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
28.8.07
18.8.07
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
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
3.8.07
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
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
1.8.07
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
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
18.7.07
Vacation is in sight!!!
We leave Saturday for a week long excursion to the white sugar beaches of the Florida gulf coast. Respite for a family that desperately needs some fun..... Together. I'm hoping the inconveniences of toting me around are outweighed by the sound of laughter.
While I will say the "blue" period is still surrounding me, it is starting to change to a lighter shade, resembling the peacefulness of the ocean.... I am trying so hard not to be emotional, but the truth is.... This will be the last vacation with me still possessing any reasonable mobility.
It means everything to me, to be able to experience and witness the joy my children will express. This resort is fabulous and pictures will fill the other site!!!
Jocelyn came to me the other night and asked if I were to have tubes (Trach / Vent /Feeding) would I still be able to talk? I simply replied, "yes" in the beginning, but eventually "no". She smiled and said "well, mom, maybe that's not so bad, you do talk a lot!" Then she hugged me and said just kiddin! The kicker came next.... "I don't want you to have tubes and not be able to talk to me, because I know you won't like it. " Tears filled her 7 year old eyes and told me she would take care of me until I die, then she will hold me in her heart forever.
Yep, I cried too!
So with that.... We need a vacation, a fun filled, relaxing, swim suit, sand in your butt, belly busting laughter kind of vacation..
I found a bed. Had to buy it, to the price of a near panic attack. It will arrive around the 2nd week in August. Another much needed device to aide in my comfort.
So, more maybe next week while sitting poolside or maybe not...... smile
B & L
T
While I will say the "blue" period is still surrounding me, it is starting to change to a lighter shade, resembling the peacefulness of the ocean.... I am trying so hard not to be emotional, but the truth is.... This will be the last vacation with me still possessing any reasonable mobility.
It means everything to me, to be able to experience and witness the joy my children will express. This resort is fabulous and pictures will fill the other site!!!
Jocelyn came to me the other night and asked if I were to have tubes (Trach / Vent /Feeding) would I still be able to talk? I simply replied, "yes" in the beginning, but eventually "no". She smiled and said "well, mom, maybe that's not so bad, you do talk a lot!" Then she hugged me and said just kiddin! The kicker came next.... "I don't want you to have tubes and not be able to talk to me, because I know you won't like it. " Tears filled her 7 year old eyes and told me she would take care of me until I die, then she will hold me in her heart forever.
Yep, I cried too!
So with that.... We need a vacation, a fun filled, relaxing, swim suit, sand in your butt, belly busting laughter kind of vacation..
I found a bed. Had to buy it, to the price of a near panic attack. It will arrive around the 2nd week in August. Another much needed device to aide in my comfort.
So, more maybe next week while sitting poolside or maybe not...... smile
B & L
T
8.7.07
Blue
The kids returned to camp yesterday.... Jocelyn to her Science Camp for the week and Jordan back to his beloved summer excursion. Both eager to break ranks from household boredom.
I, in much need of sleep.... My bed has become yet another hurdle to conquer. the short girl syndrome strikes again. I stand using my walker and Jocelyn hoists one leg up so I can edge my way back scooting centimeters at a time. Rodney leaves for work usually before we head off to bed. No beverages consumed hours prior to calling it a night. I can no longer get myself out of the bed easily, so exits to the bathroom are down to extreme necessitites.
So my morning naps are being hindered greatly!!!! Yesterday I tried to sleep in my powerchair. Not a great rest. My back hurts more and I was pretty crabby all day, and finally cried when my neighbor showed up at 8pm, telling me how I inspire her. It was nice to hear, but frankly right now I don't feel inspiring anything but bitterness. I am looking for someone, a company to help. It's all going to be private pay and I'm freaking at the thought of how much this is all going to cost.
I'm looking at adjustable/ hospital beds, hoping Medicare will pay for something, then, where is it going to go.... my life is turning upside down and melting in the middle. Yes, I am feeling more than blue. Rodney is trying, but his emotional capacity is less than what I need right now! He gets to escape this house every day, going to work, running errands or whatever... I'm left, and I feel like I'm left, rarely asked to go anywhere, he's always in a hurry and I'm simply not able to be whisked. A few friends are still trying. More have left. I am getting much to tired to fight alone. My inspiration remains steady with my children. But they are far too young to have the burden of caregiver......
Sorry no uplifting messages of hope today.
T
My sanity level is actually mild to moderate. Scary. Just need sleep.
5.7.07
The Silence Has Been Broken!!!!!
Yes, that means Tana and I have spoken. I had a disturbing dream Saturday night and woke up Sunday, knowing that I needed answers. I emailed her asked the questions and she replied.
Both agreed too much time has been wasted and want to forge ahead. No talking about the issues that lay deep inside our roots. Maybe we never will. She came over yesterday for the 4th bearing peace offerings in the form of baked beans, potato salad, deviled eggs, mac n cheese and a self baked loaf of bread........ Rodney grilled dawgs, burgers and chicken.
We ate, we laughed, we lit fireworks.
Maybe life can be as simple as food. I'm off to the shower, then a nap...........
Sanity will be discussed next time.
T
Both agreed too much time has been wasted and want to forge ahead. No talking about the issues that lay deep inside our roots. Maybe we never will. She came over yesterday for the 4th bearing peace offerings in the form of baked beans, potato salad, deviled eggs, mac n cheese and a self baked loaf of bread........ Rodney grilled dawgs, burgers and chicken.
We ate, we laughed, we lit fireworks.
Maybe life can be as simple as food. I'm off to the shower, then a nap...........
Sanity will be discussed next time.
T
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