Well, boys and girls, it’s time for my oft repeated, least favorite activity – trying to determine what is eating me.  When some people get upset or stressed, they take to bed, or shop, or drink.  Me?  I find myself on my knees – but not in a good way.  I’m in the bottom of the pantry digging for remnants of chips or cookies.  And then after a day – or three – or forty-three, I start to wonder, “Why am I eating all this junk?”  Because I am just that self-aware.   And you know what I determined today?  It’s Rich People Problems.
Originally published on Feb 4, 2013

Now, the fact that I have Rich People Problems is nothing new.  My close friends and I gently hold each other accountable to some measure of gratitude by reminding each other when we are whining about Rich People Problems.  The house is always messy – if you have a house, it’s Rich People Problems.  I can’t seem to loose weight – too much food is Rich People Problems.  I can’t figure out this program on my brand new computer.  RPP.  What did occur to me today is that Rich People Problems bleed over into the area of my life labeled “special needs”.  You see, my mom friends that have typical children don’t give me any flack for complaining about the ins and outs of having a medically fragile, special needs child.  It doesn’t give me permission to complain, mind you, but they can’t relate, so I tend to get away with it.  But if you have followed this so far, see if you can hang with me a little longer as I tie all these loose ends together.  

During my introspective time, I decided that Shelby’s impending back brace was weighing heavy on me.  I am feeling a little sorry for myself because she has scoliosis on top of EVERYTHING else that she has to deal with.  Now, here is a big admission:  I am really not that worried about how she will handle the back brace.  She is so easy going and has a high tolerance for discomfort.  Either she will wear it or she won’t.  And the outcome will be up to God.  One thing that has never faltered for me during her many ups and downs is my faith in God.  I have never doubted that God will take care of her and that His will for her life will prevail.  But that doesn’t keep me from feeling sorry for myself and for the hassle it will be for me and my husband.  (I may have to stop blogging because I’m not sounding too good here).  So what is the bottom line?  Rich People Problems.  We have the insurance and other resources to have her fitted for a brace that could help her avoid major surgery.  We have access to brilliant minds who will pain-stakingly measure her and create the device, and I’m worried about having to strap her in it every day?  My message to myself?  Get over it.  If only it were that easy.  

On to “problem” number two.  We had an ARD meeting for Shelby last week to plan for next school year. The meeting went well.  Too well (huh?).  For the first time EVER, Shelby has not shown any regression in the course of the school year.  First time EVER.  Wow.  This is huge.  What could I possibly have to complain about?  For the first time EVER, Shelby doesn’t qualify for summer school.  This scares me on so many levels.  12 weeks with no formal instruction?  How could she not regress?  12 weeks of no scheduled breaks for me? 12 weeks without time to go to the grocery store or get my hair cut alone?  Oh my word.  Panic has set in.  Panic over Rich People Problems.  I live in a country that believes in educating people like Shelby.  In some places she would be locked away, neglected and possibly abused.  But Shelby goes to a great school.  She has teachers and aides who adore her.  They nurture her, teach her and love on her.  And I’m complaining because she will have to take a break from that for a few weeks?  RPP.  

My goal for the rest of the day? (Yes, taking it one day at a time.)  No more complaining.  No more pity.  And no more chips and cookies.  

Originally published on Feb 1, 2013

Over 5 years ago, Chuck wrote an article for the Epilepsy Foundation’s national publication entitled, “In My Own Words”.  I was reminded of it recently and decided to post it.  The amazing history of this article is that it is the reason we finally got our diagnosis.  At the time the article was written, all we knew was that Shelby had an unknown seizure disorder.  After it was published, we got a call from a mom of a Dravet child who read the article.  She told me that Shelby sounded just like her son and she thought we should be tested for Dravet Syndrome.  I blew her off.  At this point, I felt like Shelby had been tested for everything under the sun and we had spoken often with well-meaning people who “knew” what was wrong with Shelby and what we needed to do to fix her.  This sweet mom asked me to look up their website.  That site is now called Dravet.org.  What I read there could have been written about Shelby.  I knew immediately that Shelby had Dravet Syndrome – although we waited 6 months for the offical test results.  This article, and the wonderful community of Dravet parents are responsible for better medical care of our precious daughter.  Below are my husband’s thoughts on Shelby 5 years ago:

Life is full of surprises and having a child born with a disorder I knew nothing about was a big one.

It’s funny how you can become an expert on something when you need to be. And I needed to be. My daughter Shelby began having generalized tonic clonic seizures over seven years ago. She wasn’t even 5 months old. My wife and I were petrified. How things have changed. Her “events” have changed in type, frequency and duration many times. They seem so commonplace now. Shelby’s seizures are a part of everyday life. A day WITHOUT a seizure is now a big event.

It’s a helpless feeling to watch my child suffer. The helplessness multiplies as we try endless pharmaceutical combinations and treatments hoping that the next one will bring control. To date, control has eluded us. Because of this, we can’t hire a teenager to baby sit. We have to rely on trusted adults to volunteer and we cherish our precious time out. Shelby has severe developmental delays. She developed on the slow side of normal until she was 18 months old, at which time we saw an abrupt halt in progress. In all the years since, she has only gained about four months’ worth of intellectual, social and physical development. At 7 years old, Shelby operates like a child not quite 2. She speaks in one-word utterances, can’t run and needs help feeding herself. She has grown so big that changing her diaper has become one of the biggest challenges of all. We spend our time running from doctors to therapists and meetings at school. Sometimes, I mourn the fact that my daughter will probably never live independently. And today, I mourn the stacks of medical bills waiting to be paid, and yet…

Shelby is a wonderful gift from God. I have watched her bring out the best in those around her as children—normally so self-centered—learn sensitivity and how to nurture someone who is different. Shelby’s special gift is love. She brightens the day of many strangers as she asks for hugs wherever we go. We call her our world-champion cuddler. She loves to sit in my lap and snuggle. Shelby has prompted the involvement of our entire family with the Epilepsy Foundation. My wife, mother and mother-inlaw wrote a book about Shelby that introduces young children to seizure disorders. I serve on my local board and raise money to increase epilepsy awareness and improve the lives of those who suffer with the disorder.

At times, I find myself focusing on my daughter as a cause—something to be fixed. But it would be a tragedy to keep thinking that way and miss the blessings of today. I pray for Shelby to be healed and I wish she were developmentally appropriate. But the bottom line is, if Shelby never gets any better, my life is so much richer because she’s in it. I know a lot of others who would say the same thing.