Tag Archives: guest post

Bolt On

My 13-year old son Alex slams shut our bedroom door just short of 8 a.m. Something tells me to get up. I don’t, though, and a few minutes later I hear a door shut in the hall outside our apartment. That slam I’ve heard before. The stairwell of our building is across the hall; all you can say is that Alex has never left our apartment building.

Devastation.

The word means different things to different people.  For some, they break up with a lover they thought was “the one.”  A friend of ours considers it not being married by 45.  Not owning the latest designer brands for that year.  The death of a pet fish (to a 7yr old) (while you feed him “mystery meat” (aka fish sticks”) that night his fish died).   To some, the events that can bring about devastation mean something tragic.  To those who didn’t like their lover, need material things, want to be married or never cared about how a fish lived….  These can mean different things.  To those with disable children/loved ones it means something else.  This week, my husband faced his own (another) devastation….

The MINI-VAN.  Through the amazing efforts of people we did not know (or didn’t know well), we received a 1997 Ford Windstar WITH a FULLY AUTOMATIC WHEELCHAIR lift.  Basically we are going from lifting Riley out of the chair into his car seat, which he would cry as soon as he was in (too small, too vertical, too much… for us all) to a van that our youngest can operate the lift (really cool… like a “Lunar Landing every time” he puts the lift down) and Riley just wheels into the van and is in (comfortable)!!!

The first time he was in it, I could see  his expression… going outside he thinks (“warm FL air hits my face”), am rolling (“guess I am going for a Rollerblade with Dad?”), wait something is going on (“I am in my wheelchair and moving and Dad is not around?!  How did we get to Naples Equestrian Challenge and I never left my wheelchair.  Holy Crap!!!! I can fly!!!).  Total confusion by Riley.  How can this be so easy? (for him and us).

Just Breathe

The popcorn has been popped (and eaten, but not by Riley… he really can’t enjoy that… but what he had is Chocolate Almond Milk (actually, really good).  The movie plays on– our one son laughs and jumps at various scenes.  Riley, hindered in sight and sounds, is right along there with him… “jumping”, tilting his head back to “see the action”, laughing along with the laughter but never really getting the punch line, but enjoying it just the same.  The movie ends and it is time for the bedtime stories.  Sometimes made up (but who couldn’t make some of this X up, right?).  Prayers said.  All during this time, Riley still in hold/tow.  One son asleep, another awaits.  Time passes and his drugs kick in (just say yes to drugs I always say).  Then the breathing begins, the best part of the night.  A deep in and out, almost like a beacon of sound, radiating from Riley.  In and out.  In and out.  No matter what life brings (and it can bring alot), I think that Pearl Jam had it right with the song “Just Breathe”  (“Stay with me… Let’s just breathe”).   Intent of song doesn’t quite fit, but when a movie night goes well and you are left with a resting son, it is nice to sometimes just sit and breathe.

John

“Today” Independence

Independence means.  This is my son, participating in the 4th of July festivities of Bonita Springs (along with his “adopted Boy Scout Troop 109”).  The “Disabled” have come a long way for their “independence” (before 40 or less yrs ago) they would just be locked in some institute and forgotten.  Today, my son (disabled)/my other son (typical), are side by side together in a Parade.   We have all come a long way.  It is due to you, who read my blog, but more so….  It is due to those who serve (in our family, many have served our Nation, Rebecca Buczkowski and Matthew Songe lead our Nation/my family proud).  Independence day is a long road, one we take day by day… fighting battles abroad or at home (getting my child to sleep is a battle… but he is home with me and in a parade… 40 yrs ago, would have been in an institution and forgotten, but not today!).  Today, let us celebrate “Independence Day”… as a Nation, a family and remembering what is like to be Independent (and, MOST OF ALL, appreciate all those… family, soldiers, loved ones, caregivers… who make it possible).

John Buck

Open Wide

The Cartoon Network blares over the chair from a TV to distract kids. This practice understands kid patients, I’ve learned over three or so appointments. They especially understand kid patients with special needs.
“Daddy’s right here with you,” the dentist says to my 13-year-old son Alex, who has autism and who hates the Cartoon Network. I consider asking if they can put on Elmo.

Alhambra, Venice, Fl – Saturday May 19th, 2012

It is with a very heavy heart that I post tonight. Today, while diving, a fellow adventurer, lover of life and father died while fossil hunting. While I was not privileged enough to say I knew him personally, this past month his son and I dived the same waters. We exchanged hellos and brief conversation. All divers/discovers. I saw the excitement in his son’s eyes before every dive. The love of discovery and “treasures” he found along the way… diving… a “way” from what I am told, his father taught him. When coming back from dives, I watched his son’s family playing on the beach and thought of the joy in his family had and how someday he will teach his children to dive. They have so much love of the ocean and life (you can truly see it in him and his family). I thought of my family, my son, and how someday I wish to share the same joy/journey/way with him. But today, I am deeply saddened by their loss. A father, a friend, a relative, a fellow diver has been lost. Again, I did not know him, but I wish him peace. I wish there were more words than “You are in our thoughts and prayers” that I could offer to his family.

John Buck

Two of a Kind

To my son Alex I give the command typically heard on a school morning: “Put on pants, socks and shoes.”

There’s this thing about the socks. Most people wear a pair that resemble each other. Alex doesn’t.

Chow Down

“Alex, dinner!” might sound like an echo across normal backyards the land over, except in our house it’s followed, every evening, by “Here are your hot dogs, Alex.” Hot dogs sliced by the width, about a half-inch a slice, and they have to be Hebrew Nationals because if you use any other brand you’re not fooling anybody.

The Disabled (ALL) Creed

Yeah, the Ghost Writer again (aka, husband/father/john).  This post is from “an inspired non-believer.”  What I am inspired by/what I believe in (that is for me).  What you take away from these writings, if anything, is for you.
The background of this post: For Catholics andNon-Catholics, I am Catholic and look to God (the Church at times, but mainlyto God).  This is my version of theNicene Creed (Google it):
The Disabled (ALL) Creed
I believe inthe potential of a disabled person, a maker of tears of joy/sorrow, and Creatorof that which I have become and am willing to defend.
I believe inmy Son, Riley, begotten by God’s Will and at times a stranger to the world we(the functioning) take for granted.  Hitby seizures, forces unknown, nights without peace, rises again and teaches meto appreciate every small thing in life (a laugh, a sound, a smell, a step).  Night after night, day after day, inaccordance with God’s Will he is my son and his story I will share with you (ashe shares it with me).
His Story,for those readers and for our understanding, was given to me by Heaven andincarnate by the Will of God and cast upon to tell this (his/our) story so thatwe may appreciate life, love, suffering and healing.
I acknowledge the limitations that they (thedisabled have); and I look to help them overcome their limitations and fightfor their cause, in this world, until they find peace in The Next. 
I believe in the Helping Guides– the parents,the relatives, the friends, the supporters and the caregivers; who come to usto overcome limitations of the disabled.
I believethat this is one messed (*edited) up world. I believe that life is not always fair. I acknowledge the limitations of humanity/the disabled and the way theworld is; and I look to make it a better place for the disabled (all) and thosewho care for them; pray for them or are willing to understand their world (andif I am Blessed enough, share mine).
This is myStory. 
Linking up:

Stacie’s Theory of Relativity

Stacie’s Theory of Relativity….
R.espite
E.quals
L.oving
A.ll
T.hose
I.
V.alue
I.n
T.he
Y.ears… Me, mychild, my family For a Moment in Time….
Respite is a moment in time, no matter how brief.
It is spending time with you and going back in the past to remember who you are.
It is spending time with a spouse and remembering why you got married or even said hello to them….creating future memories.
It is holding on to a moment in time that is for you,even briefly, that reminds you of who you are (the person you were or thought you would be)…
It is living in a moment with those you love….
It is spending time with a child and forgetting the disability…
Respite is not about the hours in a day you have to take care of a child.  It is about the hours in life you are given and how you will spend those moments.  Respite is about spending time with the most important  or more importantly,share those moments with others….
This is 10 minutes of my life to post.,…. share with others… my respite.
Written by my Sweetheart
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