Tuesday, March 10, 2015

When the time changes.

I can't believe it's been 6 weeks since I've taken the time to write. It's not that I don't have a list of a thousand topics I really want to write about, it's just that life is busy and time slips away.  Writing is moved to the bottom of my list, I tell myself "I will tomorrow" yet I don't.

The past few months my life has been busier than normal, I know that seems impossible (to me as well) but completely true.  Some days I'm not sure how I'm functioning, then I look around at the chaos of my room before collapsing in bed for a few short hours each night and realize where the give has been in order for me to take in more.  It's been a good busy though, a busy that has brought me incredible happiness and a sense of peace and belonging that has been missing from my life. A piece I didn't realize belonged or was missing in my life but completes me in a way that I can't even begin to describe beyond my soul is complete.

While I am busier, I am happier and as odd and completely contradicting as this will sound I feel as though life has slowed down enough for me to really step back and see what is going on around me.  A way that encourages me to want to slow down and step back more. That piece that was missing is peace and it's amazing.  Tonight, it was also tested.

Things have been going really well for Parker for quite some time now.  There was the meltdown at Christmas that left the fingernail of my middle finger completely black and blue for over 2 months. While the color is returning, the nail is now chipping away leaving me with the most unique of fingernails around.  It'll be fine, like all of my bruises this one too will one day be a distant memory and not a daily visual reminder of a rough moment in time. It's part of my life... of our life... of fragile x in our home.  We move forward instead of dwell, each day is new.

Deep inside of me, I've tucked away my uncertainty and unhappiness about this week. This week that should be like any other but is disrupted by the wonderful "springing ahead" of our clocks. While it throws off everyone's balance just a bit, I have been quietly waiting for the fall out from it catching up with Parker.

It's Tuesday, one of his favorite days of the week.  Basketball practice.  One of his most favorite activities. Today, I did not anticipate the time change to affect us, even though, I totally should have.

Our evening had been incredibly pleasant. I didn't work too late.  The weather is very spring-like in the mid 40's to lower 50's which translates to windows being opened in the house. Everyone had a great day at school.  I was fixing breakfast for supper... we were like the picture of perfection.

Allison had been outside playing in the sand, later swinging on her favorite swing on the swing set while I was making dinner. I have been debating all winter of getting rid of it but watching her swing from the kitchen window, seeing her smile and so incredibly care free everything around me stopped.  I soaked in this moment in time -  her smile, her laugh as Daisy would run past her chasing the tennis balls Allison had thrown for her, every second of this beautiful spring like day.  I smiled as I watched her, reflecting on how much she's grown up and appreciating how much she's still my little girl and deciding the swing set would stay.

After I had everything ready, I called her in for dinner.  We had 40 minutes to eat before taking Parker to basketball practice.  I had let her hold off on her homework to play outside with the agreement that she could do it while he was at practice. We ate together, I couldn't help but smile as I watched them finish their meals.  That piece of peace that was missing overflows to all 3 of us in our much more completed lives now.

Life had seemed to fall into place. This is a life I could adjust to, easily falling back into the meltdown free days and evenings, taking in snuggles, hugs and kisses over flying fists, headbutts, kicks and being spat on. I wasn't sure when this became my reality but I was more than happy to be right here. It wasn't perfect, I do have a 15 and a 12 year old... we have some awesome teenage attitude from time to time but I'll take it and giggle at the eye rolls remembering how I used to do the very same.

I told Parker it was time to go to practice.  He knew.  It was on his schedule.  It came after dinner.  There was one problem.  One problem completely out of my control.  It didn't matter what the clock said or that the routine of tv programs was right on track, Parker looked at me confused with those huge blue eyes and said, "It's not dark out."

F*#$&@g day light savings time change. Of course it wasn't dark out yet.  We had "sprung ahead" an entire hour. While we watched people enjoying bike rides and walks in our neighborhood, his walls had been silently crashing down inside over this.  His schedule was off and I couldn't fix it.  I knew things had been going too smooth for this time of year and it hit hard. Literally, he hit (me) hard, when this reality crashed down his walls.

I spent the next hour doing everything I have learned to do over the years. We calmly went over his schedule.  We looked at the clocks.  The TV schedule.  We talked about his friends who were waiting.  I was quiet and calm. Every fraction of a second that passed, no matter how calm and quiet my soft sing-songy voice that he likes was I couldn't stop what was happening around me and within him.

I went with my fall back of humor.  Humor always works. At least almost always. Today, not so much.  He asked for the impossible - for it to be dark first, for Dan (who was at work and lives 40 minutes away) to come take him, for coach to cancel...the requests I couldn't fulfill fueled his already growing fire inside.  I had a reason for everything and his favorite reason for us to really kick it in gear so he wasn't late "I had to poop" (not really at that moment but it's his favorite reason for us to hurry through anything so I go with it) was my fallback - of course, his favorite fall back of mine. While it brought some smiles, it wasn't enough.

When I went outside to start the car, he was behind me a short time after, fists flying, tears flowing.  "It's not dark, it's not time, it's NOT dark" he kept repeating.  I'd ask for hugs as I blocked swinging fists, through tears he'd open his arms and hold me close for a hug only to start hitting my back a few seconds into it pounding with a tightly closed fist.

At almost 16 and 6 foot tall, he has absolutely no idea of his own strength as he towers over me. As I held him close I reminded him "soft hands" and "only hugs".  Not wanting to continue this in the yard for the entire neighborhood I guided him back into the house.  Exactly where he wanted to be so not exactly the best move I made but certainly the least physical.

As I regrouped and brought out my best familiar silly voices that I do that he loves, I would text on my phone, the replies brought him down a notch and almost falling over with laughter at times.  It appeared to be the distraction that I needed to redirect him from "not going" to "going".  However with every step that felt like we were going forward and would make it we were thrown back on our asses by the very bright sun still beaming outside.  "It's not dark yet." would be repeated.

I acknowledged the sun, reminded him that it's spring and will be light longer. I dodged a headbutt or two or seven reminding him to be nice. After missing the first 20 minutes of practice we had the shoes previously taken off his feet and thrown at me back on, along with socks and had made our way back outside.

Allison was in the van, I took my place in my seat fairly convinced this would go well.  About 10 minutes and several swings at me later he was in his seat and agreed to close the door.  I exhaled feeling victorious and confident that having made it this far, we'd obviously make it in for the end of practice.  That was my goal, knowing damn well that if he didn't go inside, he had won and Thursday would be a repeat of tonight's battle. With "Old Time Rock and Roll" playing I backed out of the drive as I heard the familiar tapping of drumsticks on my headrest. That's when he noticed he left the front door open.  "Stop" he yelled out while a hand reached up from the back seat connecting with the side of my head.  "Parker!" I said back in my deep and not at all happy, you've pushed me too far voice.  "You do NOT hit mom. Not at all. I am DONE." Almost a full hour into this battle, I was done.  "The door is open" he yelled at me.  "It's FINE" I replied telling him the neighbor's would close it and driving away.

As texts came in checking on us, I asked him if he wanted to make the call I had promised to Dan as a reward for getting in the van.  He did not.  He was focused on the door being open at home.  I was focused on how I would get into the school where is practice was to get his papers of information on Friday's games. I replied simply to the text asking me to call "I can't".  I couldn't. It wasn't about Parker, it was about me.

Disappointment had filled every ounce of me for snapping at Parker, for not going back to shut the door out of fear that he'd get out and we'd be still at home, for not getting him to practice, for the time change winning.  While I knew he wouldn't get out and go into practice, I was still determined to make it to the school to get his paper.  I was fighting back tears, knowing I still had to walk into the school composed to get his papers and explain why he wasn't at practice. I knew the voice on the other end of the phone would instantly bring Parker to a better place, it always instantly did. It's also the voice that's become my safety net, the voice I can't hold it together for, the voice who wouldn't listen when I said, "I can't" and instantly called.

After finally getting the phone switched over to blue tooth we were at the school. I left the phone and kids in the car to carry on their conversation that was switching over to laughter while I fought with every exhausted bit left in me to pull myself together, walk in and get the information that was needed convincing myself I had this under control.

This... THIS should be the easy part.  Post meltdown. No flying fists to block. No one spitting at me. No kicking. No headbutting. No throwing.  Just hugs, laughter and endless "I'm sorry"s.  THIS should be the part where it's easier, not harder.  Yet it's always the hardest part.  While he's moved on and we've made it through, emotionally and often physically, I am drained. Smiling, hiding a tear stained face and pretending like everything is great takes an incredible amount of energy.

With a deep breath exhaled, I walked into the cafeteria to ask for his papers and explain why he was not at practice.  An incredibly difficult task, I'd like to believe I often pull off well... tonight I completely failed at. Making it passed the first two questions of "Have you been crying?" and "are you alright" with simple quick answers there was no keeping the tears back when I needed to explain where he was.

It feels so silly.  He's healthy.  He's in my eyesight.  He's ok now.  So very much to be thankful for.  Yet, tears of exhaustion, defeat and frustration quietly fell and there was nothing I could do except say "It's not dark yet.  Practice doesn't start until it's dark."  Words that the coach's wife very well understood as she walked me to the door.

As I got back in the van, the conversation continued on the phone.  Reassurance that Thursday Parker will go to practice without any problems, that these things happen and most of all that Parker is loved and very much believed in wrapped up the call before the endless laughter and giggles of the goodbyes.

Home again it wasn't long before he was in bed.  Meltdowns take a lot out of all of us. As he settled into his room to watch TV, Allison and I wrapped up her homework.  Sitting together at the table the conversation went from her incredible music score test to the words I am sure she thinks often even though I rarely, if ever, recall her saying: "Mom, sometimes I wonder what Parker would be like if he didn't have Fragile X.'

I couldn't even look at her. My heart ached as tears simply streamed down my face as I reached over to run my hands along her hair finally saying "Me too, princess, me too."

We returned to her school work, focusing on spelling.  Panacea, another word for cure, is one of her words this week.  She looked at me with her big blue eyes and said, "If I were a wizard, I'd create a panacea for fragile x."  A huge smile covered my face, looking directly at her I simply and honestly said, "There is no doubt in my mind you could do it, wizard or mortal, you have that power."

Over the next week... possibly two... we will once again adjust to the sun staying out longer, eventually still being out when it's time for bed.  In the blink of our eyes fall will be here and I'll be explaining why it's dark so early once again.  Likely as a reminder, I guess, that some things are simply out of my control but we will still survive.


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  2. This near exact thing happened to Conner and I last night because he had a double ear infection and couldn't tell me he hurt and he didn't want to be at the urgent care clinic because they were going to touch his ears..I wish I could teach him to adapt to small changes..Love you and I totally identify with that situation (although my 3yr old doesn't swing nearly as hard)

    1. Thanks :-) I hope that Conner is feeling better very, very soon!

  3. I don't know if it's difficult for you to write, but it's a blessing to read. Thank you for sharing your heart and your children. And your chidlren are wonderful. I so wish that my children could spend time with them. I think they would be great friends.

    1. Thank you so much for your kind words. It helps knowing that my writing and sharing of our experiences helps others. I'm sure our children would be great friends too :-)