The Season of Hope

(Originally published December 2020)

Do you know what I love about Christmas more than anything else? Yes, I love old traditions with my family. I love gathering, breaking bread, spending time laughing, and telling stories.

I also absolutely love creating new traditions with my children and husband. I love jumping in the car with hot cocoa and cookies and driving around in the dark, checking out the best Christmas light displays. I love reading stories about the true meaning of Christmas. I love seeing my kids squeal with delight when they see the tree on Christmas morning.

There are so many parts of celebrating that give me joy. But in my heart, there is one part of Christmas that is the shining star on top of the tree. The thing I love more than anything else is that Christmas is the season of HOPE!

You see, I’m a mother of a child with a rare disease.  On one dark day years ago, our doctor delivered the news no parent wants to hear. We were told our beautiful eighteen-month-old son had a life-threatening illness that would slowly rob his body of his strength. We were told there was no treatment. We were told there was no cure. We were told there was nothing we could do.  We were told words that conveyed the absence of hope.  As we wrestled around with that diagnosis and those words that shook us to our very core, we were lost.

Enter hope.

Hope is what got us up out of bed. Hope is what helped us plug into the organization for my son’s disease. Hope is what drove us to jump on a plane and fly across the country to attend the Cure SMA conference. Hope made us start looking to see if there was research towards a treatment or cure being done for our son’s disease. Hope fueled us to drive eight hours to meet with a researcher who was making progress on a new potential treatment. Hope is what gave us the strength, through trepidation, to enroll our son in a clinical trial.

Hope is what changed our lives.

To me, hope is the most beautiful of virtues, and Christmas is the season of hope. It is the season to believe in things we cannot see. It is the season to expect good things that await. The story of Christmas is the story of Jesus’ birth, a story of hope and expectantly waiting.

So many of us are in a season of expectantly waiting. So many of us are weary and hoping for brighter days and better things to come.

Every year around the holidays, I begin to hear Christmas songs on my music station. The song that resonates with me the most and whose lyrics often bring me to tears is “O Holy Night.”

2020 has been a very difficult year for many of us. It has been a trying time on top of the already challenging rare-disease path. Those lyrics about a weary world rejoicing hit me more than ever this Christmas season.  This year has worn me out and made me weary. It has tested my patience and wherewithal. It has thrown unexpected curve balls and changed many well-laid plans. It has asked me to stay quarantined and apart from many of my family and friends. It has laid additional tasks on my already full plate. It has offered little breaks.

It has expected too much.

I feel the weariness mentally, emotionally, and physically. But I am reminded that I have weathered hard days before. I can recall those days, and I can once again call upon what got me through. Hope!

Hope is at the heart of Christmas. Why is there hope? Because Jesus was born. Christ coming into this world offers hope. Christ’s coming marked the first visible reality of hope fulfilled. Hope, as the song says, provides a thrill! That thrill is the feeling of expectation and desire for a certain thing to happen, a sense of trust. In the Bible, hope is the confident expectation of what God has promised, and its strength is in His faithfulness.

My son’s diagnosis gave us no reason for hope. Then in 2006, just two days before Christmas, the first-ever treatment for our son’s disease was approved by the FDA.

We fell on our knees; we heard the angel’s voices. Where once there was no way, now there was new hope. Our dark road had a new light illuminating its path.

I know we are all in different places in our journey. We are all up against various obstacles. Some of us are still trying to find answers about our child’s diagnosis. Some of us are waiting for treatment options. Many of us are praying for cures.

For rare-disease families like ours, we don’t know what the future holds. We are often in unchartered territory. We are feeling our way through every step. Often, no one can tell us how our children’s futures will look. No one can tell us with certain outcomes and definitive understanding. We are moving through it bit by bit.

I don’t know about you, but I am clinging to hope. I am telling you without a shred of doubt; hope has changed my family’s life. It has been our lamp in the darkness. If there is any message that my son’s life and my Rare Mamas message can stand for, it’s hope!

Every Christmas, when we do our family card, we include a message of hope. We’ve done it for the past eight years. Maybe it’s repetitive, and perhaps it’s getting old. But I include it because I want to remind those that I love that hope is always a choice despite our circumstances. My family’s circumstances were dark and unhopeful, and yet here we are. Here we are years later with a different outcome than what we were told was so sure. Here we are years later, with hope in our hearts.

Hope is a beautiful thing that allows for miracles, possibilities, options, opportunities, chances, and the unexpected. And really, isn’t that what we all need right now?

When we look at our current circumstances and look at the world at large, perhaps we have reason to feel hopeless and weary. But just because there may be reasons to forgo hope doesn’t mean we should. Hope may not transform our present situation immediately, but it will change our response to it. It will allow us to respond with bravery, creativity, and openness. This has the potential to shape outcomes. If we have faith and trust and believe that things may be better, our responses look much different from if we don’t. Hope shifts our choices and actions.

Another thing hope can change: us. We may not be able to change our circumstances, but we can change ourselves. Hope is the response to difficult situations that can make things better because it can make us better. Darkness and difficulties test us to no end. If we choose hope over despair, it can be the catalyst for the highest good. It can help us reach our highest self.

Christmas is the reminder we need to hope. To expect with confidence and to cherish our desires with anticipation. Christmas is the celebration of Immanuel — “God with us.” God did what He said He would. Christ was born. 

Hope is, indeed, at the heart of Christmas.

Hope lit the way for my family’s hard path before, and it will light the way for our weary path now.

As I set the presents under the tree, I will give thanks for the gift of Hope. I will look to the new year with expectant waiting. I will trust that there is goodness to come. I will have peace in my heart because God is at work.

O holy night. What a thrill!