My family’s definition of normal is very different when compared to the average

family. Our days are consumed with constant worry, and hypervigilance. My sister has a

genetic disorder called Mowat-Wilson Syndrome that makes our family's life a bit more

challenging. She is 13, non verbal, prone to seizures, and is in need of constant care.

She cannot feed, bathe, or ambulate by herself. Her safety and care have become our

family’s top priority, and this comes at a personal cost to family members. Everything is

planned and prepared and spontaneity does not exist. Although that might sound like a

plethora of negatives to most, this is our family and our life and we truly are a loving and

happy family.

There is often a negative connotation associated with having a sibling with

special needs. People observe the difficult behavior, the random shouts or the constant

need for care as a burden. I view these perceived burdens as a blessing. I have learned

deep compassion and my patience has grown an immense amount through my daily

interactions with my sister. I have watched her struggle to communicate her needs

while being nonverbal. I have looked into her eyes and tried to understand what she is

trying to tell me. Her eyes speak louder than her voice ever will but we communicate

nonetheless. She loves unconditionally and will give hugs to us a hundred times a day

and will smile and laugh at any moment. I have learned the meaning of true happiness

just by watching her interact with the world around her.

With all the joy and happiness my sister brings to my life, there are still downfalls

to having a sibling with a disability. For example, we are unable to make spontaneous

plans, or leave on a whim. Time with my parents tends to be a precious commodity that

is often divided due to the needs of my sister. We can’t always do activities as a family,

and will have to split up since my sister can’t do certain things. Even though it has

become normal to provide constant care to her, giving her 100% attention all day

everyday becomes strenuous. It is difficult to enjoy activities to the fullest extent when

you must always be focusing on my sisters wellbeing and safety.

I have noticed that there is a common misconception with families that have a

child with a disability. People often believe this is a hindrance. While it can be true

sometimes, we still are able to retain a normal routine. My sister and I both go to school,
parents both go to work, I am able to play sports, and we can still go on family

vacations. We are still able to make it work, but activities may be limited.

I have grown independently as a person because of my sister. She has

taught me to appreciate the small victories in life and handle difficult situations with a

grain of salt. She has taught me to be compassionate and patient. The way she

approaches the smallest tasks like using utensils with tenacity and focus has taught me

gratitude and perseverance. Our normal in life is complicated and at times frustrating,

however it still can be comical and loving. Each day brings upon new challenges. These

challenges have enabled me to learn to be adaptable and overcome the smallest and

most difficult tasks. I truly believe that she came into our lives for a reason. She is

always the light in the dark, since she is not fully aware of the situation going on, good

or bad, you can always count on her to bring love and happiness.