I recently walked out of Target with a cart full of supplies. There were sheets to match a quilted comforter, plush towels, shampoo and conditioner, a few coordinating picture frames and the obligatory mid-night snacks. “Off to college I assume?” the checkout guy asked. I nodded politely with a slightly nervous giggle. Was it worth explaining to this middle aged stranger that this was all for my brother who was about to move into his own assisted living unit for 24/7 care? Was it worth explaining the whole story?
My cousins attend top schools, my oldest brother is about to graduate from the U of Md, but it is my second older brother whose path has had the greatest impact on my life. Born just 15 months apart, we shared a side by side stroller, napped in the same crib and were often asked if we were twins. We played together, swam together and made lots of messes together. What toddlers wouldn’t enjoy cracking a dozen eggs on the kitchen floor? Soon though, I passed him physically, mentally and emotionally because Tucker was born with Down Syndrome. Down Syndrome (also known as Trisomy 21) is a genetic disorder that causes a wide range of physical and developmental disabilities. Tucker’s version is more complicated, though, since he happens to be non-verbal and often aggressive. It has been a challenge for my family, to say the least.
For the brief time that Tucker was the bigger big brother, he was a bit of a bully. He did not have words to express himself, so he used his fists, feet and teeth! To this day, I have a cute little dimple on my upper left cheek, thanks to Tuck! I got good at hiding and would create places to play with my Polly Pockets under the dining room table and behind the sofa. Once I surpassed Tucker in size, however, he left me alone and targeted my little sister instead. This is when and where I learned to defend the underdog. I would look out for Lanie, but at the same time, I was fiercely protective of Tucker to anyone who treated him unfairly. That wasn’t always easy. There were times his behavior was so atrocious that we had to leave restaurants and grocery stores pre check out. There were times he would wander off and we had to send search parties throughout the neighborhood to find him. There were times when my friends were over for a play date that he would drop his pants and run naked around the dining room table. Talk about embarrassing. But mainly, Tucker was teaching me about life. Things are not always fair. Thing are not always easy. Tucker has taught me patience and tolerance and acceptance. And the meaning of unconditional love. I have used this patience and understanding when dealing with others, both those with and without special needs. Thanks to Tucker, I like to help rather than give up on students around me who struggle, either with school work or boyfriend troubles.
In middle school, I offered to be the partner of a classmate with Down Syndrome. As his study buddy it was my job to help him take notes and make sure his classwork was complete. He showed his appreciation daily by interrupting the classroom teacher to tell me he loved me as he blew me kisses. My parents knew nothing about it until his mom called to thank my mom. I didn’t do it for the recognition. I did it because it made his day a little better. Mine, too.
Of the four siblings in my family, I am the one who best manages Tucker. We have a respect for one another to which he responds positively. He is 19 years old now and after a lengthy legal battle, Tucker has moved out of our house to his own residence near Chimes School. After years of constant stress in the house, it feels rather strange. No more Wiggles on a continuous loop, no more Tucker tantrums, no more trails of spit, no more empty boxes of cereal and half eaten bagels, no more broken glass. However, I do miss my early morning alarm clock that was Tucker, I miss his enthusiastic greetings followed by a high 5, I miss my helper at dinner time who so proudly cleared the table, even when we were not quite finished, I miss my dance partner. I miss our complete family unit. I look at Tucker’s moving out as a milestone. It is as if Tuck has headed off to college, living in his own off-campus housing. Something I look forward to myself in the not too distant future.
