To: HOPE From: Steele

A simple box wrapped  in gold and white striped Christmas paper with a christmas tree tag reading:

To:  HOPE  From: Steele 

After all the presents were open Christmas morning, I came across the lone gift under our tree.   Steele, my 12 year old son, picked it up and handed it to me.  He said, “this is my present to Hope, will you make sure the researchers get it?”  With his ok, I opened the gift and to my surprise I found a Nike shoe box and inside loose cash and change… all the money to his name,  with a letter reading:

Dear HOPE,   In the Dictionary Hope is described as a feeling of expectation and desire for a certain thing to happen, in our case we Hope that Will be cured of the Batten Disease.  I myself pray to the Lord, our God,  that this Hope becomes a reality, more than anything else on the planet, more than a billion, more than a trillion billion dollars, unless only I could donate that money to HOPE. I know that the money in this box isn’t a lot but it is all the money I have, but I know in my heart that I’m giving this money to the right cause, even if only it’s a small amount. Just being that much closer to a cure means more to me than any present I could get unless it’s the cure.  Having a cure for Will’s Batten disease means more to me than any career I could ever have, even an acting career.

So whoever reading this, please find a way to give this money to Hope along with this letter to the researchers that are working to find a cure for Will’s Battens Disease and the researchers working day and night to find a cure for Will’s Battens Disease. Thank you from the bottom of my heart. Thank You and God Bless You! Merry Christmas from Will’s little brother, Steele.

WOW.  Just simply wow.  My heart fluttered and my eyes welled up with tears as Steele shared his gift with his brother, explaining that his only Christmas wish was for a cure to help him.

Steele and Will have always had a special bond.   Will, born 25 months before his little brother, adored him from the moment he laid eyes on him.  They were inseparable from the moment Steele could crawl. Will always doting on his little Steeleman.  Will was the quintessential first child, a rule follower, passive we could take him anywhere: shopping, steakhouses, you name it… Will loved his car seat, stroller, and most of all co-sleeping.  Steele came into this world a fighter, an independent soul…. Bright blue eyes with a soft curly hair, he suffered with intense respiratory issues, Acid reflux and ear infections.  We slept holding him straight up for six months, he fought to breathe in those early days, born a little warrior.  As he became old enough to run and play… he was the instigator… teaching his mild mannered brother how to climb on tables, wrestle and play rough.  Will was scared of stuffed animals, but Steele loved them and taught Will a love for them too, leading to Will’s Build a Bear obsession. Will taught Steele how to ride four wheelers, how to hug, love and be kind. It was in his nature since birth, the child couldn’t hurt a fly and Steele relished every bit of Will’s affection.

Three years later, Magnus joined the crew, rounding out the troop.  Rough and tumble from the moment he breathed his first breath.  We affectionately called him Toot Toot and stuck.  The boys took him under their wing and loved him like a cub.  We did not allow fighting among the boys, God had given them each other, a gift of brotherhood and friendship for life. It was something to be cherished and nurtured and this was long before the word batten entered our vocabulary or began to guide our steps. The boys caught on and realized it was the one rule I would not negotiate and luckily for us, it became their way of life.

So today… I  guess I should not be surprised at the way these boys love their big brother, but I continue to be each day.  It is unexpected that little brothers would decide on their own to love, honor, and wear HOPE on their sleeve for their biggest brother, a relationship that goes against the natural progression of life. He truly is their biggest fan, they are his “best brothers,” truly his only friends.  I still remember the first time my little Magnus, a good five years Will’s junior and easily 2 feet smaller, took Will’s hand to lead him.  It broke my heart that a child of Magnus’ young age would need to feel the responsibility of taking care of his big brother;  Oh…  but the pride I felt watching him was a moment I will never forget.

Back to the letter,  Steele’s Christmas desire and the fact that a 12 year recognizes that a brother, a relationship, and a person’s love is worth more than anything else in the entire world…that he would give his every last penny to pay for research to save him.. now THAT is inspiring.  You learn when you give, give to the point of sacrifice; give not a little, but give until it hurts;  give to an uncomfortable state.  That’s when you learn the true meaning of giving.

Back to Christmas morning and I stared into by sweet Steele’s 12 year old soft blue gray eyes I explained that we are working very hard to save Will with the research.  And while we pray everyday that the clinical trial will be soon,  unfortunately  so much of this process is out of our control. So we will have to rely on our faith and believe in HOPE. I assured him we will not stop until we find a cure for this dreadful disease and God willing,  it will be in time to help save our Will.

A tough conversation for me to have, even tougher for a 12 year old to understand….

So I continued to share… we must focus on things we can control and leave the rest to our faith and prayers to God.  We are in control of our attitude, the life we lead, the way we can use our hope to inspire others and urge people take their passion to  fuel good positive change because if we had chosen to do nothing nine years ago, there would be no HOPE at all.

And HOPE is empowering.

Hope has inspired our family to live each day to the absolute fullest;

Because of HOPE we have been introduced to some of the most amazingly good people who have shared love, donations and passion to help Will;

These actions shows us the importance of giving, sharing God’s love, living for each day and taking care of the people around us.

HOPE has shown our family that everyone has a story and a struggle. Some you can see and others you can’t.  That you can have compassion and empathy and the amazing difference that an understanding of these complexities of life can makes to those who are struggling.

Had we not started this effort called HOPE, we would live in darkness waiting for the next symptom to start and counting the days to death. Instead we celebrate all the wonderful things Will is able to do with his limitations and look forward to a tomorrow full of light.

Hope has provided all of this for our family.

Hope has shown that if you truly believe in something, even what is considered to be the impossible, HOPE will lead the way to possible.  YOU just have to believe something amazing is going to happen.  The journey is not always smooth, and the path is not always well lit; and there are times when you have to trust the light in your heart to guide the way.  If you listen very carefully, it will.

I had an amazing lunch with a local chaplain recently who reminded me that the voice inside your head or you feel in your heart is God speaking to you; you just have to be still enough and willing to listen.

I truly believe God shared a message to inspire Steele to give and believe in “Hope.”  He used that message to remind our family to keep believing too. So, I’m asking you:  “what will believing in Hope do in your life this new year?”   If you give it the opportunity, I promise it will take you into the most beautiful place of peace.

I will leave you today with a scripture and a quote:

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you HOPE and a future.”  Jeremiah 29:11

“God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”  (By Reinhold Niebuhr)

Believe in HOPE,  believe in yourself and always believe something amazing is about to happen!

Love and HUGS!

Missy