Wednesday, April 23, 2014

a post....from meee...i know. shocking.

You know when you finally just say...aww F it. No one cares anyway.  As each day passes and I haven't written I do the typical...tomorrow I will write. Tomorrow IS the day.  The day comes and I  put it off again only to realize here we are months later with no new post. AGAIN.

Sort of like exercising.  Only I have started exercising.  So far...not so good but I am out there doin' the work.  Now as you all know running is in my blood and the minute I put those headphones on and start to jog (and it is certainly a "jog")  it's like my body goes into auto pilot, very slowwwwwww auto pilot I assure you, but I come alive.  Sweat starts cleansing me from the inside out and my manic brain starts to chill a bit.  With each passing mile I think of something else I want to write about. I miss it you guys. I miss my outlet. I miss hitting publish at the end of my post with that freeing feeling of having let it all hang out. The good, the bad, the ugly and the awesome.  But then I say to myself but no one reads anymore because you never post...so I find something else to do with my time (and that's pretty easy these days with a 7, 6, 4 and 5 month old ;) 

But...then I get this.


This came through my phone..............





And here I am.  I am showing up.  Even when showing up is hard.  

I don't particularly write for anyone else. I write because it's incredibly therapeutic for me, but then I read that someone can relate to our journey and it empowers me to continue on with our story.  Reality is, it is far from over and far from pretty.  I am back in counseling.  I thought I was coping ok, but my anxiety is getting the best of me. I constantly check for Talons breathing. For Paxton's. I freak when Mason says he has a headache.  I just worry all to much.  There's healthy worry and then there's stopping what you are doing every 20 minutes to go stare at your kids stomach moving up and down.  I have post traumatic stress disorder. I thought that shit went away after awhile. It doesn't. About two weeks ago we had to take Talon to the emergency room.  A fluke, freak thing happened when I was taking him out of the bath tub. I was drying him on the floor and the boys slammed the door on the other side of the wall beside us and I guess it vibrated just so that a wooden picture fell off the wall and hit Mr. T square between the eyes.



The scene that ensued was bad.  I flipped out, and by flipped out I mean lost it. I knew the first 'traumatic thing to happen to Talon was going to be bad, but in hindsight I really saw the "PTSD" (and honestly I hate saying ptsd...I don't know why. It's just a title. A thing. Whatever. I digress.)  Of course Talon was crying, a wooden picture nailed him just between the eyes, which in turn made his eyes bloodshot, but in my panic I swore his eyes were bleeding. I was screaming "his eyes are bleeding" to my husband.  He, of course, kept telling me they were just bloodshot, but I couldn't see through the tears. I just saw red. I had swaddled him in his towel and was rocking him back and forth telling him how sorry I was.  It's a weird feeling to think back to those 15 minutes. It was almost out of body. I literally couldn't breathe.  He's ok. He was ok then I just needed to allow myself to see that.

I was changing his diaper just today and wrapped it all up and set it aside.  Literally a habit from four years ago. You see we used to have to weigh Paxton's diapers even through his last surgery so that we were able to monitor his fluid output.  I don't um...have to do that with Talon, but old habits die hard I suppose. I was kind of stunned when I caught myself today.

Life goes on though. PTSD or otherwise.  I am working on working through it.  I am working on redirecting my thoughts and trusting in this journey. Just as I have had to do so many times before.  Talon is ok.  He is healthy. I need to allow myself to believe that.  Some days I just don't know how. Others I think to myself, you've so got this.  I don't have control over any of my boys ultimately. I can only do what I can. I can't control when Paxton's heart is going to fail. It's going to one day.  He has half a heart.  One ventricle. Two chambers.  Its hard to look at him and see that.  It's hard to believe he's not perfectly whole and healthy.  Man alive is he gorgeous. And smart and a total spitfire.



He's ok right now.  I need to stop waiting for the bottom to fall out and enjoy the ok instead of worrying it away. And I learned, thanks to a damn good therapist, that its OK to worry. That its expected after everything we have been through. I find I am hard on myself about that...any other  special needs mamas do this?  I feel like if I just let it all go something is going to sneak up on me, much like jinxing myself, but if I stay guarded I will always be prepared. Horrible way to live right.  Ain't nothin pretty about any of it, except the picture above. He is so worth it.  He is worth every gray hair. Every sleepless night. Every anxiety ridden moment.  I would live his journey all over again if it meant having him. I continue to live this journey for him. He is my inspiration every day.  At baseball practice when he's sweating profusely with a chest guard on, wires taped to his chest and monitors hanging out his pants the kid is still smiling and not letting it stand in his way.  If half the world had that outlook....


So for him I will be strong.  I will let him live the life he is meant to live just as I am living the life I am meant to live.  It may not be easy. There are most certainly moments I crumble and panic, moments I am not all that proud of, but I am human. Sometimes I don't know what to do when I look at him and the fear takes over.  I try to look down the road and my throat tightens, but then he will sass me or smile at me with those damn freckles and all is right with the world.  

So here's to you New York! I am going to do my best to keep this up for ya.  It helps. It feels good. Thank you for making my entire week and for motivating me to show up when I don't feel I have all that much to say...

Talon is perfect. Quickly approaching the six month mark. Half a year here on this earth.  Insane how fast time passes. Bittersweet. I love me a newborn that's for sure, but I absolutely adore the age he is at right now too.  No one lights up when I walk in a room like that baby does. When you pick him up to hug him he literally wraps his arms around your neck and squeezes.  My almost 6 month old gives the. BEST. hugs ever.  He's like a grown up in a baby's body.  A really chill, happy grown up.  He's the most content little man to grace this Earth I tell you.  He's 20 pounds, has two teeth, loooooves to dance, loves his mama and LOVES to eat. He's still nursing, but has started baby food, which I do NOT cook. Ain't nobody got time for that ;) He has not rolled over yet, but I am assuming his buddha belly is a bit of a roadblock in that area.  In due time... All in due time.  Austin, Mae and Pax ADORE him and are the best big brothers ever.  Talon, #4, fits seamlessly into our lives and I couldn't be more proud.  The boys played baseball this season, rocked it and have done amazing in school. 

...Life really is good...





We all have our stories that make up who we are. Our battle wounds. Our scars that show we made it.  My scar is ptsd, but the story that led me to that is simply incredible.  Maybe the conclusions are simply a reminder of just how far we have come.  How brave the fight.  Because how would we ever really learn to cherish the beauty in the good times without fighting like hell through the bad...


Until next time....

Love and hugs
~j

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