Monday, April 14, 2014

Laser beams, bottoms and blessings.. are you lucky & blessed?

I've not been overly open about it but I've not hidden the fact either that I'm in the process of writing a book.  A book that should be done by now but I tend to put just about everything else in front of writing (also obvious by my lack of blogging) - anyway, it's in process.

There are some things I worry about sharing or writing about, after all Parker is in high school now and many of his peers are my friends on the different social media platforms I am on.  There are some things I worry if I share, it is giving them or others in his school reason to bully him, make fun of him, or just be jerks to him.  Annnnd protecting Parker (and Allison) is one of the things that I want to do most in life.  Yes, I want to raise them to be independent, caring, compassionate, happy, productive members of society - I do.  I also want to be sure that I protect them as much as possible.  And I have to, especially Parker, as he cannot protect himself and that worries me. Every. Single. Day.  Then I remember that the peers of Parker's who are "my" friends on social media, are there because they are Parker's friends.  Yes, friends.  They care about him, they encourage him, they stand up for him - they even... protect him.  It's these "Aha" moments that help me reach out more openly to the thousands of parents and caregivers who need to hear what we go through each day too, who walk in our shoes.

So, tonight, for you... I write.

Ok, and because sometimes nights like tonight lead to thoughts I want to share and sometimes people are annoyed when I write several paragraphs as a Facebook status.  (Insert huge grin here)

So here's a fun writing fact:  The majority of the things that get scribbled into my notebook to be written about come to mind when I'm helping Parker in the bathroom. Yes, as I wipe his bum. Seriously, this is when "things I want to write about" pop into my mind.  Kinda better than thinking about the obvious in front of me. You see though, not every mom is lucky enough to still get to help her son wipe his almost 15 year old bottom but I am.  Lucky that is.  No, really, I am lucky and blessed.  Interestingly, that's something many people miss.

Frequently I am asked off the wall questions, honestly, I'm so used to it that not many phase me anymore.  Some make me laugh, some I anticipate and others... well, those take me so off guard that I'm sometimes left a bit stunned.  Especially when asked in person.  I can't hide my emotions well, what I'm thinking is clearly written out in my facial expressions.  While I always want to be helpful and educate, I have these "laser beam eyes" that I haven't yet learned to control.  (*Disclaimer, I do not at all feel bad about that, it takes time to learn how to harness and appropriately use your superpowers.)  and sometimes people have trouble seeing past them to hear what I say.  Those moments stay with me and I feel it's important to share my message, just in case instead of hearing the helpful message I said you were left focused on my eyes and wanting to curl up in a corner in the fetal position.  (*Disclaimer two, being told that by someone who is now a friend still makes me laugh and not at all feel bad for giving the laser beam eyes look in that instance.) 

I know, you are waiting to hear what this is actually about - here you go... A couple of months ago, during a time I was beyond my normal excessively busy self working through extreme excessively busyness I ran into a friend at the store.  A really great mom with a son the same age as Parker, who I've known since Parker was in early elementary school.  We stopped in the ketchup isle and spent a few minutes catching up.  She mentioned how her son was in Driver's Education this semester and I commented that it just blows me away that our kids are old enough to be in  Driver's Ed.  (They are only 14!!!  I find this frightening!)  She asked, genuinely, "Will Parker be taking Driver's Ed?"  I can only imagine what went through her mind as she asked this question out loud - having known Parker since at least 2nd grade, I'm pretty sure she was praying and chanting in her head "Dear God please say NO".  While I appreciated her thinking he would be included enough in school to take this class, I had to laugh as I said, "Oh gracious no!  Can you imagine?!?  This is one of those times I'm very thankful Parker does have special needs.  I can't even begin to imagine the stress of my child driving.  I feel for you!!" It was then when she said so innocently that question that took me from happy smiling friend to trying to fake a smile and control my laser eyes friend "Does it ever bother you that Parker isn't just like the others?"  Huh?  What?  "just like the others" While my eyes shot laser beams my mind slowly processed what I had been asked (yes, sometimes my brain does slow down a little) "Does it bother me that Parker isn't just like the others? Think positive, she included him with "the others" so she does see him as a part of their group of friends... think....nicely...."  I'll be honest I didn't even realize I was shooting laser beams yet, I know I tilted my head with a look of confusion and paused (that alone may have frightened her, I rarely pause) because she quickly followed it up with "You know, does it bother you that your life is so different than ours, do you feel like you are missing out?"  At that moment, I was fully aware that the laser beams were on full blast.  Ugh. I need to learn to hide them better, the smile isn't enough to cover it.  I knew she meant well.  I always say "you can ask me anything" and I do mean it.  It was a valid question.  It was just kind of painful too.

What I replied to her was important but I'm not sure she could take the focus off my piercing eyes to hear what I said.  I said, "Sometimes, it hits me - the reminders that he's not doing the same things as all of his peers.  He's not in drivers ed. He's not on the same sports teams.  He's not dating.  He's not doing a lot of the things that many people associate with fun and greatness in high school.  Those things are easy to forget though too as our lives are very busy with Special Olympics and other interests.  And, honestly, even if he was "typical" I don't know that any of those things would interest him.  I don't see my life as "different" from yours in the sense of I have it harder or even different.  We all have our struggles.  I'm sure your son has his too.  I doubt they are easier just because he is "typical".  This is my life, we have fun every single day.  That's more than some can say and for that, I am Thankful and Blessed."  She smiled that "I have pity for you" smile instead of the "I believe you" smile and we parted ways.  

It's these conversations that cross my mind when I'm helping Parker in the bathroom.  The ones that point out that he's not "just like the others", the looks of pity and the smile of "Thank God it's you and not me".  These are the moments I realize people don't realize how lucky I am.  They really don't.  I try to share some and offer insight into our days to help people see but what I realize is that some people can't see, not because I'm not making our lives available for them and not even because I tend to shoot laser beams their direction but because they don't want to. And I'm not sure why.  Maybe it's fear.  Fear that understanding and acceptance of our lives would lead to this happening to them. Honestly, you don't know what the next minute of life holds.  Everyone is one accident away from a disability.  While not through genetics like in our life but through a freak accident tomorrow they could be wiping the bottom of their almost 15 year old son.  Maybe that fear of acceptance keeps them from seeing that our life... isn't so bad.  Is it different?  Yes.  Is it challenging?  Sometimes.  Is it bad? Oh gracious no.  Do I worry about the future?  Every single day but so do they.  Just like every day they have good, bad, different and challenging.  Everyone is different but we all face the same good/bad/different/challenging types of experiences that are personal to our own lives every single day.  For whatever reason, that is easily overlooked.

Annnnnnnnnd here is a little secret - our life is actually pretty dang fun most of the time.  Don't get me wrong, meltdowns happen and they suck.  Parker is way bigger than me and could easily hurt me.  His anxiety is a challenge to harness since the end of the STX209 medication.  But, we roll with each day and learn something new.  For the most part, things go smoothly and we live each day to the fullest.  We may not get to experience vacations and places that others do but we are very capable of living life to the fullest possible for us each day regardless of where we are or what we are doing.

Tonight was no exception.  It's the 14th of April and Parker and I were given a gift that I never would have expected after our 80 degree weekend.  Today, after school - it snowed!  And, while Allison claimed to not be thrilled, she was the first to stick out her tongue and try to catch snowflakes after volleyball practice :-)

In true huge snowflake falling tradition, I turned on the Keurig maker to make some Dunkin's Hot chocolate which wouldn't be complete without a spoonful of Cool Whip.  Now, neither of my kids like hot chocolate or cool whip but I do and we were all super giddy because of the snow.  Parker, like normal, was glued to my hip walking through every move with me.  When I had the spoonful of Cool Whip in my hand I looked his way with a grin, reading my mind he said, "Oh no you don't!" and took off running.  I chased him through the house until he was cornered then smothered the spoonful of Cool Whip across his face.  We laughed uncontrollably and I left him to wipe it off as I started supper.  He came back to the kitchen a few minutes later grinning ear to ear and I knew exactly what he was up to.  Without hesitation, he grabbed the spoon and in one swift movement scooped up a glob of Cool Whip and was headed to me.  Turning my head while cooking, it ended up across the side of my head in my hair... and on the floor.  As we laughed he warned me as I took the spoon "Not to do it" or "he'd call Grandpa".  I did it anyway.  Covered in Cool Whip, we laughed so hard time stood still as we took kitchen towels and cleaned up... and called Allison upstairs for "Supper" or Cool Whip in the face, you know, whatever!  We are, in many ways, just like other houses.  We have fun, we get crazy and yes, Parker calls Grandpa to tell on me.  We may have been a little more wound tonight than normal and it may have been my fault for starting a Cool Whip fight but I wouldn't do it differently for anything.  

Here is where I believe our life is different though.  Just a couple weeks shy of his 15th birthday, Parker wouldn't dream of going to bed without me tucking him in, blowing a fart kiss on my cheek, hugging me tightly then pretending to fart so I'll leave his room.  He watches TV until he can't stay awake any longer, yell for me to cover him up one more time and then after a few minutes I hear it yelled from his room... "I love you."  The very last thing he says (yells) from his room to me every single night.  "I love you."  Words I waited 10 years to hear.  Words not every 15 year old would willingly tell his mom, words that remind me that even when I screw up there's still hope for me... "I love you." 

And this is how I know I am blessed.  Even before he could verbally say it, I could see it in his eyes, I could tell it by his actions - he loves me unconditionally and is always willing to show it and let me know.  When most 14 - 15 year olds are telling their parents how much they suck, mine says I love you... every single day.  No guessing.  No worrying.  Clear and simple, I am loved. I am one of the lucky ones who doesn't have to guess.  I know.  I am blessed.

There was a time early in the diagnosis that I was easily frustrated by the challenges in Parker's life, these days - it takes a lot, seriously a lot to frustrate me. There are still days when I see one of his friends driving and get a little emotional knowing what he is missing and days when I see them and thank God he's not behind the wheel of a vehicle driving.  There are times mid meltdown when I fear the unknown and even more times when a simple look or hug can stop a meltdown before it starts and I find peace within us both.  And every single day I fear what will happen to him when I am no longer here and do all I can each day to build memories, skills, confidence, independence and a circle of friends so I know he's never alone and always loved.  

Most of all, each day I remember we are blessed and lucky to have each other - all 3 of us.  It's the little things that mean so much and go so far.  The bath crayon messages on the tub walls of love and humor.  The notes in Allison's lunch box. The unexpected Cool Whip fight...  The laughter.  The hugs.  The constant reminders of how much love there is between the 3 of us.  They are my heart and soul and I am, without a doubt, the luckiest mom in the world - even when I'm wiping that almost 15 year old bottom.

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