Prayers Received and Accepted by Donna Lee

I am not a religious person but have become a true believer.

Every since I got the phone call from my brother, Brad, requesting that I swab my inner cheeks and send the DNA kit back to the Bone Marrow Transplant Center, at Presbyterian Cornell Hospital, I knew my prayers would be received and accepted. I knew I was a perfect match and that I would donate Bone Marrow to my brother, who is one year older than I, 55 years of age.

He has been ill for many years, starting with lymphoma, and now a rare type of leukemia, called Myelogenous.

I received the news, while visiting in Israel, that I am a PERFECT match. I jumped out of my seat and started to dance the hora, thanking God, mother earth, the universe and all my friends who prayed for us. Terry taught me how to read the psalms, Sandy came to temple with me,  Julie accompanied me to the Wailing Wall, in Jerusalem, where I put a note in for Brad and placed my hands on the stone, feeling the vibrations. It was time  to come back to the USA. With a phone call the ticket was changed and I am here. My brother's white and red blood cells and platelets have risen, after receiving many infusions and is home with his family for a few days. I will start to receive "booster" shots, which will turn my super duper bone marrow into even a more enhanced product, leading us to the donation, which takes place next week, which my brother will receive the following day.   

The harvesting begins. My job is a breeze and I will tell you all about it in my next message. My brother has a very long and rough road, but he has many angels walking with him now. thanks EVERYONE.   B'ahava and Nameste.

DONNA LEE

Take Away

The headlines of recent are too much to ignore, so a post must be written:

Md. mom who killed son agonized over school costs

Kensington tragedy blamed on MontCo school system

First, I strongly disagree with the decision made by the mother.  Her son could tell her how he felt; how he loved her; if he was in pain; if he was happy.  I know his pain by his cries.  I know his happiness by his smiles and noises.  She had more of a DIRECT relationship with her child than I will ever have, yet she felt it was not enough.  They referenced debt as a reason she took his life.  I would give everything I own for a moment where Riley could speak to me, or even smile (Riley's Smile) and know it was out of true joy and not a chemical response to all his drugs or even a fart that was funny (but that would be funny).  So in sum, I disagree with the choice she made.

Still, I know my husband and I have been there.  There are moments in time, too many moments where the decision she made would be the easy one.  My husband has prayed for the end of my son's pain, as have I, more than we care to or even can share.

I think in reading the article there are things that we can all take away from it, whether you have a disabled child or not...

1.)The first "what to take away from this"... Don't judge others.  If they are carrying "one pound of weight" or "1000 pounds of weight" everyone is different and over time, it all feels like 100,000,000 pounds.

2.) I saw she was a single mom.  While the article didn't go into her relationship with her parents, the $10,000 check in the mail was extraordinary.  I am blessed to have a mother who, while due to age cannot hold my child, loves him and supports him in MANY ways.   For many, even if support is there, it is not always enough...The second "what to take away from this"...A small act can go a long way...If you know of a parent of a special needs child, whether married or single, you can ask how they (the child or parent are doing)... This is support.  But, remember, don't judge... by society (and family) there is too much judgment in special needs kids and families.  Just ask how are you?  and listen.  Being shunned by part of society, is isolating.  Just listening is often a moment of respite/help.

3.) I had mentioned earlier about how her son could communicate and mine cannot.  I probably portrayed this as selfish.  It wasn't as much that as, honestly, jealously.  Regardless, my "thing to take away"... Appreciate what you have with the one you love, no matter what the occasion.... My husband had a "lost" father (drugs, jail, confused, alcohol, barely saw him as a child).  His dad  too took his life.  Still, after all these years my husband will share many moments he had with his dad.  They were VERY brief moments, during hard times for them both.  Still, good moments.  My third "what to take away from this" is hold on to the moments you have with those you love.

To summarize, she could no longer carry the weight of what she was facing.  She had support but was alone too much, perhaps?  Perhaps no one truly listened.  I/we will never know.  She felt she could not give her son enough.... what parent special needs or otherwise has not felt that way.

I am looking for an end to this post but cannot find one.  I guess my end to this post is that it is not my last.  The Barnhard family found their end.  My "end" will come when either "special needs" ceases to exist or when I can no longer champion the voices of those with special needs or those who care/love them.

We are all special... by Stacie Wiesenbaugh

http://www.thingsicantsay.com

 

School Begins & Bus Driver Roulette

First day of school begins today.

Most parents feel a sense of relief when their children return to the classroom.  As a special needs mom, I have a dread for Riley, my non-verbal, non-ambulatory child being sent out without me to protect him.

I am grateful as well.  The constant watchfulness of the Summer, the long hours feeding, holding him, providing therapy and being trapped indoors because our Florida heat is too much for my child are finally over.  My guard can finally come down for a moment.  I can linger a few moments over my coffee and return to the gym.  Perhaps find a little sanity.

New 1st and 4th graders.

Curiously, my de-stress became John's stress.  He took this picture because it amused him and had every intention of carrying the load into class for Ronan.  The chaos of the morning left staff demanding parents clear away cars as quickly as possible which left Ronan alone in the gymnasium with his pile of goods.  Now, he cannot forgive himself for not seeing the entire production through, especially given the panic on his child's face as he left.

John's wannabe Facebook post:

John wouldn't post this (even though I said he could) out of fear of my not sleeping with him again (married 15 yrs and disabled kid: like that would happen!)... his draft post:  First day of school and apparently after years of rift the Lee County bus sys. learns.... (John: how was the bus today?) (Me: good, in fact the bus driver wouldn't even make eye contact and barely talked to me) (John: So your reputation precedes you and they finally learned).

We are all special... by Stacie Wiesenbaugh

"I looked in Mommy's purse..."

Most places I go, someone comments to me, "I love your purse!"  This always brings me an inward laugh as I thank them for the compliment before moving on.

The evolution of my handbags.

Fashion escapes me.  John has never cared and likely prefers that I not be spending readily on clothing and accessories.  Yet there is one area of this lack of style that did need improvement in his eyes.  Early in our marriage, John announced that I should never again select my own handbag again.  In future either my mother or himself should do that for me. 

Fine with me.  It never mattered anyway as long as it suited my purposes.

When Riley came along and I was spending a great amount of time in hospitals and doctors' offices (yes, even more than now), I carried a tiny wallet sized purse on a long strap.  This was a stylish, I assume, Brighton bag gifted to me by my mom.  It suited me as I never carried much and didn't want anything in my way as I carted Riley around.  It did not even have room for my car keys which dangles from my pocket or the phone shoved in the back of my jeans.

Years later, my mother decided to replace this bag with a dark red leather backpack style handbag.  This bag, goes everywhere.  I sling it over my back or the wheelchair and stuff every necessity and list possible deep into the main pocket.  Occasionally, I will treat the leather.  Somehow, this has become the ultimate mommy purse which swallows up everything.  I do not even remember the designer name though I am certain it is a popular one and well made.

For two months I blamed my husband for the loss of our camera lense cover.  He looked everywhere.   Even admitted (as a good husband should) he had it last.  One day when cleaning out my purse, it was found in the bottom of my purse.... story continues.... Ronan lost his pencil sharpener for over a week (driving us all crazy looking for it).  Jokingly John said to Ronan "Check mommy's purse".  About an hour later Ronan whispers in John's ear "I looked, it wasn't in mommy's purse"

The new school year for Lee County begins this coming Monday.  The organizing and shopping has been complicated.  I do not take Riley out more than necessary, errands are especially avoided for obvious reasons.

Somehow I have managed to gather the majority of the required supplies for Ronan; Riley's list definitely needs work.  Ronan and I surveyed his pile comparing it to his list received from the school.  Some things needed attention and organizing, among these was  "sharpened pencils."  I instructed Ronan to locate his manual red pencil sharpener and sharpen his school pencils.

"Where is the sharpener?" Ronan asked.

This seemed obvious to me, "Check your desk and the pencil box where you keep it."

"It's not there.  I looked everywhere."  I refuse to replace something we already possess.   This was an unsatisfactory answer and over the next several days we searched for the missing bright red sharpener.


All this summer we have also missed a camera lens cover.  For two months I blamed my husband for the loss of our cover.  He looked everywhere.   Even admitted (as a good husband should) he had it last.  One day when cleaning out my purse, it was found in the bottom of my purse.... meanwhile the search for the pencil sharpener continued (driving us all crazy looking for it).  Jokingly John said to Ronan "Check mommy's purse".  About an hour later Ronan whispers in John's ear "I looked, it wasn't in mommy's purse."

So, I have become the massive purse toting mommy.  Who else have I yet to discover through my sons' eyes?

We are all special... by Stacie Wiesenbaugh









 

Neurosurgery Clinic Over for the Year

The Neurosurgery Clinic for Riley for the year is now behind us.  Dr. Storrs found little change.

The VP Shunt is either doing it's job or not functioning.  For now, we wait and should his condition dictate a revision is needed, we will take care of it then.  Now there is a plan I support.  No reason to turture Riley unless necessary.

The clinic took place at All Children's in Fort Myers.  Our PT happily changed Riley's day so we did not need to make the drive two days in a row.  Our OT provided a new hand splint to help Riley open up his left hand more.  All went smoothly, which is not the usual result of any appointment involving a doctor.

My poor 2001 Jeep Cherokee overheated on the way home.  Everything in the car is just a little tired now, but it will have to keep going just like me. The boys and I spent an hour plus in a hot Florida parking lot allowing the engine to cool before we went on home.  I was so pleased to have the appointment result in "see you next year"  that the wait did not bother me.  Riley had the lunch packed earlier and Ronan had a DS to entertain him.  Everything was as well as I could hope it to be for the moment.

Now to plan for the start of school next week.

Anyone of a special needs appointment story to share?

We are all special... by Stacie Wiesenbaugh

Whole Foods Market Wine Tasting & Live Music

Friday, August 5th 2011

1st Friday’s Wine Tasting & Live Music

6-8 pm $10 donation

Join us this month in the Café and Lifestyle Center as we celebrate the Mercato Wine & Concert Series the first Friday of every month. This month we’re featuring over 25 wines from around the world with cheese sampling. This month’s theme is VALUE so all wines featured will be on sale at various levels. Enjoy light snacks from our Health Starts Here Specialist, Julie, as well. Proceeds will benefit Freedom Waters Foundation, providing boating and marine activities for people with disabilities, life threatening illnesses and youth at risk. Payment is accepted online or in the Café upon arrival. www.acteva.com/go/LifestyleCenter

July Posts of Note

There have been a few posts this month which touched the special needs parent in me:

"Dear New Parent" by Kidz is a gentle letter about the journey ahead. 

In The Night.

Special Needs Parents have more than their share of stress.

Justice for Ayn, the nine-year old removed from her home.

The Art of Disability Poetry. 

Outrageous Fortune: If a Tragedy Happens and Nobody Cries Is It Still A Tragedy?

I want my child to be treated as normal and appreciated as special at the same time, sounds a little crazy doesn't it. The extended family for the special needs child, grandparents, aunts, uncles, cousins... will never understand our lives or our minds and don't really want to get in our heads... it's too hard and too close. They have the luxury that they don't really have to understand us.

About the Small Stuff: Playgrounds Make Me Emotional.  Me too.

Also, a seminar in Naples, Florida for Special Needs Planning on Aug. 3rd.

12 Ways to be a better parent.

Discovered programs:

Beach Wheelchairs through SMILEMass. 

Speech development song cd.

"The Music Lab" by More with Music is a fun way to work with instrumental sounds on the computer.

Autism is not us - but I will share anyway:

Autism In Plain English.

Because I enjoyed:

Sarcasm Goddess Awards Show!

Radical Ramblings and Thoughts of a Southern Girl has a gift for shining the light on the world.

Beautiful Whale Shark

Wild Horses

Special Needs community:

Forget-Me-Not Friday is a blog hop with a purpose of spreading the word about special needs children waiting and hoping for a home of their own.

Multiples with Special Needs forum.

Nurturing the Nurturers 

  

Parenting SpecialNeeds: Ask The Nurse? Have a question for “Ask the Nurse”.  Post your questions here or send an email to advice@parentingspecialneeds.o​rg

Parenting SpecialNeeds: Calling all Authors & Publishers! if you have a children's book that teaches about differences and disabilities. We would like to invite your to participate in our Different-Abilities Awareness Initiative. Pls contact us at info@parentignspecialneed.org