Wednesday, May 2, 2012

OK So throughout my blog I feel that I have look solely at siblings who live in the home with their disabled sibling and that are younger.  I have a close friend who has a disabled sibling and my friend is 26 and does not live with her sibling.  Her sister cannot live alone and my friend takes her many, many places, and her sister is a huge part of my friends life..here are some questions that I asked her and her answers. 


1.      What do you feel is the greatest reward of having a sibling with a disability?

Having a sibling with a disability has changed my life in many ways, in good ways and in sad ways.  And like anything it comes with its downfalls and rewards.  I would have to say though; at the end of the day the awesome rewards that Lori (my older sister) has brought to my life and my families lives is something we all cherish every day.  When I try to narrow it down to just one greatest reward I really cannot because after Lori had her cardiac arrest and anoxic brain injury my life changed forever in a positive way.  I am not going to say this journey has been an easy one but the small and big rewards definitely make it all worth it.  I guess I would have to say one of the greatest rewards is the fact that I get to make a difference in someone’s life every day. And by this I mean that Lori is always so appreciative of everything I do for her big and small.  I can make her day just by taking her to Wal-Mart or out to eat.  Not everybody can say they can truly make a difference in someone’s life everyday but with Lori I can and that is such an awesome feeling to have.  Also, another great reward is that Lori has taught me so much even though she was not intending to.  She has taught me to be thankful for the little things, to always cherish your family, and to never judge others by how they act. But instead to be understanding and embrace their differences because that is what I hope people would do for Lori as well.


2.      What is the biggest struggle you face family/socially?


The biggest struggle I believe that we as a family face is socially with Lori.   I say this because people are not always understanding or receptive to Lori’s behavior. I believe this is our biggest struggle because from appearance you would never know that Lori has a disability but once you interact with her then you are able to tell.  I feel like most people do not know how to react to Lori because she can come on a little strong and if you are not used to her then it can seem a bit overwhelming.  For that very reason, Lori does seem to struggle more in social situations especially when she is faced with a great amount of environmental stimulation.   I think this is a struggle for Lori also because she is trying to figure out where exactly she fits in, she knows that prior to her anoxic brain injury she was completely normal 17 year old, now 12 years later she has a hard time with little things like staying calm, communicating appropriately with people, and not having much short term memory.   As her sister, social situations are the biggest struggle for me to watch Lori in.  I see her trying so hard to fit in with everyone else, but as hard as she tries that is not usually possible.   To watch her struggle this much breaks my heart because I so much would love for her to have all the things most people have that they usually take advantage of.  But as much she struggles in social situations, she is always excited to go out with my friends and me, so I will continue to take her out into social situation because she truly does love to be “normal”(whatever that means). 



3.      Do you feel like you have a deeper/richer appreciation for your family and your life?

Prior to Lori’s disability my family was always a very close family, but after her anoxic brain injury I do believe that are family definitely became much much closer with each other.  My entire extended family has also shown support for Lori and has always been willing to help Lori and us in whatever way possible.  I truly believe that Lori is where she is today because of the courage and faith that we have shown over the years.   Working in health care I have seen many families fall apart when faced with having a child with a disability and I have seen many families like mine come together to only be a stronger unit. 



4.      What’s the most embarrassing/memorable/funny memory you have with your sibling?


The most memorable moment I have with Lori was when she was first waking out of her coma.  When she woke up we were unsure of how much anoxic brain injury she had actually suffered, so we were amazed to see that she was actually starting out at about an infant level again.  Being able to be by her side and getting to see her learn to walk and to talk again was truly something amazing to see.  I vividly remember all of us thinking how cute it was just to see her pucker her lips for a kiss, we thought this was so special and we were just so happy to see that she recognized all of us and remembered we loved her so much.   A funny/embarrassing moment would have to be when Lori was first discharged from the hospital she was convinced she was in the army.  One afternoon we were at the mall and after losing her in the mall, I was finally able to locate her at an army recruiting store saluting the officer there and telling him she used to be one them. The whole incident was so funny and was one of the many times where I learned there was no sense it getting embarrassed about that stuff but to just laugh it off cause there was nothing else I could do!

I have known these sisters for 3 years now and Lori has been around for most of those years.  I have come to love and adore Lori.  We take her many places with us and we just take care of her.  She can drink and dance like anyone else, but you just have to keep track of her.  What caused her seizure is a heart disease that many athletes end up dying sparatically from.  Lori's father, other sister, and nephew all have the disease, but her father only found out that he had it after Lori's accident.  I know how much Lori means to my friend and I also know that it is not always easy.  My friend's older brother who lives in Columbus doesn't help out much and neither does  Lori's other sister.  My friend and Lori's parents assume the responsibily for Lori.  At times Lori will remember that something happened and she will tell you that she won;t rememeber anything in a few mintues.  It is very sad but overall Lori is a very happy woman stuck in a 17 year olds body.  She is great with kids as well.  I thought this would help give insight of those who are older with disabled siblings.

1 comment:

  1. Hi Nicole - Your friend spoke of being "thankful for the little things, to always cherish your family, and to never judge others by how they act" because of her experience with having a sibling with a disability. That is also what the families in the video I watched from your blog stated; having an appreciation for others. As future educators it will be our responsiblity to help foster and develop this in our students. The discussion with your friend highlights how it is vital for families and friends to come together and work as a unit to support the child with a disability. I wonder if there were any organizations or support groups that were helpful to them?

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