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.

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