Thursday, January 29, 2015

Five Years - Jan. 17th 2015

Five years ago around this time, I was told my 8 year old daughter would not survive the status seizure she had on Jan. 13th.  It wasn’t her first status seizure.  She had many in her 8 years.  Each time we held our breath and prayed that she’d wake up and we’d go home. So many times she did just that.  Not this time however.  This time her kidneys would stop working, then her liver, and then her lungs.  This time she would not wake up.  Her daddy and I would have to make the decision to take her off life support.  I never dreamed in a million years we’d have to do something like that.  No parent does.  I can tell you that it is the single most horrific experience of a lifetime.  It feels both cruel and kind at the same time.  My baby girl was going to die and I’d never play with her, sing to her, take her to school, fix her chicken, or kiss her beautiful forehead ever again.  Not in this life. 

I wasn’t prepared for the massive hole in my world that her death would bring.  Its five years into this thing and that hole is just as big as it always was.  I’ve tried hard to find ways to honor her life any way I can.  Even through the work I do on a daily basis at my job.  Still the hole remains and I’ve decided it will always exist.  It’s another reminder that I loved that girl so much.  I sure did and do love my Hannah.

I was told that we’d find a new normal.  I resisted it for a while, but it is true.  You do eventually settle into a new way of life.  You do holidays differently, you build cemetery visits into your calendar, and you create new relationships.  That’s something else, as a special needs parent you are so consumed with your child, and you build these friendships through forums, and websites, and face to face groups, and then your child is gone.  The need for those daily interactions with people that had been your lifeline is gone or it changes; becomes awkward.  You are living their worst nightmare.  Everything changes while you long for what was.  You wouldn’t in a minute trade the worst days with your child all added together over this.  You’d choose every hard moment all over again if given the choice, but you’re not given the choice.  You’re only choice is to figure out how to do life without your beautiful child.

Epilepsy is evil.  When Hannah had her first seizure the neurologist that saw her told me, “you can’t die from a seizure.”  I remember so many times using his comments to relieve my anxiety.  On my bad days I want to take him straight to my daughter’s grave and have him look me in the eye and say that now.  I’ve written him a letter asking him to never tell a parent that again, that doing so actually puts their child in danger, and that he is not helping. He never responded.  Not surprised.  Not enough research is being done.  More now than in the past though, and my prayer is that it continues.  I can tell you that living in the epilepsy world is not a fun thing.  Fighting for medications, fighting for treatments, fighting with people to understand how serious it is because they’ve been misinformed for years, and watching people die and it be treated as one of the minimal risks of life with epilepsy.  It’s infuriating, and needs to change.

I said all that to say this, I’ve survived the death of my daughter, I’ve created a new normal, and I have a good life.  I have a wonderful marriage to my husband of almost 25 years, I have two great boys, fantastic friends, a great church, and a house I love.  I am a business owner, and an advocate for families who live with epilepsy, and I mentor and am on the board of an organization that helps those who have suffered sexual violence.  We help them get their lives back.  I have a good life.  If you had told me this is what my life looked last post Hannah, I’d have said you were crazy.  Hannah was my life.  I felt like she was my purpose.  When she was gone, I felt totally lost, like my purpose for living was lost.  But I am here, and I’m happy.  I miss her like crazy, but I’ve made it. 

I’ve made it because people who didn’t even know Hannah came beside me and loved me.  They supported and knew I’d need to find a new normal.  They helped me.  I’ve made it because my old friends who knew Hannah send me messages and remind me of how much she meant to them and the things she did that impacted their lives.  I’ve made it because I have a faith that gives me hope that although I will not see Hannah in this life, I will see my girl again.  I’ve made it because I decided the best thing I can do for Hannah now is to honor her life and live life the way she did; facing whatever came her way with a smile on her face and love in her heart.  I’ve made it because that same stubborn determination I so admired in my girl, was a gene passed to her from me.  I’ve made it because I had to.  The alternative was not an option.  I’ve made it.

To my sweet sweet Hannah…It’s been 5 years and we’re still surviving your loss beautiful girl.  I would have never thought we could.  You taught me how.  Thank you!  It’s because of all that you showed me and taught me through your life that I can be happy in your absence.  I still feel guilty sometimes for being happy, but then I think about you and know that I’m happy because I had you.