Our Toothless Wonder

Simple life changes can seem monumental.

We have had quite a few ups and downs and the best way we know how, we try to maintain steady.

However….

Our youngest lost her first, whiter than white, tooth and I have been in a tail spin ever since.  Her age of innocence giving way to the right of passage of growing up, one pearly white at a time.

She was overjoyed from the first wiggle. Teasing it everyday. Hoping against all hope that it would fall out soon – so she could securely tuck it under her pillow case with a note.  A note about how long she has “waited” for this moment. Coupled with a thank you and promises that she will maintain all her teeth the same way.

Dear Tooth Fairy,

That precious smile, now exaggerated cuteness, with the hole front in center, almost never came to be.

That smile.....so glad we did!

That smile…..so glad we did!

Don and I struggled with fertility for 4 years after the birth of our eldest.

In Vitro Fertilization and Parkinsons are two words that are rarely combined. In the later part of my 30’s we were dealing with both issues. After being gifted a child and realizing we could maybe do this “parenting” thing, we attempted for another. We tried…insert failure…. and tried…..insert disappointment ….. and tried…..insert grief……and tried….insert devastation. What was wrong with us (really) me? How could I be a failure at something that we waited for the “right” time to happen? Immediately I learned the true meaning of the gift. After four late stage miscarriages we dove in to the science of baby making. Being Catholic, this was something we never discussed. My sweet mother, by all terms, gold medaled in the olympics of childbirth. She conceived 12 children. So how could I struggle?

The science of it all wasn’t quite adding up either.  In the midst of our third attempt at IVF, we sat in a neurologist office, just after a reproductive appointment, and heard, for the first time, the word Parkinson’s.  Don stopped in his tracks, understandably, immediately questioned the doctor about having another child.  His quote was “You have to believe there will be a cure in your lifetime.  If it were me, I would still try”.  That cycle failed- we heard, screaming louder than ever, the words again. “I am sorry you’re not pregnant.”

You would think that would have been game, set match.  Most people said to take joy in the family we already had and count our blessings. BUT something so powerful propelled us to keep pushing forward.  Most would believe that some higher being was trying to tell us something. Given our new challenge, progression of the disease and future uncertain, we thought… no. Really, truth be told, we thought ……hell NO!  We will move forward. We will preserver.  We refused to live scared. Then after many long discussions we added another reason to keep trying. We wouldn’t want Libby to have to deal with Parkinson’s by herself.  That seemed like a lot of pressure.  So, with the odds stacked against us, we tried again.  Don at this time had moved to Raleigh to begin his tenure at NC State.  Libby and I stayed in Boston, filling our days with doctor appointments, blood checks and ritualistic self injected IVF shots.

It was finally time for the “transfer”.  We had already been down this road before, with hallowed results, so I told Don he needn’t travel for the procedure.  Understandably, I had prepared us for more of the same. The disappointment was routine at this point.

The doctor implanted two fertilized eggs and the wait game continued.

This time, we heard there WAS a viable heartbeat.

Haddie Hospital

Faith in all good was restored.

When that toothless smile entered the world, we had more hope than I could ever put into words.  In the face of the unforeseeable things that were happening, we had a beacon of light and love. United together, an unbreakable bond,  Horton’s.  For those of you that haven’t met us, 4 people who will not let our lives be defined by anyone or disease.

and…… when Hadley asks about how it is she came into this world, we exclaim with the most guttural sincerity, you couldn’t have been wanted more.

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The Beginning Of Letting Go

Spring is developing into wonderful anxiously awaited season, with great things in bloom.  My bloodshot eyes and continual runny nose can attest to its arrival.  Spring means different things to many.  In our life, it had always involved spring football with a culmination at the end a “spring game”.  This is the first time in 30 plus years -24 that I have been part of, that we haven’t attended one.  Knowing how important to Don this tradition is, we started planning. Even if from the sidelines, he would like to watch, this is food for his soul.  The plans were to voyage to Boston, a place we fondly called home, to watch the BC Eagles take the field under their new leadership.  Then the unfathomable traumatic events occurred and we thought better than to travel.  With the devastation that was besieged on this great community we started to place in prospective our simple feelings of wants and looked at the greater city and people’s needs.  Moments of prayers followed as we watched and listened to the events unfold, while being in constant contact with our friends that remain there and then we cheered at the conclusion. The Boston College spring game was cancelled, as it should be, but we witnessed an unplanned game, of good vs evil and goodness won!

Balloon Release

Mrs. Debby’s Balloon Release

Life changes all around us, whether we want or are open to it, or not.  My youngest daughters beloved preschool teacher passed away from breast cancer at a very early age.  How to explain the loss to a 5-year-old child, I thought, was going to be difficult. This was the second teacher / friend we had lost to cancer in a short period of time.   A collective group of mothers decided to have a balloon release ceremony to help the children let go physically of something, say a prayer, watch the balloon rise, disappear into a greater place and trust in life again. The kids held on securely to their balloons as they each said something special about Mrs. Debby and then, it was time to say goodbye.  As the release happened, I slowly looked around.  The adults with tears, myself included, but each child had a grin so wide it was hard not to feel their sense of trust, that in letting go, everything will be ok.

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It was with wonderment I watched Hadley.  Inspiring to me.  Helping me believe that there was a time when we / I were free to accept change.  We ALL make adjustments in life and have to accept new realities, whatever that may be and for us, now, that includes no spring football.  It’s not just a game but it’s been a way of life that we are letting go of.  I  believe it hurts Don to his core and for those of us who witness his inner sadness, it is difficult. There are different ways to experience loss and nothing can compare to the tragic way the people of Boston are grieving, but I do believe that living with a disease is its own form of loss.   As an adult I wish I had the ability to let go of something, truly release it, and not hold on, as my 5-year-old does. I am re-learning.

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.

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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.

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