Fireworks, Memories and Apologies

The Fourth of July always brings up memories of my mother, who passed away on July 6 eight years ago.

I can’t watch the fireworks without memories of my mother seeping into my thoughts, and this year was no exception. Eight years ago, on the Fourth of July, my mother lay dying in the same bed my father had died in the previous summer. I sat vigil at her bedside listening to the celebratory claps of fireworks, an odd companion to the dark process of dying. She was in a semiconscious state and seemed oblivious to the loud noises, but the sounds triggered good memories for me of all the previous Independence Days we had celebrated together.

Fourth of July was a big celebration when I was a child. We grilled burgers, made homemade ice cream in the old hand-crank freezer, ate corn on the cob and, since we lived in the country, we did our own fireworks. When I got married 19 years ago, the holiday moved to our new house, which had a beautiful view of Southern Hills Country Club’s fireworks display. My parents came with their lawn chairs, the kids sprawled out on blankets, and we spent the evening chatting and eating until darkness descended and our patience was rewarded by an awe-inspiring patriotic firework display in the sky. As the years went by, the trees grew and our view became more obstructed, but we persevered, moving our chairs and blankets closer to the street, stubbornly clinging to tradition even when it meant a less-than-stellar view.

Fourth of July in my front yard, our last one together.

Those earlier celebrations were a stark contrast to the Fourth of July eight years ago. My mother never regained consciousness and died two days later. As if I would ever forget the July 6th anniversary of her death, fate thought I needed a reminder and sent me junk mail in her name this week. (Donations to good causes will follow you beyond the grave.)

Although eight years seems like a long time, her memory is still fresh and her absence felt deeply. Although I’m not one to visit graves, July 6th is a date that will forever be commemorated in my heart. Her memory doesn’t reside under that cold, metal marker. If I need a place to remember her, I drive by my childhood home, the place my parents lived for fifty years, or I ride my bicycle to my parents’ favorite spot on the river, the bears statue and waterfall at 71st and Riverside.

The bears statue, one of my mom’s favorite places and where I got to remember her.

My mother was a difficult person to figure out. She did all the right things as a mother; she cooked, drove us all over town for every kind of lesson and practice imaginable, she sewed all of our clothes including ballet recital outfits, prom dresses and wedding dresses for three daughters. She was our Sunday School teacher, Camp Fire leader and was always game to be the host of noisy groups of my friends for slumber parties. She was textbook perfect. Yet, I occasionally caught a glimpse of melancholy under the surface of her perfect façade.

I’m not sure if it was because my father had talked her into leaving their comfortable suburban neighborhood to live in a rustic (realtor’s term for falling apart) house in the country or because she gave up a much-loved teaching career to stay home with children. Or maybe it was the disappointment and struggles she faced after discovering her fourth child and only son was intellectually disabled? Perhaps it was because her life didn’t turn out as she had dreamed. She was the hometown beauty queen, a popular girl with a sharp intellect and an exceptional talent for singing.

I can only present hypotheses because my mother rarely talked about her feelings. I suspect her life wasn’t like she planned, but who leads the life they dreamed about when they were young?

My mother the year she was Miss Republic County. She wore this dress for the Miss Kansas pageant, and I still have it in my closet.

When my otherwise healthy mother received a diagnosis of pancreatic cancer, we were all devastated. My uncle had succumbed to pancreatic cancer six months prior to her diagnosis, so we were well acquainted with its reputation as a merciless killer.

With my kids away at college and with the help of family and Grace Hospice, I was able to put my life on hold to take care of her at her home. I hoped that during the long hours I sat by her bedside she would open up and I would get to know her on the deep level I craved. It didn’t happen. I thought maybe I would finally hear words I still pathetically longed for at the age of 52, to hear her say she was proud of me. It didn’t happen.

The only topic we discussed of any depth was her concern for my intellectually disabled brother after her death. During her short illness I went through the time-consuming and expensive legal process to take over guardianship of my brother. Although I assured her I would always care for him regardless of legal status, it was only after the guardianship was finalized and she explained everything to my brother that she was able to let go.

My mom and my brother were very close.

My children were her seventh and eighth grandchildren and the only ones that lived in the same state, so naturally she spent the most time with them.  She loved all of her grandchildren, I have no doubt that she loved them, yet she often seemed disconnected in comparison to my friends’ parents.  I wanted her to be more actively involved in their lives, to go to school events, take them places and be excited about accomplishments in their lives. In hindsight, my unrealistic expectations were partly due to my loneliness as a single parent; I wanted a partner to share in the joys and struggles of parenting, and I unfairly laid that burden on her.

She did help, especially after I became a single working mother and needed more assistance with afterschool care but I selfishly wanted more. It’s only now that I’m older, hopefully wiser and a grandparent myself that I appreciate my mother more fully. My mother’s death and my ensuing role as guardian of my brother has increased my understanding of my mother exponentially.

I now recognize that my mother was tired, emotionally and physically shattered. When you’re the parent of a child with special needs you never get to retire from the active duty parenting stage. There is no break between parenting and becoming a grandparent, never a true empty nest. My brother was in the midst of some very difficult years when my first daughter was born and my mother was absolutely exhausted from the struggles. She found a long-term home for my brother not long before my daughter was born which relieved her of some of her physical parenting duties but she still had constant feelings of guilt, worry and responsibility for a child that would never be independent. Her time may have been more available but her emotional energy remained at capacity, she had little left to give.

Last week, I told someone I had a son with an intellectual disability and then I immediately corrected myself to brother, not son. Later I thought about why I said son instead of brother and although I may be reading too much into a simple mistake, I think it signifies a gradual shift in my role with my brother. Since my mother’s death I’ve had my own struggles growing into my position as “his person” and as time goes by I understand the emotional impact my brother’s dependency created for my mother. I will never fully understand because I didn’t go through everything she did and I’m not his mother but I feel a morsel of the constant concern and stress.

Even though my brother happily lives in a wonderful home with attentive caregivers, he is never far from my mind. I talk to him every day and visit frequently. My responsibility for him affects my life in dozens of ways. I always have my phone with me and when the number of his home pops up I feel a flutter of panic that he is sick or injured. When I travel I now buy trip insurance in case my brother has a medical problem and I have to change plans. I’ve learned the power of negotiations (start out low so you can end up in the middle) as every nightly phone call with him involves bargaining about how much money he can spend, how many pieces of pizza he can eat and what size Sonic blast he can have the next time I come to visit. My mother couldn’t say no to my brother and I’m still defining my boundaries.

I know I’ve made some mistakes in the learning process. My mom let him smoke cigars and I said no for years until my daughter and a few friends persuaded me to say yes. Last summer I took him to a park and let him smoke one cigar. Since then he has decided he likes candy better and hasn’t mentioned it again. Being my brother’s guardian has helped mend my relationship with my mother, and I wish she were here to hear my apologies. I should have helped more with my brother years ago and I wish I had tried to understand her emotional pain. I hope she senses that my brother is doing well and although I’ll never measure up to the part she played in his life, I’m trying my best to be his sister-mother-friend. Fireworks and memories of my mother inextricably linked. As I watched the beautiful explosions of color in the sky last night, I sent my own message upwards: “I get you Mom, I finally get you.”

My brother and I at Night to Shine, a prom for adults with special needs. He loves this event!

Categories: Grand Life