Joni and Friends Blog

I Want Her to Know


Growing up with a sibling who has a disability can be challenging, but it can also be a great blessing.

Meet Gideon Amick who is now 15 years old. When Gideon was almost 2 he became a big brother to Sarah who has Down syndrome. On Gideon’s 2nd birthday, Sarah had open heart surgery. In many ways they have the same birthday – Gideon’s birthday is the same day Sarah was given new life through her heart surgery. She was just 6 weeks old.


What should we know about Sarah?
Sarah is fourteen years old, she is going to be in the seventh grade, and loves watching movies and singing.

How would we describe your relationship with Sarah?
I like to spend a lot of time with Sarah, and know her well. She is my sister. I treat her like she is my sister and she treats me like l am her brother. Sometimes we tease each other, but I still care about her. Not everything is perfect, but I can’t name a single relationship between people that is. 

What do you want people to know about Sarah?
I believe all people were created equal. Being created equal does not mean physically but I believe that it has to do with how we are spiritually. Sarah is a human being and saying that she’s perfect devalues her as a person. No human is perfect and saying that people with disabilities are, is saying that they are not the same as the rest of humanity.

Do you think having a sister with disabilities has affected your personality?
I think Sarah having a disability has affected my personality. I think everyone with a sibling with disabilities is changed in some way. I think it has made me a little more patient, and a little more comfortable with being around people who are different from me. I think it has given me compassion for families impacted by disability. I also think it gives me a humility I otherwise wouldn’t have. I know that saying I’m humble is not humble at all, but it has made me realize that I am not any better than any other person, disabled or high functioning.

Can you imagine what it would be like if Sarah did not have a disability?
I think if Sarah didn’t have a disability my life would be very similar to other people’s lives who don’t know anything about disability. I would probably not be that interested and feel uncomfortable around people with disabilities.

If I could I don’t think I would change Sarah having a disability because then she wouldn’t be Sarah. I do think I would want her to have a healthy heart.

What annoys you most about how people treat Sarah?
When people treat Sarah like she is a little kid or they treat her like she has some type of disease, that can annoy me.

How do people at your school/church/after school groups treat Sarah?
I think it depends on the person. If the person has a background with people with disabilities then they might seem comfortable. If it is someone who has no experience at all with disability then they might ignore Sarah completely.

Has something ever happened to Sarah that scares you?
Sarah needed open heart surgery when she was first born, and she could need it again. I hope she doesn’t, but that doesn’t mean that it won’t happen. This scares me.

Do you ever feel invisible?
I feel like any other sibling. I think someone can feel at times that they are not getting the same attention that their sibling is getting even if the sibling does not have a disability. I think the only time I feel overlooked is when someone meets my family and goes straight to Sarah rather than finding out about our whole family.

If you had the choice to get rid of all disabilities, or just the negative reactions to them, which would it be?
People have bad reactions to people if they have disabilities or not. On the other hand, sometimes a disability can be a part of a person and it would change them not to have it. Joni said that she would rather be in a wheelchair with Jesus than to be out of one without Him. I don’t think that disabilities are bad so I would get rid of negative responses.

What’s the best advice that you can give?
I think if I were to give some advice it would be to treat Sarah like she had no disability and like she was a person like yourself, which I believe she is.

What life lesson have you learned from having Sarah as your sibling?
I have learned that I can’t complain about how God made me, and that there was the same chance of me getting born with Down syndrome as did Sarah.

What is the toughest thing about having Sarah as your sister?
I think having a sister with disabilities is hard because it makes me different. If everyone had a sibling with Down syndrome no one would care and I wouldn’t be writing this right now.

If you had one wish for Sarah what would it be
I definitely do think that Sarah is happy, but I would want her to be happy.

 


Real Families, Real Needs

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