Avery Grace

Avery Grace

Wednesday, July 10, 2013


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.