My best friend Leah Nepomuceno is one of the strongest people I know, especially when it comes to family. Family to her is everything and she has done all she can to try and keep hers together as a whole. We were in sixth grade swinging on the swings outside at recess, whispering and giggling about our usual gossip when she received news from one of our teachers that we knew was serious by the look on her face and fear in her voice. She came up to us and told her she needed to go the office and that she was being dismissed, she gave me permission to walk with her inside.
On the short but long felt walk inside Leah’s heart was pounding, her hands were sweating, and her eyes were slowly filling with tears. Her mom was sitting in the big, blue, leather office chair with many of our elementary school teachers huddled around her sharing their sincere heart felt sympathy and much needed support. Leah’s mom, Deb, had found out that day that her husband Ron, Leah’s dad, was diagnosed with ALS, also known as Lou Gehrig’s disease. The doctor had told Deb that is was going to slowly take away all of his muscles, eventually killing him and there was no cure for it.
This news was heart wrenching for me to hear, since they were my second family, I grew up with them, Ron was my second dad. “It was like the last 11 years of memories with my dad flashed before my eyes and I didn’t know what to do besides think of all the things we haven’t done that we need to do before he dies,” Leah replied when I asked her what her first thought was when she heard the news (Nepomuceno). Just talking to her now about it, 7 years later, is still just as heart breaking and you can hear the sadness in her voice.
After the news was out and almost the whole town knew, everyone was willing to help out with what they could since he was slowly starting to lose his legs and would have to be in a wheel chair. They renovated the whole house to accommodate his needs, this was becoming a burning hole in Deb and Ron’s wallets. Living in a house with 3 teenage, growing children and 2 adults was hard enough to feed, but with Ron’s medical bills to pay for money started becoming extremely tight. “School shopping wasn’t an “end of summer” task anymore! Taking care of dad was,” (Nepomuceno).
About a year after adjusting to their new lifestyle they had to finally give in and get help, “We didn’t want to be that family asking the state for money when there was other people out there suffering more then us, but when we couldn’t afford grocery shopping anymore we knew we had to apply for food stamps,” (Nepomuceno). When you walked into the “Nepo” house you felt welcomed and safe, Deb was always cooking in the kitchen so as soon as you walked in you could smell the aromas in the breezeway where you would take your shoes off.
Ron and Debs master bedroom was on the second floor of the house making it extremely hard for Leah and her brother to take him to bed, as he was becoming weaker and his legs were starting to flop like jello. Leah had the bright idea to turn her sister, Raya’s, art studio downstairs next to the living room into Ron’s new handicap bedroom. “This made it easier for us to help him get in and out of bed, use the bathroom if he needed because it was right next to the studio, and simple for him to make it to the kitchen during the day if he was hungry,” (Nepomuceno).
A few more months down the road, Ron couldn’t walk anymore, not even with his cane. Leah’s family had help from friends and other family buying him a customized, motorized wheel chair that made it comfortable for him since he’d be sitting in it almost 14 hours out of the day. When I asked Leah how she felt about seeing her dad in a wheel chair everyday she replied, “It wasn’t easy, I could see the frustration in his face when ever we tried to help him, he always would say he was capable of doing it himself even though he really wasn’t.
This saddened us, all of us,” (Nepomuceno). You would think things like this would get easier since you’re dealing with it everyday and acquiring to the new life style, but it didn’t, it only got harder. Since Leah and her older brother were still in school, Raya was in art school, and Deb was still nursing to pay the bills, Ron was left at home alone for most of the day. As soon as Leah would get out of school she would go straight home to spend time with her dad and move his arms and legs around to get the blood pumping.
She quit track for a while because she felt she was abandoning her dad and she wanted to help him as much as she could. When Ron wasn’t able to be by himself anymore and was completely dependent, his wife Deb couldn’t take the stress and pressure anymore and left him for another man. This tore the whole family apart but Leah the most, she was the youngest. “I didn’t understand, my parents had been married for almost 25 years, she was supposed to be there for him until the end. She didn’t just abandon him, she abandoned all of us,” Leah explains, holding back a few tears (Nepomuceno).
When Leah realized her mom was no longer going to be around the house anymore, she took matters into her own hands and took action. She asked my mom and I for help finding Ron a full-time day nurse, when we couldn’t find one that was affordable my mom offered to help Ron during the day while we were all at school since she was an LPN. Construction in the house was still going on making it easy and accessible for Ron to wheel around in his big wheel chair, the bathroom was completely handicap accessible so that he could wheel himself into the shower.
Another summer had passed and Deb still wasn’t around and didn’t care to ask how Ron or even Leah, the youngest child, was doing. “This hurt a lot, it was like my mom didn’t care, never cared, how could she leave me with all those responsibilities I was only 15 years old” she said when I asked her how it made her feel (Nepomuceno). This was truly heart breaking to see, especially being so young and watching all of this happen to my best friend when there wasn’t much I could do besides be the best friend I could.
Ron soon couldn’t be in the house anymore and had to be moved into a hospital with a rehab facilitation. This made it extremely hard on Leah because the hospital was an hour away limiting the time she got to spend with her dad. “I started visiting every weekend making it extremely hard for me to have a social life or a boy friend. I started getting extremely depressed which was making my attendance at school and work suffer. ” After Leah put herself through drivers ed and got her license she used the old car they had to make these hospital visits.
The gas money was becoming a problem so she knew there was only one thing she could do, get a part time job working downtown. “I hated asking my dad for money and my mom was never there for us, so I decided to work instead of get back into track,” Leah said when I asked her what she did to afford the hospital visits (Nepomuceno). Leah hated being in the hospital all the time though, she said it felt empty and always smelt like rubber gloves. When Ron was moved to a better hospital that was three hours away, the visiting started becoming harder and Leah couldn’t see him every weekend like she was used to.
Now that she was spending more time at home by herself, cooking herself dinner, doing all her own laundry, going to all her own dentist and doctor appointments, she finally found time to hang out with friends during her free time. This is when she met Andrew, her first real boy friend. Andrew was an upperclassmen with a big loving family making it extremely exciting hanging out with them since her big loving family split and was no longer big and happy.
She started spending a lot of time there and eventually moved in with them when she decided she didn’t want to live by herself anymore since her older brother and sister were off in college. “It felt good to be in a family again, and have home cooked meals, it was nice getting love and attention from another mother, it was like god reached out and finally answered my paryers,” (Nepomuceno). Since Leah wasn’t visiting her dad as often they both got iPhones so they could FaceTime all the time anywhere and everywhere.
This made is easy on Leah, because she didn’t feel as bad that she wasn’t visiting him as much as she used to. She still got to see him everyday just over a phone. When Ron started complaining to Leah that he was always lonely and bored and the only thing to do there was hit on the hot nurses, (yes, he said this haha), it sparked a bright idea in Leah’s smart brain. She told him that he should start writing again and to tell the world what he’s been through, not only could it be a major success but it would be a good way for Ron to vent and get his thoughts down on paper.
“My dad always loved writing, on holidays he would write my mom lover letters and poems, he loved to sing so he would always write songs to play on the guitar,” Leah told me when I asked her why she suggested writing. Three years later Ron has now just recently finished his book inspired by his daughter Leah called “Artist not dead,” I recently just purchased it online and I cant wait to start reading it. All purchases are donated to ALS patients in the hospital he is staying at. Leah has by far been through more then anyone I know at such a young age.
She had to take the role of becoming her own parent and paying bills on her own. She did what ever she could to keep what was left of her family together by having family dinner sundays at the hospital with Ron and all his new friends and fund raising to make money to pay for her dads medical bills. She just recently got her own apartment and says she loves it! Her dad is still three hours away in the same hospital but Im afraid he doesn’t have much longer, he can barely talk anymore. “God only gives his toughest battles to his strongest soldiers,” Leah says (Nepomuceno).
She believes everything happens for a reason and she is almost thankful she experienced such a hard battle because now it has only made her stronger and she can handle just about anything. Leah is truly inspirational and always knows what to say and when to say it, she is the mommy figure in our group of friends and always makes sure we have everything we need. Im so glad I can call her my best friend and I had the blessing of being apart of her amazing and loving dysfunctional family growing up!