Avery Grace

Avery Grace

Tuesday, April 5, 2016


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

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

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