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

Grief

It's been a weird day. It started off with all three girls up at some point in the night.  Avery wakes up every night, but the other two only wake up here and there.  Last night they all woke up at different times, crying, tired, and disoriented.  So maybe I am simply sleep deprived.  It wouldn't be the first time... this week.  Then I went to the doctor where I heard our sweet new baby's heartbeat, and had several precautionary tests run and a good heart to heart with my doctor about stress and pregnancy.  So maybe it's the hormones.  Then I grabbed a quick lunch at my favorite local market.  I go there for three primary reasons:  1.  They hire special needs employees to bag groceries.  2.  They walk your bags to the car AND unload them in to the car, and 3.  There is a variety of gluten/casein free goodies for Avery.  But I digress.  While at the market, I sat next to a table of special needs young adults on an outing with their caregiver.  They were practicing purchasing items, staying together as a group, and using social etiquette.  I won't pretend I wasn't snooping in on their conversations.  I totally was.  And as happy as it made me to see these beautiful individuals out and about living their lives in a totally awesome way, a pang of grief also sank in as I thought about my own special girl and her journey.  So maybe it's the disability... the sheer severity of it all, and the shadow it imparts as I think of my own daughter's future.   Or maybe it's just a hot July day, or the crazy rash my littlest girl keeps getting in the sun and heat.  Or maybe its the nausea or the "end of vacation blues" as we just returned home from our annual trek to Atlanta. Or it could be that I pulled Avery's loose tooth today, and her complete unawareness of what I was doing or why had me a little nostalgic of how different our lives would be if only...  Regardless, it is safe to say that on this weird day I am feeling despondent. 

Most days I can roll with the punches.  I have been working for years to learn to be present and grateful.  But admittedly, I am fairly anxious at the slightest plot twist, and need to learn to utilize healthy outlets for my worry, which really isn't healthy at all.  So although the first place I think to go when I feel like this may not be the gym (I wish), at least I have this computer as a cathartic way to spill my guts.  Sometimes just typing out my feelings leaves me a bit relieved. 

So I want to write for a minute about grief.  We typically think of someone grieving when they lose a loved one.  Most of us understand that special needs parent's grieve too, about the loss of the child they had hoped for, but what some don't understand is how that grief ebbs and flows through the years with every lost tooth, daddy-daughter dance, end of year party, birthday celebration, holiday etc.  For me, my grief comes and goes fairly often, and as the years pass and my child's abilities remain stagnant or even worse, reverse, I have to re adapt to our "new" normal, as ever changing challenges continue and require new ways of living.  I can write for days about the love I have for my special needs child.  It is fierce and unwavering.  But the darker side of grief is present too, and learning to cope with it, and better yet, move past it even if momentarily, has become a new priority for me as I walk this unique journey.  If awareness is the first step to recovery from pain, I surely am well on my way.  I am a realist, married to the king of optimism, so coming to grips with "what is" is what I do.  And as much as I try to relieve my brain of "expectation"  there are days when it haunts me and I have to reevaluate again, and remind myself over and over again of my countless blessings.  I have survived many sleepless nights by shifting my thoughts of worry to thoughts of gratitude.  And I could write a novel about the thrills, precious moments, love, grace, joy and hope that parenting my three girls has enabled me to enjoy. 

So what's the take away? I think that Dr. Martin Luther King said it best:  "But I know somehow, that only when it is dark enough, can you see the stars."

Grief, as hard as it is, can color our days and lead us down a dark and lonely path.  But it can also afford us the beautiful opportunity to experience perspective like none other, not take small things for granted, and live life in a way that makes every day a gift worth living and valuing.... even when it's hard to find hope. 

Purpose

Inhale.  Exhale.  Inhale.  Exhale.  Repeat.

For the sixth time in the last five minutes I have had to remove our dog's nylon bone from Avery's mouth.  I just kicked the dog (and her bones) out of my room.   Miraculously, for about the fifth time in her life, Avery pooped on the potty today.  I have changed her clothes twice due to crappy big kid diapers, and I just finished feeding her dinner and dispensing medications no seven year old should have to take. 

Avery is happy and delightful today, despite a fever of unknown origin that afforded us a rare afternoon to spend together.  It was awesome to share a few moments with my big girl.  We no longer have a full time (or even part time for that matter) caregiver for the girls, so we are adjusting to a new way of life, which often includes drop-in daycare for the little girls so I can work while Avery is busy in therapy. 

Oddly, I work with children with special needs.  Mostly Autism.  So almost every moment of my every waking breath is spent with someone who needs extra care.  Extra support.  And Extra time to learn even the most basic human development. 

The kids I work with are as varied as any two kids.  Some are non-verbal, like Avery, and some just struggle with anxiety or social thinking.  On Sunday, I completed my graduate course at UNT.  I received my masters degree 11 years ago, but am now back in school for a new certification to allow me to bill insurance while treating kids in whatever way they need... using floortime methods, RDI methods (both I have been previously certified in) or ABA methods... which certainly have their place when teaching life skills to a kiddo like mine.  If you know what the hell I am talking about, you probably have or work with children with Autism.  If you don't know what I am talking about, then let me just say that there are several teaching methods, each with strengths and weaknesses, that address the many needs of Autism and related disorders.  To be an effective therapist, I wanted to understand and study three of the most popular. 

For thirteen years I have been learning about, and working hands on with children who have Autism Spectrum Disorders.  Thirteen years.  My daughter, who at 19 months was diagnosed with severe Autism (over five years ago) has been my greatest teacher.  Mostly because her progress, or lack thereof, and her M A N Y medical issues and diagnoses' that have left me flabbergasted, despondent, heartbroken, courageous, enlightened, and stronger than I ever imagined I could be.  In addition to  mastocytosis, autism, and apraxia, her newest diagnoses include epilepsy and atypical Rett Syndrome.  The combination is mind boggling.  And horrifying. 

I'm not seeking pity, or anything really, I just want my loved ones to know why there are times I may be kinda bitchy, over emotional, under emotional, why I hide in the pantry and eat...or whatever.  There are times I want to move to a remote island with my husband and kids and live a "new normal" since it seems our life is so far from typical.  Lately, I have been a little more anxious than I should be, and I am working hard to adjust my way of thinking to be more present, more grateful and more authentic. 

Trying to find a "purpose" when you are dealt a hand like mine is pretty easy.  I am lucky my purpose is such a sweet, easy going, lovely, little disabled seven year old. Sure, our life is a different kind of "hard,"  but isn't everyone's?  Every single person I know has a story.  Just about EVERYONE has overcome something. The thing that makes our story different, or a "different kind of hard" is it's persistence.  Our "hard" will last a lifetime.  Hopefully.  I hope and pray that Avery outlives me, and if she does, I am working my ass off to make sure I am equipped to handle the challenges that are sure to come about.  It is ALWAYS something.  Just this past weekend our handyman friend had to come over to put a plexiglass casing around our shower knob so that Avery will stop yanking on it and scalding herself.  "Averyproofing" alone has been such a challenge.  Imagine a 4 and a half foot tall 9 month old.  

I feel lucky to have discovered such a relevant passion, long before I even had a personal reason.  Call it fate, or preparation... I was on a path to become Avery's mom.  I struggle with faith, but can clearly see that all of my life prepared me to be the parent Avery needs me to be.  So today, unlike some of my harder days, I can choose to be grateful.  To be aware and active in my "purpose,"  and to see my life and my children as true blessings.  Just as they are.  Am I likely to return to sadness tomorrow.... probably.... but for this moment, I am absolutely full of grace, joy and hope. 

Matters of the heart

For years I have been saying it.  Feeling it.  Aching at the knowledge.  It is different for my husband. Admittedly, he knows very little about the world of Autism and related disabilities.  He can take a diagnosis, grieve, and move forward.  But for the life of me, I just KNEW that Avery's list of diagnoses' just didn't explain it all.  I hoped I was wrong, and that time would prove that I was, but as time marches on, I am even more certain.  Certain that what Avery has is more than severe Autism.  Her motor skills wouldn't continue to spiral downward, the H O U R S a day and tens of thousands of dollars spent on a variety of therapies in addition to medications and biomedical interventions would have made a remarkable difference if this was what we thought it was.  But I am pretty certain now that it isn't.  Though I am not exactly certain WHAT Avery has, one strong possibility is Rett Syndrome.  Yep, I said it.  Rett Syndrome.  It actually is a part of the autism spectrum.  It is on the severe end of the spectrum, and includes regression in all of the area's Avery has experienced.  Motor skills, hand use, language, social/emotional, cognitive.  All of which makes my sweet girl, at almost seven years old, less capable in every developmental way than she was at 12 months old.  That's right, twelve month old babies have several skills that my precious girl had.... and one by one, has lost. 

So moving forward, what to do now?  What is her prognosis?  Well, before I jump ahead of myself, we have to have some sort of diagnosis I suppose.  We are taking Avery to one of the best Rett centers in the Country for evaluation and medical care.  She and I will trek to Houston in a few weeks for our first of many appointments at The Blue Bird Circle Rett Center where Avery will be seen by a team of doctors who specialize in treating girls with similar symptoms.  If you want to know more about Rett Syndrome you can read about it at http://www.webmd.com/brain/autism/rett-syndrome


Emotionally speaking, I am not sure what difference a diagnosis makes.  Over and over again we have had to cope and come to grips with the reality of Avery's disabilities.  Our definition of hope has evolved over time, and we are gradually easing in to the idea that Avery may never speak, and will  always need 24/7 care to meet her needs and keep her safe. Thankfully, we have an abundance of gratitude for our many blessings, and can always snap out of our sadness to remember how beautiful and unique each of our children are, disability or not.  That's not to say that several times a day I don't hold my breath for a moment and worry about what the future holds, but I am constantly reminded of what really matters.  Love matters.  Compassion matters.  Empathy matters.  Forgiveness matters.  Grace matters.  Joy matters.  And even Hope matters.

 I'm far from perfect.  I have lots of work to do as a wife, mother, friend, and citizen.  But I'm not giving up.  Not on me, and never on my lovely daughters.  Though in many ways I am a realist, that doesn't mean I won't stop searching for ways to make my daughters life have meaning.  Words or not, Avery's voice will be heard, and I just know that deep inside, one day, she will have an exquisite story to share. 

Uncertain Happiness

I was talking with some of my colleagues in the world of Autism treatment, and heard some disheartening facts about facilities meant for housing and caring for adults with disabilities. It's not as if I didn't know some of the despicable details, but in an effort to maintain positivity, and seek peace and beatitude, I have been trying to convince myself to be more present, as this seems to be a lifetime away.

I had a lovely conversation with my beloved Dad about this not too long ago, where he explained, and agreed, that the happiest people are not the people who live in the past saying "if only" and "back in the good ole days,"  nor are they those who live for the future saying "when this happens then..." or "I'll be happy IF..."  but rather, as many of us know, the happiest people are those who can see the beauty in the moment, find gratitude in each day, and be present and authentic. 

For the most part I would say this perspective is working for me, and I am, most of the time, pretty (maybe fairly) content.  Most days, I feel like I can handle our circumstances, some days I feel like I am drowning and others like I am kicking ass, but for the most part, I am doing pretty okay!  Better than okay, even.  But when knowledge about the horrors associated with what is potentially your child's future come to rise, it is as if I have been kicked in the stomach and slapped in the face.  I feel helpless and out of breath.  What do you mean a group home won't take individuals with sleeping disturbances who can't wipe their own butt?  The "nice" facilities discriminate the disabled?  Shit! 

I have ALWAYS said, and I still maintain that my disabled child can live with me for as long as I am breathing.  She is a part of me and will be in my care for as long as physically possible.  But, as every parent with a severely disabled child fears, what happens when I am not here. What happens if she outlives me?  Where will she go?  Who will care for her and love her and provide an enriched environment for her?  Deep breaths.  Stay calm.  Think.

Even as I write this, my beloved oldest daughter is climbing on me and making sounds many of you might balk at.  She has (in the last five minutes) knocked over two lamps, is chewing relentlessly on her chewy tube necklace AND her shirt, and has soiled her diaper.  She is almost 7.  It is not "behavior."  She is, in many ways, like a giant baby.  Developmentally, below that of a young toddler.  We feed her, change her clothes, and meet her every single need.  Watching Avery is like bodyguarding.  It is a 24/7 full time job that is becoming physically taxing.  Thankfully, her temperment is delightful though distant, and her general disposition is easy going and pretty go with the flow. 

I don't mean to complain.  I adore her.  I am, day by day, coming to grips with what she can and can't do.  I BELIEVE that she is so much more than her disabilities and I KNOW that she brings an abundance of grace to all who know her, but if her past is any indication of her future, then what and how should I plan? 

In the same conversation I referred to earlier, my dad explained that plans rarely ever pan out the way you intend them to anyway.  The only thing that is predictable is unpredictability.  Absolutely true.  But that being said, I can make some arrangements that may ease my heart and mind a little bit...

Avery is blessed with two sisters.  Although I do not expect them to devote their lives to caring for her, I do expect them to love her and learn how to look out for her.  As older children, and then as adults.  Hopefully THAT plan pans out, but who knows! Thankfully, they are their own strong little people with their own big ideas!   Avery also has a mom (me) who by some miracle was professionally educated and trained to work with individuals with disabilities.  Hopefully I can devote my career not only to helping others, but to create a place where Avery and people like her can live in a domestic, loving, enriched and purposeful environment.  Avery also had a dad, who is the hardest working person I know and who loves her without conditions.  Period.  Though he may not have chosen a life with so much heartbreak, he is the PERFECT dad for Avery, and he makes me a better mom for her as well.  And finally, Avery has several other loved ones who we may never have met if it were not for her challenges, but who have enriched our lives tremendously.  It is nice to have a select few who really know and see what our day to day looks like, and who can provide some much needed respite and support. 

So, now I can breathe.  I may not know what our future holds, but I can try to find a healthy balance of living for today and making responsible plans for tomorrow.  I know almost nothing for certain, but I know that I never could have imagined that I could find such glorious love, joy, grace, and hope in the hand we were dealt.  So no matter what comes around the corner, I am trying to open my mind to the realization that we can handle it.  Even when and if we can't .  In so many countless ways we are blessed beyond measure.  And if I keep my eye on that, I know I can live in uncertain happiness.