I Hate You Never Sounded So Sweet

The other day during a lull in our conversation, Melissa said with great zeal, “Janine I love you.”  I am fortunate because she lets me know that fairly often.  She went on to say,”even when I say I hate you, deep inside I love you. You know that don’t you?”

I responded by saying, ” I don’t recall you ever saying that you hate me.”  She let on, “I think it sometimes.”

My heart melted into a pool of sweet joy.  I was filled with the sense that I was witnessing something very unusual, extraordinary really, honesty blended with pure love. You know what pure love is don’t you?  We’ve read about it in philosophy books and on the pages of spiritual text.

I was curious. My senses perk up when in the pressence of such wonder.  I said, “Melissa when is that you are thinking that you hate me?”  She said glancing up to the ceiling, “when you are pushing me.”  “Like when I am stretching you in the morning?”  “Yes,” she noted.

“Do you feel you hate me when I am making sure you wash your face or when I write out a sheet of math problems for you?”   “Yes.”

She continued on telling me that so much of what we do in the course of a week is frustratng.  What she means by that is it feels like hard work and it is.

Handwriting for example can be tricky business.  Those letters get jumbled.  Think about all the steps in writing the letter W. You have to think W. Then you have visualize, W. Then you have take your pen, place it in your hand properly, put the tip of the pen to the paper and begin to slide it along.  For Melissa, she places the pen  down then suddenly it is moving in a circle as if it had a mind of its own.  Beginning again an attempt is made to write a W.  Maybe you or I could jot down a W with great ease but for her, it can be challenge.

Then there are those dasterly stretches. You’ve been to the physcial therapy once or twice in your life, right? You know how brutal a stretch can be when your tendons are tight and her tendons are tight. It hurts but it has to be done otherwise they shrink and legs and arms curl up.

The clincher is when I come at her with the third ten ounce drink of the day. More fluids  Melissa, I exclaim. with a smile.   I can almost hear the “I hate you,” then.

We continued with our chat and she repeated, “you know I don’t hate you, right?”  I said, “Yep I know you don’t hate me. I know you love me. You know we’ve done good work for eight years, right?”  She agrees.

“I wouldn’t be in the shape I am in if we didn’t do all the work.” I acknowledge her insight.

I softly reply, “I know. I know it is hard frustrating work. I get it.”

She ends saying, ” Janine I love you.”

“I love you Melissa.”

If you know Melissa and have yet to read up on leukodystrophy I encourage you to do so. It would be a very long article for me to list all the aspects of this disease in the stage it is in currently.

Her mother and I are in the thick of it as primary caretakers.  No one aces it like mom by the way. I can only hope to reach that level of love and compassion, oh and sacrifce.  Kathy is a model of strength.

We have decided the mission of Melissa’s book Snowball’s Great Adventure and Team Snowball is to be of service to families dealing with children with leukodystrophy.  If you were to read some of the stories your heart would break over and over again.

Kathy, Melissa’s mom and I agree that the best way to honor Melissa’s own stretch and courage is to continue to be of service expanding our work in the direction of these families.

I ask family and friends to visit ulf.org the site of the United Leukodystropy Foundation or do a google search information.  Education has a way of clearing up misnomers.

One thing is for sure, the road is lighter when shared it together.  I have said it before and I will gladly repeat it one hundred times, Melissa is a master teacher to anyone who is receptive enough to see the message in her unique wisdom.

 

 

Is it about Me or Us?

Recently Melissa had lunch with her PCA, Janine and Janine’s friend.  It was the first time the friend had spent a decent amount of time with Melissa.

The welcomed guest later called Janine wanting to learn more about Melissa. She was intrigued by her bright eyes and soft demeanor.   Her curiousity lead to a conversation about Snowball’s Great Adventure.  You see the book has never been just a book. It has always been much more than a story of a rare white lion.  That is how things go when they are wrapped in magic.  Magic can happen in the most subtle of ways. Snowball and company have surely been wrapped in magic.

Evidence of this was first seen after a great deal of work creating the book had completed.  It was time for a speech therapy eveluation to see if Melissa was showing any progress.  One must show progress in order to continue such services.  Sure enough when asked the typical speech evaluation questions, Melissa indeed showed notable progress.

Kari Star the speech therapist reacted with much joy and a little surprise, “what has that little white lion done for you?”  Well, the answer to the question boarders on the profound.

Melissa had one answer. Her standard.  The answer has been consistant no matter who ask her what is the best part of writing a children’s book?  Simply state Melissa replies, “the book has brought people together.”

She certainly has seen alot of people since the book was published.  It was a full house at the book signing.  A story time at Partners Village Store in Westport was layered with happy pre-school children reacting with great enthusiasm to the reading by Melissa and Kari as well as Janine’s puppet show.

What is the point?

Melissa never ever thinks any of this is about her.  It has always been about family, friends and new people she meets along the way.   Another person may see something all together different but Melissa sees people coming together and that makes her happy.  We all see what we want to see.

The book has been published for seven months. So much has happened from a magical point of view.  Some people have gotten an education about leukodystrophy.  Others seeing Melissa in action learned more about where she is at.  For example, her writing is scratchy, her speech slow as she searches for words and her over all response to situations around her is delayed.  Her short term memory is very weak. Yet she would say, “that’s the way the cookies crisp crumbles.”  Some people may have been lucky enough to hear her  lion’s roar or a hardy giggles when someone says something goofy.  What have people seen in this unfolding adventure?

Melissa goes with the flow with a level of grace philosophers, sages and spiritualist wish they could capture.  She lives her days very simple, not holding on to much at all, rejoicing when she sees people she knows, falling to sleep at night thinking about many of them.

What can Melissa teach you if you dare to watch and learn, if you have the resilence to stand up to someone with such pure intent?  She can teach you that in this world if we are to succeed well, choices need to be more about ‘us’ and less about ‘me’.

That is what Janine shared with her friend who can be rather self absorbed, leaning to the miserable side of life and far to focused on herself to be a healthy individual.

What is the point?

I don’t really know except if you have a chance to sit down and chat with Melissa, and she only shares a few words, count them among the most treasured few words you’ll ever hear.  Even if all she says is, “I’ll have a cheese burger with ketchup”, she has spoken from her heart which is  a judgement free zone.  Can you say the same?

Maybe one of the pre-school children Melissa read to summed the message up the best, ” can I get a little closer?

 

 

 

 

 

 

http://www.southcoasttoday.com/special/20161116/getting-message-out-with-book

If you haven’t had a chance to read this weeks Somerset Spectator above is the link to a great article about Melissa and her continued journey with Snowball’s Great Adventure.

Front page story!  That’s awesome. Thank you George Austin – Editor

Saturday Team Snowball was at the St. Patrick’s Church craft fair in Somerset, MA. It was a very successful, fun day.

True to form the team was quick to donate proceeds this week.  A gift of Thanksgiving turkeys was made locally.  A collection of canned goods is under way as well.

The teacher challenge is going strong with books inching their way across the country.

December will hold a new batch of good deeds, acts of kindness and donations per request of Melissa.

Snowball’s Great Adventure will soon be on Amazon for your convenience.  For now there is  paypal button right here on this website.  FREE SHIPPING during the months of November and December when you use paypal.  This is our gift to you.

We now have children’s activity books that go along with the book. These are flying out the door.  The children love them.  Melissa’s mom and sister designed them. Great job!

Melissa’s niece has designed bracelets also and Melissa’s mom as designed a magical purple heart neacklace like Snowball where’s.

Our mission is to share a great message through the book.  Open space for Melissa to be all she can be and to do some good where we can.  So far so good.

This week Melissa said she’d like the book to “go further”!  We are all for that.  Keep spreading the word.

As always we are thankful for all the people who helped to bring the book to life, all the people who have purchased the book, along with the well wishes, all humanitarians in their own unique way. Miracles are happening and we couldn’t be happier.

Happy, Blessed  Thanksgiving to all ~ Team Snowballphoto

IMG_6244.JPG

Thursday October 20, 2016 was a big day for Melissa, Kari and Janine.  Reading at Partners Village Store in Westport, Ma was special. Yes special!  Surrounded by a dozen or more children is quite a treat. Caretaker, Janine, speech therapist, Kari and author, Melissa felt a little childlike themselves, playful in away.  A woman shouted from across the room, “that’s Snowball! I’ve seen her all over facebook.”  The trio smiled.

The children loved Snowball’s Great Adventure, visible as they shouted out lion roars and giggles.

Parents and grandparents appeared to be very pleased with the story line.  Each illustrations captivated the pre-schooler’s.  The addition of a puppets sealed the deal.

Sweet girls and boys stepped up closer to glimps the book and look at the character puppets on a stick.  The whispers of the wind cloud was a big hit.  This was clear as the children made the sound of the wind.

Team Snowball is grateful to have been asked to read at Partners Village Store and Kitchen. The staff was wonderful.  Miss Joan made Snowball sugar cookies with apple juice.  Melissa’s mom, Kathy made all the puppets, Snowball, Stripes,George, Pemba, Ikkos, and Haven.

Teamwork ~ that’s what Snowball’s Great Adventure is all about.

 

 

12036991_907963889272513_1774337454753123864_n

Every now and then you feel a little low, tired, your nose is running and you would rather be at home sipping tea but you are out and about doing what you normally do. Then someone who is feeling quite similar turns to you and smiles.  That’s all.  They just smile at you.

Their glossy eyes sparkle. You know they have a cold but still the sparkle of their eyes just adds to the smile.

Their eye lids are sort of droopy. You know that feeling when you are tired. Yet some how you take it as a sign of gentle calm.  You are set at ease.

That person smiles again this time adding, how ya doin’?  Suddenly you feel pretty good just because you’ve been noticed.

Someone saw you.  Someone asked how you were.

You don’t answer right away because you are a little stunned. You’ve just passed three or four people and they couldn’t lift their eyes up from the cell phone.  One person even bumps into you.

You come back to the moment and figure out that you’ve just been greeted by a very nice person.  Your day is now a little brighter.

She smiles at you again eager to hear your response.

I am fine you say returning the smile. How are you doing?

I am good she says, I’m good. She turns her mouth downward and nodding her head up and down as if to accentuate the exclamation.  You are lifted up.
Your day has been made.  An affirmation of wellbeing as come to you.

This is what I refer to as a treasure moment with Miss Melissa. Even when she is not feeling all that well she manages to turn out a smile and a welcoming greeting to the people who enter Southeast Center for Independent Living, where she has volunteered for sixteen years.

What she does there is quite extraordinary. To greet people who have issues that are alarming to them and defuse that with a gentle smile is a wonderful gift to offer another person.

We all could learn something here. There is a real benefit to looking at people who pass by us.

With eye contact comes real contact.
Something that is increasingly diminishing these days.

I learned this week that it isn’t all that difficult to look past your issues and offer a simple smile to those around you. It just might make a difference in someone’s day.

Team Work ~ That is Snowball’s Message

12650848_811482602328890_6714184637008764044_n

“Melissa Robillard captured my heart within the magical pages of Snowball’s Great Adventure, her inspirational children’s book. Melissa’s mission to make a positive impact on the world is represented in each word and every illustration. Highly recommended for children, young and old.” – Steven Manchester, #1 bestselling author, The Rockin’ Chair and Gooseberry Island

Today Melissa expressed how appreciative she is by the show of support she has received since publishing her book Snowball’s Great Adventure.

Melissa met author Steve Manchester several months ago.  He helped with the editing of the book. Maybe it was his smile, maybe it was his big bear hug,  I’m not sure exactly what it was made the connection so special. One thing is for sure his big heart was visible.

Team Snowball did not know at the time that Steve was writing Perfect Chase, www.perfectchase.com    When we learned of it we were even more grateful for his support and gift of time.

Janine says, humble is as humble does.  Which basically means change your little corner of the world but don’t make a show of it.  That is what Melissa has been doing over the past several month.  Soon she will be highlighted in a number of periodicals. Effortlessly and in her own unique humble was she is making a difference.

It is always heart warming to be involve in projects that have such pure people shining light, people like Melissa and Chase.  Included are  all the people along the way who chime in and lend a hand or give a cheer.

“Sharing the road where ideas and dreams are sign post that lead people to high points on the hillside of  life, this is essential for good living.”  Genevieve Wildheart

The above quote sums it up.

Actions speak louder than words. When people join together to lift up dreams a ripple moves out in all directions spreading goodness.

Why Do I Need A Reason?

Just when I think I’ve had my quota of wisdom for the day Melissa suprises me with one of her gems.  A little known fact ( I think ) about Melissa is that she spends a fair amount of time each day thinking about the people in her life.  She also takes time at night to say prayers for people she knows and often stays awake thinking about people if she has concerns or if she simply had a good time with someone.

It is a lovely kindness she extends holding people in her heart as she does.

Today she was telling me she loves someone.  I thought it would be a great moment to spark conversation, ya know – stimulate her mind.  Well as it turned out she stimulated my mind.

I asked, why do you love that person?  What do you love about them?  She looked at me with a very sincere and serious glance stating with complete resolve, why do I need a reason to love someone?

I had no answer.

Once again the young woman I call my master teacher set me straight. Why do we need a reason to love?

If I’ve said it once I’ve said it one hundred times, she is worth listen too.

PCAE – Janine

August 25, Melissa, her mom, Kathy and Janine met with neurologist Dr Farrel Douglas.

Dr Douglas accepted a generous donate on behalf of the United Leukodystrophy Foundation.

Bobbi Burgstone, Executive Director at ULF expressed by phone her gratitude for the contribution and excitement for Melissa’s achievements.

photo