This post was not researched. I have no famous quotes to share. This
post comes from my heart. It comes from 35 years of experience. I want
to preface this post by saying that my parents are great people. I truly
believe they did the best job raising us that they knew how. They had
no instruction book on parenting, especially when one child has
significant disabilities. My sister has Spina Bifida.
My brother was six years old and I was four when our sister was born. I
remember very clearly the day my mom came home from the hospital after
my sister’s birth without a baby. I remember my mom and dad telling my
brother and me that our sister was sick and couldn’t come home. From
that moment, at the ages of six and four, my brother and I knew that our
sister would need our parents more than we needed them. Without ever
saying a word, we knew that we needed to take care of each other. And so
it was. Our parents spent almost every summer at the Children’s
Hospital three hours from our home. Our grandma stayed with my brother
and me most summers. I made sure my brother’s clothes matched. He made
sure I drank my milk and ate something healthy. We both had summer
birthdays that we celebrated in the fall when everybody was home from
Now, I’m not trying for a sob story here. I just want to paint a very
clear picture of the responsibility I felt to take care of myself so my
parents could take care of my sister. They never asked this of me. It
just was. And I accepted it. And I love my family to pieces. But there
are memories of my childhood that do not include my parents. And their
are things I didn’t get to do because my sister needed them more. The
purpose of this post is to give parents some insight into what siblings
of children with disabilities may feel. Of course no two families are
the same, but I would like to give a list of things that I wish were
different about my childhood:
1. I wish I could have celebrated my birthday on July 20 every year. That is the day I was born.
2. I wish my parents could have gone to watch my gymnastics lessons and softball games.
3. I wish I didn’t have to learn how to give an enema at the age of 8.
4. I wish I didn’t have to leave class in fifth grade every 2 hours to take my sister, who was in first grade, to the bathroom.
5. I wish I didn’t feel guilty for wishing these things.
On the other hand, I also have a list of things I am grateful for because I have a sister with a disability:
1. I’m glad I learned how to love people unconditionally and see the value in every human life.
2. I’m glad that my brother and I grew up as best friends and had such a special relationship.
3. I’m glad that, even though my parents seemed to care physically for
my sister more than they did me, I never doubted that they cared for me
emotionally just the same.
4. I’m glad that I chose a career where I get to impact change for
people with disabilities and help them to achieve fullness of life.
5. I really, truly, from the bottom of my heart, am glad that Jill is my sister.
Here are just a couple of practical suggestions for parents to learn from my experience:
1. Enlist a support system…friends, family, neighbors….whomever is
willing to be there for your family. Allow others in your support system
to babysit for your special needs child every now and then so you
can do something fun with their siblings.
2. Seek services through your State when your child is young. There may
be a waiting list. You do not have to do this alone. Look into respite
services to give you a break so that you will be fresh and completely
present when your family needs you.
3. Do not forget special milestones of the siblings. The little things really do matter.
I want to end by saying I love my family very much. My experiences and
relationships within my family have shaped my career, my attitude, and