Friday, November 3, 2017

BE the good.

Wow. Some things in life just leave you speechless.  That is how I feel about our past weekend with Oticon staff and families attending their 2017 Patient Advocate Workshop: Our New Hearing Superstars.  The weekend highlighted education, support, and advocacy for pediatrics with bone-anchored hearing devices just like our Brody.  While the spotlight was on our kiddos, we were all treated like movie stars!

We were extremely overwhelmed with this weekend a year ago (read more here) and completely honored to return this year.  It was indeed a special weekend and its taken me a few days to put the weekend into words.

As I've tried to wrap my mind around how special our New Jersey trip was, one word continues to come to mind. People.  People have the ability to be your biggest blessing or cause the deepest heartache.  This past weekend, people were the good! Let me share.

Throughout our weekend, we spent our time with Oticon Medical staff. (Oticon makes our son's hearing devices, the pontos.)  During the event, we ate, talked, shared, learned, advocated, played, and relaxed.  All of this was done with the Oticon staff interspersed amongst us.  Not because they had to but because they wanted to. We have come to know their families, their hobbies, their jobs.  The Oticon staff has come to know and love our families.  They thought of every detail to make our weekend special.  From treat bags at check-in to t-shirts for the children. From a crazy fun day at iplayamerica for kiddos (while the parents workshopped) to cotton candy, churros, and fried oreos for dessert. (oh and the teeny tiny milk and cookies!).

From stuffed animals that wear pontos like our kiddos to light-up balls for play on the bus ride home.   We received gifts galore! (I should have brought an extra suitcase!)  Not only did they spoil us but they got to know us and particularly our children's stories.  We dined together.....sharing, laughing, and crying.  We played together.....laser tag was so fun!  They thought about us. Our needs.  Our hopes.  They listened to us. They cared.

But mostly, they feel like family. Family we are grateful for.  Because you see, when a group of people gives your child the gift of hearing, it is  a priceless gift.  We can never say thank you enough.

Brody and his Oticon buddy, Lindzee

A year ago our friendship with Oticon Medical staff began and we were excited to see so many friends again.  But this year it was an added bonus all the new friends to be made!  We shared the weekend with 13 other guest families.  Each family had a child with microtia (partial to no ear) who wears a bone anchored hearing device or ponto.  Some children wore theirs on a band like Brody.  Others had theirs implanted into their skull.  Some children had reconstructive ear surgery, others had not.  Eight of the families chose their hearing impaired child through adoption. Talk about having a lot in common!  These are fine people.  Good people.  People who make you want to be a better person.  Two mommas have been pioneers for microtia awareness.  One by starting a global nonprofit, Ear Community, that serves to educate, promote awareness, and link microtia families together.  The other leads five major microtia/atresia/bone anchored hearing device facebook support groups.  They have selflessly given of their time and energy to support families just like ourselves.  We met parents who have advocated relentlessly to meet their child's needs.  We met children who are living life courageously despite several medical challenges.  We learned from other parents how to fight the insurance battle and better advocate for our child's needs.  We learned from the children that though they may be young, there is an unspeakable bond that occurs between children who have similar challenges.
Some of Brody's buddies

Our weekend was amazing. Full of learning and sharing and fun.  At the end of each day, we were completely exhausted.  But exhausted in the best kind of way.  Exhaustion that allows you to sleep well and wake-up rejuvenated and ready.  Because when you are surrounded by goodness, you want to BE the good too.  You want to share the goodness with others.  So be inspired by our Oticon family and heed these words from Galatians 6. 

Friday, January 13, 2017

Add the sprinkles!!!

It was about fifteen years ago when my husband and his good friend traveled to Atlanta to watch a big football game.  We were young, poor, and rarely afforded such "treats" as a just-for-fun road trip.  While on this trip the two guys decided to have an ice cream snack at Baskin Robbins.  While my hubby's friend was quick to make his ice cream choice, my love had a hard time deciding if he should spend the extra 25 cents on sprinkles for his ice cream.  As he debated and debated, even wondering if I would be upset about the extra money spent, his good friend jumped in and said, "Buddy, I'll give you the quarter to buy your sprinkles.  Add the sprinkles!"

This story quickly rushed back to our memory this past week when my husband celebrated his fortieth birthday.  We laughed with fondness as he opened his gift from the roadtrip friend and it was a jar of colorful sprinkles.  The very funny card wished my husband a happy birthday and ended with "Add the sprinkles!"  As we shared this story with our children who wondered why Dad received sprinkles for a gift (AND did this mean we would have ice cream soon), it brought back many memories of a simpler time for us.  A time of focused survival, God providing for our needs, sacrificing much, but oblivious to the material sacrifices because we were "livin' on love!"  Upon hearing the story, our children could not BELIEVE Dad could not afford 25cent sprinkles!!!  And actually, as I think back on that time, it is hard for me to remember just how "tight" things were, how little there was for any extras, how special a treat was when you received it so rarely.

So as the past few days have come and gone bringing in a new year, I continue to reflect on this story.  I too need to "Add the sprinkles!"  I like to live life compartmentalized, living off to-do lists, first I'll do this, then I'll start that.  I've been known to say, "Child, let me get this and that done, THEN I can play ball with you."  Dayla, its time to stop this way of thinking and add the sprinkles!  Add them to the rushed moments as everyone starts their day, by sharing a warm smile and hug with my family.  Add them to my busy errands/appointments by sharing a laugh, a smile, a story with a stranger.  Add them to the busy evenings filled with homework, dinner, and activities by choosing to have a spontaneous dance party during after dinner clean-up. Add the sprinkles! Now. Don't wait.  Add the sprinkles and soon you will be tasting the sweet joys that come from living NOW. Not later, after this task is complete, once I meet this goal, when the kids are grown.  NOW.  The time is now.  Oh Dayla, hear these words and live them!