My dad recently passed away.
He was born in 1951 with Muscular Dystrophy. Back in the 50’s, not much was known about the disease or how to treat it. He never had surgery, just a back/neck brace. But really, it didn’t matter, because my dad never let it hold him back from doing what he wanted to do. He was a member of the Boy Scouts of America when he was younger, worked at a camp for disabled/handicapped kids when he was older and then backpacked through Europe with one of his friends.
He met and married my mom in 1974. They bought the house I was raised in in 1976 and then had me in 1979, followed by my brother in 1984.
Some of the earliest memories I have are of my dad and I playing catch in the backyard and being at Disneyland. When my mom was pregnant with my brother, my dad went on all of the rides with me. He coached me through driving on Autopia and wiped away my tears when I was afraid of going on The Haunted Mansion. I still remember him telling me it was ok to close my eyes, and he’d tell me when it wasn’t scary and I could look. And he never tricked me.
To me, my dad was never disabled or “different”. He was just my dad. He was the guy who would make me laugh when I got hurt, would sit and do homework with me when I needed help, he was my brothers assistant den leader when he was in Cub Scouts, he took me to all of my dances when I was in Girl Scouts and he would never fail to tell me when he thought a friend I had was bad news. And he was never wrong.
In 2000, his first grandchild (my older daughter ) was born, followed shortly by his second in 2002. He adored them both. As they got older, he asked if he could do Saturday Night at the Drive In with them. Really all that was is the nights they would visit with my parents, they would get blankets and popcorn and lay on the living room floor and watch old movies. We’re talking Abbott and Costello, The Marx Brothers, The Great Race, Bye Bye Birdie…etc.
In 2012, we lost my brother Sam. He was also born with Muscular Dystrophy. The difference is Sam had quite a few surgeries to help prolong his life when he was younger. But one day when he was leaving work, his heart just stopped. I think that day, my dads heart broke and he was just never the same.
Over the next 2 years, my dads health deteriorated much faster than it had previously. He left the house less and less and would lay down to rest more and more.
In 2014, my parents celebrated their 40th wedding anniversary and they threw a huge party to celebrate. Our entire family (except a few cousins) were there along with some of my parents oldest friends.
At the end of January 2015, one day I was out running errands and had picked up some things for my mom that she said she needed. When I got to their house, I saw something that no one ever wants to see. A firetruck and ambulance sitting out front. I parked my car literally in the middle of their cul-de-sac and ran up to the house. My memory is hazy, but I remember a fireman grabbing me and telling me that my dad was having problems breathing. He said it like it was no big deal and all I wanted to do was yell at him that for MY dad it was a HUGE deal.
They took my dad to the Emergency Room in Simi, where we live. We spent the entire day there waiting for them to run tests on him. He had no signs of pneumonia or blood clots, so they gave him some antibiotics and sent us home. That was Saturday.
Wednesday, I got a call from my mom while I was at work telling me they were on their way back to the hospital. She told me not to leave work, since they’d be running tests most of the afternoon and he was ok for the time being.
I spent every evening for the next week and a half at the hospital with my mom. My aunt came down from San Francisco to be with my mom when I was at work and to stay at the hospital at night with my dad so my mom could try and get some sleep. We spent Super Bowl Sunday watching the game from his bedside.
By the middle of the following week, it had been a week and a half since my dad had eaten anything. The problem was, he needed to be on his biPap the entire time. Wearing just the nasal cannula wasn’t enough. He was not able to eat/swallow without breathing assistance. And you can’t do that because you choke. My mom told me my dad was refusing any kind of surgical procedures that would require him to be intubated. This meant no feeding tubes, picc lines…nothing.
We knew then that my dad would not be with us much longer. I brought my daughters to visit with him one last time and so they could say goodbye.
That Friday, hospice care came and gave my dad his options. He chose to be given morphine and then when he was peacefully asleep, they would remove his oxygen mask and he would quietly slip away.
I watched my dad die.
At 35 years old, I felt like a 5 year old little girl again who just wanted her daddy and still does. The pain is so great some days that I feel like I can’t even breathe.
I will never love another person again, the way I loved my dad.