Guilt and Peace

The other day I read a Batten mom’s status on Facebook and I gasped.  Why?  I was surprised, rather shocked at what she said.  It was brave, it was honest and it was something I have thought but never said for fear of judgment.  (Okay, I said it to one person and I think they understood what I meant.  I hope).  

  

I quote, “A guilty feeling comes when we look forward to God calling our daughter home.”  I have thought about Kate’s homecoming and I feel happy for her.  I look forward to her going home to heaven.  The minute I think this guilt pours in like hurricane.  My heart breaks, my fears turn my path dark and I question if my feelings make me evil.  How can I feel happy about her death? 

I know if/when Kate passes away I will feel pain like I have never felt before.  NOTHING in this life can prepare me for the pain, devastation, emptiness, and sorrow I will feel.  I know I will never get over the pain of saying good bye to her.  I still pray each day, several times a day that I never know this pain.  I pray for a miracle!  But when I think about Kate going home, meeting Jesus, and dancing in the presence of God, I smile.  I picture her being healthy, happy, and enjoying life the way all children should.  I hear her voice and giggles.  I even hear her sassy personality.  This makes me smile.  This makes me happy.  This is what allows me to look forward to life without her.  Even now, as I type that sentence, the guilt over powers me and I have to remind myself that I am not happy about life without her.  Rather I am happy for the life she will have without us. 

My goal in life is to make it home to heaven.  I have said it hundreds of times – “take me, am ready.”  This earth is temporary.  The things on this earth are temporary.  I want to see my permanent home and be in the most glorious, peaceful, and holy place.     Even more than that, I want to meet my savior face-to-face and be in His presence.  If this is the goal I have for myself and I look forward to it, why wouldn't I want this for my family and friends and look forward to it for them as well? 

I cherish each day with Lauren, Kate and Brock.  I am thankful for each day we wake up together and enjoy the mundane things of life, along with the exciting things.  I don’t take one day for granted!  And I look forward to all of us finding our way home to heaven.  Going forward I will look forward to it without guilt.  Rather I will feel peace over the idea of us being a family in Heaven.

Staring, teaching and accepting

Over the weekend we went to Washington DC.  Our vacations usually consist of going to the Batten conference, but this year the conference is in Columbus, Ohio, so we decided to take a “real” family vacation.  We each had one thing on our list that we really wanted to do but other than that we were excited about not being on a schedule, not waking up to an alarm, and just hanging out.  On our last day in DC we decided to go to the Smithsonian Zoo. The outside temperature was nice so we expected to see a lot of the animals.  However, there was something else more interesting at the zoo than the animals.

From the time we entered the zoo it was apparent that Kate was more interesting than the pandas, elephants and tigers.  We couldn’t go more than two minutes without someone staring at her.  We are use to young kids looking at Kate and saying things like “what’s wrong with her”, “why is she in that (wheelchair)”, etc.  What I am not use to are adults staring at her.  Brock and I both said we should put a note on Kate that read “I am a person, not an attraction at the zoo.”  Within an hour of entering the zoo we left.  We left frustrated, mad and hurt. 

I understand seeing a child in a wheelchair isn’t a daily occurrence, but when did we as a society forget that it is rude to stare?   I understand why children gaze, but I don’t understand why adults are so fascinated by Kate and children like her.  Honestly, I think anyone over the age of 8 should know better than to stare at someone, regardless of the reason why.  By the age of 8 they have attended anti-bullying assemblies at school (which includes bullying children due to disabilities), and have seen TV shows that include disabled children, such as Sesame Street, Little Bill, etc.  

You would think by now we would be use to people staring at Kate and some days we handle it well, but other days, it is all I can do to not scream at people when I see their eyes fixated on her.  How can we teach people to be polite and not stare?  In my opinion, it starts at home.

1. Parents need to teach their kids that staring at someone is rude.  They need to teach their kids that people are different.  Some people are tall, others are short; some are skinny, others are not; some walk with their legs, while others have prosthetics or use a wheelchair.  You don’t need a special moment to teach this common courtesy.  There are children books that show diverse characters, TV shows, etc.  When you are walking the grocery store, at church or just out and about, you can take a moment to show how beautiful people are and how their differences make them special.  

2. When a child says something like “what’s wrong with her”, don’t get embarrassed and try to shut them up.   Rather, answer the question.  Make it a teachable moment.  While you are at it, show them how they are more alike than different.  Say something like “look at her shirt, it is pretty?”  I remember walking through a NYC hospital with Kate.  We were staying for a few days so we had suitcases.  A small child, probably not even 3, said to her mom, “what’s that?”.  Rather than the mom answering the question honestly, she pulled her daughter closer to her and said “those are suitcases.”  I don’t know who she was trying to fool, us or herself.  We both knew the daughter was asking about Kate and her chair.  She wasted a moment to teach her daughter.  She didn’t do her daughter or us any favors by not answering the girl’s question.  I am not offended when someone inquires about Kate.  I would rather a child ask than stare.  I am offended when a parent doesn’t answer the question and/or ignores the question.

3. Adults and older kids, I am offended every time you stare.  You know better.  I have a hard time believing Kate is the first person you have seen in a wheelchair.  If you are curious about Kate, please ask.  Come up to me and say “Your daughter reminds me of…  Can I ask about your daughter?”  or “your daughter is beautiful.  What does your daughter have?”  (BUT DONT ask me what is wrong with her.  That’s offensive.  Nothing is wrong with her.  She is perfect.)  I will gladly share with you what disease Kate has, direct you to websites, etc.  Awareness is key!

I beg of you, stop staring and start educating your kids on people like Kate.  

While am at, please stop using the word retarded to describe things and people that aren’t.  I know I have posted on this before but people, including friends, still say things like “that is so retarded” or “they are such a ‘tard.”  It hurts, its offensive and it makes me want to scream in your face.  I am over asking people to politely to stop using the word in front of me.  I will no longer be silent when you say it in front of me.    I will be kind but I will ask you to not say it.  

Learn as much as you can while you are young, since life becomes too busy later. ~Dana Stewart Scott