By Traci Ellis
I am the big sister of a brother born with special needs. When a child is born into this world, there is always excitement and attention focused on the new baby. This lasts until the novelty wears off and things return to a new normal. When that baby has special needs, the attention never really dies down. So how does a big sister fit into all of this?
I am ten years older than my brother, and even before he was born I had already planned all of the neat things I was going to teach him and do with him. I was going to be the best big sister around. I was sure of it. Although it was 25 years ago, I remember the day he was born very clearly. All of the grownups were carefully not to worry or upset me, but it was very clear something was not right. My brother was very small when he was born and had many medical problems. The doctors were not even sure he would live. In the hours and days that followed, the adults spent a lot of time crying and whispering. I felt very detached, scared, alone, and even a little angry. This was not the baby brother I thought I was getting. I had a hard time even wanting to go see him at the hospital at first. I didn’t want to begin to love or even see a baby that might not make it. That would just be too hard.
As my brother grew, our family life revolved around him. Doctor appointments, therapy, frequent hospitalizations, and 24-hour home healthcare nurses became a routine part of our lives. People always said I was mature for my age, but maybe it was because I had to be. I had to be okay with my brother always getting extra attention, gifts, and more of my parents’ time. I felt like everything in our lives was focused on him, even as we got older. I had to adjust to crazy schedules, last minute changes of plan, and less time with my mom. I had to live with disappointment when I felt my brother ranked as more of a priority in our house due to his medical needs. I felt as though I had to be a protector of my brother, encourager for my mom, and informer to all our extended family and friends. I suppose my role, as big sister was set. It may not have been the way I had envisioned it, but it was nonetheless set.
Having said all of this, I wouldn’t trade my role in my brother’s life for anything. He is a big reason I am who I am. He has given me the gift of deep compassion and acceptance of others. He has shown me the true meaning of never giving up. He has taught me about courage, bravery, joy, unconditional love, endurance, and why it is so important to appreciate the little things that make us happy in life. My brother is a walking miracle. While I may not have been given the baby brother I pictured, I am eternally grateful I was given the gift of a brother with special needs. He is one of the biggest blessings in my life, and I am very proud to be his big sister.