LET THE RIDE BEGIN!!!!!

Today marks the beginning of the next phase of my blogging career. This post and the ones to follow will be of every day occurences, the wierdness of life and my journey through it. Rest assured it will be laced with humor, expose detailed thoughts, convictions that I would lay on train tracks for and many questions of why humans do what they do. There are so many topics reeling through my mind, I need to breathe a moment in order to pick the first one..... (ok breathing done) Let's start with one of my favorite issues..... Me.

You see I said "issues". I have many. Who doesn't?? People just pretend they don't. Hide inside the facade of a happy face. Through trial and many errors, I have finally come to terms with myself. I now know, I am where I am supposed to be in the right here and now! Doesn't mean it makes me thrilled that my 50 inch plasma is friggin' on the fritz, but I know everything happens for a reason when it is supposed to happen.

We make and create our own destinies. We are only victims if we "let" others rule our minds.

Be proactive not reactive.

T

A short vent

I started hospice care yesterday. The only change is now the affirmation i have 6 months or less to live has been made. The writing of my will, living will and power of attorney documents has been somewhat uncomfortable. But necessary. Rodney's comfort level has been shattered. The kids remain upbeat and positive as they watch the steady and now rapid decline in their mother. Jocelyn continues to cling to me every chance she gets..... Jordan blurts out how he will miss me when i go to see my mom with the angels.
Regina is holding me together well, so i can continue to apply glue, to hopefully attach enough standards for Jocelyn to reflect on during her lifetime without me. I have made videos, written letters, created scrapbooks, only to realize it is never going to be enough. appreciated, yes. But never enough to feel the voids in my childrens lives. I have no doubt Rodney will do his best and our kids will be well cared for, its just a mommy thing i guess. i hate that i am going to miss the most important dates in their lives.
so today i write just a brief amount, as to vent only as long as i can sit and type.......
there are still better days ahead.
Celebrate and be grateful for the air we breath..
B & L
T

Light flickers in and out

Today is literally the 1st day I have had the energy to write. The events of August completely drained the breath from my life. I no longer possessed the energy to live. I felt my soul sliding to the other side. Then Regina started as my caregiver. She brought hope and light that the end indeed could be postponed. She has taken better care of me than I thought was possible.

My spirits have been lifted my soul renewed.

My children have remained constant and strong. My much too young caregivers, shower me with love and affection every day. Jordan had a brief and rare, extremely saddening break down one evening. I had just been put to bed by my sister and he came bedside, layed his head on my shoulder and sobbed. He simply stated he was sad and disease was bad. My heart broke again. After a few minutes he collected himself, hugged and kissed me but the usual skip in his step was replaced with a sluggish slide. I asked Tana to wrap her arms around him. She said"oh he'll be alright." "We'll go into the living room and watch t.v." Yep, had tears running down my cheeks as usual.
Her maternal instincts have never materialized where my children are concerned. She can take care of a life sucking, money draining pathetic man all day, but blood obviously is too much to handle. She informed me Friday that she would be unable to help us out on the weekends taking care of me. She could come at the most 2 weekends a month, but that was it. Her life is crazy and she needs to take care of her self. Just maybe she really sees now that she is out of control or perhaps just stated that as a means to avoid family obligation. She clearly said she is not a caregiver and watching me go through this is just too much for her to bare. Jocelyn and I talked about this..... Her comment, "Mommy, I'm only 7 and I'm dealing with it." WOW!
That is one powerful little woman. I'm am so blessed.
So again, I have released Tana, by way of Rodney calling her, any responsibility associated with my family. Perhaps, one day when / if she gets her mind right that there will still be a path to my door.
Fall is in the air. a crisp clean breeze is flowing through my house. It's a great day to breath.
B & L
T

Chaos ripped me apart

I'll start by saying.... this family, caring for me and the emotional roller coaster of life is way too much for a single, unexperienced person with a big heart to deal with.
We let Shannon go yesterday. A brief commentary of this past week......
Rodney needed to leave for a family situation on Thursday morning. So Shannon spent her first night here wednesday. She was clearly uncomfortable from the beginning. She got the kids ready for school, and put me back to bed. I let her have her boyfriend over for company. They layed around all day and watched movies and got annoyed when I needed her peppy at 2p for Jocelyn's arrival from school. It just kept getting worse from there. By Friday morning she was overwhelmed and crying. Then she left me alone for 3 1/2 hours until Jocelyn got home. Too much responsibility placed on 7 year old shoulders. My girl took care of her mother as she always does... I love that young woman!
Shannon finally arrived back at 5:30p in time to get Jordan from his school dance. Then she proceeded to invite her mother, 7 year old sister, and 19 year old sister over for mexican night.
I didn't eat for 10 hours. I finally got put to bed at 11pm. Good intentions ended up nearly pushing me to hysteria. Anxiety, stress and plain tiredness engulfed my body and released another weakening. Saturday morning arrived, I left her alone until I could no longer hold my blatter. It was 9am. She huffed and puffed. Realizing my lasor tongue was about to slash the life out of her, I asked her to please leave.
Jocelyn made breakfast. Seriously! This one makes the best scrambled eggs ever!
My emotions finally burst when neighbor Gail came to check on us. I couldn't stop crying. She started the ball rolling of a day, which included friends Stacy and Craig bringing food. Stacy gently washed every inch of me and was happy to do it. Craig hung out with the kids. They rode bikes and played all day. Karen showed up and the cleaning frenzy started. The bathrooms, bedrooms, hardwoods, rugs, dusting and the kitchen all were polished. Tana arrived and did all the laundry. With order restored in my house, calm eased its way into my veins. The wine helped too! I went to bed feeling loved but was angry at Rodneys absense. I felt abandoned.
I know in my heart he is just plain burnt out. Somehow, however, I still think he can save me. He has always saved me from myself and the many other unfortunate events of my life. I have put up such a high bar, that now as he is free falling I am finding little compassion. I must work on this. He is doing the best "He" can do.
With all that, we are hiring a professional....... Her name is Regina, she has worked as a CNA before and has agreed to help this fragile family. She is wrapping up her current job and will be with us shortly. Until then, Tana is sleeping over. Friends are coming to our aide. We are learning that this journey now requires a team. Everything is settling into place.
This morning the weakened me showed up. Tana got me out of bed and followed behind my powerchair to the bathroom. Normally, I could still stand up using the walker to get to the toilet. Not today. My legs crumbled beneath me as I again found myself on the tile floor of my bathroom. She woke up an exhausted Rodney to hoist me from the tile. Lesson learned..... no more attempts with the walker to use the bathroom. Another independance feature of life stolen from my tired body.
So I type this now, letting Rodney sleep, holding back the urge to pee my pants...... Awe life, the struggles and joys.
More soon.
B & L
T

Our Shannon

The last post; before the discounted Health Benefit schpill; ended with The outline to the end.......
By the way, the Health Benefit plan really is fabulous..... just saved a ton on new prescriptions!!!! I signed up as a IBO (Independant Business Owner, under Rodney's name) so yes, I am selling it as well... gotta make some money to pay for "Our Shannon." So send me all your friends who are un-insured, or under-insured....... or anyone who wants a way to make some extra cash. I've already recieved my 1st commission check of $71.00 for signing up 1 person. This is a great company.

First I will start by saying we've employed a wonderful human named Shannon. Her duties, caregiver/nanny/ wife... are absolutely saving my sanity, my humor, my life and have far exceeded any vision I could of hoped for. She has come to the rescue of this very needy family.

We are just over a week in and already order is calmly starting to ease us into yet another transition period.

She is fabulous!!!! Another person brought into my life for a specific reason. Thanking the Divine for this one. I truely needed someone to come in and truely have the desire to do nothing but "help". And boy oh boy has she!

Her given nickname is "Our Shannon." Smile. Jordan calls her his woman......

Some healing has begun in other areas of a friendship that was nearly severed years ago. A much needed sounding board for Rodney is being restored.

My new ergonomically designed adjustable bed arrived, I am finally sleeping without waking to my spine on fire. Much needed relief indeed is entering our lives.....

My 4 month Dr. appt. was Friday........ the short version, it was bad. Really bad. My lung capacity is down to 51%. Shannon took me and I felt so bad for her and Karen who met us there.

For two hours, the docs tried to convince me, now is the time for a feeding tube to be installed ( for lack of a better word). I didn't cry, but my voice cracked with each word I spoke trying to remain strong. I elected along time ago nothing evasive, no tubes, no vents, no trach. They want the tube now because my breathing is so weakened, my survival rate of the surgery to install is still decent. I firmly stated "no." My battle with this disease is going into year 8. I am tired. Plain and simple. Tired. And if I come home w/ tubes projecting from my body, my children will know the end is near and freak. They were here to watch the end of my mothers life...... I just want to go to sleep one night and let nature rule. Of course, it will be a planned night, so that my children will be spending the night somewhere else, enough pills taken to relax a weakened respiratory system to a point they simply stop working. Nothing gross, no gasping, no drama....... just a beautiful peaceful drug induced sleep to help aide my body to relax and let my soul ascend.

My life has been full of love, beauty, humor which resulted in two precious children that I love more than life itself. They are much too young to have to grow up w/o me, but they are also much too young to take on caregiver roles. so it is wrap up time. Get all the people in place to assist Rodney (aka Our Shannon, my friends Stacy and Jennifer and Tana, who will each play vital roles in day to day issues.) My girls Robin and Abbe will be able to share stories of a silly woman with a tainted sense of humor. Arlene will provide the calm reassuring voice, indeed my spirit still lives and that my love surrounds all who touched my life..... Each person who chose to stay in our lives, my endless thanks and gratitude will forever remain a constant.

My goal: my ultimate goal is to make it until June to see Stacy get married. My 2nd goal is to make it until March. I have to give Jocelyn a Princess ballroom limo riding 8th birthday party. I fully anticipate the 2nd goal very achievable! October 29th will be Jordan's 15th birthday and some sort of disco/ club theme party has to happen. The boy wants a dance party, and I will see to it that it happens!!!!!! Smile.

My father is losing his mind and thinks I am going to croak at any minute..... Perhaps if he had not waited a year to visit he wouldn't be so anxious now to come and try to cram all the holidays into one visit. I told him, he needed to come for Thanksgiving or Christmas and the appropriate holiday would be celebrated to the fullest during the actual holiday. If we randomly celebrate a holiday my kids will sense the unusualness of it and fear of the end will consume them. So basically I told him this, then Tana reiterated the same during her conversation with him.

This brings us to today..... I am happy, alive and grateful to have woken up! Blessings to each of you who continue to read and share my journey!
I do feel your positive energy.
B & L
T

Valuable Info on Health Benefits

Hello all.... this is a side step from my usual entries, but thought the info beneficial!
I finally found a company (Ameriplan) that offers unusally high discounted rates on Dentist, Vision, Prescription Drugs and Chiropractor visits at an extremely low price of $19.95 a month for the whole family.
As many of you know, Jordan was deemed medically unneccessary by Medicaid 18 months ago and my search for any type of viable coverage as been a long arduous one. This is not insurance, but a spectacular discount program for anyone who is under insured, uninsured or just need a supplement to existing coverage. It also has a Medical benefit componant if interested.
Please check out the website and refer this to anyone you may know that is interested in saving money on health care.
www.everyonebenefits.com/40535377
Blessings & Light
T

The Return

We left our driveway listening to endless chatter from the kids.... How much fun we were going to have, the pools, the ocean, seashells, dolphins and white sand beaches to fill our days. Five hours of driving brought us to our brand new resort chock full of amenities. Colorfully and cleaverly designed and extremely family friendly.
The kids were in heaven the moment we arrived. I shuttered in horror when the realization how unhandicapped accessible the facilty acutally was. The toilets too low in the condo, shower too narrow to get my wheelchair/ walker in, no wheelchair ramp onto the beach.......
The bed too high, the doorway into the masterbath too narrow for my walker to fit through.
I slept on the couch and every time I needed to use the restroom, Rodney had to assist. Frustration inside the condo walls was as endless as the sand below the balcony. I purposefully didn't eat or drink much to keep the jaunts to the bathroom to a minimum. After two quite painful body slams to the tile floor in the bathroom, I remained in my manual wheelchair except for sitting on the toilet or lying on the couch. Sponge baths from a tired husband was less than thrilling or fulfilling. Dutifully, he washed me, while I closed my eyes and vacated my body.
A new level of weakness has begun its invasion.
The beautiful part in all of this...... My kids had the best time ever!!!!!!
Once the three of us left the confinements of our condo, bliss started. A waterpark, hottub, 3 pools and a lazy river with a Bar and Grill over looking the beach was spectacular. I took them to the pools each day, excpect for Wednesday when we went to a Marine venue. I read a Jackie Collins trash novel and drank a few adult beverages while watching my children enjoy being kids.
No way for me to get into the pools either. Sucked. But, the purpose was for the kids to have one last vacation with me that was stellar!
It was hard and rewarding, my emotions were high and Rodney's inability to deal with my decline kept him isolated from us. He took them down the stairs to the beach twice. They loved it. Jocelyn is planning on making seashell sculptures with her findings.
I did my best to remain calm, and for the most part achieved it. Watching the kids frolick brought me much needed joy. I love them so much and it is with great pain I say this was our last vacation.
Next post ...... The outline to the end.
Blessings & Light
T