely okay living alone.  It’s interesting because that’s one question I got most after Tony died is “would I still stay in the house?  would I move in with my Mom?”  I had already maintained our house for 14 years and pretty sure my Mom doesn’t want her 47 year old daughter living with her, even though I am her favorite. Open-mouthed smile

Do you guys remember when I bought Tony a tablet last year, thinking that he’d be able to use it while in the hospital?  Well I set it up with his help so he’d have access to his email, etc.  I am so glad I did that.  Not obviously knowing he’d pass away three weeks later.  But because he put the password in, it let me have access to his emails – all the sent emails to his son, to me, his parents.  He didn’t delete any of them.

I wanted to share this letter he wrote to his son in July 2014.  I am positive his parents have not seen it, so thought it only appropriate to share it with them and you today. . . he loved you all so much!

austin 2013 354

To Joe from Tony:

“This is a difficult for me to write.  Biz has gone to bed and I feel this is important for me to say.

I don’t know if you remember but when Biz and I got together I sat you down with you and told you things were going to be changing.  I told you that you were the most important thing in my life, and nothing has changed.  When I go to sleep I wonder where you are and hope you are OK.  I am very happy that you and Lizz have an awesome life.  I think of her as the daughter I never had.  She loves you and I could not be happier.  As your life goes on please never forget how much I love you.

I am heading to Mayo this week and I do not think it is going to be good news.  I have never lied to you so I think I need to tell you why I am so concerned.

I don’t know if you are aware of this, but I have an unusual ability to read people.  As you know Dr. F. and I have know each other for a long time.  I saw in his face something I have never seen.  He is very concerned.  He is sending me to Mayo because he is very worried.

I might be wrong, but I think my body is rejecting my liver.  I am not a good candidate for a liver transplant, given my history of ongoing issues.   Please understand this is all speculation on my part, but I am convinced the news will not be good.  I am dreading the trip more than I can say.  I have had open heart surgery, and cancer, yet this scares the shit out of me. 

If the news is as I fear, I am not sure what I will do.  I have endured a tremendous amount of pain in my life, and I am not sure I can withstand a long illness with an inevitable ending. 

I regret that I can’t say this on the phone, but I would be crying and it would be pitiful. 

I love you far more than I can say, and my biggest fear is not being there for you and Biz.  She is aware of my feelings, and gets it.

Always remember, you are the son I asked you for, and you can never disappoint me.

I truly wish I could hug you, but maybe Lizz can do it for me.

Love you always,