The daughter I’d hope to be for my father when I first learned of his diagnosis would require more strength, patience, and courage than I’d ever imagined. I am disappointed in the way I have decided to cope & the guilt is beginning to weigh heavy. All he requires is love. All he deserves is love. And love seems to be the hardest part of me to give.

I go to bed often with a heavy heart and wet cheeks - promising myself the next day I will do better. I will try harder and will make a stronger effort to love the shadow that filled in the gaps of my father.

“Just look him in the eyes Jamie and tell him good morning, I love you, & a hug. He needs you Jamie, and he needs your positive spirit.” - My conscious

I am disconnected. A part of me fears if I completely reconnect and reattach myself, I won’t be able to survive the immense pain it took to detach in the first place, again. My body & mind did what it had to in order to move on with the life my dad would have wanted for me. In order to graduate college, spend time with my friends, date, start my career, and laugh a deep bellyful laugh - I had to detach. It was the only way to keep the tears from flowing and the hate in my heart afar.

I am living back home now with the man I detached from. Every time there’s something he can’t do, frustration in his eyes, his hands lost, and words unclear- I cringe. I would feel helpless, scared, and agitated and all the love I had promised I would shower him with the night before - vanishes. Disappointment would flood over me for not showing love during the times he needed it most. Until recently…

After helping him as he struggled with bed time tasks, I tucked him in bed - he looked up at me and found the words - Thank you - and my heart fell. The first real hug I had given my dad in a long time (I admit grudgingly) I squeezed him tight as he started to cry & I told him “ you did all of these things for me, it’s my turn to do them for you”. I felt love stronger than ever in that moment - because I knew then & there, I would do anything for the man that did everything for me.

My dad worked odd hour shifts as a contracted truck driver for the post office. He was present in my life during the day to take me to school, attend field trips, help with projects, and pick me up from school but would spend his evenings working long shifts and sleeping in Santa Barbara. As a little girl I used to lay in bed and say prayer after prayer as I heard my dad getting ready for work Sunday nights at 2 am - “please watch over him, please bring him back home to us” because the thought of losing my dad was unbearable, unimaginable, and a fear I discovered early on. I did not grow up in a religious home - I never attended church - I had no idea how to say a prayer or who God even was, but every night I said the best prayer I could because my dad deserved the best. And if God was the best then he would have every angel in the sky looking over him as he provided for our little family.

Those prayers worked. Only to find that one day they wouldn’t…

Sometimes I wonder what happened to his guardian angels and why they felt the need to leave his side. My prayers only got him so far - I wonder if I was praying for the wrong thing all those years. Instead of praying for him to make it through another night of truck driving, I should have been praying for him to find a new job. What would life be like now if he had made a different career choice?

I am so grateful I had my father growing up, the best childhood, and a dad that provided me with the world. But now as a young adult woman facing the world - I feel like I need him more than ever. I wish I could trade in the time I had then for more time with him now.

I crave his advice, his snuggles, his comforting smile, and his witty character. I wonder what lessons he wanted to teach and instill in me, but never had the opportunity to. I wonder what he would have told me on my graduation day, what family vacations we might have gone on, what happy family memories we never had the chance to make.

The sad story of the happy family of 3 - our lives have been deeply affected by this ugly disease. The future is grim & planning is impossible as we continue to live day by day. Laughter is scarce, affection is forced, and joy is distant. It’s hard to fill a home with warmth and love when it constantly feels empty, cold, and anxious for what’s to come.

My heart is heavy as I share these honest thoughts & feelings. I miss my dad more than I would ever be able to put in writing. I look at other dad’s with their young daughters with a smile & damp eyes. I saw a father and his two daughters at Gap not long ago - trying on clothes in the dressing room and encouraging them to try on more outfits, complimenting them on everything they came out in, and I sat in the dressing room and cried. I wanted to tell him he was creating the best memories and being the coolest dad around because that’s exactly the kind of dad I had. Encouraging, fun, and the best shopping assistant! But instead I pulled myself together, left the dressing room, and smiled at the three of them as I reflected on my memories.

I choose to live my life as happy as I can be. I choose to keep my spirit up, make others laugh, and plan for my future. I know he would want nothing more than for me to smile, laugh, be kind, ambitious, strong, and encouraging to myself and others every single day. I may hold feelings of guilt & sadness in my heart, but my soul will always exhibit that of my father - happiness, silliness, and full of life.

I continue to say my prayers for my dad and I hope if you are reading this you wouldn’t mind saying one for him too.

Thank you.

Jamie Rae