Thoughts On Fear. Randomly Assembled.

  I took this down for my own reasons and Heather insisted I put it back up. She wins.

 My son, Malry, was born with Cerebral Palsy. The fact that he is alive is a miracle in itself. That is magnified by the fact that he was actually born dead. Since he was born there have been two more occasions where he technically died again. Both of those times were during seizures.

   Heather, my wife, also has a seizure disorder. Her and Malry's seizures are both regulated with medication.

   Greggory, my younger son, seems to be healthy as a horse.

   Something came to me tonight while I was lying in the bed watching T.V. I live with fear in the back of my mind, every day, that I am going to lose one of them. I find myself on edge when Heather doesn't answer her phone. I start getting a slight knot in my stomach when she takes longer than I expect to go to the grocery store. I get upset when she stays up too late reading or watching T.V. because I'm afraid she'll have a seizure and hurt herself or worse. I do all of this without the courtesy of telling her why I'm upset.

   Malry has a history of problems so worrying about him is second nature. He sneezed once and had a seizure in his crib. Now, nineteen years later, whenever he sneezes, I feel the need to go check on him.

   Greggory, on the other hand, has never given me a reason to be afraid. I took that one on myself. Every day I am afraid that Greggory is too good to be true. He can't be as perfect as he seems. Each day the sun rises I thank God that he is as healthy as he is. I have taken all my hopes and dreams for my first born son and handed them to Greggory. It is a heavy package for him to carry...maybe a bit too heavy for a thirteen year old boy who just wants to play, read, eat...and hug.

All of these facts and words are just me trying to understand myself. There is no real organization to it. I thought about it and figured I would write it all down in case I forget it. Coming into a little personal clarity is pointless if you go to sleep and forget it all. Thanks for reading.

New Years-Old Years-All Years

I woke up this morning to reminders of memories on social media.  With New Years Eve upon us it seems I've got a few memories.  This will be my 27th straight New Year with Heather.  We have not missed one together since our first in 1990.  That's a pretty good track record.  I couldn't think of anyone I'd rather spend one(or 27) with.  We have closed and opened some good years.  On the flip-side, we've had some that have tested us as a couple and as people.  All in all the years we've had together have made us who we are.  Happy New Year!

I started writing this and kind of lost my direction.

Checking In

I haven't written anything in my blog in quite some time.  It seems my creative juices reside in a shallow puddle.  I'm not entirely sure that is a bad thing.  Stressful and emotional events seemed to be the catalyst for a good portion of my writing.  The last year or so has been lacking in emotional occurrences.  I'm not saying they haven't happened.  They just haven't been the things that blogs are made of.

With all that being said...both my boys have hit milestones again this year.  Malry turned 21 in July.  He is of legal drinking age.  I briefly entertained the idea of pouring a beer down his feeding tube.  It passed without incident.  It was another joyful/sad occasion.

Greggory started High School this fall.  This is a big one for us.  He will be participating in JROTC.  With this he will have several extracurricular activities.  We've not experienced this with Malry.  Malry went to school and came home from school with little activity in between.  Greggory, however, will be busy four days a week with practices.  He is participating in Color Guard, Physical Team, Rifle Team and Orienteering.  He also want to try out for track and archery.  Let the good times roll.

Thanks for reading

Jason

Venting

I posted this to Facebook tonight after sending Malry to the hospital in an ambulance after long months of complications and several days of intense issues. I won't go into details just suffice to say I was venting.

If you don't know, Facebook prompts you to post with the question "what's on your mind?"  This was my answer. 

"What's on my mind? Facebook...that is a loaded question. I could melt the screen of this phone if I answered that honestly. There is a violent tempest of sh*t on my mind. I've got thoughts that could rip sails from ships and send Dorothy's ass back to Oz. Rough couple days. Think I'll listen to some Pearl Jam and go to sleep."  

I am posting this to my blog merely to save it. Sometimes I need to be reminded how I felt. Sometimes I don't. 

Counting

Heather and I have a game we play ith Malry every night when we put him to bed.  His mattress is on the floor to allow hime to get out of bed when he wants.  It also makes it easier for us to get him in the bed.

The game we play consists of me holding Malry by his hands and Heather holding him by his feet.  As we hold his hands and feet we count to three.  While counting we sway back and forth towards the bed and on threee we lift him up and set him on the bed.  Malry gets and jolt out of it and laughs most of the time.  Tonight I stalled out on two for some reason and didn't lift.  Just as I should have been saying three, Malry tensed up and kind of grunted.  When he did this I looked at him in amazement and said " Oh my god, he can count"! I immediately realized this was more than likely not the case.  I asked Heather if she had pulled on him when I missed three.  She said she had. He had tensed up because she had pulled on his legs. It took just a couple of second to realize how ridiculous the notion was.  That couple of seconds were some of the most joyous seconds of my life.  It was like 100 Christmas mornings wrapped up together and lived in one brief moment.  It was splendid.

Feeling Awesome

I'm not a guy that usually has a reason to say I feel awesome.  Tonight, Greggory, my younger son, made me feel awesome.  On the night of his 13th Birthday he came into the living room and just simply said "Thank you".  Heather and I looked at him and said "For what?".

"For being awesome"

"Really?"

"Yes"

"What makes you want to say that?"

"Because I think you need some recognition once in a while."

Enter tears and hugs.
My son, whom I think is one of the kindest, coolest, smartest and most loving kids on planet Earth, thinks his parents are awesome. And he thinks it enough to say so.

This is not a compliment that is spawned from spoiling a child with material things.  We try to give him things he needs and some he wants but we don't shower him with physical items.  This was a heart-felt and genuine expression of gratitude, I believe, from a boy who is beginning to see the world from more mature eyes...a young man's eyes.

I now feel so encouraged that maybe, just maybe, the hard lessons and the striving to set a good moral foundation for him is taking hold.  I do believe that my son has just made my life.

Kool Aid

Heather and I were getting Malry ready for bed tonight and I decided to get him something to drink.  Malry has been tube fed since he was nine so he doesn't drink much by mouth.  We give him water by mouth but tonight I decided to give him Kool Aid.  We give it to hime with a small syringe a little at the time to keep him from getting choked. When I gave hime the first little bit it startled him.  The next bit he swallow with enthusiasm and smilled at me like it was nectar of the gods.  I'm not sure I have ever tasted something that made me that happy.  He was so impressed with it that he opened his mouth like a baby bird anticipating the next milliliter of pure heaven.  This impressed me so much.  The things we take for granted are so numerous. I'm not really sure I know what else to say about it.  How simple is your life that you get that much pleasure from the taste of a cherry flavored beverage?  Sometimes I wish my life was that simple.