Like It’s Our Last Day
Patty Jo Djennelbaroud
English 121
Instructor Asatryan
March 25, 2013

Like It’s Our Last Day
All too often we live our lives like we will be here forever. We take advantage of the time we are given to spend with our loved ones, and neglect opportunities to show how much we treasure them. Even when someone is old or sick, it’s too easy for us to fool ourselves into thinking that they ‘know’ just how important they are to us and how they impact our lives. I was lucky enough to be taught the value of living each day like it was my last day, and to never take our loved ones for granted, thanks to my niece Hillarie.
When I was 14, my sister gave birth to a beautiful baby girl, Hillarie Dawn. She had milky-smooth copper skin, was completely bald, and the longest baby I had ever seen. Even her toes and fingers seem to stretch for miles, and she could keep herself entertained for ages just by watching her tiny fragile fingers furling out and in, again and again, like the tail of a peacock opening and closing. She wasn’t the first baby in this generation of my family; she was number five thus far. You could say we were quite well versed in newborn-ology, but she surprised us all with her quiet and easy nature. She rarely cried or fussed, was always happy, and even let us catch sleep for hours at a time.
Before the age of 2 she was diagnosed with a heart disorder, a rare form of Hypertrophic Cardiomyopathy with RCM. It held a bleak outcome for her future; most children diagnosed in this age only have a 44-50% survival rate beyond two years of disease presentation (Canter and Webber, 2012). This reality catapulted our family into a life of specialists, hospital stays, treatments, and learning how to take care of a child with special needs. While we often felt worried, stressed, and frazzled, our little kewpie doll never made a fuss. She endured constant needle pricking, IV’s, tests, and hospital stays like it was a normal part of life. While most children would panic, attempt to flee, and cry on sight of a nurse, our little Hillarie greeted everyone with her smirky-smile and the twinkle that was always in her eyes no matter how sick she was. Doctors and nurses were enamored with her.
Before she was school-age the surgeries started; she received several state-of-the-art pacemakers over a period of a few years, all with the hopes of extending the life of her heart. At the age of nine we received the news that her heart was giving out. Luckily within a period of months she was the recipient of a new one. While she would have to take myriads of medications and have never-ending tests to prevent heart rejection – we were thrilled at the prospect of seeing her have an extended life.
Despite her condition, her appearance seemed healthy compared to other children with cardio problems. At first glance she didn’t look sick, with tanned skin and a tall physique, and a smile and giggle that belied her disease. When in the hospital, the medical staff was constantly breaking rules, bringing goodies, and giving her special treats. They were amazed at her easy smile and calm nature, how even on her bad days she would try to laugh and find ways to enjoy the moment. One thing was for sure, everyone who came in contact with her felt that she had something special and quickly fell in love with her.
Because of her transplant, she was easily susceptible to anything contagious, which limited her ability to be around other children or public places. Hillarie missed out on so many things a normal childhood should bring; regular school attendance, group activities, birthday parties, sports, to name a few. She took a plethora of medication and had never-ending doctor visits and test, but Hillarie never complained. I never once heard her feel sorry for herself, or ask the popular “why me?” As she grew into a young woman, she became one of the coolest, funniest, and most caring people I’ve ever known. She always did things her own unique way, finding interests and things she could be active in despite her condition. She had her own style and every person that knew her was deeply affected by her.
When she was 17 I had the privilege of having her live with my family. My children were the siblings she never had, and she cared for them as her own. Her presence in our house added unending sunshine. She had some of the healthiest times when she lived with us, and we took full advantage of it. We spent countless days just being silly, going on adventures, and doing simple family things together. I taught her how to cook, she taught me about the latest cool things in the teen world, and we enjoyed movies and playing with my kids. I also became her health advocate, taking her to doctor visits, tests, and making sure she followed doctor’s orders.
Hillarie was never shy to say “I love you” or to give hugs and kisses to all of us. She made a point to let those she cared about know how much she loved them on a daily basis. Sadly, we lost Hillarie at the age of 19. For some reason, even though I knew she had an illness, I always expected her to pull through the down times and bounce back because until then, that is what she always did. It was a heartbreaking shock for us all.
I know that Hillarie knew I loved her, but I’m not sure if she knew that she was my hero; I wish I had told her at least once. Even though she suffered from an illness her whole life, she taught me so many things, such as how happiness is something you grow inside of yourself despite life’s challenges. She reminded me that no matter how hard your circumstance in life, you can keep smiling and going, taking one day at a time and being thankful for each moment.
As Randy Pausch (2008) so eloquently stated, "Time is all you have. And you may find one day that you have less than you think”. Top of Form
This is the biggest lesson that I learned from having Hillarie in my life - we are all specs of dust in this universe. We are here and then we are gone. We never know the circumstances, but sooner or later we will all leave those that love us. Because of this, we can’t allow ourselves to be complacent and expect our friends and family to ‘know’ what they mean to us. Make sure you say “I love you” every day. Give bountiful bear hugs and kisses. Don’t stop with a simple ‘love you’, explain to them why they are important to you and how they have changed your life. The reason why it is extremely important to treat them like it’s the last day we will see them is because some day, it will be.

References

Canter, C., Webber, S., Lipshultz, S., Sleeper, L., Lu, M., Colan, S., (2012). Outcomes of Restrictive Cardiomyopathy in Children and the Influence of Phenotype. Circulation, 126(10):1237-44. doi: 10.1161
Pausch, R., Zaslow, J. (2008) The Last Lecture, Hyperion.