The latest on Kaetlyn - by Christine

Below with her blessing, I share a letter from Kaetlyn's mom, Christine.  The letter is beautiful and very personal.  She is living another version of my reality, It makes us "sisters." 

"Stacie, I share this with you because I do believe we are "sisters" as only those of us that share this reality can truly understand what it is to live on the edge with our children on a daily basis. I know our trials our different, but yet in many ways the same... I am always more than happy to share our experiences with others out there who may be experiencing their own challenges so they too may know that they are not alone on this journey through the life of a special needs family. Please feel free to post with my blessing... I will keep in touch and let you know for sure the final plan once we see the orthopedic; at the very least I know we will be moving forward regardless with the hysterectomy. 

Love and Miss you Guys! 

Christine"

You may recall Kaet's story as shared in these posts: 

My Life's Reality

My Fragile Child

Womanhood Hit Her Like a Ton of Bricks

Letter from Christine dated January 16, 2012

Hope this email finds your family well! 

I am writing to let you know the latest on Kaetlyn's "womanhood" issues.

Our continuing saga of womanhood that began last May...it has been a roller coaster ride to say the least as we cannot get her cycles (or should I say lack of)under control. Even using the birth-control pills that have continuous hormone for 3 months, Kaet was and is still getting her period every 2 1/2 to 3 weeks and the days leading to it are horrendous!  - The crying and screaming are enough to make me nuts and nothing seems to help. Once she actually starts we are at least blessed with a few days of relief and happiness. 

Her gynecologist ran in to us in the parking lot of the therapy center back in November to see how things have been for Kaet. It was then that I told her all we have been going through...I wanted to give the pills and her cycles a chance as I know it can take some time to regulate, so I did not call her prior to this to let her know what we have been going through. She calmly let me know that we have other options and to come see her when we had time. I finally made the appointment after getting through her latest orthopedic surgery and recovery. It' hasn't even been a month since Christmas and Kaet has had to "cycles" ! Enough is enough...

We sat down today in her office and went over everything we have been though with the irregular cycles and the fact that we had to change spasticity meds because the ones she was on (and were excellent in controlling her spasticity) had contraindications with the use of birth control pills. We discussed changing to another type of pill, but yet again wouldn't we be in the same boat was my concern; isn't it highly likely that the effectiveness of the pill was possibly inhibited by all the other Meds she is on? This according to the Dr is a valid concern. 

Our next options were surgical: Thermal ablation (burning out the lining of the uterus) with tubal ligation (typing tubes; since we know Kaet will never be having children of her own free will) or hysterectomy (only removing the uterus). We weighed the pros and cons of each carefully and decided that the hysterectomy would be the most definitive as it is possible for the lining of the uterus to grow back after thermal ablation. Please know that I have been researching and contemplating both of these already and I have to say this is a SUPER TOUGH decision to make to have your child go through yet another surgery, but is it fair for her to have to go through the pain and discomfort of a period every 2-3 weeks either?

At this point in time my mind is made up that we will proceed with the hysterectomy and for now, we are taking her off the birth control since it is ineffective anyway, and this way we can get her back on her "good" spasticity meds. I did mention to the Dr that Kaet will most likely be facing another orthopedic surgery later this year to secure the other clavicle, so she suggested and her pediatrician (we saw her today for a physical) did too that we see about coordinating the surgeries so she only has to go through it one time and be all done...that is where I leave off, we will be seeing the ortho at the beginning of Feb for her follow up from the last surgery so I will see at that time if he is willing to do it the same time as the hysterectomy. 

I sure hope and pray this all comes together and works out in the end; I hate having to make these decisions in caring for Kaets needs,  but I don't know what else to do to to get my girl comfortable...It breaks my heart either way; seeing her miserable going through the pains of cycles or going through surgery to prevent them. I feel in my heart this is the best choice and that maybe Kaet can finally stop hurting in the long run. I will keep you posted as to our progresses...

Until then, I hope you and the family stay well ...and I am praying for another LONG stretch for Riley with his seizures! :)

Christine

Dear reader, I hope you understand the challenge faced by Kaetlyn's family in an effort to do the very best they can for Kaetlyn's welfare.  As special needs parents we face dilemma's that we could never have imagined as we prepared to welcome our precious child into the world.  Each child and situation is unique and we do not advocate one decision over another, but must each come to our own conclusions.  We share this so that others on our journey will not be alone and so that those just on the outside may understand a little of our experience.

We are all special... Stacie Wiesenbaugh

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 Donation by Donna Lee

As promised in Prayers Received and Accepted, Donna is sharing the details of harvesting her stem cells for her brother.

On Tuesday, the 16th, 9 am, after giving myself a final shot of Nuepogen, I was hooked up to the machine which draws the blood from my left arm, collects my stem cells, transferring them to a bag, and replaces my blood back to my body (heated) through my right arm.  I expected it to be like giving a blood donation but soon discovered that it was a little more trying then that. 

I was all set up on my lounge chair, legs up, head back, laptop on my knees, books by my side and snacks.

I thought this would be a 6 hour leisurely process, including movies, books and food; my body reacted otherwise.  Because calcium is being drawn from your blood, you start to shiver, shake and tingle.  It was a very strange sensation, which means you need to suck on some tums and be hooked up to calcium. After awhile, that tingling sensation turns into numbness, exhaustion and apathy.  You feel as if your soul has been drained out of you.  As a matter of fact, you feel just plain lousy.  However, when I was told that the bag is filled, the target has been reached and you are being unhooked, I knew I would have done it again.

Throughout the process I held hematite stones in each one of my hands, with the intent of transferring them to my brother's hands on the day of his infusion.  I kept repeating to myself that this is going work, that I am giving good, healthy healing cells to my brother.  At the end of the experience, I broke down in tears of relief: 1) because of the realization of how much the people around me are suffering, and 2) knowing that this bag of gold will soon give my brother new bone marrow, good health and well-being.

Yesterday, the 16th, my sleeping brother received the stem cells. The hematite stones were placed next to his right and left hands. After 2 hours, when the process was done, I removed the stones to put in the sun lit window, which practically burned a whole through my palms. That blew my mind!!!

My brother, Brad, is feeling reasonably well and now it is a matter of keeping him comfortable, in good spirits and positive so that he will absorb the new cells.  Prayer, meditation, laughs and love are the daily requirements.  Taking each day as it comes is another.  I am looking forward to seeing what today brings. Shabbat Shalom, Salam, Peace.

B'ahava

Nameste, 

DONNA LEE

Events:

Disabled Championship, Larchmont, NY September 22-25

Sign up/recruit now for the U.S. Disabled Sailing Championship -Sept. 22-25 at Larchmont Yacht Club, NY . It will be a wonderful regatta and are just waiting for the sailors to register.  There is a novice fleet too, so if you know any rookies, please encourage them.

Linking: 

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

My Fragile Child - Guest post by Christine

Here we go again…

Experiencing yet another night and morning of crying and screaming and thrashing about, I finally decided to take my girl to the ER.  Something was definitely distressing her greatly; nothing was helping: Advil, hydrocodone, diazapam, etc.  I tried everything we had/I could think of to calm her and make her comfortable. 

My less than enthusiastic husband “volunteered” to join me-as usual starting out with the same old same old “every time we plan to go on vacation something happens to her” (we are supposed to be leaving on a family road trip next week) – really dear?  I am stressed enough and do not need you to add to it with your comments.  Please calm down to help us through this chapter of Kaet’s life. 

Pack her backpack, make sure we have the feeding tube extensions (NCH doesn’ t have them- found that out the hard way last trip to the ER), DVD player -an absolute must have, extra clothes, diapers, towels, juice, etc. (all the necessities of leaving the house with our special girl). Change the clothes she is wearing – absolutely soaked with sweat from thrashing about all morning, load the wheelchair in the car, Kaet in her car seat and off we go. 

The ride there was actually uneventful; almost had my doubts that we needed the ER visit, but knew I would regret it if I didn’t make sure she was okay.  We arrived at the ER and thankfully there were only a couple people ahead of us (adults that wouldn’t be going to the peds section) this should be quick, right? Of course not, we waited and Todd wheeled her back and forth through the waiting area while she cried and screamed in her chair. Taking too long he decided to try to carry her around (5ft tall and 80 lbs) until they could get around to her.  I could see his frustrations building. 

Finally, after what seemed like an eternity, we were called upon. 

Staff: “Will she be cooperative for stats?”

 Me: ” No, not really!” 

Staff: “Do you know how much she weighs?” 

Me:  “Approximately 80 pounds.“

Staff: "That won’t work , the Doctor will need an exact weight.  Will she stand for a minute on the scale?"

Me: “No.”

Staff: “Can she sit on the other type of scale?”

Me: “No”

Even so, back to the room to get stats we go – all the while my husband carrying our “little” girl! UGH!

After the adventure of getting her weighed and attempting to get an O2 reading on a screaming child; we finally were taken back to the exam room to see the Doctor, so we thought.  We arranged Kaet on the stretcher as best we could, set up her DVD player and tried to keep her calm.  It was then that I noticed it; what was that strange “ball like” look to her collar bone? – Yep, before the Dr. even walked in, it was obvious, we were dealing with a broken collar bone.
Smiley Face

The Doctor walks in after at least 15 minutes (mind you I said there was no one in Peds at the time). After explaining the events leading to our decision to come to the ER, I pointed out to her what we had seen.  She touched it and said yes, looks like a broken collar bone.  We’ll have to get an x-ray.  By this point Kaet was out of control; I was almost lying on top of her to try to keep her from thrashing about and Todd trying to keep her arm from moving around.  I had to ask the Doctor for something to help relax her; from the options given, my best guess at what would help was Ativan.  Again, we wait as they take their time getting the meds, then wait for it to take effect, NOT!  My girl is a fighter, kept on going screaming, crying and thrashing about.

X-ray came in with a portable machine to make it “easier” – we did our best to keep her as still as we could ; did pretty well… only took two tries to get the x-ray.
Smiley Face

Nurse came back to tell us the Doctor was waiting to see the results and asked if there was something he could do for us. OMG, PLEASE get something to help relax her; obviously the Ativan was doing nothing.  Again we waited and waited and waited…Finally, I asked my husband to take control of Kaet, I was going to see what the heck was going on…

As I approached the nurses’ station, I saw, the Doctor, the nurse and two interns/assistants (not really sure) chatting.  Immediately the nurse responded with “we are waiting for the morphine to come up and the Doctor is just looking at the x-ray.”  The Doctor then stood and came over to explain the nature of the fracture and that she had a call in to Kaet’s orthopedic surgeon to see how he wanted to handle it. 

I went back to the room to help my husband again while we waited for the morphine.  I explained to him that Kaet’s Ortho was not on call this weekend, but his associate and the ER Doctor was waiting to hear back.  As soon as I knew it was the Doctor’s associate, I knew we were just going to be sent home and told to go see the Doctor tomorrow. – BINGO! – ½ hr later the Doctor came in to tell me what I already knew!  During the wait, the nurse did bring the morphine, so Kaet was finally trying to calm down, but having difficulty getting her breathe as she worked herself up too far.  Her lips kept turning blue as she tried to suck air into her nose (she couldn’t get her breathing pattern straight) and kept getting scared and then hold her breath. 

 

Above: Kaet peers over at her mom during horseback riding, Oct. 2010.

Finally the morphine kicked in and they were able to bandage her arm around her torso to help keep her from moving it.  Kaet was OUT!
Smiley Face  And we were on our way home with Rx for morphine in hand to help get us through the night. 

As I sit here writing this, I listen to my girl moaning in discomfort, but finally “relaxed.”  Tomorrow we will head to the Orthopedic and see what the prognosis will be.  I do know however, at Kaet’s last checkup we had already discussed the possibility of this event inevitably occurring (Kaet had bone deformities) and that we would be doing surgery to plate the bone to prevent this from happening again. 

My wish to share is for our special needs kids to be treated just that and not be cared for following  “normal” protocol when being taken to the ER – if we are there, there is ABSOLUTELY something wrong and they should be urgently; especially when they are the ONLY patient in that area at the time. Do not just “avoid” us by putting us in the room in the corner and shut the door. We are there because we need help!!!  - Our kids cannot understand what is happening and cannot be “reasoned” with to remain calm.

It took all had to keep myself strong for my girl; the last thing she needed was mommy breaking down on her too.

"Patient Rights: As a Patient, you have the right to:

• Receive considerate and respectful care.
• Expect reasonable access to and continuity of care...."

By Christine

Holes In His Socks - Guest Post by Sabrina

Happy Independence Day Everyone!

Today I share a story about a special needs brother by Sabrina, a German blogger of the wonderfully creative site, CoffeeRocketFairyTale.  Below I share Sabrina's "Monday Morning Message" posted this morning.

Yesterday I got a call from my brother. 

It was about 10.30 am - a time he usually doesn't call because that's when he is at work. 

When I answered the phone he told me he had just discovered two holes in his socks and now didn't know what to do about it. 

He is 28 years old. 

My brother was born with disabilities, something the doctors called "trisomy 8" - meaning he was born with three copies of the eighth chromosome (instead of two). 

If you see him you wouldn't be able to tell. 

If you speak to him you wouldn't be able to tell. 

But maybe you would notice if you spent more time with him. 

Until October 2010 he lived with my parents. 

We all knew that it was time for him to move out because we realized that he wouldn't make any more progress as long as he stayed at home. 

He relied on mum and dad doing things for him he could have been doing without any help, but you know how things are in "Hotel Mama" as we call it: you get your mum/dad/brother/sister to do it for you. 

But one day he mentioned that he would like to live in his own place one day. 

It took my mother more than a year and countless visits to the authorities before they had found a convenient flat and developed a way that allows my brother to live in his own place but still receive the special care he needs. 

Compared to other people with disabilities I know, there's not much he needs. 

His time management is pretty much non-existent, so he needs someone who tells him to hurry up. 

He can't judge if it's warm outside and he could wear just a shirt to work or if he needs to put on a jacket. 

Also, he needs help with the "official" stuff. Letters from authorities, paying bills... 

And apparently he doesn't know what to do when he finds that there are holes in his socks, either. 

Good job though that he thought about asking someone - I told him to get himself some new socks and not to worry. 

Despite the little problems he sometimes encounters, he thoroughly enjoys living in his own flat which he shares with another man of his age who has similar special needs. 

Both of them knew they wanted to live in such an environment. 

When we all sat together and thought about the possibilities they have, both of them made it very clear that they did not want to live in the sheltered workshop there is for people with disabilities. 

It would have been too much care for them. 

The other options was to live in a flat (just as they are now) but with very little care - only once a week a caretaker would pay a visit to check on them. 

Again - it wouldn't have worked out because that would have been too little care. 

That's the problem we have here in Germany at the moment: you either have too much or too little care! 

So my mother and the other guy's mother got together and thought about the situation - and came up with a system that suits their purpose: my brother and his friend moved into their own flat, but a caretaker would come in twice a day to get them ready for work in the mornings and make sure they get something to eat in the evenings, get their grocery shopping done and get some help with their paperwork. 

Most of the time, this works pretty well. 

But it's still very important for my brother to know that he can call my parents or me if he has a problem. 

Like when he discovers holes in his socks. 

Sabrina

coffeerocketfairytale.wordpress.com

Reconnecting - Guest Post By Donna Lee

This morning we remembered my good friend's husband with a memorial brunch.  His good nature and smile is always in our memories. His 2 sons, Ben and Dor are the images of their dad. It was a pleasure to see the boys and their cousins, who grew up with and my youngest son, Dan. Barak, a cousin, 19 years of age, was present too and his beautiful smile filled the room with joy.

I met Barak when he was 6 months old (if my memory is correct).  He has cerebral palsy, which affected his vision as well.  He was one of our early intervention children at Beit Izzy Shapiro.  I cared for him on land but also had the privilege to teach him to swim, once the pool was built and I joined the hydrotherapy team (aquatherapy). Today he is a young man and has a very busy schedule. As well as attending school, he belongs to many clubs and activities, like extreme sports summer camp, and a teens group that have weekly meetings.

Barak has a new computer which assists him in communicating.  One of his compositions was posted in the newspaper (see photo). Each symbol represents a word, which is automatically printed under the picture. Barak describes his friends from school, tells about his new computer, teachers and the music he especially likes to listen to. 

I am looking forward to visiting him and conversing with him more, with use of his hi-tech computer.  As well as dancing with him and his friends at the beach party.

Shabbat Shalom,

donna lee

My Life's Reality - Guest Post by Christine

I do not know what's come over me! Literally it hit me yesterday smack in the face as I was discussing getting Johnathan enrolled in school. 

My life became a life of sacrificing my own needs/wants for those of others.

I dreamed of teaching (helping kids); being able to give to those who would someday appreciate it. What have I settled for in a job? -  A bunch of “me, me, me” ungrateful women. There is no "reward" in the job I have; I have so much more to offer this world and will never be able to show it.

I dreamed one day I would watch my children grow and share with them all that I was unable to have growing up and the milestones of life. I have the means, but God has chosen for my girl to struggle through this life while I sit and watch my unappreciative sister’s lack of desire to nurture her child and open the world of opportunity to her.  It kills me to think of all Kaet could have achieved in her life if only she was born "whole". Why was she cheated? 

I would love some mother-daughter time, going shopping, to the salon or even a movie together; all impossible as Kaet gets tired and/or overstimulated easily.

Almost 15 and should be getting excited to learn to drive and for the independence of getting a driver's license. Kaet will always be dependent on others to get her where she needs to go, yet never be able to tell anyone :(

Why was she cheated all life has to offer? – Yes, I know “it is God’s plan and we are not to question, just accept”.  I try to always keep this in mind and pray to him for understanding. 

In the end she is my rock. When I am down I run to her and hold her in my arms and thank God I have her in my life. If she gives me this peace, then why do I hurt so? 

Being the mom of a special child sure does have its own reward, but it also wears you down when you feel so trapped and secluded from the rest of the world because of the limitations placed on them. 

Yes, I know that some say our special needs children are only trapped by their limitations if we let them be; easier said than done. All the work that it takes just to get to and from the necessary doctor/therapy appointments with these children is exhausting; then add in the full time job on top of it; I just don’t have that much left in me. 

We are not alone in this journey... It is okay to feel.  Christine

Note from Stacie:
Christine's words hit me hard... every word rings true for me and reading her words brought the tears back to me.  Unfortunately, no one really wants to know including our families and we must keep it to ourselves as best we can.  It is also quite difficult to function while we carry all this grief.  She reminds me why I attempt this little niche blog... there really are other parents out there feeling just like we do and doing everything to offer their child the happiest life possible.  We can support each other through the miracle of the internet.

"Accepting a bit of Insanity"  on KatsCafe.org also explores the depression special needs parents face.

http://30daysofautism.wordpress.com/2011/05/13/let-the-tears-come-dealing-with-grief-and-letting-go/ shares the difficult decisions made by a mom of a child with autism.

Here is another post regarding disability and grief... http://www.differentdream.com/2011/06/how-to-cope-handling-constant-subtle-grief/ 

Shalom from the Holy Land - by Donna Lee

Shalom from the holy land. It is so good to be home, to feel the Mediterranean sun and winds on my skin, to smell the orange blossoms as I ride my bike through the orchards and fields. To hear everyone greet each other with "shalom" and/or "Chag Sameach" (happy holiday) on Shevuot, the day the 10 commandments were handed to Moses on Mount Sinai. And to dodge the cars of the  craziest drivers in the world (that is why I choose the unpaven paths!!!).

"FRIENDS! In this park we are friends, all of us - we meet, play and are friendly!"

But most of all, it fills my heart to see how this small country has such a GREAT awareness to children and adults with disabilities. Today I had the pleasure of revisiting one of the nicest parks I know of, in Ra'anana, which caters to children with special needs. 

 "This park has been made especially for our children with special needs.

Please give them the right of way, allowing them to be first."

The unique school I use to work for, Beit Issie Shapiro built a play area, in this park, with much thought and planning so that children with any type of challenge can enjoy the outdoor activities. It is also encouraged, in the many adorable signs, for ALL children to play together, follow the safety rules and to help those who are in "designer " motorized or manual wheelchairs.

 "It's fun to play together, all we need is to follow the rules."

As I explored and experienced the different apparatuses with my grandson, I thought of my friend Riley and how I would place him in or on the various swings and carousels. And how Ronan would have a BLAST with us.

 Wheelchair Carousel

The park was full of young adults riding specialized bicycles with their counselors running beside them.  Sorry, my batteries ran out, no photos (I will return and make sure to get some). They are 3-wheelers with special handle bars and velcro straps to keep the feet on the peddles. The smiles on the riders' faces were from ear to ear.  And bicycles built for two, where the riders on the back are blind. I said to myself, "why can't we have a place like this in South West Florida?!?!?!?" The wheels in my mind are turning............

Sure, this is a tiny, stress-full, crowded country, with hot tempered and emotional citizens, but the awareness of the needs of others is amazing. It makes me very proud to be part of it.

One of the many ingenious swings.

B'ahava

Nameste, 

DONNA LEE

Tuesday Night at Fred's - Guest Post by Donna Lee

Tuesday night at Fred's is the place to be.  The one and only Omar donates his time and talent, entertains us and keeps us dancing all night long. The kids adore him and wait from week to week to come to his show.

Tony, the owner and head chef, graciously opens his heart and establishment to the FFDD (Floridians for the Future of the Developmentally Disabled) members and guests, making sure all our whims and fancies are met.

I have grown to love these "kids."  I say kids because I truly feel they are my own kids. They are young adults, with full lives, activities and jobs, just like my own children.  I look forward to seeing them, chatting with them and hearing what occurred that week, how their work and lives are going. I have never enjoyed dance partners more than with these fantastic lovers of movement and song.  Ron knows every lyric of each song. Mark entertains us with his beautiful voice.  Erica dances in her wheelchair and teaches me sign  language in between sets.  Every one is an intricate part and personality, making this group very special and unique. 

Jen, who took these great photos, is our phone tec. She owns and drives her own car and  is an expert when it comes to working an Iphone.  Gloria and her husband supervise and chauffeur . Maureen is a usual, like me.  Paul is our head bar tender and comic. His smile and attitude is purely love. He makes us giggle and smile with his jokes and adorable comments, making each and everyone of us feel even more welcome .

The high point of the evening is desert with Ralph. This has become a tradition for he and I.   It is well worth the calories and is usually a contest who can eat fastest, before one finishes the others' portion. This night Paul made us a Strawberry Chocolate Ice Cream special. I could taste the whole hearted attention Paul put into it. Thanks Paul.

Fred's is one of the only dog friendly establishments in Naples. Om and I visit it, as so do many local dog lovers. 

In other words, Fred's is the hot spot of Naples. It's a special kind of place, with special owners and employees, that I have grown to appreciate and I thank you ALL. I invite one and all to come and experience a Tuesday night at Freds. 

B'ahava Nameste, 

DONNA LEE

Memorial Day Weekend Shanti Om - Guest Post by Donna Lee

Memorial day weekend, an extra long one with free time, allowing me to come over to visit my buddy Riley and family. Om recognized that we were entering Riley's community and when we reached his street, Om was half way out the window,anticipating seeing his friends.

Mom and dad informed me that Riley isn't exactly up to par, or as we say in yiddish, kvetchy. He and i found our spot on the floor and started to communicate by touch, facial expressions and sounds. What always amazes me with Riley, is how vocal he becomes while I am massaging him, and especially when we are done, feeling the results when i place his calm body back on the rug, cushioned by pillows, His lungs/diaphragm/voice open up, allowing him to vocalize much more. Today he said "om", really!!! 

Om sat beside us the entire treatment, licking Riley as often as he could. Riley grabbed Om's leg and tail, not

a flinch out of Om, just peace and quiet.. . 

Today I used the Arbonne Seasource 5-in-1 essential oil. WOWOWOW. All of the senses were stimulated by the amazing aromas,resulting in the looser muscles and relief. There is a looooooooooong list of oils in this mixture, but the most dominant are my favorites, lavender(calming), pepperment (great for the breathing and tummy), citrus. The base is made of sunflower seed oil, safflower, jojoba, hazzel and canola. So, you can imagine the effect it had on both our senses, leaving us both very "shanti om".

That inner peace didn't last too long after hearing Ronan take a dive into the pool, resulting in an explosive belly flop,and a few tears. Stacie, Riley and I sat at poolside enjoying each others company, a few moments of friendship and bliss. 

My hopes are that Riley will get over his kvetchy'ness, that he and  his family will have an enjoyable weekend. 

My heart goes out to anyone who lost a family member serving his/her country. My thanks goes out to anyone who serves to protect us. That is what this weekend is all about.

Shukaryia, toda, thanks

B'ahavaNameste, 

DONNA LEE

Womanhood hit her like a ton of bricks!!! Guest Post by Christine

Our friends, Christine and Kaetlyn, have been missing from riding lessons the past couple of weeks.  I received this update from Christine this morning with permission to share all she has been going through lately.  Kaetlyn has similar disabilities to Riley, as you have gatherered already she now has some added issues to deal with lately.  I greatly appreciate Christine's willingness to share their past couple of weeks.  Stacie

It has been a crazy month...(some of the days/times run together in my mind, but I'll do my best to explain). Kaetlyn's journey into womanhood...

After Kaet got over the pneumonia, she was having difficulties that I could not figure out, so out of deductive reasoning, I decided to take her to the Gynecologist. (behavior seemed a bit cyclic) The Doctor did an ultra sound to be sure there was nothing obvious wrong that could be preventing her from getting her period as developmentally all indicated she should have or should start any time. All turned out "normal," but we decided to start her on birth control to help with the hormones....

About one week later we were AGAIN at a loss of the extreme "behaviors" we were seeing. This time I took her to her pediatrician. She did a standard exam and could see nothing that could be distressing her :(  By this time, I was at my whits end...I all but begged her to start from head to toe and give her any and every test imaginable. I think she understood my desperation at that point. She agreed to start with blood labs, and urinanalysis and strangely decided to do a STREP test. We started with the STREP test and while it was "processing" drew the blood work...before we started the catheterization to get her urine, the Doctor decided to review the STREP results and would you believe it....POSITIVE for STREP! Thank God we got that result BEFORE doing the catheterization! Rx for antibiotics and a few days rest we were on our way! ...

2 days later I get a call from the teacher that Kaet had a GREAT day :), but my "little girl" had become a "little woman" YEP, the birth control/hormones had apparently given her the "push" to start her period. That wasn't too bad that weekend we took it easy and stayed close to home since I had no clue what to expect....then came Monday. 

I sent her off to school; (she did well all weekend) I had no reason to believe it would be anything but a good day. Boy was I wrong. The phone calls from the teacher began almost immediately upon her arrival to school. Kaet was very distressed/unhappy. We kept in contact for most of the day and the teacher tried everything she could to make her comfortable. The teacher did not call much in the afternoon, so I thought things got better. When I picked her up at dismissal to take her to equestrian, I could see that things were still not good. I cancelled therapy and took her home hoping to get her comfortable in her own space....the night was HORRIBLE! Kaet cried and screamed no matter what I did. I even giving her pain meds and all her regular PM meds did not help relax her! :( It was like something was inside her nagging and irritating her...

The next day I kept her home and called the pediatrician yet again; begging her to help me. She thought for a bit and decided she was going to call Kaet's gynecologist and discuss the situation. No more than 10 minutes later the pediatrian called me back and said the Gynecologist would like to see her ASAP for another ultra sound. I got Kaet loaded into the car and drove straight there. By this time Kaet was a lot calmer than the day/night prior, but I still wanted to do all I could to get to the bottom of all this. The ultra sound tech did the scan and took a few shots of some areas and then sent us to wait for the Doctor to see the results...before the Doctor even walked into the room I could hear her outside the door saying, "I would be in pain if I had that!" - apparently she was speaking to an intern. She came into the room and explained to me that Kaet had "free fluid" in her pelvis (could be the result of a ruptured ovarian cyst). This could take a few weeks for the body to absorb the fluid and during that time Kaet could still be in a lot of discomfort! 

OMG! ...there was no way I could go through a couple weeks of what I experienced the day prior!!!! 

Kaetlyn above with her mom, Christine, graduates 8th grade last week.

She told me she was going to call the pediatrician and discuss the results to see what she thought (apparently there is a surgical procedure to remove the fluid if we felt we needed to). After talking to the pediatrician, they decided to send her for a CT scan to see if there was anything else they could not see happening. (apparently free fluid can also be indicative of appendicitis). 

Off to the ER we went. Kaet at this point seemed to be getting better and I even debated in my mind whether it was worth all this while we were waiting, but since I wanted answers and Kaet can't talk to me I felt it best to go on...

We started yet again with the blood test and urine test (what an "adventure" it was to get her cathed for the urine!). Then we needed to give her some contrast to drink in preparation for the CT scan. Now, of course we know that Kaet aspirates when she drinks, so we couldn't give it to her that way. feeding tube time! (NOT) I didn't have the adapter for the button to give her the liquid. The hospital had them, but of course not for Kaetlyn's :( I had to call my husband and have him drive to the hospital with it; more waiting! Once we got it and the test done, it was near 8pm (long day). The test concluded the same as the ultrasound and "surprise" lots of fecal matter too. 

Now that is all over with, things are calming down around here, but poor Kaet! Womanhood hit her like a ton of bricks!!! 

Christine

Wednesday at NEC - by Donna Lee

After receiving a call for help, "Leaders needed on Wednesday afternoons", of course I replied positively.

No volunteers, the kids don't ride. Its as simple as that.

It's a very tiring work afternoon, no rest, even a potty break is quickly taken and back to the ring. The riders are mostly independent and it is a pleasure to watch them tack the horses and ride with ease, some with no side walkers.

I prefer side walking because of the interaction with the riders. It is such a pleasure to be able to 

converse, laugh, joke, and listen to their hearts and words of wisdom. as a leader, you concentrate on controlling the horse. Well, it is very difficult for me to keep my big mouth shut and find myself chatting, laughing andgetting teased by the riders, especially when Ted nips at my arm, sending Vanessa into rolling

laughter. My motto is, "if I make you laugh, I am happy". Fortunately (and unfortunately) we are so understaffed on Wednesday afternoons that I am not "busted" for conversing with the participants.  

I leave the ranch exhausted but my soul is light and totally bursting with pride from all the great riders, the commaradity of the volunteers who always seem to pull it off, no matter how understaffed we are. Watching sara, our scholarship girl from the Derby Fund Raiser, tacking Dotty totally solo, watching John, our Special Olympic's champ,  prepare Ted for his lesson and our leader, Debbie, and her calmness preparing Buddy, knowing that we will manage and all the riders will have a great afternoon. 

Wishing everybody a great weekend,

B'ahava

Nameste, 

DONNA LEE

May we serve our disadvantaged brothers and sisters in their need as well as they serve us

My niece, Stacie, has asked to share some of my experiences in regard to mentally and physically disadvantaged persons.  My experience is not particularly large and certainly Riley, Stacie’s oldest child, is the most physically disadvantaged person with whom I’ve had any extended relationship.

What have the mentally and physically disadvantaged persons I’ve known taught me?  First, two disadvantaged persons I knew in my boyhood years: Peggy C. and Roddie S.  Peggy was an older sister of a grade-school classmate, David.  When I visited David, Peggy was there.  She did not talk much; she was just there.  I saw how this large family accepted and cared for her.  I thought about who would care for her when her mother and father were no longer able to do so.  Peggy was there; and I could not escape her.  I had to learn to relate to her.  And this to my mind was a basic, necessary learning experience for me.

Roddie lived on the same block that many of my grade/school friends lived and played.  Oftentimes we would play touch football on the street of this block.  And sometimes Roddie would emerge from his house and want to play with us.  I learned to respect Roddie from my friends as they sometimes (not always!) found a way to incorporate Roddie in our play.  And I can remember how thankful Roddie’s mother was when she appeared at their door to welcome a very excited Roddie back into their house.

Mrs. Betty M. lived just three houses away from our home during my grade school years, but by the time I was in high school, as I understood the situation, she lived most of the time in a mental institution or home.  Her husband, Jack, had to raise their son, Richard, who was about 4 years younger than I effectively by himself, for Betty was allowed to return home for only a-few- days stints several times a year.  I remember how quiet and frail Betty was, but was particularly struck by the devotion and faithfulness of her husband, Jack.

Peter is a fellow member of my religious congregation, The Society of Jesus or Jesuits.  Peter is an outstandingly talented person; the kind of person who gives the impression that nothing was beyond his talents and energy to master.  Yet, one day during that one  year that we lived in the same community his mentally disadvantaged brother appeared.  Then, I saw Peter’s great love and respect for his brother, but also his deep confusion over whether he should support his brother in his desire to marry. 

Below, Uncle Bob presides over my niece Jasmine's baptism.

Disadvantaged people bring us back to recognizing and living our humanity, and this is a lesson, a teaching, that we all must learn.  May we serve our  disadvantaged brothers and sisters in their need as well as they serve us.

Uncle Bob with niece Jasmine and nephews Hayden and Ronan, Hudson, NH, May 7th, 2011.  Taken by Aunt Julie after Hayden's First Communion.

Thank you for sharing today Uncle Bob!

Sacred Heart Church, Richmond, VA
Raleigh Diocese
2009 Jubilarians
NC Catholics