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 

2016 Holiday Letter

2016.  There was laughter and yelling, joy, heartache, adventure, stress, hard work, kisses, hugs, tears, and a whole lot of love.  There were sleepless nights in hospital beds, and magical trips spent with loved ones and friends.  The good days far outweighed the bad, and time marched on as it always does.  If you know me via social media, this holiday letter may seem redundant.  But, any chance I get to share our story of hope, perseverance, unique needs and the raw, hard and sometimes beautiful reality of disability and disease- offers me the opportunity to heal, and hopefully make someone out there feel a little less isolated. So here goes again… The 2016 Beeson holiday letter.

The year started off strong!  The middles (Kaylin, 8 and Presley, 6) were thriving in school.  Presley was making us laugh every single day, finishing up her last year of preschool, (how is she in kindergarten already), Kaylin was making friends, playing volleyball and acing her spelling tests.  Avery was steady and surrounded by her loving teachers, therapists and caregiver- all who have known and loved her for several years, and Pax was astonishing all of us with his miraculous recovery and rebound from his brain surgery in December 2015 where his neurosurgeon placed a VP shunt.  Shortly after his second birthday in January, he began walking and talking in short phrases.  We were on cloud nine.  Those days were so blissful.  Then came some harder days.

At the very end of February we received a letter from a geneticist that rocked me to my core.  Avery (10), Paxton (2), Bryan and I had all had blood drawn in October for Whole Exome Sequence testing to determine any new genetic abnormalities that might explain their (Aves and Pax’) delays/disabilities.  New advances were being made all the time, and though all previous genetic testing for Avery yielded no meaningful results, this time was different.  It was, quite frankly, a relief to finally have answers for Avery’s condition.  Avery has a mutation on the SHANK3 gene on her 22nd chromosome causing a condition called Phelan-McDermid Syndrome, or 22q13.  She is still followed by Rett Syndrome specialists since she fits the clinical diagnosis criteria, but now she is also seeing researchers, neurologists and many other specialists specific to her new diagnosis.  We are so hopeful and prayerful that time, precious time, will bring forth new treatments for her struggle.  She is such a delight in so many ways, but is so limited in her ability to function independently at all.  She still needs assistance in every single part of her day from diapering, feeding, walking, hand washing, any self care etc.  She is our silent angel.  Also in the letter (the part that quite literally brought me to my knees) was the information that Paxton also has a genetic mutation.  His genetic mutation is on the 2nd chromosome, and is associated with an intellectual disability, seizures, which we also got to experience with him (first time) and Avery (as usual) this year, overgrowth, risk of cancers/leukemia specifically, as well as possible heart and brain abnormalities. His condition is called Tatton-Brown Rahman Syndrome, or DMNT3A.  This was a BIG blow. Our kids each have a very (VERY) rare, and different, pathogenic genetic mutation- and neither was was “inherited.”  What are the odds.  It all just seemed like crazy, bad luck.  My heart was broken that day and in the few days that followed.

Just like we alway do, we picked up the pieces and began to learn. Time was spent researching, seeking out doctors/specialists, trying to help our two medical mysteries as much as we could, while still trying our best to find regular, everyday joy with all four of our little lights.  This family tries hard not to leave out our “typical” little blessings. Presley and Kaylin were enjoying their individual activities, as well as gaining interest in participating in the therapies that help Avery and Pax. They love to hear from Avery through her communication device on her iPad, and to help Paxton gain speed in his motor and cognitive abilities.  Both middles were happy and healthy, thank God.  In the late winter and spring, Paxton was sick (ALL THE TIME) and we added a few new diagnoses to his growing list.  Asthma, Eosinophilic Esophagitis-  all of which landed us in the hospital several times for pneumonia, fevers, vomiting.  Our beloved nanny took an ambulance ride with Pax following his first full blown seizure-  and we were left scrambling as to why he couldn’t seem to get well.  On a developmental level, however, that warrior baby boy continued to thrive.  And we were so thankful for that.

Gratitude is the glue that holds my sanity together.  In July, we were lucky enough to get to spend a few precious weeks in Georgia.  Soaking up the sun with family and loved ones- enjoying a bit of normalcy in our less that “normal” seeming lives.  The end of summer brought new hope as Paxton started school at St. Phillips Episcopal, our favorite preschool,  Presley and Kaylin were in kinder and third at the same school, and Avery was back with her tribe of supporters at her school.  Avery’s interest in drinking enough fluids was waning at this time, and in October, she had a G-tube placed in her abdomen to improve nutrition/hydration. She glided through that like the champion that she is, always reminding us of her strength and grace. The button on her belly has actually been a blessing.  It is nice not to worry so much about her intake, as now we can control it when needed. In November we learned that Paxton has a primary immune disorder (another new diagnosis) and will need IVIG transfusions monthly for the foreseeable future.  We are battling insurance now to get that started- and are trying to wrap our brains around yet another diagnosis we weren’t expecting and that no kid should have to battle.  His immunologist did some research on Paxton’s specific genetic mutation, and believes that the genes next to his mutated genes are responsible for his lymphopenia, or lack of T-cells.

On a lighter note, Bryan and I both love our jobs, and even had a few quick getaways to Vegas and NYC.  And we still regularly enjoy date nights about once a week.  We could NOT do any of this without a tremendous commitment of help- and we are beyond grateful that our kids are so loved and cared for by the amazing April.  She makes our lives so much better- and brings lots of laughter, organization and creativity in to our home every day.  Speaking of support, I couldn’t possibly write about this year without mention of my mom.  If you know my mom then you know she works hard, loves fiercely, and is about the best caregiver of physical and emotional support out there.  Though she lives in Atlanta, we have been so so lucky to have her come visit and help us frequently (about every 6 weeks.)  She gets our “hard” and she jumps right in to the chaos.  We are extraordinarily blessed to have her, and countless other family members and friends who love, support and cherish us. I know it is cliche, but it really does “take a village.” On our bumpy and windy road we have been offered such profound kindness and grace.  No word of support goes unnoticed or unappreciated.  Truly.

Here’s to being connected to you, our friends and family.  Though we many not see you often, you matter to us.  Nothing is ever lost to the heart, which is why we can pick up where we left off the next time we’re together and know our feelings for each other have not changed even though our hair continues to grey and our faces have a few more lines.  May your new year be blessed with connections that fill your life with joy, gratitude, peace, love and laughter.  

May your road be full of wonder and magic, may you find enriching time with friends and family, and may all your Holiday wishes come true.  

   

Cheers,

Bryan, Jenny, Avery Grace, Kaylin Joy,

Presley Hope and Paxton Graham Beeson

Kaylin 8

Paxton 2

Avery 10

Presley 6

Labels

My brain has been all wrapped up in labels.  I am a word girl, and a girl often times pretty riddled with anxiety, so when I can't make sense, or better yet, can't change or have any control over something, I go over and over and over it in my mind, slowly making myself crazy.  I have read the letter my kids' geneticist sent regarding Avery and Paxton over 50 times at least.  I have already clocked in dozens of hours of new research... just since the end of February, trying to make sense of it all.  But it doesn't make sense.  It's a statistical anomaly.  I have had several sleepless nights, and gone over and over the words in my head, and I keep coming back to the fact that two of my children are now categorized by the "level" of their intellectual disability.  One profound.  The other mild to moderate.  So then I google what all that means.  Mild to moderate.  Doesn't sound so bad right?  Wrong.  Even when you have a precious child on the most severe end, it still aches pretty deep when the outcome isn't what you hoped this time around. Even though "intellectual disability" sounds nicer, it is still what I grew up understanding as "mental retardation."  It still means he will struggle. In a way that children just shouldn't have to struggle.  It's so cliche to say it, but it is just. not. fair. 

We've had a rough week.  Paxton got sick first.  A random fever, that led to his first ER visit of the week, then another visit the very next day when he took an ambulance ride after having a big bad seizure, scaring the crap out of all of us.  Kaylin got a fever a few days later, landing us back at the dr for answers, where Paxton tested positive for strep, and here we are, on day 9, and Presley is upstairs with a 105 fever, while I am hoping and praying that Pax and Kaylin are finally on the tail end of this beast.  Anyway, all that to say, I am tired.  And weary.  And overwhelmed at the stress we all have worrying about a fever causing another seizure, missed school for my kids, missed work for me, and the relationships I damage by talking while exhausted and making decisions based on fear and hurt.  But I digress.  Today Paxton also had his annual ECI evaluation, and I was supposed to attend a meeting about Kaylin at her school to prepare for her IEP.  Yep, you heard that right, Kaylin also has an individualized education plan to address her pragmatic (social) delays.  It's A LOT. 

All four of my children have some type of label.  They are boxed in to a category, but it's not what defines them.   Be it a medical diagnosis, (multiple in Avery and Paxton's cases) or a learning difference, all of my kids have been assessed, tested, and examined over and over again.  And even though professionally I have been on the opposite side of the table hundreds of times, it still never gets easier to watch or hear where your child falls when they are categorized as being "different" or "delayed."  I have always sought knowledge to ensure my kids' are getting all that they need, but in doing so, have sometimes overlooked the MOST important label:  awesome kids.   I need to take a break from the computer, from the research, from the worry and the stress, and just remember how incredibly blessed and lucky I am to be their mom.  I remember when Avery was first diagnosed with autism at age two, I kept thinking:  "I just want to move to an island with my little family where we can just be normal."  And now, eight years later, and I still just want to feel at peace. To take a deep breath and not worry every moment about every small decision I make on their behalf.   I can't do that as long as I hold this sadness, anger, fear and stress, but I can take some tiny steps towards that goal, starting with letting some of that go.   I hope and pray that my kids feel and know how special and important they ALL are, regardless of ability and skill.  That they are beautiful, loving, and wonderfully made.  Would I take away their pain and suffering in a minute if I could?  You betcha.  But I can't control that.  All I can do is to keep trying my very best to ensure that my kids know they are simply- awesome kids. That's a category I can wrap my brain around. 

Not. Again. News about our precious special needs kids.

I feel like I've been hit by a bus.  A familiar bus, but not the exact same bus.  Similar, but different.  And I am oh so weary of different.
We've been on such a high lately!  Paxton's fast and miraculous recovery from his brain surgery to place his VP shunt has been nothing short of spectacular.  In two short months he is starting to walk and talk up a storm.  We REALLY felt like our boy was catching up!  On his way to neuro typical town!  Headed to complete recovery!  Then... BAM.  A sucker punch.  Rewind four months.

Four months ago our geneticist, who is familiar with our family because of Avery and believe it or not, Presley, ordered a WES test on Avery and Paxton.  Because it was a Whole Exome Sequence test, the lab also had to have blood from me and Bryan, to determine if any abnormalities they might discover were inherited from either one of us.  It was a precaution.  To rule out any other reasons for Paxton's delays other than his diagnosis of hydrocephalus. The test is EIGHT THOUSAND dollars per kid.  Thank GOD, our insurance covered most of it. In the meantime, we celebrated Thanksgiving, had a little brain surgery for our boy, went to Atlanta for an awesome Christmas, and came back home to start schools, therapies, and for me and Bryan to get back to work! We were in a zone- moving onward and upward.  Then yesterday happened. Gut check.

A big, thick envelope arrived from the geneticist.  What a shitty job a geneticist has delivering such life altering, devastating news.  So I guess that's why were were sent the written form.  First, the interesting/(not as devastating news):  Avery holds a diagnosis of Rett Syndrome from the leaders in the field.  90% or more of Rett cases have a mutation on the MECP2 gene- but she doesn't.  Hers is a clinical diagnosis, meaning, she has enough characteristics to qualify, but all the genetic testing we have had done in the past yielded no explanation.  Until yesterday.  Apparently, a few isolated cases of girls with Rett Syndrome have a mutation or deletion called 22q13 Deletion Syndrome, or Phelan McDermid Syndrome.  It fits Avery to a T.  Severe Autism like symptoms, seizures, motor difficulties, scoliosis, dystonia, non-verbal, not toilet trained, teeth grinding and constant chewing of clothing or hands.  It is actually a relief to finally have an explanation for her differences, and to learn that it is a "de novo" pathogenic condition, meaning, NOT INHERITED and "disease causing." So HALLELUJAH!  We didn't actually do ANYTHING to cause our daughter's struggle.  It's a genetic mystery. Damn.

Then, there was another genetic mystery.  Fuck.  I can't do this.  Not. Again.  Not another one of my beloved children.  Precious Paxton.  It seems our sweet baby boy also has a "de novo" genetic mutation on the DNMT3A gene that changes the amino acid arginine (R) to tryptophan(W).  Sound confusing?  I agree.  Unfortunately, his syndrome, termed "Tatton-Brown-Rahman Syndrome," is associated with a pattern of intellectual disability including seizures, scoliosis, and congenital heart and brain defects.  Paxton's diagnosis is COMPLETELY different and unrelated to Avery's diagnosis.  Are you fucking kidding me? Excuse my language... actually, if there has every been a time to over use the word FUCK I think that time is now.  If you don't like it, fuck off.

So there you have it.  Our happy train to progress town was just hit by that bus.  I know we will heal.  We will be repaired but never, ever, ever be quite the same.   I feel mad, and sad, and mad.  I don't want to talk to anyone, but the best thing I have ever done for myself was to go to work today and be useful.  Thankfully, I LOVE my job, and help lots of kids and families who need it. But I am spent.  I am angry and exhausted, and "devastated" doesn't begin to cover it.  Could things be worse?  Absolutely.  So, I am reminded, once again, to shift my focus to gratitude.  In my head I know that I should still be celebrating my beautiful children and all that they CAN do. And I will.  I will get back there.  But bear with me.  I have been down this road and am NOT looking forward to it again.  In the word of our genetist "it seem's highly unfair for a family to have TWO unrelated de novo mutations in their children."  I couldn't agree more.  And if I am happy about anything, it is to have some answers that will lead us to the right doctors and therapies for our beloveds.  Pray for us as we battle insurance companies and financial challenges to get the RIGHT care for our special kids.  Keep us in your thoughts, if you will, as we face the coming days of depression, sadness, and heartache.  We may keep our distance, but we need you in our corner.  Loving us.  Lifting us up when we are weak.  And helping us find our strength, courage and joy in the days to come.

Paxton: http://www.tbrsyndrome.org/individual-profiles.html
Avery: https://www.researchgate.net/publication/275664951_De_novo_SHANK3_mutation_causes_Rett_syndrome-like_phenotype_in_a_female_patient

Christmas letter 2015

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                                               

So our baby needs brain surgery.

Maybe it's fitting that in the month of Thanksgiving, where we try to shift our attention to one of gratitude, that we are about to face our toughest challenge of 2015.  If we were any other parents, this challenge may indeed be our toughest yet, but the last 10 years of being parents have been far from easy.  Thank God for gratitude. For without it, I would be lost.   I have written and spoken of gratitude hundreds of times.  It is my saving grace, and the absolute ONLY reason I haven't completely lost my shit.  Because when I truly sit back and think about it, even with the challenges, the struggle, and the heartache, our life is STILL pretty spectacular.  And our children, despite their diagnoses, differences and downright crummy luck, are happy, wonderful, and amazing little people who make a profound impact on those who know them. 

I could write a book about how motherhood certainly isn't at all as I planned it to be, and I could tell you all about my feelings, my expectaions, how I've changed, how I cope- but this time it's just not about me.  It's about one precious little boy (and his adoring three big sisters.)

..."and she loved a little boy very, very much- even more than she loved herself." Shel Silverstein

Sweet Paxton.  Our little peace baby.  Our last, and littlest love.  "Pax-man" and "bubby" to his big sisters.

Please keep this adored baby in your thoughts and prayers over the coming weeks if you will.  The latest MRI of his brain indicated that he needs the surgery that will treat his ventriculomegaly/hydrocephalus.  We go in for pre-op on December 2nd, and his surgery is the morning of the 3rd.

His brain surgery is three fold, with two incisions on his head and one in his abdomen.  He will have this shunt forever we hope, though most of the time a few revisions are needed in a lifetime, hopefully not many since each one is brain surgery.

Paxton is 22 months old.  He is the HAPPIEST little dude.  He smiles and laughs ALL the time, and loves balls, dogs, scooting around on his bottom, tickles, food, and his momma.  He is bright and silly and has so much love and life in his soul.  We are so GRATEFUL for him, for his doctors, therapists, amazing caregiver, and friends.  It's going to be a bittersweet holiday season for us, but we remain optimistic, energized, and ready to embark on yet another new journey. There is no greater pain than seeing your child struggle.  It is my hope, that the road to recovery, though bumpy, will be well worth the infinite joy that will most certainly result from getting to see this baby thrive. 

August 2, 2015

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Coping.  It's meaning differs from person to person and can look as different as each of the experiences we face.  I've been told a time or two that I "cope well." Wait. What?  I beg to differ.  I once had a professor in grad school tell me I needed to quit my full time job and focus on school work only because when I had too many balls in the air, I couldn’t “cope.”  I thought I was overwhelmed then.  If only I knew.

If I am being truthful, I am not sure I cope at all some days, as I find myself mechanically going through the motions.  But maybe, from the outside looking in, it appears at times that I cope well. But all of us simply move forward with the cards we were dealt. Don’t we?  If coping means I seek out help for my kids and their needs, then I guess I cope well.  But day in and day out I can’t shake the underlying stress of it all.  So after years of “coping” I can tell you one thing for sure: some things we never "get over."  Try as we might to not let them take over and define us, they most certainly change us.  Some days I think I may be even better for it, and others I am certainly more bitter. 

I will never get over losing a part of Avery to Rett Syndrome.  Rett took my social, babbling, verbal, eager to connect baby girl and changed her forever.  Our DAILY, even hourly lives, are now so drastically different than we thought they would be when she was a healthy, happy, social, engaged baby girl.  I can't get over it.  I deal, I even "cope" if you will, but I am forever changed.  Forever heartbroken.  Forever grieving.  Even 7 years after her big regression.  Some of those feelings are as raw as they were as I watched her drift away.  I am also capable, most days, thank God, to choose gratitude and joy over sadness and fear, but it is a constant internal battle for me.  And then there is Paxton.

I had a doctor say to me last week regarding Paxton, "well, I guess he wouldn't be one of your kids if he didn't have issues."  Awesome.  Thanks.  My children bring with them, like all of yours, a unique set of challenges and strengths, but some days I am oh so tired of being strong. 

Paxton, at 18 months, is on the brink of either making drastic progress and demonstrating that he may indeed have a chance at a somewhat “typical” childhood, or he may not.  The road less traveled for most of you is a road I am all too familiar with.  A road, or shall I say, a childhood, with several therapy appointments a week, a road where battling insurance companies and waiting on approvals is part of the journey, a road that requires spending every last dime and then some to ensure that your child is getting what he/she needs just to be the best that they can be- just to maintain skills, and maybe, hopefully, gain some.  I’m up for the fight, but admittedly, I don’t want to do it again.  I don’t want my child(ren) to have to work so very hard to learn simple, basic life skills.  I want their days to be filled with playdates, homework and sports, not therapies, diapers and evaluations.  But here we stand- waiting to see which way it will go for our beloved son. 

By this age, we knew with our middle girls that they were on target.  That autism and disability weren’t part of their personal struggles.  Kaylin has ADHD and some social issues, and even Presley has a dx of a connective tissue disorder called Ehlers Danlos Syndrome- but their intellectual functioning is on track.  And in most ways on most days, they are the least of my worries.  After all, they can understand what we say and speak their minds.  And they do so all the time.  Heck- lets be honest, the fact they can wipe their own bottoms and feed themselves makes them super easy in our house.

So sometimes it looks like Bryan and I are “coping.”  Other times we are ridden with anxiety and are a down right mess, eating to much and indulging in a little more wine than we need, but I guess  it’s all in the eye of the beholder and the perspective of the observer.  Having an army of therapists, teachers, social workers and more is an extraordinary blessing, but it also makes us open targets for judgment, endless opinions of others, and occasionally, shame.  Most people’s lives aren’t on display for well meaning professionals to critique.  I make lots of mistakes.  Every. Single. Day.  But we have to get up and keep trying.  Using whatever coping tools we have to move forward, and march on.  I hope and pray my kids emerge from their childhood journey as positive, courageous, hard working, happy, and grateful people.  For my two with special needs I would say I wish the same thing, but my wishes for them are far more profound.  I wouldn’t wish this pain and worry on my worst enemy, but thankfully, amidst the sorrow arises more joy than I ever imagined, and deeper love, appreciation, faith, grace, joy and hope than I would ever be able to comprehend if my circumstances were different.  I am learning day in and day out how to proceed.  I am lucky to have support and resources to keep me from drowning.  I am weary.  I am fearful.  But I am strong.  Call it coping, or whatever.  I call it moving forward, living in the present, and starting each day anew with knowledge, tolerance, perspective and courage.   

Fear, hope, and gratitude.

If I could only freeze time.  I live in two different universes.  One place I reside is a place of fear.  A worry so deep that it can, quite literally, take my breath away.  In the last hour alone, my Facebook timeline produced three articles that no one should ever have to read.  One reported on the possibility of sudden death in epilepsy, another about hydrocephalus shunt complications, and a third about autism drownings.  YUCK. I would rather spend all day looking at friends beach pictures with their totally typical, healthy kids building sandcastles while they sip on margaritas in their luxury beach chairs  (a reality that will likely NEVER be mine at a beach with my bunch.)  This fear is something I have to push out of my brain several times a day.  It can catch me off guard,   like last  Saturday night when I saw teenagers in their prom dresses posing for pics outside their homes in my neighborhood and I immediately grit my teeth and worry about my special kids entering the teenage years and what on earth that will look like.  When Avery is taller than me, yet still needs me to lift her and change her diapers, and meet her every basic need.  What if we can’t afford prom dresses for our other girls because of the many needs of their siblings?  What if, God forbid, something happens to me or Bryan... who will make sure Avery and Paxton are cared for, loved, adored, and sheltered from the horrors of institutionalization?  And if something happens to me, who on earth will do my girls’ hair?  :-)  I can be fine one minute, feeding Avery, wiping her mouth after a bite,  or changing her diaper- and I have a moment of panic, because who could ever possibly care for her as well as we do having loved her since birth?  I can’t describe how terrifying these gut-check moments can be.  But these moments are part of my reality.  They are part of the process of special needs parenting.

The other place I live is a place of hope.  Hope that someway, somehow, Bryan and I will figure out how to continue to provide the best we can for our kids.  Hope that Paxton doesn’t end up with an intellectual disability like his sister, and will be able to communicate his wishes, dreams, desires and ideas. Hope that he will one day walk, maybe even run. Hope that Avery stays as mild mannered and happy as she is today.  And that her health stays stable and her epilepsy controlled. Hope that the sacrifices Presley and Kaylin have to make don’t make them bitter, and hardened to the realities of their circumstances.  Hope that my marriage survives the extraordinary stress of special needs, and multiple medical issues.  Hope that as the days carry on, I will find a way to maintain some resemblance of balance in my life, and the financial and physical burdens and worries will one day ease. 

But neither place is a very wise place to reside.  While fear enables us to plan for the future, it otherwise is a waste of energy.  Because the future is never predictable.  Hope is almost equally as dangerous.  If we spend our days wishing for brighter ones, then we miss out of the beauty of the moment.  And the light illuminating the many blessings that already exist all around us. 

I’ve written over and over again about the process of learning to 'live in the moment.'  And I wholeheartedly believe in this ambitious endeavor.  But we have some pretty hard moments.  Moments of fecal smearing that would make a grown man cry, moments of gut wrenching news from doctors, screaming fits during therapies, moments of profound isolation and sadness, moments of sheer exhaustion after being up night after night after night for the last NINE years.  Thankfully, those moments are fleeting, and are surrounded by much lighter, easier, happier moments.  Moments where Avery reaches out to hold your hand or wraps her arm around your neck while smiling and laughing, moments where your 7 year old writes her first book about her disabled sister and how to include her and love her, moments when your motor delayed baby figures out a way to compensate, despite his muscle weakness, and move from point A to point B with a goofy grin all over his adorable face.  Moments when he says mama, over and over and over again... but I NEVER tire of hearing it for I have a child who once could say it and lost that skill.  Moments where your 4 year old tries with all of her might to connect to her biggest sister, and protects her baby brother.  Moments where your family or friends check in, just because they know you had a shitty day full of appointments and bad news.

Our days hold a thousand shining moments, and those are the ones I try to focus on.  The ones I remind myself in the hard moments to be grateful for.   To be grateful for a million different reasons.  Perspective is a beautiful thing.  Every single moment, good or bad, that I encounter, can be perceived any number of different ways.  We really can CHOOSE to be forgiving, easy going, happy, and most importantly, grateful.  Gratitude is the best and easiest way to navigate my world of special needs.  A world with many painful moments.  But that doesn’t mean I am not allowed to feel sad.  I own being sad.  I have a right to it, and I have moments that it can overcome me, and bring me to my knees. Thankfully, there is always gratitude to help me refocus.   Because it’s easy to recognize and realize how wonderful my life is, and how spectacular my children are, just as they are.  Today.  If only I could freeze it- because today I know I can do this. Today is all I am guaranteed, and I want to spend my moments, the good, bad and otherwise filled with grace, joy, hope, and peace.
*the latin translation of Pax is “peace.”*

Holiday Letter 2014

Hearts Full of Love

There is a quote I love that says “If you think our hands are full, then you should see our hearts.”  THIS is our new family motto.  2014 started out with a bang as we welcomed our 4th precious baby.  Paxton Graham Beeson arrived on January 10th, and this little dude has stolen our hearts every day since.   He and his three sisters fill our souls with love and joy, and we are certainly savoring every moment of his baby days and being mindful to live each day to the fullest.

2014 marked another big event in that Bryan and I have now spent 10 holiday seasons together as a married couple!  This past October we celebrated our 10th wedding anniversary.  We both feel so blessed to share our lives together, and are excited for a lifetime of memories to come. 

2014 was certainly not short on life lessons, beautiful moments and a few heartaches.  Weeks after we welcomed our beloved son in to our family, we learned of some potential serious risks to his health and development.  The first signs were a failed newborn screening, and club feet, and then in the weeks to come we grew concerned with his rapid head growth and delays in developing motor skills.  In the months that followed, and after countless doctors and specialists, we learned that Paxton has a brain condition known as ventriculomegaly /communicating hydrocephalus.  Despite the grim and potentially life threatening diagnoses, Pax-man has defied the odds and continues to develop at his own pace, making steady progress and smiling and laughing all the way! He is an absolute joy, and he brings so much laughter and light in to our home and hearts.

Presley Hope, our funny, easygoing 4 year old continues to thrive in whatever environment we throw her in!  She loves preschool, dance, swimming and gymnastics, and keeps us giggling with her quick wit and awesome sense of humor. 

Kaylin Joy is a first grader now!  She continues to keep us on our toes, and though she challenges us at times as parents, she has such a loving spirit, and is an AMAZING big sister.  She is about to embark on her first volleyball season (she’s a good head taller than your average first grader,) and enjoys gymnastics, swimming and being a daisy scout. 

Our sweet Avery Grace is plugging along as well.  It’s always a little hard to answer when well meaning friends and family ask how Avery is doing.  The short answer is, “great!” The long answer would entail a detailed description of how we learned long ago to throw out our expectations of Avery, and just enjoy her for who she is and what she can do.  In truth, Rett Syndrome/severe autism has taken away so much from our precious daughter.  At 8, Avery is still and likely always will be 100% dependent on us to meet her every single need from feeding, to dressing to diapering and so on.  However, her easy going nature and genuinely happy disposition bring a soothing peace to our sometimes chaotic household, and we adore her- just as she is.  She is able to understand some simple language, and can identify pictures and some basic wants on her iPad, which is also her communication device.  Between Avery and Paxton, we literally clock in over 25 hours of therapy a week, not to mention doctor visits and trips to and from the girls’ three different schools.  But as busy as we are, our time together as a family is all the more cherished and appreciated. 

Thankfully, this summer we were able to get away for a week in Atlanta visiting family, followed immediately by a week in Destin, Florida.  It was so good for our souls.  The energy from the ocean and love we felt from friends and family were so uplifting and rejuvenating.  It was our first family vacation in a long time and we loved (most) every minute of it.  All in all, life is pretty wonderful for us.  The challenges we face as a family really do seem to make us stronger and more grounded.  We don’t sweat the small stuff, and try to remember daily the joy of living life in gratitude.  We are so incredibly blessed by our supportive family, friends, therapists and an outstanding caregiver for our kids.  It’s the relationships in life that make it worth living, and thankfully, we have many that we hold dear and that enrich our lives tremendously.  We hope your holiday season and 2015 are full of light and laughter, and we ask that you keep Paxton, Avery, Kaylin and Presley in your thoughts as we continue their paths toward healing and wellness.                                   

Love, Bryan, Jenny, Avery, Kaylin, Presley and Paxton Beeson       

                                       


                                                                     

Stopped

There is a therapeutic term I have used both professionally and personally, called "stop the action."  When I use it in reference to therapy, I am encouraging parents to step back in the middle of chaos, get on level with their child, pause, and stop what everyone is doing in order to only focus on the connection between two people.  The connections and moments that bring two people together in understanding and physicality are the most important of human experiences, and even the most "disabled" of people, like my Avery, need, thrive on and enjoy these precious moments of unity.  Every day I have a moment where I take pause, and reflect on the abundance of love that surrounds me.  In the four months since my last post, I have been busy watching my beloved baby grow and change, and have enjoyed every moment of being his mom.  Anyone who ever thinks they couldn't possibly ever love a second child as much as the first probably hasn't had that second child yet.  The same is true for the third, and in our case fourth child.  As our family grows, so do our hearts.  And something about knowing he is my last baby has given me even more of a reason to hold sacred his infant days, the hours nursing in the night, the belly laughs, the coos and babbles, and even the short lived tears.  Being a mom to all of my children is such an incredible gift.  It is the experience of a lifetime, and even in the most difficult moments, where my special needs child has smeared her poop, my 3 and 6 year olds are fighting non-stop, the baby cries, or the house looks like a bomb went off, I am able to "stop the action," take a deep breath, and remember to be grateful for this beautiful and crazy life that I am so fortunate to live.

Only a few times in my almost 9 years as a mother have I truly been "stopped" in my tracks.  Halted from this beautiful journey and thrown into disbelief, anger, denial and fear.  The first, and most obvious was of course when Avery began her developmental regression, and spiraled into her own non-verbal world of Autism/Rett Syndrome.  For years I wanted to prevent this experience from defining me, until I realized that it already had, and that was actually really okay.  I began writing this blog as a cathartic way of coping and coming to grips with what we were dealing with, and the anger and overall profound sadness I felt at the thought of my daughter's life being stripped away from her.  I still have moments where the sadness feels like a kick in the stomach.  Not so much anymore because of the child I felt I lost, but more because I just can't imagine what it must be like for Avery to not have a say in how anything goes in her life.  It horrifies me at times, and at other times I feel extraordinarily grateful (then later guilty for feeling that way) that Avery is so easy going.  She literally NEVER complains.  She just spent 55 hours hooked up to an EEG in the hospital with electrodes actually cutting into her scalp (we didn't know that until they were removed) and she tolerated it LIKE A BOSS.  As long as that kid has her ipads, she is one happy camper.   But nothing can stop you quite like the news we got when she was 19 months old.  It is life changing to say the least. 

Last Friday I was stopped again.  The worst is when you don't see it coming, and although I guess I should have, I really didn't.  You see, for months I have been concerned about Paxton's motor development and his club feet that (despite 8 weeks of casting), are still not corrected.  I worked in Early Intervention for years, so the therapist in me jumped in to action and immediately began OT, PT and seeing an orthopedic doctor for his feet.  Several weeks ago, the orthopedic surgeon recommended we take him to a neurologist to investigate "why" Pax was showing some delays, and since I already had an appointment with Avery's neurologist for Avery, I took Paxton along and asked him what he thought.  THANKFULLY, he opened up an appointment on his calendar to see him (normally a few months to get in as a new patient) and after a thorough evaluation, he ordered some blood work and an MRI to investigate possible muscular dystrophy's, or possible cerebral palsy.  Oh, and as a side note, Paxton's head size, he noted, was off the charts, while his weight and height were both below 50th percentile.  I ALMOST cancelled the MRI.  I didn't want my baby exposed to toxic anesthesia, so I asked our somewhat holistic pediatrician what she thought, and since his head had increased in size so much from 4-6 months, she said we had to do it.  Which brings me to Thursday, when he had his MRI and did just fine with being put to sleep.  He was a trooper, especially since he hadn't nursed in several hours by the time they took him back.  The next day, last Friday, Bryan and I were in the hospital for Avery's EEG, and our awesome neurologist came by and spent over an hour with us regarding Paxton's brain.  That sweet man showed us the images, explained in detail what they meant, and walked us through what was likely to happen next.  Paxton has ventriculomegaly. It is a condition in his brain where the lateral and third ventricles are over twice as large as they should be, and are filled with cerebral spinal fluid. He also has a subdural effusion on one side of his skull where fluid has accumulated.  The neurologist drew me a picture and explained how Paxton's motor skills and even his feet are a result of the pressure on critical muscle fibers in his brain.  If left untreated, brain damage will continue to occur.  Wait, what?  Stopped.  I almost lost my breath.  I didn't shed, and still haven't, a single tear... but I was stopped. My perfectly social, happy, babbling, bouncing baby is going to have brain damage... again.  What. Is. Wrong. With. This. World.   I am numb.  My whole world has stopped.

So now what?  I am forced to move to action.  No more stopping.   We continue to investigate, I get my priorities in gear, set my board exam studies aside and move. Move on to determine what caused this. See several more doctors.  Paxton has been referred to a pediatric neurosurgeon to see what surgical options there are to relieve the fluid build up.  We will see the neurosurgeon later this week or early next week.  Our neurologist thinks a shunt placed in his brain draining down through his neck to his abdomen is a likely possibility that could really help Paxton thrive.  I am scared.  I LOVE LOVE LOVE this baby.  I am so scared that the shunt could malfunction, that the not doing the surgery or the surgery itself could cause irreparable harm to his brain.  I must keep moving.  Stopping means thinking and thinking is so painful right now.  I just want to hold him.  Forever.  I want to STOP in this moment, where he spends his days laughing, smiling, reaching for me, and breastfeeding and freeze time.

If being a mom x 4 has taught me anything at all it is that we must power on. Live in the moment, count our many blessings, and always find gratitude.  My amazing husband is full of optimism that everything will be fine, and I am going to try like hell to borrow that perspective for a while.   We have survived so much, and surely this will be just another event that makes us all stronger--but I must admit that I am weary.  I am hopeful, but also realize how incredibly unfair and sucky this is.  My perfectly innocent, adorable baby boy doesn't deserve this hardship.  There is no "reason" my kids, or any kids should have to suffer.  So in your prayers, thoughts, wishes, or good vibes tonight, please remember Paxton, Avery, Kaylin and Presley.  They ALL are going to be impacted by this, and they need all the love, understanding, encouragement and attention we can muster.  Kaylin spends her DAYS holding, or wanting to hold her baby brother.  Much like me.  Presley is so proud of her baby, and loves entertaining him and making him smile and laugh.  The girls do not yet know what is going on, and we are going to keep the terms simple so that we do not scare them.  I will keep you all posted as we discover more in the coming days and weeks.  The latin meaning of Pax is PEACE, and as we seek that in our hearts tonight, we hope you will join us in our journey towards wellness, and remember to "stop the action" in your own busy lives to relish the important moments you share with loved ones.  It is the MOST important thing.

Peace

"Our family is a circle of strength and love, with every birth and every union, the circle will grow, every joy shared adds more love, every crisis faced together, makes the circle stronger."
Author: Unknown

As time tends to do in busy families, the last 8 weeks since we welcomed our precious son have flown by in an instant.  Paxton Graham Beeson was born via c-section on January 10th, and in a moment, our hearts grew bigger and made room for one more little love of our lives.  Surprisingly, rather than adding stress and chaos to the mix, sweet Pax (the Latin translation of Pax is “peace”) has brought us just that.  Peace.  A calm to our often stormy lives.  His mere presence requires us to slow down, and as with all of my precious babies, my favorite moments lie in the hours spent every day and night nursing and staring at this innocent, perfect and adorable baby. 

As is par for the course in our household, there are always several things going on to keep our minds and bodies busy, and even a new baby doesn’t stop the activity! 

I am so happy to report that in the last few months we have seen some really positive changes in Avery’s ability to connect to other people.  She REALLY seeks out eye contact and smiles all the time now, and is doing a great job guiding us by hand to what she wants and even pairing that gesture with a hum sound and a gaze from her big, beautiful blues.  I have no idea why she has had this sudden boost in awareness, but I am so (cautiously) optimistic!  For many of you who haven’t experienced the roller coaster of constant developmental regressions, you may not know why I am cautious about my optimism, but for those of you who have, you know that sometimes it helps to protect yourself from getting TO excited as sometimes these skills leave our precious kiddos as quickly as they arrive.  But, nonetheless, I am relishing in our new found connection to our sweet and awesome non-verbal kiddo, and enjoying every gaze and gappy toothed grin. 

Kaylin, our 5 year old firecracker, LOVES being a big sister again and asks to hold Paxton constantly.  She is such a leader (some would call it extraordinarily bossy), and is loving gymnastics and school.  Kaylin’s teachers, caregivers, and therapists (as well as mom and dad) have always had suspicions about her having ADHD, and after watching her struggle to attend to school and instruction from extra curricular activities, we decided to have her formally tested, and low and behold, in the most UNsurprising news of the year, she does indeed have severe ADHD.  We are making some changes that will hopefully help her learn and flourish, and maybe not be in constant trouble around here. 

Presley has also taken quite well to her new found role as “littlest big sister” and continues to thrive in preschool and is also about to start gymnastics. Presley is quite the comic, and keeps us laughing and smiling everyday.  She takes her time with just about everything, and thankfully, is strong enough to push back when her big sisters take over.  There is quite a bit of fighting that goes on between the girls, but more than that I am pleased to say there is lots of happy laughter and playing too. 

We are extraordinarily blessed to report that our now complete family is doing well.  We had a BIG scare for a few weeks as Paxton’s newborn screenings (which we repeated) initially did not detect T-cells, which would have meant that we had a major health crisis on our hands.  Thankfully, after further testing, we discovered that he is JUST fine! He has an umbilical hernia which is no big deal, and may need some orthotics for a slightly clubbed foot, but no one is born “perfect” and so far he’s really doing fantastic and changing daily.  His big gummy smiles are the highlight of our day. 

When I started this blog over 5 years ago, I was certain that I would be documenting all sorts of progress for our sweet, disabled daughter.  It was before facebook had really taken off, and I was going to use this site to share her triumphs and successes.  Unfortunately, that’s not exactly what has transpired, but I will say that social media has really provided me with an awesome support network as we trudge through this journey as special needs parents.  It is incredibly heartwarming to see so many of our friends share in our happy times and offer words of encouragement and support when we need it most.  It provides me with a great level of comfort to know that our “friends” will teach their children to love and support people like Avery as the years pass, and are taking an interest in making sure her voice is heard, though she will unlikely ever actually speak another word.  Rett Syndrome has taken so much from us, but it has also provided us richness beyond measure in the ways of perspective, love, tolerance, grace, joy, hope and lastly, peace.  

photos courtesy of blessedbphotography. 

Beeson Holiday Letter 2013

Beeson Holiday Letter 2013
“Blast this Christmas music. It's joyful and triumphant!” The Grinch -Dr. Seuss

I have a terrible memory.  Truly.  More often than not, when people say "remember the time when..." I usually don't.  It's a little embarrassing.  But thankfully, I have technology on my side to help recall a few details, since the big things usually remain remembered.  I'm grateful for my smartphone so I can document with pictures, and social media like Facebook that enables me to look back on my own page at memories past.  Because, let's be honest, life is all about the memories we share.  Especially during the holidays,"the most wonderful time of the year."  Just today I had the pleasure of documenting a few holiday memories with my girls, and experiencing the smells, tastes, visions and wonders of Christmas.  Like everyone else, the cherished time of childhood seems to zip by in a flash. And the moments that I want locked in my brain are those shared with loved ones.  We've had a few great, and a few not so great memories in 2013.  And as we soak in the season of magic and joy, it's fun to look back on the growth, changes and challenges that shape our perspectives, lives, and hearts.

We have so much to be grateful for this year, and every year.  Not the least of which is our soon to be fourth (and final) baby due to arrive in only a few short weeks.  Most of you know of our big news, and we are delighted and surprised to be expecting the pitter patter of little BOY feet on or around January 10th.  A new adventure for us!  Our hands are certainly full, even more so are our hearts.  Some of you may think we’re crazy, but something about having a child with special needs like Avery made us want to surround her with siblings, chaos, laughter, and noise!  We wouldn’t have it any other way. 

Our three precious girls bring us so much love.  Presley, now 3, is going to preschool 5 days a week at an Episcopal School here in Frisco, Tx that we adore.  She LOVES school, and is thriving there.  Kaylin, age 5, is in kindergarten and keeping everyone around her on their toes!  She is as spunky and feisty as ever, and is reading well and always creating lots of drama.  Both of our “little” girls are already excellent sisters to our “big” girl Avery, age 7.  Avery is doing well in her special Ed program, and is getting better at identifying pictures on her communication device (her iPad).  She was officially diagnosed with Rett Syndrome this year, which explains so much of her debilitating motor skills, epilepsy, inability to speak, and overall level of functioning.  It was somewhat of a relief to finally have a name for our sweet daughters’ many disabilities, and we are so grateful to have found a team of doctors in Houston who took the time to evaluate her (for hours) and give us some answers we have been looking for over the years.  We continue to be blessed with fabulous therapists, teachers and caregivers too! It really does take a village. 
   
Bryan and I are doing great, and are so lucky to have each other on this journey (which in many ways is really like a roller coaster!)  Bryan continues to work in the energy industry and is very happy with his company and position.  I have just completed yet another graduate program to further my career as a therapist/consultant working with individuals with disabilities and their families, and have really enjoyed working part time while also being a student and full time mom.  We are so blessed to have friends and caregivers who help us in so many ways as a family. 
   
So there you have it!  We hope that you and yours have found an abundance of grace, joy and hope this year, and we wish you all a season full of sparkle and wonder, and a 2013 illuminated with love, good health, peace, and a bounty of happy memories.
                
 Love,  Bryan, Jenny, Avery Grace, Kaylin Joy, Presley Hope, and baby boy Beeson