There are so many beautiful reasons to be happy.
There is a peace that comes with caring for those who are suffering. No matter what they must endure, the humility and purpose that arises from delivering compassion, love, and even mundane daily support can uplift us, even in the most dire of circumstances.
I waited to write this letter until the (hopefully) last of the Beeson health struggles of 2015 had a resolution. My beloved baby boy, Paxton, was released from the hospital yesterday following brain surgery last week to treat his hydrocephalus/ventriculomegaly. Little man endured the surgery like the super-hero that he is, and he is busy resting and recovering in the secure arms of daddy’s lap as I sit here at my computer screen. When we got home yesterday, I couldn’t wait to see all of my girls, and begin the tasks that I all too often complain about. Meal prep, helping with arts and crafts, refereeing hourly spats between my middle two loves, and helping Avery complete every single aspect of daily living from feeding to diapering to self-care and mobility assistance. In doing so, a calmness overcame me, as I realized the crisis of the moment was over, and together we could celebrate just BEING. Without drama, fear, or anxiety. In that moment, and a thousand others like them, I am reminded of the magnitude of grace, love, joy, hope and kindness that surround and encompass me daily, And that whether I choose to recognize it in the moment or not, there is always, always something to be grateful for.
Like all of you taking the time to read this, the six of us have had a year of ups and downs. Our hearts are stronger for the aches they’ve endured, and our hopes are fueled by little leaps of progress and by keeping perspective in mind as we march forward in our journeys both individually and collectively.
Avery is 9, and since many of you always ask, she is still lovely, silly, sassy and easy though her mind and body are wrecked by Rett Syndrome. She doesn’t speak a word, but seems to connect a little bit more each year, and though she is taller and heavier, making caring for her sometimes more cumbersome and difficult, she is innocent and precious. She still loves her ipad(s) and lounging around at home. She also tolerates many hours of therapies, and gets to ride horses on the weekend when the weather permits.
Kaylin is 7, and precocious and bright. She loves to swim, play volleyball and basketball, play with her siblings, carry her brother around, and be right in any argument. She is an excellent speller, learning to be a good friend, and is going to be an awesome babysitter one day. She gets to participate in “sib-shop” this year, which offers support for special needs siblings. We are so grateful for this program. It’s fun and fascinating to watch her find her way in this world.
Presley is 5- how on earth did that happen so fast? She is also a shining light in our family, and is quite the jokester. She LOVES to swim and takes dance classes- which are adorable and hysterical to watch. She is learning to read and spends most of her free time playing with babies, asking questions, or watching you-tube kid videos promoting new toys. We love this little fashionista.
Pax-man will be TWO in January. He is quite the character. He loves throwing balls (and pretty much anything else he gets his hands on), watching his sisters, being the center of attention, being held by his momma, snuggling, and Mickey Mouse. He is learning to walk and talk and is so much fun to be around. The kid smiles ALL the time. Though developmentally delayed due to the differences in his brain, this boy makes up for it in personality, and we have all the hope in the world that the surgery he just endured along with awesome therapists, doctors and caregivers will afford him the most awesome opportunity to THRIVE.
Bryan and I are blessed to both have jobs/careers that we love, and are very thankful to be able to come together for date night about once a week to remind ourselves how much we also really do love each other. Four kids, especially ones with needs like ours, is a lot- but we wouldn’t have it ANY other way, and though it is often chaotic and loud, our lives are made from the moments we care for each other in everyday living. I’m always telling my girls that the MOST important thing we can do in our life is be kind. Kind to ourselves, our loved ones, our friends, acquaintances, and strangers. So many of you have reached out to us in our hours of need. We have literally been SHOWERED with kindness over the last year. From well wishes to prayers, to meals, to watching our kiddos, THANK YOU. From the depths of our hearts, thank you. For not only showing up, but for showing our kids that kindness matters. You made our spirits bright. And in a holiday season that was shadowed with fear, you brightened it with hope, cheer, and love.
Lots of love- Bryan, Jenny, Avery Grace, Kaylin Joy, Presley Hope and Paxton Graham Beeson
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