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 and Non-Catholics, I am Catholic and look to God (the Church at times, but mainly to God).  This is my version of the Nicene Creed (Google it):

The Disabled (ALL) Creed

I believe in the potential of a disabled person, a maker of tears of joy/sorrow, and Creator of that which I have become and am willing to defend.

I believe in my Son, Riley, begotten by God's Will and at times a stranger to the world we (the functioning) take for granted.  Hit by seizures, forces unknown, nights without peace, rises again and teaches me to appreciate every small thing in life (a laugh, a sound, a smell, a step).  Night after night, day after day, in accordance with God's Will he is my son and his story I will share with you (as he shares it with me).

His Story, for those readers and for our understanding, was given to me by Heaven and incarnate by the Will of God and cast upon to tell this (his/our) story so that we may appreciate life, love, suffering and healing.

I acknowledge the limitations that they (the disabled have); and I look to help them overcome their limitations and fight for 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 us to overcome limitations of the disabled.

I believe that 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 the world is; and I look to make it a better place for the disabled (all) and those who care for them; pray for them or are willing to understand their world (and if I am Blessed enough, share mine).

This is my Story. 

Linking up:

Dare to Share Linking on Sunday

Riley Met A Goal

Return to Florida: Donna Lee

I would like to begin with a new years blessing.

It is going to be a Fantastic year, I can feel it!  As was this summer.

As you all know, my brother received my bone marrow, and as of today, his latest biopsy shows 91% of it being his own. Thank you God. The month of September I spent with my 14 month-old grandson, helping him to adjust to daycare and spending as much time as possible bonding with him. He rode his first choo choo train with "safta" (grandma in Hebrew). I was very privileged to have had that time with him.

Presently I am back in Naples, Florida and my first visit, after mom, was to Riley and his family. Riley had a tough summer, involving seizures and coughs, increasing his muscle tone, tightening them, as well as his tendons and ligaments. After not seeing him for 4 months, I noticed how much he has grown, especially taller. He seemed to have enjoyed the massage, because, as I pointed out in a previous blog, he vocalizes and sings to me.

I started out wishing us all a wonderful new year, or Shana Tova (Hebrew), filled with good health, happiness and productivity. This week I will resume my volunteer work at Naple's Equestrian Challenge, become a more active participant in Freedom Waters Foundation organization, continue dancing with my buddies from the Federation For Developmentally Disabled, at Fred's Diner, every Tuesday evening, and of course, visit Riley on a weekly basis. Being part of these activities, gives me the energy of life and fills my soul with true abundance. Thank you God.

Donna Lee
Nameste v'Shalom

New digital Parenting Specialneeds Magazine is out today.

Shared by Debby Frenkel:

Freedom Waters Foundation Friends: 

FWF Made the News in Naples tonight!  Thank you to Paul Gessler who did a great job on the story at ABC!

Enjoy and please forward and share with all your friends ----

Here's the link to the story: http://www.abc-7.com/global/story.asp?s=15637085

Here's to what we do!  Thank you all who Make it Happen! 

Debby

Today's discovery for my international readers: European Disability Forum

The NICU: Riley in Daddy's Arms

Wordless Wednesday

In Need of a Home

For Our World a poem by Mattie Stepanek

The Canine Heroes of 9/11

The romantic life of a couple with a disabled child

The romantic life of a couple with a disabled child.

(I, John Buck, being of  relatively sound mind (yeah, who am I kidding) take credit for this contribution.

THE NAUGHTY NURSE:  Yeah after a kid with a disability, the whole nurse/doctor role-playing thing will never be the same.  Instead she is the b*tch  who critiques you on how you handle being a parent and not making the mark.  Unlike a spouse who will never criticize you for not making the mark :)...  esp. when s/he is overtired, stressed and covered in XX (fill in the blank but it always originates with Riley).

LOTS OF MOANING: With a disabled child in the bed 7 feet away you will constantly hear moaning during "the moment"... move to another room and the baby monitor will provide the background "music."  The best part is when the diaper gets really full, you are "in the moment"/almost at the end and there is a huge giggle/laughter in the background.  Nothing says romance like laughter in the background.

A THREESOME : frequent breaks "in-between" to put a pacifier back in the mouth; change a diaper or lift a drooping head.  Trust me, a threesome is TOTALLY OVERRATED.

BEING CATHOLIC:  yeah with a disabled kid you don't get that much and probably every 2 months you get your virginity card back.  One more card and I can apply for canonization.  

THE CRYING SCREAM:  Back molars are coming in and no matter what you do, cries of pain come out.  The cries are nothing like the people in "the movies."  Even "the Hedge Hog" would have backed away from that one.  But, when you are the parents of a disabled child, you plow though!  Take your chances/"Embrace" the moment (and for those of you who do know get the joke/ Do not Google "hedge hog movies adult."

A THOUSAND AND TWO USES FOR A BURP CLOTH:  Yeah, we are trying to keep this blog PG-13.  You fill in the blank.  (Legal claimer:  Any profit made for using the burp cloth in this way will be forward to >>>> :)

COULD HAVE BEEN TWINS:  My FAVORITE  story... Ronan was conceived while my mother-in-law watched Riley for 30 minutes.  Considering it took 10 minutes to get to the room.  Ten minutes to get back.  Five minutes to remember what the hell we were doing.  We had 5 minutes to enjoy.  His joke:  Had we had 10 minutes it could have been twins!

 

I SHAVED FOR THIS?:  When you have a disabled kid you will be happy that they just showered (in the past 3 days).

YOU'RE DONE ALREADY?:  As a supportive/contributing husband, I took 7 minutes and wrote the above.  When I told Stacie I was finished.  She replied "you are done already?"  Again, it is amazing what you can/will/DO accomplish with a disabled child!  Even without a disabled child, in the context of this blog, it still fits!

by John Buck

aka The Shark Tooth Guy

Link

Blogging Worldwide

 Found the a wonderful surprise in my email this morning:

Mary Rebecca created the adorable new Riley's Smile Button for her Blogging Worldwide project.

Isn't it great?

The boys and I are on our own again this morning.  John is working yet another Sunday and sees this Sunday morning only project going through next summer.  I am missing my husband and the boys definitely miss their Dad.  Ronan is being a very understanding six year old.  He rose as usual before 6 am, got out of bed on his own, dressed and came downstairs and entertained  himself (or rather cared for his herd) on Webkinz allowing me to focus on Riley.

Have a safe and wonderful Labor Day Weekend.

Stacie

If you stumble by my post today - Please link up with me at the sites below

Enter a Giveaway

Another Saturday

Created for Special Needs Kids and Young Adults

Ballet and Tae Kwon Do at Special Kids Dance & Performing Arts is new in Fort Myers, FL

www.Specialkidsdance.org

Annie saw this and thinks he looks like Ronan!!!

Your Ideas for Topics from Disability.gov

Each month, White House staff who work on disability-related policies host a public, live-captioned conference call to keep the public better informed about important developments on many different disability issues. These calls also connect you to leaders in the federal government who work on these issues. Over the past several months, monthly conference calls have featured discussions on accessibility, employment, education, technology, emergency preparedness, transportation, healthcare and the federal budget.
The White House is now offering the opportunity for you to suggest topics you'd like discussed during these calls. Send in your ideas about subjects for discussion, as well as the federal officials you'd like to hear from on these subjects, by visiting https://www.disability.gov/WHQuestion. 

Today's Creative Outlet

Give it a try at http://www.drawingforkids.net/how-to-draw-the-crab-step-by-step-for-kids/

Nine Years of Riley today!

Linking:

Social Parade Follow On Friday, Follow Me and Bloggy Mom's

Visit the Social Parade on Smart and Trendy Moms for lot's of wonderful blogs to check out! 

Hope to see you there.

My plan for a Monday Hop.

Check It Out.

Great ideas for special needs crafts.
http://kidzorg.blogspot.com/2011/07/diy-ideas.html

Tiki Hut Sunday

NEC Horse Show

Naples Equestrian Challenge Horse Show, Friday June 30, 2011.

Ronan receives an award with the help of Nick, also Riley's favorite horse to ride.

NEC staff and volunteers have given the typically developing siblings an amazing opportunity to participate in the program and to understand the importance of the program.

Special Needs Blog Hop

Carnival Ride - Submission to "Butterfly Dreams" Disability Carnival Ride

My subject haunts me.  I cannot get it out of my head and I cannot resolve it.  Possibly it is the reason I blog. 

Do I blog about special needs, yes.  However, my original motivation to blog was not the special needs by itself and the Carnival Ride it put us on.  My motivation to blog was to communicate beyond my little family that special needs does indeed need support beyond the family.  Why must I communicate this?  I share our experiences because our community abandoned us.  Perhaps, I thought in my naivety, I could now help those just outside some other special needs circle to understand this special needs status a little more thoroughly.  Yes, certainly naive.

Maybe I simply do not understand Community. 

I looked it up:

COMMUNITY    com·mu·ni·ty: noun, often attributive \kə-ˈmyü-nə-tē\

1 : a unified body of individuals: as

a : state, commonwealth

 b : the people with common interests living in a particular area; broadly : the area itself <the problems of a large community>

 c : an interacting population of various kinds of individuals (as species) in a common location

d : a group of people with a common characteristic or interest living together within a larger society <a community of retired persons>

 e : a group linked by a common policy

 f : a body of persons or nations having a common history or common social, economic, and political interests <the international community>

 g : a body of persons of common and especially professional interests scattered through a larger society <the academic community>

2 : society at large

3 a : joint ownership or participation <community of goods>

 b : common character : likeness <community of interests>

 c : social activity : fellowship

d : a social state or condition

Pausing from my task, I discovered this video on my facebook page:

http://www.godvine.com/Baby-Squirrel-Gets-Help-from-an-Unlikely-Place-217.html

Did our community intend to abandon us?  No, likely not.Like the squirrel there is a community just beyond reach... watching.  And eventually one or two of the watchers step up and make a difference.

But the day happened.  One day John and I were a couple with friends, careers, extended family, volunteerism, activities involving many more people beyond the two of us.  The next day my healthy pregnancy ended with Riley suffering an in utero Grade IV brain hemorrhage.  No neighbor was available to help me to the hospital as I knew I was in far too much pain to take myself.  I took a taxi.... one very late, lost and English free taxi. John rushed to meet me while no one he worked with was available to pick up the slack and he continued to field emergency pages throughout our own emergency.

Where was our community?

Here we are perhaps 24 or more hours beyond the emergency c-section holding Riley for the very first time.  It took a nurse 45 minutes to arrange all the tubes and wires to make this happen.  I believe this to have been arount 3 am on Aug. 30, 2002.  Santa Monica Hospital NICU.

Our community was myself, John and now a very ill child.

That was our community and today we are four. 

This is the community you trust and rely on.  This is the community that will be there for each other regardless.  We are not completely isolated, we do stretch a little beyond this especially with our mom's around and it changes shape a little.  This however does not change my feelings of abandonment.

Please forgive me reader if you are disturbed by my perception of community.    My experience has brought me to this conviction.  How do I move beyond this limitation and should I?  Am I now capable of being part of a larger community?  Is not this the reason I post this little niche blog?  I am reaching out to a more extensive community, yet I reserve a complete picture.  It is now clear to me that community is a blog subject that I must pursue and I hope that you will understand that this blog is also about the healing process.  This is my attempt to be community for those other special needs families who need it as well.

I invite you to defend, argue or share your thoughts on community with me.  This is my experience and I cannot present it as more than I believe it to be.

It's A Mad World

We are all special.... by Stacie

Please visit Butterfly Dreams to view more submissions on Community.  I do hope they are far more positive than mine.

Let's Get Social Sunday

Let's Get Social Sunday