“Zoeee, where aaare youuuu?” These four wistful words have followed me up staircases, through telephone receivers, and across thousands of miles. Falling somewhere between a concerned question and a playful challenge: never shouted, always sung. They are the four most powerful words my brother has ever spoken to me.
To say that Evan is just my brother is an understatement. He is my dearest friend, my confidant, and my biggest teacher. His heart spans oceans, and his smile is simultaneously mischievous and shy. My love for him truly knows no limits!
Evan has significant developmental disabilities and requires constant, individualized care. I myself was born with a cleft lip and palate that required multiple corrective surgeries and therapies. Between the two of us, we can sincerely call Lucile Packard Children’s Hospital a second home!
Having a brother like Evan has completely changed my life. He is my driving force, my inspiration, and has taught me to walk through the world with an open heart and mind. He has taught me the true meaning of acceptance, non-judgment, and self-awareness. He has excellent taste in music, loves spending days at the beach, and gives out kisses and hugs liberally. Most importantly, he has taught me how to have a sense of humor in even the most challenging of situations.
I have not always felt this way. The love has always been there but I have often felt angry, jealous, and resentful. Once I grew out of throwing tantrums, I developed a different tactic: avoidance and withdrawal. I avoided telling my parents about my conflicted feelings because I imagined it would only burden them further. I withdrew emotionally and presented a competent, independent, and stoic exterior. In many ways, this gave them great relief—I seemed to be coping well with our combined circumstances and moving through the world successfully. On the other hand, it caused them considerable concern as they could sense that I was not being authentic with them. I can say that to this day, we are still working out the kinks in our communication but we have grown tremendously as a family unit. Day by day, we are getting to know him and ourselves in a completely different light.
One of the biggest lessons I’ve learned from Evan is my tendency to put others’ needs before my own. The balancing act here is that Evan is extremely vulnerable and his needs have always and will always come first in our family system. As an adult living independently from my parents and brother, this has become easier to cope with. However, it has greatly impacted my line of work and the projects and people I become involved with. As an adult, my biggest challenge has been balancing feelings of guilt for having a life separate from Evan: for being able to move freely throughout the world, to have a job I love, to move in with my boyfriend, to do things he may never be able to do. Survivor’s guilt is my own burden, one that I am shedding slowly but steadily.
The best advice I could offer other sibs is to reach out and connect with a sibs yahoo group or join SibNet on Facebook–in this day and age there are growing networks for siblings of people with disabilities—many of which did not exist when I was growing up. I found writing to be a very useful outlet when I struggled to communicate my feelings to my parents and now there are many forums to help facilitate that.
Above all, know this: you are not alone. Get to know your truth, and if possible, find safe ways to communicate that to your parents so they can support you and respect your boundaries. This is not always easy. Sometimes you have to make the difficult decision to set limits and stand up for yourself even when your parents may have another perspective on what is best for your sibling. It is truly essential that you take care of yourself first and foremost before deciding what your role will be in your sibling’s life in the future.
My advice for a parent or professional interested in supporting a sibling of someone with special needs is simple: take the time to listen. Many siblings do not have the opportunity to express their feelings about their siblings in a safe environment, so try to provide them with as many opportunities as possible! Feel free to ask clarifying questions, but refrain from making assumptions or passing judgement. For parents especially, try to make the effort to spend one on one time with your child, even if it is just for a few minutes a day. It makes a huge difference and helps us feel supported and seen. Maybe plan a special day (or half of a day) where you do an activity that your child particularly enjoys, without their sibling present. This could be getting ice cream, going to the park, or seeing a movie!