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

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. 

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

Thanksgiving Thoughts

If you know me, then you know that long before there was an Avery, (or Kaylin or Presley) I was a young professional eager and excited to change the course of childrens' lives as I dove into the world of Autism intervention.  In graduate school, we had an abundance of hands on training, and I still remember most of the kiddo's names who were my very first "clients."  I ended up working at the place where I had my final internship, and became skilled at assessment, program planning, and discussing the "hard" topics with parents whose lives were being turned upside down.  It was a birth to three program, so, more often than not, I was the the first step in a loooooooong line of therapists and interventions for those terrified and overwhelmed parents of autism spectrum kiddos.  I like to think I was empathetic, professional, gracious, and so on, but it wasn't too long into my own personal autism journey that I realized what a jackass I might have sounded like (at times) to some parents, who I now know were in utter and complete hell.

While I was pregnant with Avery, oddly enough, I was being certified in a "new" type of therapy called RDI, which stands for Relationship Development Intervention.  It had been touted as the "missing" link in Autism therapies, and I was excited to address what I (still) believe are the core deficits of all Autism Spectrum Disorders.  I had already been trained in Floortime (another popular intervention) and was, at the time, pretty against Applied Behavior Analysis, (what I am currently becoming board certified in.)  There are many schools of thought as to the "best" way to apply intervention to Autism, and what is right for some kids may not be right for others so I decided that  to be the best, I needed to be versed in all three.

So it is safe to say that I have met a few kids with Autism.  Over one hundred.  And I have never met two kids who are the same.  Just like neurotypical kids, children with Autism are as varied as any snowflake.  And mine is no different. Or is she?

I have really struggled to find a diagnosis or definition that is truly accurate when describing what is going on with our sweet girl.  Her early development was flawless.  I was checking off milestones one by one during that first, blissful year.  Teachers and therapists often disregard me when I say that, but as a professional in child development, let me assure you there were NO early indications of Autism or any other delay or disability.  Her motor, social, language, and adaptive skills were right on track, until the age of 14 months when she had a major immune response (due to her diagnosis of the autoimmune disease Mastocytosis), to penicillin of all things.  She had suffered 8 ear infections and 6 bouts of strep throat by the time she was one and a half.  So it was around this time that Avery's body, and all of her development, shut down and started to move backwards.  It was as if she had suffered a traumatic brain injury that kept, and still is, occurring.

So once I wrapped my brain around an autism diagnosis, I felt as prepared as I could possibly be.  But as the months have turned to years, and the one step forward TWO steps back pattern has continued, I am left baffled, heartbroken, angry and flat out tired.  After all, the many kids I know and work with who share an autism diagnosis make PROGRESS.  Not necessarily in any particular way, but almost always, therapy is very beneficial to the skills they acquire.  Avery is in many many many hours of therapy each week, and I shutter to think of where she would be without it, but her skills are still very infantile.  She has, at age 6, yet to regain most of the milestones she had reached at the age of one.  As many doctors have described her, she is an "interesting case."  Only to me, she is not a case at all.  She is my beloved first born daughter.  Who I would suffer and die for.  Who I nursed for over a year, who used to call me mama, who used to babble back and forth with me, laugh at my silly faces and who defined me as a mother. 


In the early days, post diagnosis, I gravitated towards other mom's like me.  Mom's who were driven to find answers, eager to seek help, and motivated to heal their children.  I backed away from some friendships, have had to endure countless insensitive comments and actions, and turned to the glorious internet for answers.  Now, I still find comfort in other "autism mom" company, but am often times left to observe the blessed progress their children make, while my own precious daughter stays relatively the same. Alone again. 

 But perspective is a wonderful thing.  As different as my child is, one of the greatest gifts she has ever given me is gratitude. As painful as it can be to remember Avery as she once was, I am still grateful to have had those precious moments.

 I have sought out other blogs about non-verbal children who are "trapped" inside like Avery, and have found within their words, an abundance of gifts and gratitude.  I am learning not to take so many moments for granted.  I am learning how to truly love without conditions.  I am learning the importance of patience, perspective, family, and letting go of selfish pride and materialistic attitudes.  I am learning to be tolerant of people I would have long ago moved away from.  I am learning how to live.  All because of what I thought was suffering and unfairness, I am now learning to see as glorious opportunities.  Opportunities to be more complete, more alive,  and better than I even could have been without sweet Avery and her disabilities.

Some days it is very easy for me to be angry, and more often sad.  But today, on this Thanksgiving, my eyes are open to the many gifts bestowed to me.  I would give just about anything for my daughter to have a life where she could be independent, healthy and heard.  I really would.  But moment by moment I am trying to be grateful for all that she is, and all that she can do.  And grateful for the countless gifts of grace that she is able to unknowingly give to so many who know and love her. 

Most of all, I am thankful today and every day for my three greatest blessings, Avery, Kaylin and Presley.  Avery has paved the way for me to learn not to take them or any of their abilities for granted.  And for that I am forever grateful.

Holidays can be hard if you have a family like mine.  Today I choose to live in the moment, relax a little, breathe deep, and remember my countless reasons to be thankful.

Eyes.

I hesitate to even say it.  Writing about it seems a little less risky.  Maybe I could whisper it... maybe you could just come by and see it.  Progress.  Whoa.... did I really just put that on the page?  Yep.  Progress.

Avery is six and a half years old.  So it's been five years.  Five years since the developmental clock stopped for her.  She was about 18 months old when she started moving backwards.  Losing words, signs, gestures, muscle tone, eye contact, and understanding.  Five years.  It seems like yesterday.  But I digress.

In my last blog entry I shared with you of Avery's most current diagnosis.  Epilepsy. A rattled brain to accompany our list of growing diagnoses.  Not that I was surprised.  I was, as I mentioned, even a bit relieved.  To finally have something that is treatable.

For three short weeks she has been taking a medication to try to control the almost constant seizure activity that was wrecking havoc on her temporal lobe.  The medication has a long list of side effects, as do the dozens of nutritional supplements and pharmaceutical drugs that Avery already gets in a hefty daily dose.  For the first week, she was a bit "zombie" like (for lack of a better description.)  Her teachers and therapists watched as she muddled through the day, drooling and half asleep.  The neurologist told us, as they often do, to wait.  Wait.  Give her some time to adjust before we jump to another new medication.  I almost didn't listen.  She was even further "away" from us than usual, and I couldn't imagine being that physically exhausted all of the time.  However, I held my breath and relented to give her another week.  I'm glad I did.

Fast forward a few weeks and everyone who knows Avery has noticed a change.  And this time, it is a positive one.  Simple things like, when I say, "put your cup on the table" (instead of the usual throwing it on the floor) and she DOES it.  Better eye contact, better simple imitation, more laughter, more vocalizations, and (dare I say it) better SLEEP.

If someone walked in to my life and saw how we manage our house and schedule, I am quite certain they would run away screaming.  Autism-proofing our home and lifestyle is an adjustment to say the least.  Just yesterday, Avery was able to reach a shelf we had screwed into the wall in her playroom that held the DVR and DVD players.  The TV is already mounted to the wall, cords wired behind the drywall.  She pulled the whole shelf down and was biting/mouthing the wires that came down with the equipment.  Thankfully, she was fine.  Thankfully, we have a handyman friend who came right over to save the day.  Until she gets a little taller that is.  We have five professionally installed baby gates in our house.  We have video cameras to watch Avery.  We just replaced blinds with shutters to keep her from strangling herself with the strings as she couldn't resist constantly meddling with them.  I've glued/taped down picture frames, decorations, and rearranged locks and added toplocks to our doors.  We even had a electric gate installed across our driveway to prevent her from somehow escaping out in to the alley way.  We are constantly on our toes.  Constantly having to re-think how to manage.  It can be exhausting.  All the while watching our precious daughter grow taller and taller, but stay on a developmental level of an infant.  We have fears and worries that no parent should have to encounter.  That most everyone is completely oblivious too.  Autism, oral apraxia, motor apraxia, mastocytosis and epliepsy have left our sweet, happy, adorable girl, still without words, without simple understanding, and without so many abilities that we all take for granted.

So it is with extreme caution that I use the word progress.   But let me share one more example.  Today I was taking Avery to sit on the potty, which we do every hour or so even though she is not potty trained.  She's about 50/50 as to whether she will actually go or not, but we are trying to give her the opportunity.  Anyway, she was looking right at me, smiling and laughing.  I was waiting her out, persistently sitting her back down because I knew she had to go.  Since we were sitting there, I decided to play a silly peek-a-boo game with her, but instead of saying "boo" as I appeared from behind my hands, I would say "mama" (emphatically and with lots of excitement.)  She was actually giggling at me.  RESPONDING!  She even reached for me and made some sort of "m" sound approximation! It. Was. Glorious.  Downright spectacular.

It isn't often, or even ever, that I go to bed at night smiling, and thinking, "this was a really good day."  Most of the time I am too overwhelmed, stressed with life, schoolwork, three kids' schedules, one that includes 30+ hours of therapy a week in addition to her school.  But tonight, no MATTER what the rest of this day holds, I will relax, smile and lock in my memory bank the moments I got to share with my three blessings today. 

I love being a mom.  I am so lucky to get to have this role.  Sometimes the journey is hard, and it's too chaotic to see the beauty in the day to day.  But today was beautiful.  Progress or not, its so nice to see Avery's eyes.  And to know that they see me. 

Moment

I recall the moment.  The exact minute when the first doctor told me for the first time that something was wrong with my sweet baby girl. My first born.  My sweet Avery Grace.  I had so many hopes and dreams for her.  She was so wanted, so loved, so precious to us.  She was 4 months old.  By six months we had a name for the mysterious "spots" on her trunk, face, arms, and legs.  Her very first diagnosis.  Mastocytosis.  I was so naive then.  So hopeful, and so silly.  If only I knew then the path we were headed.... I would have turned and run screaming.  I NEVER imagined such heartbreak.  Such despair.  Such.... a loss.

Fast forward 6 years. I bet I have aged 20.  I would FAIL a stress test.  My mind and body have endured warfare.  I am, by all accounts, overwhelmed. Avery is 6 and a half.  She is beautiful.  She has not made any notable developmental progress since she turned 1.  She has, actually, regressed since then.  Over, and over, and over again. We have had two additional, beautiful daughters since then.  Three total. Thank GOD, our second and third blessings are "typical."  A nice way of saying, they do not have Autism. 

When Avery was 19 months old, I drove away from her neurologist, and cried as I talked to my dad on the phone and explained that Avery had been diagnosed with Autism and Apraxia.  My dad was tender, loving, supportive, and optimistic.  We all were.  Surely Avery would make excellent progress. I was, after all, an autism "expert."  I was already certified in floortime and RDI, and "thought I" knew exactly how to help her.   Whatever.  Soon I would see that my child, (and I have worked with over 100 children on the Autism Spectrum) has the most severe and debilitating kind of autism. She is 6, non-verbal, not potty trained, can not imitate, and does not understand language.  Fuck.  Now what?

So here we are, plugging along, and her therapists and nanny start to notice a change in her. She "checks out" and "twitches."  SHIT.  What is going on.  I try to stay in the moment.  Don't jump ahead.  It will end up being "inconclusive" like every other MRI, EEG and other genetic, blood, and brain test we have had run on Avery.

But, today it wasn't inconclusive.  Today her neurologist confirmed that Avery has epilepsy.  That she has MANY seizures a day.  That she has been unable to make progress because her brain is a fucking mess.  And all I could think was... "this is one diagnosis I am kind of grateful for."  Do I want my child  to have epilepsy?  Absolutely not.  But this is ONE diagnosis, (of her total of 5) that is actually treatable.  Thank god.  So BRING on the meds.  Lets knock this one out of the park.  Finally.

I have had so many defining moments in my life.  Avery has been a part of most of them.  I had several memories and moments with her in the last 24 hours.  I connect with her on many levels.  She reaches out to me for physical touch, giggles at me, glances at me.  And I know that sweet girl loves me.  My other two sweet girls, Kaylin Joy and Presley Hope are not without their challenges and triumphs.  I am working hard to enjoy all three of my precious daughters every day.  To take a moment, and really live in the present.  To remember gratitude.  To embrace the (however fleeting) precious moments I get to share with my daughters. 

I have so much to be thankful for.  I am trying hard to keep that in mind as we face, yet another, debilitating diagnosis.  So again, THANK YOU.  Thanks for loving us. For reading this.  For keeping us in your thoughts.  It makes it all worth it.  Relationships are what makes the world go around.