Avery Grace

Avery Grace

Monday, July 28, 2014


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.

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