We are delighted to introduce to you, dear readers, to Julie Hemker and her Mom, Charlotte. These are amazing women with an amazing story to tell.  Julie was born with Sacral Agenesis 37 years ago.  She has had over 40 major surgeries, her first at age 1.  But as Julie points out, she is not defined by Sacral Agenesis–her life is so much more than being a patient.   Julie and Charlotte will be telling their story in a series of posts, starting with Road Trip.  Enjoy!  Pat

By Julie Hemker

Julie and her mom, Charlotte

Life is much like driving a car, when you look in the rear view mirror, you see the experiences which have brought you to today.  Today?  Today is a great day!  It is a gift given to live however you would like.  It seems that being born with a congenital spinal birth defect, Sacral Agenesis, 37 years ago, maybe my life would be more determined and dictated by medical protocols and trauma.  Well…I like to mix it up a bit. We’ll start with now, today!

Today, I am a successful Management Consultant who works remotely, happily married for 12 years, have a very spoiled and adorable yellow lab Stella, have THE best family ever, wonderful friends, a B.A. from Denison in Psychology, Biology emphasis, home owner, and over all, the happiest person.

Why?  Because I choose to be happy every day.  I have had over 40 major surgeries starting with 0rthopedic surgeries at age 1 to correct bilateral club feet to a pelvic stabilization in 2009. My urological procedures began at age 7 with, at the time new ground breaking treatments including the artificial urinary sphincter and bladder augmentation.  Then, I had a multitude of spinal surgeries including laminectomy decompressions, tethered cord releases, about 7 spinal punctures including blood patches at T11-T12 and 2 at the lumbar level.

Currently I have a cerebral spinal fluid leak and have been on complete bed rest for 3 months, showing slow progress.  Conservative treatment, bed rest, is preferred.  Surgical intervention or further blood patches are too risky with the amount of times my dural sac has been opened.

So, why am I so happy?  I love life.  I have been this way since day one, really.  I have to endure the medical pain but have learned self-hypnosis and biofeedback for pain control and I like to look at what is wonderful in my life, not catalog it as if in a medical journal because let’s face it, it already is.

What I have accomplished may seem ordinary to others, but for me they are extraordinary.  Obtaining my degree from a very fine educational institution was of the upmost importance to me. On graduation day I walked across that stage to receive my diploma, with pride!

Julie and Mark

I’ve been the luckiest, though, in love.  I never thought I would be able to let down my guard and share ALL the medical “stuff” with anyone, ever.  I blocked love out until Mark, my now husband, saw right through me.  He was persistent and we became friends first which blossomed into more.  With Mark I feel safe.  We’ve been through at least 14 surgeries since our marriage in 2000 yet we grow closer and our relationship stronger.  I’m so blessed.  He is the most darling, intelligent, funny, kind, honest, forthright, sensitive, gentle caring and patient person I have ever known.  He chose me.  Wow!  I still feel giddy because I treasure every day we have together.

Most young couples don’t expect to enter their relationship having to confront and honor the part of the vows, “…in sickness and in health.”  We are and continue to.  It is all in communication, honesty, acceptance and love.

Lying here flat on my back with my spinal leak I feel like the luckiest woman in the world.  I hear sounds of our dog Stella and Mark snoring in stereo!  That’s why they made ear plugs.

I have many medical traumas ahead but what I have is NOW.  I love NOW, right now.  It’s bliss.  “They” say it takes a village to raise a child well my village is full of brilliant surgeons and loving people to get me through what lies ahead.  If I live in the future or dwell on the past life could get pretty over whelming.  I am not Sacral Agenesis.  I am a 37 year old woman, happy with the life I’ve been blessed to live.  I wasn’t supposed to live but someone had other plans for me and here I am living them.

Yes, there is a story behind every person and it starts with my Mom.  She will be bringing us up to today, the present.  Before there was me, there were my parents and they have a wonderful story to tell.  Stay tuned to hear all sides of Julie, this woman with Sacral Agenesis who laughs the loudest, smiles the most and adores everyone in her life.  Let’s take a journey together.  Join my Mom and me, as we share our unique experiences, with Sacral Agenesis, from different perspectives. You will learn how it impacted our family, our relationship and our experiences with healthcare from 1974 to present day.

Keep your seat belt on and choose your favorite CDs.  We have open road ahead, let us see what is in this rear view mirror!

Stella

 

Other TDWI posts on Julie’s Journey:

Part II: The Beginning