Sleep Baby Sleep

Sleep Hadley Sleep!

The wonder her dreams are filled with.

The peacefulness of a child sleeping.

Mom mistake number 1 in parenting was made the first week Libby came home from the hospital. The blunder pediatricians warn and clinics are devoted to. The one where, at the library a vast section of parenting books are indexed on; how to avoid, solve, terminate and demystify.  Ring a bell? If so, you know the name Dr. Richard Ferber and my mistake…..sleeping with your child.

It began quite innocently and seemed so natural.  There was this new little life that we were responsible for. How could I close my eyes and sleep without her by us? What if she needed something and I didn’t hear!?  So, in one room there stood a beautiful new pristine white Bratt Decor crib and the other, a bed filled with 3 bodies.  At her 1 year check up the doctor declared “You have become Libby’s pacifier” and urged us to stop. I made an attempt to put and end to it but she sat there screaming, to the point that she made herself sick and I caved. It wasn’t worth it to me.  Four years later, we were welcoming a new blessing and the biggest transition was getting Libby ready to sleep on her own while we made the number 1 parenting mistake …..again.

Libby and Hadley are completely different as most siblings. From their demeanor, to their likes, fears and sleeping habits.  Libby lays there peacefully, in one spot, always on her side, ready to tell stories, share her day, say her prayers and close her eyes. In the morning she almost always in the same position.  Hadley the complete antithesis. She is never ready to surrender for the day! A ball of energy. Afraid if she closes her eyes, for just one moment, she may miss something. Even while sleeping, her body is constantly in full running motion.

I never gave much thought about how my children slumber until Don’s Parkinson’s diagnosis.  Don was a crazy sleeper and dreamer, always experiencing a game or practice in the middle of the night. Many times I was woken to a play being relived and I was a collateral practice dummy.  I attributed his sleeping habits to lack of it.  Coaches work non stop.  Watching and re-watch film until the wee hours of the morning.  So, it was natural to me that he couldn’t turn the switch off.  While pregnant with Libb, in the black of night, I was awoken to  Don “going for a ball” and “we” were in the way.  Many nights are spent playing musical beds because of this.

Then I read one of the first warning signs of Parkinson’s is a failure of  “muscle control” system to work during REM sleep. People in the early stages of Parkinson’s disease may have unexpected movements and act out their dreams during REM sleep. They may jump out of bed, kick, punch, jerk or moving ballistically during REM sleep, at a time when movements are usually suppressed. This sign may appear eight or more years before other Parkinson’s symptoms develop – and it may be the first sign a patient has. Then it all started to make sense.

Someone recently asked me if I would have the children genetically tested to which I responded adamantly no, for a variety of reasons.  It deeply worries and haunts me after watching Hadley sleep that she is more like her father than just her features and temperament. At night, when I start down the path of terrifying thoughts that our girls may have to face Parkinson’s in their future, I just look to the right, see that sweet baby face, listen to her breathe and say a special prayer, just between me and God.

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Four letter word……Help!

In a family of 12 you learn very quickly the meaning of the word HELP. Help your sister tie her shoe. Help drive your brother to basketball. Help your mom by doing the dishes. Sometimes you knew you were “helping” by not asking for anything – because your mom and dad may be consumed with something else. I am not a stranger to the word or concept of lending a helping hand. As a child I witnessed my dad help complete strangers. I recall hearing, “Mike, why are you late tonight?” “I helped someone who needed a lift somewhere.” “Who dad?” “Nobody I knew, just someone down on his luck.” My dad’s quiet, humbling kindness was always there and from my mom, the same. She would also throw in, after a search of something missing, “say a special prayer to St. Anthony”– the patron of lost things.

Back Bend Demonstration

Back Bend Demonstration

As a mother I witness help. Libby helping Hadley master a back bend – lesson I hear – You can do anything! Libby helping Hadley learn to read – lesson I hear – I know you are smart and capable AND worth my time. Libby teaching Hadley the rules of tennis and life – lesson I hear – I will always be here for you if you need anything . Hadley schooling us all on her made up knock knock jokes – lesson I hear – It’s important to always laugh. A recent favorite of mine… “Hadley, this is what you do if someone makes fun of dad”. (which unfortunately has happened) Lesson I hear – Siblings understanding strength and unity.

Learning a Back Bend

Learning a Back Bend

As an adult I’ve helped. I make an attempt to help families, both that I know and who are complete strangers. I volunteer my time, thoughts and resources – all of which I know I can do more and should. I am trying to being an advocate for Parkinson’s. One of the manifestations of the disease is a quiet voice and I am happy to lend mine for the cause. I try to help my own family build the tightest indestructible wall of love, that no one OR disease can break.

H E L P

But this four letter word has been haunting my soul. I am an avid reader, lately, not as much for pleasure but for research. The Michael J Fox Foundation published a Facebook post that encouraged people to “share” or comment. Most were lengthy compelling stories about life challenges and changes. I read them all but when I close my eyes at night I still see one mans response. It was four simple letters – one simple statement and if I were being completely honest, a desperate plea. It simply read “Help”.

Today I feel like asking. Help us find sanity. Help us find patience. Help us find peace and if I could channel my mother, St. Anthony, Help us find a cure!

Expect The Unexpected

I grew up in a family of practical jokers. Sandwiched between boys, it was common place to be the brunt of a punchline.  What doesn’t kill us makes us stronger mentality. We never took things too serious, the boundaries were always being stretched.  My father was right there as an instigator, although he would deny it.   During my high school years he thought it was comical to slip a bread tie into our sandwich while my mom was making our lunches.  Yes, a bread tie.  So while talking to friends, catching up on the days after school activities, homework or sports and testing schedule, you would bite down and feel a crunch.  The visual of a half dangling bread tie outside of your mouth and half in was mortifying to any teenager but it did make you chuckle a little too – just on the inside.  At some point I began to roll with the punches – and declare “oh, that’s my dad,  just trying to be funny”. I learned to always check my sandwich before devouring it but, then the day I would ease up and forget, it would be there again. Uncanny sense of timing.

Overnight Beach Field Trip

Overnight Beach Field Trip

Libby is on an overnight beach field trip with her school. An event she has been looking forward to since 1st grade.  They travel as a collective group, explore battleships, marine biology, spending countless hours with each other and bunker down at a campsite.  Her enthusiasm was contagious, at first how exciting, wonder what it will be like, but then I heard a report on the camp food as being described as “wonderfully delicious” and thought maybe this trip was being over sold.  We all became excited for her, the hope of something new and unexpected.

The Unexpected Surprise!

The Unexpected Surprise!

The overnight bags were packed for a solid week in advance.  Double – triple checking constantly. Water Shoes – check – Sweatshirts – check – Pillow – check – Camera, Money, Outfits and Sleeping Bag – check! As I tripped on the overflowing duffle bag and backpack for days, I thought, what could I leave in her bag that would remind her of us. Some moms leave loving notes or pictures…… some leave threatening reminders “to behave”……. I had decided, I was leaving my loving note in the form of a snake / serpent, tucked in her dark sleeping bag- sure to evoke a shrilling scream as she placed her tiny legs inside to sleep. It was also a reminder that when she laid down to close her eyes she had comfort  knowing, we can’t be with her physically but she’s always on our mind.

Life is full of unexpected surprises and last night as my youngest and I lay there and wonder if Libby had “discovered” her love surprise and if she had, why we couldn’t hear a ear piercing scream all the way in Raleigh, my phone beeped with an email.  Here was our unexpected surprise…. the FDA has issued a recall for the DBS (deep brain stimulator) cap manufactured by Medtronic‘s.  Seriously, a recall? We JUST had the surgery… how can this be? It’s not like taking your car in to have an airbag replaced.  There are no “loaners” to request.  I am not sure to date what our path will be to make the correction, but it takes me back to my family and the lessons they taught and we hope to teach, of expecting the unexpected and trying to roll with the punches.

http://www.businessweek.com/news/2013-05-02/medtronic-s-deep-brain-stimulation-device-cited-by-fda-for-flaws

Support Groups And Swings

My oldest daughter despises swings.  Her face turns a ghostly shade of white at mere push.  It’s always been that way.  I remember our first outing to a neighborhood park in Boston.  She was approximately 6 months old.  I was so happy and proud, bow in hair and camera ready to capture the fun and a wide toothless smile.  I placed her in the black baby swing.  I began the count down 3….2…1.. pushed ……camera posed to shoot and….. instead of delight, I witnessed sheer panic, followed by tears and screams.  This couldn’t be! I quickly scooped her up, held her, and tried again.  What child doesn’t like a swing? Maybe my build up was too much.  As if in lather and repeat, I tried and kept trying.  Smaller pushes each time and still the same reaction.  The walk home was like a walk of shame.  We had a classic case of park failure.  I called Don disappointedly and relayed the news.  As par for course, his practical reaction – “well guess there isn’t a need to purchase playground equipment for the back yard.”

Over the years we, meaning I, periodically kept trying  and at some point in her life she decided she would throw me a bone and stay on for a second, then declare that it was “high enough” and be done.  Now when she goes with friends and they run for the swings, she pretends.  I watch her hop on and barely ever do her feet leave the ground.

EXCEPT for one special time of year, with one special friend.  All bets are off on this day!  In the fall, at our local church they hold a fair fundraiser and they have flying swings.  Our first trip there was with a dear school friend and her family.  Immediately, I crossed it off the list as something we did not need tickets for but my mouth dropped in surprise when Libby said she and Ashley wanted to do “it”.  “The swings?” I asked.  “Yes mom, the swings.”   I then proceeded to lecture that they wont stop the ride in the middle just for her.  The response, “no mom, I’ve got it.”  Rolling with the punches, I watched her get on by herself and then the count down began 3….2…1…..liftoff ensued…….camera ready and this is what I captured.

Image

Sheer delight, but even better than that, simple friendship. I am not sure who extended the hand first but the important part was that both hands found each other.  We continue to go back every fall, together, and I think it’s the only time that Libby will open herself up for a special ride.

That’s how I view support groups and not just Parkinson’s specific support groups.  I’ve been asked several times; do we belong to any or if I have recommendations for such.  My answer is, it is hard to find just the right one.  Continue trying because someday your feet will leave the ground.  Someday, you will know when you have found a safe place to share.  It will be when you reach out to hold someones hand for support and they will be there to not only receive it but, not let go until the ride is over.

The Sands of Time

DSC_0703

I love design – reading about it, discussing it endlessly (my apologies to my friend Elizabeth), reviewing and tweaking mine, pinning my wish lists and dreaming of. I am a by nature a set designer. Everything in our home has meaning and some sort of attachment. Three years ago during the holiday season, on a trip to Anthropologie I stumbled upon a sand timer. It made me do a double take. A simple piece of beautiful handblown glass with silver crystal like sand sitting in the base. I had already checked out and then I inquired as to how many more were on hand. I only saw two. After checking the back for stock, they appeared with a total of 5. I declared I’d take all. This would be the gift to our closest friends that holiday season.

This hourglass piece, when I looked at it I didn’t just see something that was structurally beautiful or that just measured time. Some may see it as a conversation piece but I saw it as a meaningful listening tool. I had already visioned where it would live in our home. So as soon as I returned, it was placed in the living room or as my children call it, the meeting room. After school this is where I open mail and they decompress about the day they’ve conquered. Its our regrouping point. All uninterrupted by televisions or phones. We don’t spend much time in this room but it’s our sanctuary. Libby noticed it first and I explained the purpose of it. She flipped it over watching the sand for what seemed like a lengthy amount of time to transfer down through the glass channel into the bulbous end on the other side. She remarked how “cool” it was. I think she could have watched it forever, attempting to count each morsel of sand. I told the girls what my thought was for this new acquisition to our home. If any of us were ever happy, had a question, mad, sad, scared or just needed to be heard, this is the tool they would use to have the floor, uninterrupted. Our own pro-bono , free of fee therapy session. Just turn it over and start talking. You have until the sand reaches the bottom to speak your peace, deliver your news, plead your case or just be silly. With two girls I have always been focused on keeping the lines of communication open in our home. I assured them that if I were using it to speak my mind about something I was upset with them over – that by the time the last sand sliver had touched the bottom glass my anger would be gone and I would let it go. In theory, this sounds good and I attempt to maintain this commitment- but flashing forward to high school years- there may have to be an amendment to these rules! We have had a lot of fun with this. So much fun that Libby actually broke our first one. I think lots of truths have been spoken and more importantly heard. I treasure this small accessory.

The first holiday present I handed out that year was a couple of weeks early. My daughters best friends mother was fighting colon cancer at 39 valiantly. I placed a note in the box – stating what my hope for her family was. That all the hard moments would be gone by the time the sand had shifted sides. Unfortunately, she passed away a few months later. The rest I distributed to my closest girlfriends. Sharing with them a simple quote and a note about how clear I was on the importance of their friendship and how vivid I saw their roles in our life.

“The more sand that has escaped from the hourglass of our life, the clearer we should see through it.”-Niccolo Machiavelli

Preparing for Dons impending surgery, we have spent a lot more time in the “meeting room” and we are a little less formal about picking the hourglass up and turning it over to speak. That is of course, unless someone is in trouble…. As our truths have been spoken lately, I wish for the same note that I placed in Lisa’s box…. a hope that the sands are shifting.

A Childs Awareness of Disability

Siblings

Sibling Love

Disability is a broad word.  We live with one. Parkinson’s. And by “we” I mean my husband who battles it everyday, myself and our two sweet children.  It means different things for both of them.  My oldest in someways is the lucky one. She has had many more care free experiences with Don prior to his diagnosis.  When I remember her childhood I have vivid images of Don pushing Libby in her Reebok jog stroller to parks in Boston. Going down, what seemed to be at the time, a huge slide in front of her just to catch her- not an easy feat for a 6 foot 4 man. Picking her up when she fell or tossing her in the air for a thrill.  Sitting on the floor playing Polly Pockets for hours. Trying to teach her golf, basketball and how to really throw a football-  “a girl with the proper grip will impress many people in life” he would say. We had four years of living in this relative bliss.  Then the diagnosis- which we thought didn’t REALLY apply to us.  His progression will be slow.  He’s in such great physical health. For the love of God, he works out everyday for two hours – sometimes a contention in our marriage.  Eats healthy.  If anyone could fight this it would be him.  It cant happen to us.  It will be a long time before the outward signs start to manifest.

Hadley Ellison- our spitfire

Hadley Ellison- our spitfire

Then we had daughter number two. – a sure spitfire!  We made a conscious decision to have another child knowing that Don has Parkinson‘s.  Truth be told after his diagnosis I was even more driven to try to have a sibling for Libby.  I couldn’t bear the thought that an only child would have to endure the burden of the disease alone.  Hadley’s  life with her father has been great just in a different way. Any time she gets is appreciable and looked at as a gift.  Don plays Polly Pockets with her as well.  He’s interested in her basketball skills and wants her to learn the proper way of handling a football but the innocence of her youth seemed gone before she was born.  For all of us dealing with big issues, it sometimes seems unfair.  My 43 year old brain has difficulty dealing with Parkinson’s daily. What can this 5 year old be thinking?

Map of Disablity

Map of Disability

I don”t have a map for how I am to handle this with my children. Often I lay awake at night and second guess how I do, but the other night I was proud. My oldest recently went ice skating at night with a friend and her family.  She came home late.  I asked- “Was it fun?” “Yes mom -a blast!”  “I’m just really tired.  Can I go to bed?” I could tell there was something else on her mind.  Night is our “talking” time so I put the youngest to bed and then went to Libby’s room.  We started our chat… “What was the best part?” – a question I always ask to find the light in her eyes.  “Mom, a lady there fell.” I reassured her people fall all the time.  “No mom she REALLY fell. I think she broke her arm.”  Again reassuring her it will be alright.  I replayed a story that my mom had the same type of accident just on roller skates.  It landed her in a cast and time with a physical therapist. “MOM (clearly I was missing something) the ambulance was there and I think she had a disability.”  Stopped in my tracks I decided I needed to listen closely to the answers of the questions I was about to ask.  “How could you tell she had a disability?”  “Mom, I could just tell.”  “Did you see it happen?” “No.”  “Did you try to help?”  “No mom. I couldn’t and she didn’t have anyone there with her and it looked like it really hurt.” “Did you think she was scared?”  “She had to be. Mom, I’m scared.” “Scared about what?” “I’m afraid that something might happen to dad and we won’t be around.  No one should be alone mom.”

When my head hit the pillow that night I was dismayed about my inability to calm her fears because I cant promise her anything.  I can’t promise everything is going to be ok.  I can’t promise he wont fall.  I can’t promise I wont get sick- a questions she asks regularly.  I have no promises for what lies ahead for us.  We don’t know what will happen- we have to expect the unexpected. But I do know we can promise we will always be there for her dad.  I was  proud that my daughter understands that there are people who may stand out to her for different reasons in this world and that NO one should be alone in their fight.

Together Forever

Together Forever