Today mommy asked me to listen to this song. As you slept in the background, mommy and I listened to the song and cried together because although we have our memories, you are losing yours and no matter how hard we try to bring you back, we see you fading before us.
Each time mommy would rouse you and you would say hello to me. She must have tried to wake you up four or five times in the space of one short call. As soon as mom and I engaged in conversation, you would fall asleep. It reminded me of each time Frosty would get his hat back and he would wake up and say, “HAPPY BIRTHDAY!” except you said, “Hello” a few times and once you blew me a kiss through your mask.
Each day, in our family chat, mommy shares pictures. She tells me that she sends bad ones and good ones and I tell her it is okay to do that. We need to see both. We need to bear witness. Even from a distance.
When Jeff’s father grew weaker, I urged him to go see his father. His father was an orphan from the Holocaust, he did not have the privilege to watch his parents age but Jeff did so I would remind him that it is a privilege to watch our parents age. Now I have to reconsider that statement because as painful as it is, it is not only a privilege to watch our parents age, it is also a privilege to be in their presence when they do.
Daddy, when the first quarantine happened, each night I would pray to be able to sit with you, hold your hand, rest my head on your shoulder. This is the place where everything else fades away — the pandemic, the stress and worry of work, your dementia, the sadness, the loss, and I am still your little girl and you are still my daddy — the one who always protected me, loved me, made me laugh no matter how sad I was, taught me to be adventurous, listened to my struggles and offered me sage advice, taught me to value difference, made me feel beautiful and special. When the first quarantine lifted, all I wanted was to sit with you and rest my head on your shoulder and hold your hand. I could not wait to be alone with you but it was a challenge to do that. So many rules — book your visit, only 30 minutes, invite my siblings, bring my children, time it with mommy, make sure you are awake and dressed…Then it lifted and I went to visit in your room. We sat on the couch and you reached for my hand and I rested my head on your shoulder and you started to sing, “Heaven, I’m in heaven…”.
You used to sing that to me daddy when I was a little girl — you taught me the box step and we would dance together around the house.
Each day, you fade from us daddy. Each day I try to numb myself to the fact that you are slowly fading before me because I can’t stop it and I can’t be with you and it is too painful to think about it.
There are days that you just sleep.
There are days that you say my name but those are few and far between.
There are days that you are completely lost to us and all mommy sees is anger, aggression, frustration. You are lost on those days because that is not you. That is not the father who tries to rescue worms on the driveway so they won’t dry up. You are a gentle soul and yet that disease has even taken that part of you. Those are the worst days. Those are the days we don’t get any pictures at all.
Then, one day, after not seeing you for months, we are able to see you through the window and as much as I resented this months ago, my gratitude for the visit is indescribable and on that day, you blew us a kiss. And we caught it on film.
My favourite days are the ones when you tell me you love me. Those are the days that even if you don’t say my name, I know you know who I am and I know you know that we have a special love.
When you wake up after days of sleep or anger or confusion I have asked you if you remember those other days and you don’t. I am glad you don’t because you would not like how you were acting. I know that isn’t you.
But mommy…she is there every day daddy. She feeds you, toilets you, dresses you, brings you treats, washes you, loves you better than anyone and although I can see that the pain is unbearable for her, she goes back every day. She goes so she can take care of you and so she knows, if she survives this nightmare, she will know she has done everything she can to let you know that she loves you so very deeply.She cries every morning. She goes to bed alone every night. She is in that house that you moved into weeks before I was born. She is in that house that used to be so full we had to share rooms and now it only echoes. Echoes of the memories that were, the life that was, the love that is still there. Gone is the hope that you will come back but we still wait for the small moments — the kisses, the awareness, the memories that we still have…cheek to cheek.