Avery Grace

Avery Grace

Monday, December 25, 2017

Beeson 2017 Holiday Letter

Beeson Family 2017

“Thankfulness creates gratitude which generates contentment that causes peace” - Todd Stocker

“I don’t have to chase extraordinary moments to find happiness.  It’s right in front of me if I’m paying attention and practicing gratitude.”-  Brene Brown

Greetings from Frisco, Texas!  While I neglect the shopping, paperwork, unreturned calls and unanswered emails, there’s a peaceful scene to my direct right, as my littlest light sleeps soundly and warmly beside me.  The daylight is long gone, and we’ve just wrapped up a busy Thanksgiving weekend catching up with loved ones, filling our bellies with wonderful food and our souls with happy memories. 

If 2016 was the year of discovery, then 2017 was the year of reckoning with our new status quo.  Amidst the hustle and bustle of holiday chaos, I have vacillated on whether or not to write this traditional holiday update as I fear I lack originality and creativity in times like these when I am barely keeping my head above water. Juggling a career, everyday mom stresses parenting our middles, plus the tremendous load of caring for two medically complex and special needs kiddos (whose schedules would make any mentally stable person certifiably insane) is quite the undertaking.  Thankfully, I am well supported by loved ones, including my family and the amazing April, who shows up day in and day out for every part of our journey.  So here I am, the day after Thanksgiving- staring at my computer, trying to make enough sense of the last 12 months to wrap it up with words and share a little bit of my heart with you, my dear family and friends.   I am certain of very few things, but this I know-  we are truly favored and blessed to be afforded the opportunity to live our lives amongst loved ones. Even on our hardest days, we are coming to realize that part understanding and experiencing true and pure joy is a direct result from also enduring the struggles we meet head on as we navigate our sometimes amazing, and other times heartbreaking journey as the Beeson 6. 

This year I’ll change it up a bit, and start with the youngest of our tribe.  Paxton Graham is three this holiday season!  I think the words brave, happy, silly, and beloved describe him best.  It’s been two years since his brain surgery to place his VP shunt, and about a year and a half since we learned of his genetic diagnosis, Tatton-Brown Rahman Syndrome (TBRS), resulting from a fluke mutation on his 2nd chromosome.  TBRS impacts our every day, and is so rare, currently only about 100 people worldwide have been identified.  In addition to epilepsy, muscle tone abnormalities and an intellectual disability, Paxton’s mutation has significant medical and health implications. About a year ago we learned after dozens of serious infections that Paxton has a t-cell deficiency known as lymphocytopenia- which is life threatening and incurable.  As treatment, he began his journey of IVIG infusions every 3-4 weeks last January.  Our prayer is that this will keep his immune system strong enough to fight off cancers and deadly infections.  His risk of leukemia and lymphoma is significant.  Just last week he had a central line (port) placed on the left side of his chest to ease the constant sticks from frequent and regular blood work and infusions.  As he has done with every obstacle faced in his short life, Paxton powered through this most recent surgery with grit and giggles-  only scaring us after he woke up when we learned of his breathing difficulties while under anesthesia.  Paxton is one tough cookie, and he works hard every day to walk and talk (and now almost run!)  He attends two schools, and many hours of therapy a week- and is speaking in sentences while bringing smiles and laughter to our hearts and home every. single. day.  He is such as light.  He is so very loved and adored, and we remain humbled and grateful that this outstanding little person completed our family.

Presley Hope is seven, and is rocking first grade!  Presley’s kind heart and sense of humor keep all of us rolling with laughter and grinning with pride.  Her teachers describe her as compassionate, funny, and eager to learn, and we wholeheartedly agree!  Presley loves to read, do gymnastics, play tennis, swim, sing, use her vivid imagination and “dance it out.”  This kid will move mountains, I tell you!  She is strong, fierce and full of passion.  It is a sheer pleasure to be her mom.

Kaylin Joy is nine and is thriving in fourth grade!  Kaylin loves to please people, and make them laugh!  She has a wonderful way of caring for her siblings and babies, and is responsible, regimented, and helpful.  Kaylin loves to do puzzles, spell, play volleyball, make videos, build amazing cities with legos, create beautiful artwork, and nurture/spoil her baby brother.  She is maturing every day, and we are beaming with pride at the human she is becoming.  She is loyal, loving, compassionate, brave and full of wonder.  I am so grateful to be able to sit back and watch her shine!

Avery Grace is eleven, and exudes love and peace. This precious light is in her last year of elementary school with an amazing group of women who have loved and cared for her over the last 7 years.  Avery is 5’4”, and is physically maturing, but in every other way is still very much like an infant.  She loves iPads, music, snuggling, and her people. Avery is well hydrated and nourished thanks to her g-tube, and is still somewhat ambulatory thanks to her amazing caregivers, teachers and therapists.  Avery’s dystonia has made movements in her hands and feet even more challenging, and her epilepsy has worsened some as we adjust to the adolescent hormone invasion.  Most of you know Avery has a frameshift mutation on her 22nd chromosome (also a fluke) resulting in Phelan-McDermid Syndrome, and though her challenges are great, the love we have for her is MUCH greater.  All in all, Avery is just as big a part of our hearts and family as anyone, and we enjoy taking her with us on the journey, and helping the world understand her a little better with each passing day. 

Bryan and I continue to pour ourselves in to jobs that we love, and our kids, whom we love even more. Thankfully, we still make the effort to be present, loyal and loving to each other.  I’ll happily admit that there is no better partner for me than Bryan Beeson.  His loyal, calm demeanor, optimism, constant love and gentle support keep me from spiraling out of control. I know as the circles of life spin, I’ll choose him again and again- as I can’t imagine living this crazy life without him. 

This is the time of year that we are reminded of the importance of love.  Love eases our suffering, heals our hurts, and can make any burden seem lighter.  It’s a time when we remember you, our loved ones, for our greatest blessings are the people that color our lives- family, friends, colleagues, and acquaintances. Our wish for all of you is that you are able to cultivate courage from fear, grace from disappointment, and love from heartbreak.  In our experience, it is our struggle that has been our greatest teacher, and because of it, our lives are so much richer and and fuller.  We are proud of our story as it continues to unfold, tear stained pages and all.   Merry Christmas to every one of you and your loved ones. 

May you find peace and joy this season and throughout 2018.  

With Love,
Bryan, Jenny, Avery Grace, Kaylin Joy, Presley Hope and Paxton Graham Beeson