Avery Grace

Avery Grace

Tuesday, December 25, 2012

2012 Holiday Letter

 It’s the season of sparkle and shine.  A time to be jolly and bright.  As the days get shorter and the neighborhood homes are illuminated with holiday color, I watch the gleam in my young daughters’ eyes shine with expectation, delight, and wonder.  It is a time to reflect on our many blessings, and to share good tidings with family and friends.  It’s easy to get lost in the beauty of the season, but also just as easy for families like ours to take pause and wish for just enough hope to get through without incident, as we sometimes struggle to find strength and gratitude amidst the chaos.  But if we have learned anything at all in our journey, it is that there are always reasons to be thankful, and that most of our anguish has some sort of silver lining, though at times it may be hard to find.  Some of our shining moments from 2012 include:

1. The “Love Ambush.”  Every day for almost a month, many of our friends organized anonymous gifts to be delivered to our door with messages of love, hope and support.  It was an experience like none other, and we were humbled and full of gratitude for their show of overwhelming compassion and care.  I think that more often than not, people don’t know what to do when they have friends like us.  When someone has cancer or surgery you may make them dinner or help with their kids.  When someone has a child with constant medical issues and a severe intellectual disability that baffles doctors and therapists for years.... then what?  Well, we must have the best friends in the world because they figured out a way to let us know they get it.  That they love us, and love our children, despite disability.  It was an amazing experience that we will never forget. Grateful just doesn’t seem to give it enough justice.

2. The water.  Summer brings with it lots of heat and uncertainty as our schedules change and we plan around two working parents and three busy little girls.  We spent lots of time together in our pool, and Kaylin (4) is our big, independent swimmer!  We traveled to Atlanta over July 4th and enjoyed a week of awesome family time and most every day at the country club pool in my parent’s neighborhood.  The water is something all three girls enjoy tremendously, and Bryan and I love to see our babies happy and free.

3. Another 2 year old who talks!  Given Avery’s story, it is with a BIG sigh of relief that we reached another milestone with our third baby girl.  She turned two, and is talking with no developmental regressions!  Wooo hooo!  We did discover that she has terrible vision, but thankfully, her glasses are precious, and she LOVES wearing them.  Presley is a delightful toddler who loves her days at home and on the go with our A-W-E-S-O-M-E nanny/respite care provider who we are so lucky to have known the last 4+ years.  April, our nanny, is a BIG blessing to the Beeson 5.

4. Pre-K and First Grade. Kaylin attends Pre-K at an Episcopal School near our home.  She “played” soccer this fall, though she had more fun twirling, skipping and singing on the field.  She loves swimming and karate, and is an extraordinary sister to Avery and Presley.  She has enough energy to light up a city, and brings so much joy and laughter (and plenty of trouble) in to our home and hearts.  Avery is six years old and is in a special education class here in Frisco and also attends 30+ hours of therapy a week, including weekends, to help her in every way.  She is THE hardest working person I know. Avery is still non-verbal, and rarely makes any sounds, but we have seen some improvements in her skills, though the progress is painfully slow and very hard to measure.  Unfortunately, she incurred a few  significant injuries this year, as she continues to struggle with her motor skills, and was recently diagnosed with epilepsy. Despite her obvious needs and difficulties, she embodies love and grace, and challenges us to be stronger, and better in every way.   Avery may be harder to reach, but her impact is immeasurable as she defines unconditional love and brings out the most amazing qualities in the people she knows and  adores.

5. Back to school.  I guess I decided our life wasn’t stressful enough, so I went back to school this year to become board certified in behavior analysis.  I was accepted into a program at UNT for students who already have a masters degree, and am taking online graduate classes while working as a therapist 4-5 days a week to acquire the mandatory 1500 supervision hours.  I enjoy the job tremendously, and mostly see it as a welcome break from our own personal and constant crisis.  Bryan has been an amazing partner and full time daddy on the weekends as I study and complete projects. 

6. Speaking of Bryan...Our husband/daddy extraodinaire is really excelling in his career in the energy industry, and (despite a very long commute) seems to really like his job as a business development manager at Hudson Energy.  Thankfully, we were able to get away this year (just the 2 of us) as a very dear friend tied the knot in Cape Cod.  It was an awesome trip, and a beautiful event which provided us marvelous opportunity to spend some restful, kid-free time together. 

7.  The broken elbow.  While poor Avery sustained a nasty knee injury, a new diagnosis of epilepsy and a broken shoulder this year, I fell while holding Presley and broke my dominant elbow.  OUCH!  The only silver lining in that mess is that the fabulous and amazing Grammy has flown in S E V E R A L times to help with the girls, which they love, and tend to me, which I love too.  She is the expert in caring, hard work, love and attention.  Though I could have done without the hassle and pain, it has been a welcome addition to have my sweet mom here so often to spend time with and learn from.  I wish you could see her connect with my girls... even Avery.  Avery loves to be acknowledged, played with, and talked to. And while many people don’t realize that, my mom always makes a BIG effort to find a way to reach our sweet girl. 

8.  Another walk of hope.  Every year, we encourage our friends and family to come walk with us in the Dallas area Autism Speaks fundraiser.  Our team, Avery’s ARMY, lifts us up and reminds us to keep fighting.  I want my younger girls to know that we walk for Avery year after year to raise awareness and hope.  It is important for them to see the “big picture” and realize that Avery is an individual first and foremost, who also happens to have a debilitating disorder.  A disorder that has not only taken so much from Avery, but one that changes our every moment of every day, and makes our family unique and our daily lives incredibly challenging.   We are so grateful for the dedication of our loved ones who take a few hours out of their busy lives to participate. Though there are other Autism charities we prefer to financially support, Autism Speaks does a nice job making our girl feel special by hosting a walk that allows us to gather together as an army of supporters.

With all of that said, the aspect of our lives that outshines the rest is our connection to others and our constant realization that we are surrounded by the amazing allegiance and amity of all of you.  Our journey has afforded us the opportunity to learn how to live in the present, focus on the positives, learn how to truly love without conditions, and perhaps most importantly, develop the most amazing friendships that have expanded and enhanced our family tremendously.  We hope you and yours have a glorious holiday season and a 2013 full of silver linings and precious memories.

Love and Peace,

Bryan, Jenny, Avery Grace, Kaylin Joy & Presley Hope Beeson

No comments: