When I Had to Explain to My Sister With Special Needs That Our Dad Died
I lost my dad on a Saturday night, just as my husband and I were headed out the door to dinner with friends. No warning. I arrived at his home in time to see the paramedics trying to revive him on his kitchen floor and followed the ambulance to the hospital, where they gave us the official news I had been dreading.
He was gone. This man, so full of energy and a passion for life, was gone at 73.
Losing a parent suddenly would be devastating for almost anyone, but I didn’t have time to follow the “typical” grieving process. My mom had passed away eight years earlier. Now, without either parent, it was my responsibility to care for my sister, Wendy, who has special needs and had lived with our parents. The realization hit me as I sat in a dark waiting area in the back of the hospital where my older siblings and I had gathered.
Wendy was at home with family friends and had no idea what had happened to our father after he was taken away in the ambulance. She is deaf, cognitively delayed and has OCD. Although she was 42 years old at the time, she functions around an 8-year-old level. She adored our father. I would have to be the one to tell her the news and to figure out what came next.
Our older siblings are quite a bit older and two of them were out of the house by the time Wendy was 5 years old. She and I have always had the closest bond. She needed me to be strong and clear and patient with the many questions I knew she would have, questions I wanted the answers to myself. I wanted to break down and sob and wallow in the heartbreak of losing my father, but there was little time for that.
The next day, Wendy left the home she had lived in many years and moved in with my family in our home 15 minutes away. My husband, Steve, was so incredibly supportive and our children, Annie, 16, Caroline, 14, and Theo, who was turning 11 that very day, enveloped their aunt in so much love. They put aside their own grief about the loss of their beloved grandfather so they could help ease the transition for the aunt they adored.
The mutual love and adoration between her and my children had always been a beautiful thing to see. Wendy had spent many weekends at our home but she had always been a “guest” in our home. This would be a whole new world and I had no idea if we were ready for it.
Establishing guardianship; meeting with case managers; visiting Wendy’s workplace for adults with special needs; talking to staff; figuring out funding; finding medications and the names of her doctors; going through her piles and piles (and piles!) of papers that she liked to keep in her jam-packed closet; bringing over what she needed while trying to pare down what she didn’t… These tasks consumed our lives for many weeks after my father died. My dad always thought he had plenty of time left and he was resistant to my requests for a meeting to discuss the future and what I would need to know to have a smooth transition with Wendy so, although I knew I was to be her guardian, I didn’t know much more than that.
Wendy was understandably confused and had many questions. Even though we had lost our mom earlier, the circumstances were different because she had a longer illness. Wendy couldn’t wrap her head around why our father had been cooking dinner one minute and was gone the next. How could anyone comprehend that?
I cried myself to sleep on many of those early nights, the burden of doing the best possible things for Wendy and the toll of her unrelenting questions resting heavily on my shoulders. She was used to being a guest in our home, and was resistant to some of the new routines we needed to establish now that she lived with us. It was an incredibly trying time and many days I didn’t know how things would ever begin to feel somewhat normal again.
Our home wasn’t large enough or set up in a proper way to accommodate Wendy so, on top of everything else, we had to begin house hunting. When we discovered there was nothing out there to meet our needs, we made the decision to build in a neighborhood about a mile away. Our kids wouldn’t need to change schools, all of our routines could basically stay the same and Wendy could continue at the workplace she loved.
As weeks turned to months, information was collected and executor responsibilities were handled and ground was broken for our new home, things started to settle down. It was a challenging, heartbreaking and exhausting year, but little by little, we started to have happiness and laughter again. There was a day that Wendy didn’t have questions about Dad. There was a day when she didn’t resist the new routines. And then another. Hope is a powerful thing and I started to have it.
My husband and kids were steadfast in their support. My sister, Chris, was a constant sounding board on bad days, she helped me through so much of those early months of paperwork and cleaning up our dad’s house and did many things that would lighten my burden a bit. My friends rallied around me and listened when I needed to vent. And as Wendy started to be more like herself again, we embraced the joy and she showed her passion for life. There is no better medicine than Wendy’s laughter, no better comfort than her hugs – and she is generous with both.
11 months after we lost my dad, we moved into our new home. A fresh start has never been more welcome and this one came with many unexpected bonuses. Our new home is on a circle full of other homes and our neighbors have welcomed and embraced us so generously. They adore Wendy, they are patient with her and they are so supportive of us. Many of them have learned some sign language and the many kids in the neighborhood consider Wendy one of their friends now.
She and I even started teaching a twice-monthly sign language class to several of the kids in the neighborhood and they are picking it up so fast! They play outside with her, go for walks with her and invite her over to color pictures or come to our house to play games and do art projects with her. Last summer, we bought Wendy a three-wheeled bike and many of the neighbors came out to see it when she went out for her first ride. She was thrilled! We feel very blessed to be here.
Out of a very dark time came a lot of hope and joy. Living with Wendy certainly has its challenges and we still have plenty of difficult days. However, the good moments far outweigh the bad. Her laughter always seems to hit the reset button just when we need it. Our children have learned so much from this experience, about how to support people through a difficult time and what it means to love unconditionally — something Wendy does every single day.
Sometimes people ask me where I find the patience and strength to do this every day. My parents were a big part of that. Their commitment to Wendy was inspiring and they set a beautiful example. Having a support network is huge, from the people right here in our house to the extended family members, friends and neighbors who have our backs.
And, most of all, Wendy. Her beautiful, smiling face and her belly laughs and the way she reminds me many times a day that she is “my sister,” as if I could ever forget. Just when I think I am hanging by my very last thread, she will do something so sweet and loving. Wendy herself provides that strength most days without even knowing it.
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