by Brooke Heinrich
Arizona
Growing up with a sister with Down syndrome is special!
Arron, also known as My Honey or Our Honey to our family, is my big sister and three and a half years older than me. I actually don’t know when I first realized my sister had Down syndrome. In our family, that didn’t matter! We just loved her and treated her like everyone else. It was society that made me aware that Arron was different! When I was younger, I noticed people staring at Arron which really bothered me! When I was a little girl, I remember being in the check-out lane at the grocery store and some kids were staring, I snapped at them, “it’s not nice to stare.” I also remember as a teenager taking Arron with me to an exercise class and finally telling a young lady that was staring, “if you have any questions, just ask.” These weren’t the only times I stood up for my sister. I was very protective of her and felt responsible for My Honey, which continued throughout her life. I feel lucky I got to grow up with a sister with Down syndrome! Arron made a huge impact on my life and the lives of so many others. My kids have all chosen college degrees and careers working with people with disabilities or in social services. In 1997 when I found out I was having a baby girl, I knew her middle name would be Erin. Little did I know Arron Renee and Bethany Erin would have an incredible bond that only grew the last year and a half of Arron’s life, when Bethany moved to Fillmore, California to become one of Arron’s caregivers.
I have so many funny, sweet memories with Arron! She was my first playmate and thinking of my first memory with her, I was about four so Arron would have been around seven and a half years old. I remember the house we were living in so well with its white windows and red curtains. There were big cement steps leading up to the front door and Arron and I liked to play Barbies outside at the bottom of these steps. On this day, it was a beautiful sunshiney day in Orange, California. We had Barbies spread out with the Barbie swimming pool full of water, and lots of other Barbie furniture, dolls and clothes scattered around. Do you ever have those moments when everything seems just right? The temperature is so perfect you almost can’t even feel a temperature, the sun is glistening through the trees and time just seems to stand still. That’s how it was on this day. It was Arron and Brooke, Brooke and Arron…two little girls, friends, sisters playing Barbies for hours. I felt so content! A lot of times that’s how I felt when I was with Arron, content! We actually played Barbies together for years and it’s something we loved doing.
I enjoyed watching Arron participate in Special Olympics over the years. One time when she was a teenager and competing in bowling, she missed the pins, turned around, pursed her lips and flipped off the entire audience from one end of the alley to the other, as if it were our fault! That was embarrassing! Arron was definitely sweet and innocent, but oh my gosh, she had a major potty mouth and could use the B word and F word way too appropriately! I never understood how she knew the right context? Arron knew when she’d done something wrong and would scold herself, “Arron knock it off!” Arron didn’t like time out but she was really good at saying “I sorry” afterwards. I wish more of us were better at that!
We graduated from high school on the same day despite our age difference and going to rival high schools in Flagstaff, Arizona. After high school I went to college and Arron started going to her workshop and day programs. I stayed in Flagstaff for college so that I could be near Arron and continue to see her regularly. I’d secretly follow her home from the bus stop to make sure she’d made it safely. We’d go on lunch dates, shopping and watch Days of Our Lives together. Shortly after I graduated from Northern Arizona University and moved away, Arron moved back to California to live with my dad and stepmom where she remained for the second half of her life. Arron and I missed living near each other and looked forward to our visits. Whether she was visiting me or I was visiting her, Arron would ask me, “can I sit by you?” “can I sleep with you, please can I?” Of course, the answer was yes!
To me, our relationship was the epitome of unconditional love. I love that little lady like one of my own kids. I have a lot of favorite pictures of Arron and I, including this one.
This was about 12 years ago when our family met up for the weekend in Casa Grande, Arizona. In this photo, Arron and I were snuggled up on the hotel room bed, at this moment we were just looking in each other’s eyes and I asked her, “will you marry me?” And she replied, “myaaaa.” We were in love! I just really don’t think I can put into words the love we shared and what she means to me…true, unconditional love! Arron didn’t ask for much; just love me, take care of me and keep me safe. When we’d say “I love you” to Arron, she’d respond “I know.”
Arron adored her dolls! Over the years, she ended up with six of them, some were boys and some were girls to her and one of the boys was named Georgia! She took very good care of them. She “nursed” them, changed their diapers and tucked them into bed way too tightly every night. Arron also loved babies; her nieces and nephews, others babies and pregnant ladies. She always asked, “boy or girl?” pointing at the baby or big belly. And Arron could predict if someone was having a boy or girl! We think her predictions were 100% accurate. In this picture, about five and a half years ago, I’d just had my thyroid removed and she was visiting me in my hospital room after surgery.
I was not feeling well at all but just holding Arron’s hands felt nice. And then all of the sudden, she points at my tummy and asks me, “boy or girl?” Because I was in the hospital, she thought I’d had another baby!
These last few years were hard! Our Honey’s little body started to slow down, accelerated aging gripped her, Alzheimer’s disease crept in and her words became fewer. My trips to California became more frequent to help care for Arron and spend as much time with her as possible. I was caring for my older sister like I had my own children when they were little. The hospitalizations were hard and scary and every time she came home, she had declined a little more. Our moments became much quieter and embracing every moment became more real. Our favorite thing to do now was cuddling on the couch in the den. We’d get Arron all settled in and reclined with her feet up and her green blanket draped across her lap. She’d usually have the cat and/or a dog snuggled up on her. There weren’t a lot of words and a lot of times Arron was sleeping, but just holding her hand and being next to her was enough. I miss those times so much!
Just like I have a first memory of Arron and Brooke, Brooke and Arron…I also have a last memory we made together. It was Sunday, April 24, 2022 and also a sunshiney day in California, but this time we weren’t outside in Orange playing Barbies, we were inside the house in Fillmore. Our family knew this day would be different than any other! We spent the day at Arron’s bedside laughing, crying and telling stories. Family from San Diego and friends from Fillmore came to visit. It was a surreal and heartbreaking day! Evening settled in and I was holding Arron’s left hand and my dad was holding her right hand. I remember looking at Our Honey peacefully lying in her hospice bed and perfectly surrounded by her family, each one of us touching her. At 7:56pm our little Arron Renee, Our Honey took her last breath. She was safe and so loved and I know she felt it!
I really could go on and on and tell so many more stories about my sister and the life we lived together. I am so proud and grateful I got to be her little sister! She taught ME about unconditional love, acceptance, inclusion and what is really important in life. She helped shape me and my children into who we are. She made a difference in our family and so many lives. I believe Arron made us all better people! The world IS a better place because of Arron!
I always thought I wouldn’t know how to live life without My Honey, and I certainly never wanted to! I had 51 years and 11 months with this strong, amazing, loving, funny, ornery, cute little lady. Life just hasn’t been the same. It’s been the most challenging time for me and a very difficult and transformative journey. I’ve experienced a huge loss not being with Arron or taking care of her. Some days I don’t know who I am without her here. Grief is very misunderstood, and a very sad and lonely time. I do not feel our culture properly knows how to acknowledge grief and support others during this time. It seems like people don’t know what to say and the platitudes are not helpful. Connecting with others who’ve lost a sibling with special needs has been very helpful. I’d never spoken with anyone in my same situation before Arron passed away. After that first phone call with a peer, I felt like I might be ok. I had hope! I’m now learning to live with grief as a companion and move forward while I honor my sister. I understand my grief is here to stay as I continue to “grieve fully and live fully” in a physical world without My Honey. The love I have for Arron is still here and I miss her every day!
Brooke Heinrich lives in Northern Arizona and loves spending time with family, hiking, golfing and skiing in her beautiful mountain town. She and her husband recently became empty nesters of a blended family with six adult children, three daughters-in-law and two granddaughters. Brooke has a background in education and psychology and she is passionate about helping others and normalizing grief in our culture.
After Brooke’s precious older sister with Down syndrome passed away in April of 2022 she was sent on a painful, confusing and unwelcomed path of grief. Living without Arron, her Honey, riddled her! In an attempt to process her grief, and desperate to heal while honoring her sister, she signed up for a Grief Educator Program taught by renowned Grief Expert David Kessler. As a Certified Grief Educator, Brooke now supports others in grief by offering peer-to-peer support to siblings experiencing the loss of a brother or sister with Down syndrome and Alzheimer’s disease. She also facilitates grief support groups to those experiencing the loss of a sibling or loved one with a disability. Brooke understands how hard it is to navigate grief and the days of living with a grieving heart. Helping others has become an important part of her grief journey.