It almost seems impossible for me to go back to that split second when Shelby had her first seizure.  Although it is a pivotal moment in the life of our family, so much of it seems foggy and blurred in my memory.  The whole night is shrouded in the fear I felt, details quite probably lost by my mind trying to protect my heart from pain.  I don’t remember what we were doing or exactly when the convulsions started, but I will never forget the full body stiffening and jerking, the obvious distress my baby was experiencing.  Chuck and I panicked as we tried to determine what was happening to Shelby.  Our baby, who was not even 5 months old.  The apple of her parents’ eyes looked like she was dying.  We quickly gathered up what we needed, and for some reason, jumped in our car instead of calling 911.  That became our protocol.  Inexplicably, through the many seizures that would follow, we have still never put her in an ambulance.  I held Shelby in my arms in the front seat of our car as my husband quickly drove to the hospital on the north side of Abilene.

I can’t recall how long she seized that night.  The hundreds of episodes she has endured since then are blended and confused in my mind.  Some seizures stopped before we ever reached the ER, and others would drag on to dangerous lengths – requiring medical intervention.  I do know that I felt relief when it was all over.  But that relief co-mingled with the anxiety of not knowing what was wrong with my daughter and when, or if, such a scary thing would happen again.  The next couple of days were filled with tests upon tests upon tests with no real answers for a VERY long time.  The years since have been filled with medications, doctors visits, therapies, sleepless nights and more challenges than we can count.

That first night, December 5th 2000, though somewhat hazy, started a very long journey.  A journey that has changed us.  It has taught us, and sharpened us, and deepened our faith.  We have grieved and tossed and turned and cried out in frustration.  We have found joy in the little things, and at other times tied the proverbial knot in the end of our rope to hang on.  Dravet Syndrome has SHAPED much of what we are as a family, but thank God is doesn’t DEFINE us.  We strive to live out the faith we have in Jesus Christ to sustain us.  We hope that others see the love Chuck and I have for each other, our children, and those God has placed in our lives.  We respect all others created in the image of God (that’s everyone) and pray our beliefs are evident.

Faith, love, and respect.  Those are the things we are building our family on.  It’s not perfect.  There will be days when you see more frustration and pain in me than you do joy.  That’s just a part of life.  Dravet Syndrome is happening to us, but it’s not who we are.

Last year I got inked.  For the first time ever.  I was 42 years old, and no, it was not a mid-life crisis.  I had always kinda sorta secretly wanted to get a tattoo, but knew that whatever I chose to have permanently put on my body would have to be full of meaning.  As a young adult, I went so far as to create a design and head down to Deep Ellum with a friend, only to chicken out at the last minute.  I’m so glad I did.  What I thought I wanted at the age of 20 would have been ridiculous at 40.   In the years since, I have never been able to come up with anything I was passionate enough about to warrant the time, money, and pain (so I’d heard).  Until my friend Shawna got this:

I instantly knew I wanted one too.  And so did two other friends.  You see, that purple butterfly is a symbol for Dravet Syndrome – the condition my daughter has.  And Shawna’s daughter has.  And Tori’s daughter has.  And Lynne’s daughter has it too.  So we all decided to go together and get the thing done.  But…I didn’t want just the butterfly.  I have two beautiful daughters.  I wanted to represent them both.  So this is what I came up with:

I chose the butterfly for Shelby and the flower for my Allie Rose (whose middle name was chosen as a symbol of the romance from which she was conceived.  So this one represents my wonderful husband as well).  And I added the cross in the center, because I constantly ask for help in keeping Jesus in the middle of it all.  Although I was proud of my choice, you may notice that it doesn’t look so great for a design that’s only 1 year old.  I even had one outspoken (or rudely blunt) friend exclaim, “That’s a pretty crappy looking tattoo!”  Initially I was a little disappointed that some of the lines look faded and broken, but I had some kind of reaction to the purple ink that included excessive scarring.  Even though the artist offered me a free touch-up, any other color than purple wouldn’t appropriately represent Dravet Syndrome.  And I didn’t relish another round of gross scabs from the same color.  I decided to keep it the way you see it now.  And the longer I have it, the more I love it.

I love my tattoo because I love the ladies I had this experience alongside.  It represents the struggles we all have and the bond we share to be in such an exclusive club.  I love it because there are two lines left unblemished.  The ones that make up the cross.  My marriage, although a sense of great joy for me, is not perfect.  And although I am extremely proud of Allie, she is far from flawless.  I am reminded of that more and more as she stretches out ever closer to those teenage years.  And as sweet as she is, my Shelby is not without issue.  She is nut-driving at times and stressful always.  But Jesus.  HE IS PERFECT.  He stands in the middle of all my broken messes as a beacon of beauty and hope.  His love never fades and He never disappoints.  He is holding it all together.  So mostly, I love my messed up tattoo because I love my perfect Savior.  Do you know Him?  If you don’t, I would love the opportunity to tell you more.