Behind the Mic Book Review: Where the Light Gets In- Kimberly Williams-Paisley

The brain isn't called a ''super computer'' by accident, it really IS a super computer!  In it, we store memories that shape us as people, make us happy, make us laugh, smile and sometimes shed tears. We can reflect on these memories and they can give us confidence and strength, facing life with the most positive attitude when life gets rough.  What, though, if your ''super computer'' got a virus that completely erased all of your memories and changed you, in the worst way, so your not even close to the person you once were?  What if the person who is dealing with this condition is your mom?  The closest person to your heart whom you've relied on much of your life for advice and support... for everything!! In this heartbreakingly candid, yet positive memoir, Kimberly Williams-Paisley shows you a very personal battle that she and her family are fighting.  Her mom, Linda, being diagnosed with PPA.  "Primary Progressive Aphasia is a progressive loss of language function.  Language is a uniquely human faculty that allows us to communicate with each other through the use of words. Our language functions include speaking and understanding what others are"  Kimberly describes how her mom went from being the pillar of support, her ''private applause section", to someone who was easily frustrated, emotional, and finally left with no ability to communicate.  It became increasingly apparent that life was not going to be as easily lived like it once was.  Once the initial sadness and hopelessness left, the family banded together, supported one another, and have made the best out of life, for as long as they can!  Through the struggles and the pain, Kimberly and her family have accomplished the task of looking for the smallest silver lining.  Looking for where the light gets in, because Linda is not her diagnosis of PPA.  She is a person, and most importantly....she's MOM!

Get the book here: http://www.barnesandnoble.com/w/where-the-light-gets-in-kimberly-williams-paisley/1122312815?ean=9781101902950

Michelle Fischer is host of A View from My Window, a podcast produced by The Arc of Indiana

Sisters forever bonded <3 <3

My sister Christine and I.
Summer 2010

"Christine, let your sister in your room, open your door!"- this was something my sister dreaded hearing, as my mom said this from the bottom of the stairs.  I was usually outside her door, screaming at the top of my lungs, so my mom would plead my case for me!  My sister would eventually open the door, but with an "I'm doing this because I was told to, not because I want you around" attitude.  As her younger sister, everything she did was absolutely fascinating to me!  Her world of make-up, boys, and high school were "big girl" things that I just NEEDED to be in on!

Eventually, she realized that no matter what she did, nothing would ever keep me away!  She would come home from school, drop her books and run upstairs with her friend, Kim, and slam the door.....but, it wasn't long before I was crawling up the stairs to join them!

The truth is, my sister and I will be forever bonded, even though there is a significant age difference.  We are nine years apart and going through different times in our lives.  She is the mother of 3 beautiful children.....but I have yet to be a mother or be in a serious relationship for that matter - all those things aside though, the impact she has had on me as my sister cannot be denied!

She was nine when I was born and not one speck of jealousy was seen.  She had a human doll to love and care for, and care for me, she did!  Who, at nine years old, would put the interest of her newborn sister ahead of her own?  MY sister did!

She has always been a fierce protector of me.  While always seeing my potential, she never really saw me as disabled.  Always wanting me to be just like everyone else, she encouraged me to focus and move forward, not taking the easy way out!  She wanted me to have a good year during my freshman year of high school,  so she became my aide that year.  To this day we still laugh about the time we were looking for the girl's bathroom on the first day of school and though we both thought the bathroom looked strange....it took a while to realize that we were in the boys' bathroom!  We quickly made our exit!  Or the time when we were going between classes and she started talking to a teacher and without realizing it, she had pushed me into a classroom full of students during class!  Christine said the look on my face was hilariously priceless!! :)

Having a sister who has a physical disability has to have been hard on her.  I say it that way because she has never said it's been hard, but in the same breath, it must have been!  In most ways, I have had to take little steps to reach goals and have life experiences that relate to her in some way.  Usually sisters become bonded because they have gone through similar experiences....marriage, kids, boyfriends, break-ups, heartbreak....and I haven't even had some of those experiences yet.  So when I think of her, I wonder:  Does she ever feel like she has a sister who understands her and can relate to her?  Even though she sees me as not having a disability,  does she ever feel like the disability is a burden?

I never meant to be disabled, sometimes things just happen... but one of the most valuable gifts in my life, is a sister who loves me even so.  I have grown out of the need to do "big girl" things now, because I'm doing them....and loving it!  But I'm still fascinated by the person my sister is and has become.  I love my sister and will be forever grateful for the love she's shown me!  We are SISTERS!  Forever bonded!! :)

Mom: Thank you for being YOU! Thank you for seeing beyond the disability!

When a woman gets pregnant with her first child, there is always excitement that radiates from her, they call it the "pregnancy glow".  Happiness and joy fill the hearts of the parents-to-be, thinking of all the possibilities that will be opened to their little one as he or she grows.  Everything will be just perfect!  As a mom especially, you want nothing to be wrong with your child.  No one wants their child to struggle. They would rather take on the struggle themselves, rather than their child.

On May 8, 2012,  I interviewed Kerry Fletcher and Kathleen McAllen, two moms who have kids with disabilities. This interview was one of the most touching and emotional interviews I have done! And I thank both of these ladies so much for opening up their hearts and giving us a view into the joys of raising a child with special needs, along with the heartbreak of the diagnosis and the grief of their child having to deal with the lifelong struggle that they never asked for.  I admired both Kerry and Kathleen's attitudes when they talked about that first diagnosis.  Kerry looked at it this way : "We had been seeing delays for a while before we got the diagnosis, so the diagnosis was the cherry on top.  We knew why and we had answers so then we knew what direction to go."  When I asked Kerry how she sees the future for her kids, she said : "That's why we have the IEP set up at school to direct them.  We don't know what that future will look like yet, but we try to look at all angles and are hopeful that they will be independent and have jobs"

Kathleen said: "My husband and I are both practical people, and so with the diagnosis, we thought, ok, we're not crazy...this is real..now we have something to work with."  In the same breath, both moms agreed that there is a grieving of the loss of what you think is going to be.  It is a process for not only moms, but dads and siblings and even other family members who live far away. Kathleen gave a word of encouragement to people who make the extra effort to get to know those who have disabilities: "Make that extra effort to get to know them, you will get more than you give!"

The diagnosis of your child with a disability is not the end of the world.  It's the beginning of a new world... one to get used to and to be informed about.  Kathleen and Kerry have been through all the uncertainty, but have come out on the other side....and they hope that their story helps others to know that there is light at the end of the tunnel.

This interview also hit home for me.  My mom has been my cheerleader and advocate for many years now.  She has helped me through the ups and down of my teenage years into adulthood, coping with the shadow of my disability. The things she said and did allowed me to put the challenges aside and view these opportunities as a chance to grow and flourish and she was by my side through it all!! Mom: THANK YOU!!

Thank you to all the moms out there who care so deeply for children with special needs! Your love is such a gift to us! "A Mother's love is the fuel that enables a normal human being to do the impossible"-Unknown Author


For more information on chapters of the Best Buddies program, go to: www.bestbuddies.org to find a chapter in the state you live in.  For information locally, in the Indianapolis area, go to: www.bestbuddiesindiana.org

Michelle Fischer is the host of A View from my Window, an internet podcast produced by The Arc of Indiana