Thursday, August 9, 2012

Road Trip (My Life with Sacral Agenesis)

Road Trip (My Life with Sacral Agenesis)

The Beginning – Julie’s Mom’s story

The Beginning – Julie’s Mom’s story

A Day in the Life with Sacral Agenesis

A Day in the Life with Sacral Agenesis

Julie’s Mom’s Story – Tackling the Birth Defects, One Step at a Time

Julie’s Mom’s Story – Tackling the Birth Defects, One Step at a Time

My Life After the Fall

My Life After the Fall

When You’re Feeling Down, You Need a Hug: The Ongoing Trauma of Sacral Agenesis

When You’re Feeling Down, You Need a Hug: The Ongoing Trauma of Sacral Agenesis

Time Will Tell (What’s next? Dealing With Sacral Agenesis)

Time Will Tell (What’s next? Dealing With Sacral Agenesis)

When Times Get Tough – Watch a Movie: The Power of Distraction in Chronic Pain

When Times Get Tough – Watch a Movie: The Power of Distraction in Chronic Pain

In Chronic Pain and Playing the Waiting Game

In Chronic Pain and Playing the Waiting Game

Growing Up with Sacral Agenesis: What its Like to Have a Pediatric Problem in the World of Adult Medicine

Growing Up with Sacral Agenesis: What its Like to Have a Pediatric Problem in the World of Adult Medicine

Tuesday, August 7, 2012

Have You Had Your Hug Today?

Growing up, remember having that one best friend?  Remember having sleep overs and reading under the covers with a flashlight?  Remember catching fire flies together?  Then there was that bosom friend who was with you through thick and thin when friends couldn't come over or it was raining outside.  For you, who or what was it?  For me...it was my stuffed animal Snuffles by Gotta Get A Gund!  This timeless stuffed polar bear has been here for me through everything.  They say it is healthy especially for children who grow up with acute medical situations to have such a friend to act out and love and have when Mom and Dad weren't there or when feeling lonely.  Loving the Snuffles helped express what I couldn't express because developmentally I wasn't emotionally prepared - the one thing I could do is hug my teddy bear.

My Snuffles has been here through thick and thin.  He hugged me every night and ensured I felt safe.  He went through every surgery growing with me growing up.  He helped me while receiving shots.  I use to bite his ear instead of crying.  Snuffles was a wonderful supporter for me in and out of the hospital.  He is absolutely filthy from many years of love.  When I got married I remember thinking, "Oh no, I can't sleep with a Snuffles!"  I had to "wean" myself since we had been together for all those years.  First I would sleep at night with Snuffle on my pillow and then eventually the night stand then the book shelf on the other side of the room until finally, he was put in a box in the closet.

Snuffles!


Last February our first dog, black lab mix George passed away.  He was my everything like Stella is now.  Because I work from home I literally spend more time with our dogs than my husband.  George became a self-trained service dog.  He learned when my spinal fluid would fluctuate and was at my side immediately before that happened and I became dizzy.  I recall one day I fell from the spinal head ache and dizziness.  George put himself under me and helped me crawl to bed.  In classic George form, he helped (as only a dog could) get into bed.  Then he hopped up and waited for me to get on my back.  The spinal fluid and head aches lessens when lying flat; it's a neutral position for the spinal.  Once I was situated George gently placed his sweet head on my belly and looked up at me, never began closing his eyes until mine did.  For almost 14 years we had this wonderful relationship.  After surgery he did the same thing, lying with me for hours and hours while I was in pain.  He was so sensitive and I love/d him very much.  We planted a cherry tree in the back yard in his memory so every spring it blooms.  It is a reminder of him and lets George, gracing the back yard with beauty.

Georgie Boy!!



We were devastated as everyone is when losing a beloved pet.  I couldn't sleep because although he was large he was able to get so close to me in bed (like a cat) to make me feel the same comfort I had with my beloved Snuffles.  My friend suggested pulling Snuffles out of the closet to curl up with him for that closeness I craved.  I did at age 36 sleep with my stuffed animal.  Oh just seeing him made me feel kinship that only close friends have after a long separation.  He slept with me and snuggled me to the point I felt peace with George being in Doggy Heaven.  Of course the friend who suggested this also happens to be my best friend from childhood with whom I played endlessly and she knew of Snuffles and our "story" from the hospital.  Friends always know each other and what we need.

As we have Stella now, a young yellow lab, she also loved Snuffles.  She got him off the bed and pulled out all the stuffing which has been replaced and he'll have a little "surgery" to sew closed his wounds.  Mark, my husband bought me a new Snuffles to comfort me during rough times when that closeness is necessary and George isn't here to provide it.  Stella doesn't get on the bed and is a shorter lab.  We don't want it to be hard on her joints as we learned, with George, it made his arthritis worse.  You live and you learn.  Stella and I have our special snuggie time.  I wish during one life time the dogs could meet because Stella and George would love each other.  I've been lucky to have the ultimate snuggle machine, my husband and from childhood Snuffles then George and now Stella. 

It's important to feed the soul.  For some it's a stuffed animal, a blanket or a special photo.  For others it's a memory.  I think what's nice is to have that bossom friend or item which makes you feel safe along with family and friends.  Snuffles, I love you.  To George, our first puppy love we will always love you.  My cousin put it very well.  No animal will replace George but they will make your heart bigger - Stella has definitely enlarged our heart to know more and different love!  I wish love to warm your hearts and give you a "hug" each day!  Have you had your hug today?

Stella Blue!!