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
18.7.07
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
30.6.07
The Days are spent
I have been thinking again..... I know, I know. It can't be good. I think way too much. Guess that's what an over abundance of free time allows or rather forces me to do. I'm in the middle of the 4th and last new book I purchased since my last entry. Reading at least lets me escape into someone else's life for awhile. Mini vacations actually. I mostly read non-fiction, biography's, and memoirs. I like reality, others views on life, personal experiences that give insight to why the writer chose to put words to paper.
My own book is in a perpetual state of editing. Somedays, most days, I feel as though I will never finish. But I keep writing. Hoping one day all the blocked emotions will flow effortlessly into each chapter. I realized today, however, that most of what I want in this memoir is being stated with each new post here, in my blog. The silly stories of growing up which framed me are a huge part of my writing, but there is more now. More feelings and experiences upon which to draw the outline of my character. Such a complicated process to define. I am clearly not a dot to dot, and for some reason I expected my writing process to connect me all together. It has not.
Every time I write, I start at the beginning and re-phrase and arrange; as if I am sitting down to complete the entire work in one evening. Oh, the energy I put into the words that fill this boundless book. So perhaps the very entries found here will someday find there way into this elusive novel.
My sister and I stll have not spoken....... I recieved an email from her friend however. Telling me to forgive, life is short, find peace. Crazy thing is, I am at peace. Yes, I do miss her. She can call me anytime. She must first admit the truths laid out before her and I don't think that is going to happen any tme soon.
My father calls every Saturday at 9am. We engage in weather conversation say I love you and do it again the next weekend. He no longer asks how I am, I no longer volunteer information. I know he hears the short breathes I take. I wonder sometimes, where the Dad I grew up with went? did he totally die that night with my mother? Why can't he be stronger and face reality that he is wasting precious time with me? Their training period will end around December soemtime. Which means, unless I croak he won't be visiting anytime soon. I stopped asking him after the ALS walk last September to visit more often......
Silence, a deafening silence has crept into my life. I spend way too much time alone.
I gave the kids a break from summer camp next week to sleep in and run amuck. We'll see how sane I am next Saturday.
B & L
T
My own book is in a perpetual state of editing. Somedays, most days, I feel as though I will never finish. But I keep writing. Hoping one day all the blocked emotions will flow effortlessly into each chapter. I realized today, however, that most of what I want in this memoir is being stated with each new post here, in my blog. The silly stories of growing up which framed me are a huge part of my writing, but there is more now. More feelings and experiences upon which to draw the outline of my character. Such a complicated process to define. I am clearly not a dot to dot, and for some reason I expected my writing process to connect me all together. It has not.
Every time I write, I start at the beginning and re-phrase and arrange; as if I am sitting down to complete the entire work in one evening. Oh, the energy I put into the words that fill this boundless book. So perhaps the very entries found here will someday find there way into this elusive novel.
My sister and I stll have not spoken....... I recieved an email from her friend however. Telling me to forgive, life is short, find peace. Crazy thing is, I am at peace. Yes, I do miss her. She can call me anytime. She must first admit the truths laid out before her and I don't think that is going to happen any tme soon.
My father calls every Saturday at 9am. We engage in weather conversation say I love you and do it again the next weekend. He no longer asks how I am, I no longer volunteer information. I know he hears the short breathes I take. I wonder sometimes, where the Dad I grew up with went? did he totally die that night with my mother? Why can't he be stronger and face reality that he is wasting precious time with me? Their training period will end around December soemtime. Which means, unless I croak he won't be visiting anytime soon. I stopped asking him after the ALS walk last September to visit more often......
Silence, a deafening silence has crept into my life. I spend way too much time alone.
I gave the kids a break from summer camp next week to sleep in and run amuck. We'll see how sane I am next Saturday.
B & L
T
20.6.07
The sweet tile floor........
Summer camp is an enormous success. No calls from either of my children's daytime escapes, except for Jordan "borrowing" another boys t-shirt. They both seem to be happy and undamaged. This is the first time in 12 years, I have not set up a kid friendly pool in my yard. Or had a waterslide and sprinkler set up to rival that of any waterpark...... Yes, friends this year marks the first time since Jordan was mearly a baby, I have not gone to extreme lengths to make sure hot weather was fully enjoyed.
The sun, my friend and healer, has become somewhat of a distant lover. No longer can I venture out into its warmth unaided to lay beneath the glow. Last summers antics of topless tanning on my back deck are now just memories. In fact, I haven't been on my back deck since.... I can't remember. Which means it has been many. many months. The slight tan lines I have this year are from reading a book in my driveway, in my powerchair, with my legs propped up onto the bumper of my car. Oh what ALS does to a body in a year. This time last year, I was downloading tunes onto my phone so that I could listen to my favorite music (Lenny, of course) while I melted into a chaise lounge on the deck. I got up at my leisure and used my walker to tote all my necessary sunbathing items. Walking was slow, but it was walking. Yes, I crashed and burned, hit the floor but always was able to recover and pull myself back to a standing position. So when spring came this year, it was a heartbreaking separation. I have always loved the sun. It soothed my soul. The warm rays energized my spirit. Sitting in a black vinyl wheelchair has decreased my desire to sit outdoors. It is much too hot. I sweat and stick and get burned by the plastic armrests. The sun is now avoided, unless a childs plea overwhelms me. I sit indoors blankly staring at a the computer, waiting for words to flow into sentences to complete my book, or I read. I read a lot! Want a good book to read.... email me, I'll gladly give you a Title. Seriously.
I buy books from overstock.com... and most everything else I purchase is from an online experience as well.. Read on.
So last week I decided I had enough drama with pulling up pants and shorts after using the restroom. I had a brilliant idea, I will buy dresses. WTF????? Me. Wearing baby doll dresses. Again, the differences a year makes. So I started the shopping frenzy. Visiting one website after another to collect the style and colors I wanted. And about $400 dollars later, ( 15 minutes, civilian time) I had 6 dresses. I postponed the bra and panty purchases for a hopeful visit to Target with my dear friend Jenn.
Last Friday Jenn called said "You still want to go to Target?"" "Hell Yes!" She arrived and we decided food would be a good idea before exploding into the Super Target. Mexican, yes her and I do love our mexican fare. We each had a Crazy Taco and shared a pitcher of margaritas.......
What a wonderful way to spend a friday afternoon. Drinking, eating and conversing with a special friend. We laughed hard drunk belly laughs. I felt alive and forgot for a moment that peeing was going to be insanely difficult. Another bathroom situation with a friend hoisting my ass off a toilet. Beautiful.
But this story gets better. We were on our way out.... heading to purchase bras and big girl panties, laughing and waving to Juan, our server. 'Til the next time. Adios.
We got to Jenn's car and proceeded to get me to a stand. Done. Slight pivot, ready to sit and viola, I did not make it. My legs gave way. My ass didn't reach the seat. Jenn shoved her knee into my stomach, wedged under my ribcage to keep me from hitting the asphalt. Somehow, we managed to keep me in the car. I was holding onto the steering wheel with all the strength I had as she ran around the car to pull my arms and hopefully drag me onto the seat. Didn't happen. I couldn't hang on........ I slid down into the foot compartment. And there I sat in a stunned drunken almost sober stupor until Juan was summoned by Jenn to assist.
Yes, we still went to Target, but the euphoria was clearly blasted. I bought something like 15 pairs of panties in hopes I would like a few..... No bras with potential found.
So this brings me to today.... I am wearing a black baby doll dress that is much too short with a pair of panties that I like. I selected this outfit right before I decided I was a revised edition of Wonder Woman. I felt strong . I knew showering unaided was a risk, but hey aren't all things deserved a risk??? I used my walker, I walked, I manuevered my way into the shower, pleased and independent. Holding the grab rails tightly, the water washed away my worries of an unsuccessful attempt of getting in. But I still had to get out. I told myself I was strong. The walker, just outside the door waiting for me to grasp and steady myself. My right leg stepped out. I held onto the walker, my left leg wouldn't move. I begged it to move. It disobeyed me outright!!!! Once again I hit the beautiful tile floor in my cleaverly designed bathroom.
This time however, my clothes, lotion and my callous remover were all within my reach. So, until Rodney came into the house I sat on the floor taking care of business. It would have been a great time to feel sorry for myself once again, but damn crying just takes too much energy.
And it always leaves me feeling empty and alone.......
Today, i was strong enough to get into the shower solo. Yea for me. So what if I didn't make it out standing up. I got out alive, no blood shed, conscience and unbroken. Success.
With that.... Be well. live fiercely and fully without regrets.
B & L
T
The sun, my friend and healer, has become somewhat of a distant lover. No longer can I venture out into its warmth unaided to lay beneath the glow. Last summers antics of topless tanning on my back deck are now just memories. In fact, I haven't been on my back deck since.... I can't remember. Which means it has been many. many months. The slight tan lines I have this year are from reading a book in my driveway, in my powerchair, with my legs propped up onto the bumper of my car. Oh what ALS does to a body in a year. This time last year, I was downloading tunes onto my phone so that I could listen to my favorite music (Lenny, of course) while I melted into a chaise lounge on the deck. I got up at my leisure and used my walker to tote all my necessary sunbathing items. Walking was slow, but it was walking. Yes, I crashed and burned, hit the floor but always was able to recover and pull myself back to a standing position. So when spring came this year, it was a heartbreaking separation. I have always loved the sun. It soothed my soul. The warm rays energized my spirit. Sitting in a black vinyl wheelchair has decreased my desire to sit outdoors. It is much too hot. I sweat and stick and get burned by the plastic armrests. The sun is now avoided, unless a childs plea overwhelms me. I sit indoors blankly staring at a the computer, waiting for words to flow into sentences to complete my book, or I read. I read a lot! Want a good book to read.... email me, I'll gladly give you a Title. Seriously.
I buy books from overstock.com... and most everything else I purchase is from an online experience as well.. Read on.
So last week I decided I had enough drama with pulling up pants and shorts after using the restroom. I had a brilliant idea, I will buy dresses. WTF????? Me. Wearing baby doll dresses. Again, the differences a year makes. So I started the shopping frenzy. Visiting one website after another to collect the style and colors I wanted. And about $400 dollars later, ( 15 minutes, civilian time) I had 6 dresses. I postponed the bra and panty purchases for a hopeful visit to Target with my dear friend Jenn.
Last Friday Jenn called said "You still want to go to Target?"" "Hell Yes!" She arrived and we decided food would be a good idea before exploding into the Super Target. Mexican, yes her and I do love our mexican fare. We each had a Crazy Taco and shared a pitcher of margaritas.......
What a wonderful way to spend a friday afternoon. Drinking, eating and conversing with a special friend. We laughed hard drunk belly laughs. I felt alive and forgot for a moment that peeing was going to be insanely difficult. Another bathroom situation with a friend hoisting my ass off a toilet. Beautiful.
But this story gets better. We were on our way out.... heading to purchase bras and big girl panties, laughing and waving to Juan, our server. 'Til the next time. Adios.
We got to Jenn's car and proceeded to get me to a stand. Done. Slight pivot, ready to sit and viola, I did not make it. My legs gave way. My ass didn't reach the seat. Jenn shoved her knee into my stomach, wedged under my ribcage to keep me from hitting the asphalt. Somehow, we managed to keep me in the car. I was holding onto the steering wheel with all the strength I had as she ran around the car to pull my arms and hopefully drag me onto the seat. Didn't happen. I couldn't hang on........ I slid down into the foot compartment. And there I sat in a stunned drunken almost sober stupor until Juan was summoned by Jenn to assist.
Yes, we still went to Target, but the euphoria was clearly blasted. I bought something like 15 pairs of panties in hopes I would like a few..... No bras with potential found.
So this brings me to today.... I am wearing a black baby doll dress that is much too short with a pair of panties that I like. I selected this outfit right before I decided I was a revised edition of Wonder Woman. I felt strong . I knew showering unaided was a risk, but hey aren't all things deserved a risk??? I used my walker, I walked, I manuevered my way into the shower, pleased and independent. Holding the grab rails tightly, the water washed away my worries of an unsuccessful attempt of getting in. But I still had to get out. I told myself I was strong. The walker, just outside the door waiting for me to grasp and steady myself. My right leg stepped out. I held onto the walker, my left leg wouldn't move. I begged it to move. It disobeyed me outright!!!! Once again I hit the beautiful tile floor in my cleaverly designed bathroom.
This time however, my clothes, lotion and my callous remover were all within my reach. So, until Rodney came into the house I sat on the floor taking care of business. It would have been a great time to feel sorry for myself once again, but damn crying just takes too much energy.
And it always leaves me feeling empty and alone.......
Today, i was strong enough to get into the shower solo. Yea for me. So what if I didn't make it out standing up. I got out alive, no blood shed, conscience and unbroken. Success.
With that.... Be well. live fiercely and fully without regrets.
B & L
T
12.6.07
I'm squeakkeee clean!
I'll start by explaining the title..... Today was the first time in months I actually used my custom designed tile bench in my custom designed walk in shower. Perhaps the word "custom" should have consulted a handicapped person prior to my envisioning its existence. The door is wide enough for a walker or wheelchair to fit through, only an inch up to step to a gradual sloping tile floor and two rails on opposite sides for optimum balance, I however chose a low bench as I am a short girl. I wanted to sit with my feet firmly planted on the floor. This was my oasis, no swinging of legs in here. Much to my chagrin, this low bench stopped getting used sometime back in March when I went through my weakening and constipation period. Hitting the hard tile floor twice and crawling out of the "walk in" shower hurt too much to attempt sitting a 3rd time. Since, I have lost most of my stomach and lower back muscles which helped facilitate the hoisting of my body from the bench holding firmly to my handrail on the left side.
So for about the last month I have an alternating hygiene schedule. Unless I am extremely funky or feeling strong, showering happens every other day........ I use a lot of sanitary wet wipes. I sort of feel like I'm in junior high doing a half bath. This time however, I'm usually on the toilet in mid change of clothes. Stop laughing or smiling or feeling sorry. I have accepted another limitation and use an obscene amount of hand sanitizer. If only I could figure out what to do about my hair issues....... But today, I smell really, really good. And just for a bonus, my legs and armpits are shaved on the same day. WOW! Oh, yea. This shower experience happened because I finally asked Rodney to help me. Getting my left leg up that 1 inch is "almost" impossible. And today I decided, since I need help anyway, WTF. All or nothing. Some things never change. Smile.
The kids have FINALLY started summer camp. The 2 weeks they were home only confirmed, I was never supposed to be a stay at home MOM! I slept endlessly yesterday. Plus there was no time to write or have an interrupted thought for that matter.
So it's day two of camp and Jordan already decided to not just take, but wear another boys t-shirt home. I got the call from his counsler and was advised indeed the shirt was not a gift, as I suspected. He however is still insisting that Ms. somebody gave it to him.
Jocelyn is going to the Y this year and seems mesmerized with the contents of the play ground, the indoor pool and just this very afternoon had a dance class..... 2 days down. We go on vacation the 21st of July.... Pictures of course will flood my other blog site.
I still haven't spoken to my sister. This is the longest vow of silence to date. I have no idea when or even if at this point what our coming together will bring, probably World War 3. A friend did advise me she just thinks I need to "cool off" before she speaks to me after that hateful email I sent. Too bad it wasn't hateful, only truths that she refuses to acknowledge.
My father and his wife moved back to Montana and started a new job at a retirement facility. Guess any hopes he will be visiting soon are erased by a new employer that most likely doesn't grant vacation time before serving 6 months. Our Saturday morning talks always end the same, no real emotions shared and the casual I love you at the end.
I can't say enough how happy I am today that I smell really great. It felt spectacular to take a shower that wasn't rushed by my legs getting too tired to stand and my arms and hands cramping from holding on so tightly to the hand rails. Yea!
Life is good.
Blessings & Light
T
So for about the last month I have an alternating hygiene schedule. Unless I am extremely funky or feeling strong, showering happens every other day........ I use a lot of sanitary wet wipes. I sort of feel like I'm in junior high doing a half bath. This time however, I'm usually on the toilet in mid change of clothes. Stop laughing or smiling or feeling sorry. I have accepted another limitation and use an obscene amount of hand sanitizer. If only I could figure out what to do about my hair issues....... But today, I smell really, really good. And just for a bonus, my legs and armpits are shaved on the same day. WOW! Oh, yea. This shower experience happened because I finally asked Rodney to help me. Getting my left leg up that 1 inch is "almost" impossible. And today I decided, since I need help anyway, WTF. All or nothing. Some things never change. Smile.
The kids have FINALLY started summer camp. The 2 weeks they were home only confirmed, I was never supposed to be a stay at home MOM! I slept endlessly yesterday. Plus there was no time to write or have an interrupted thought for that matter.
So it's day two of camp and Jordan already decided to not just take, but wear another boys t-shirt home. I got the call from his counsler and was advised indeed the shirt was not a gift, as I suspected. He however is still insisting that Ms. somebody gave it to him.
Jocelyn is going to the Y this year and seems mesmerized with the contents of the play ground, the indoor pool and just this very afternoon had a dance class..... 2 days down. We go on vacation the 21st of July.... Pictures of course will flood my other blog site.
I still haven't spoken to my sister. This is the longest vow of silence to date. I have no idea when or even if at this point what our coming together will bring, probably World War 3. A friend did advise me she just thinks I need to "cool off" before she speaks to me after that hateful email I sent. Too bad it wasn't hateful, only truths that she refuses to acknowledge.
My father and his wife moved back to Montana and started a new job at a retirement facility. Guess any hopes he will be visiting soon are erased by a new employer that most likely doesn't grant vacation time before serving 6 months. Our Saturday morning talks always end the same, no real emotions shared and the casual I love you at the end.
I can't say enough how happy I am today that I smell really great. It felt spectacular to take a shower that wasn't rushed by my legs getting too tired to stand and my arms and hands cramping from holding on so tightly to the hand rails. Yea!
Life is good.
Blessings & Light
T
31.5.07
A Day at the Kidd house......
It never seems to amaze me how crazy and sporadic life can be, although yesterday was a bit extreme.....
Rodney found this car/truck thing... CUV - Lincoln MKX - that he just melted over. It was time to purchase a new driving machine anyway. So last week I went online customized the vehicle to his specifications, had it delivered to the dealership then yesterday a wonderful young man drove it to our doorstep.
Hello, this takes internet shopping to a whole new level. laughing. And I thought buying a plasma t.v. online was huge. I am now officially self proclaimed the internet shopping queen!!!!!
okay that was the huge high to the day..
9pm arrived and Jordan walked into the dining room covered in blood. He was playing with Rico and apparently the dogs claws caught his bottom lip in two places. So instead of yelling or sensing danger, Jordan just kept wiping the blood away with his hands. By the time he came to me, his hands were covered, his face from ear to ear and his clothes....... Yes, people I completely freaked!!!! He looked liked he was in a Friday the 13th movie and Jason won!
It was awful. He has such a high tolerance for pain and the distinction of danger clearly does not represent itself. Rodney took him to the Emergency room and after 4 hours and some antibiotics they were back home. No stitches required, thankfully.
This was the extreme part of our day........
Lets hope for a mellow tomorrow.
B & L
T
Rodney found this car/truck thing... CUV - Lincoln MKX - that he just melted over. It was time to purchase a new driving machine anyway. So last week I went online customized the vehicle to his specifications, had it delivered to the dealership then yesterday a wonderful young man drove it to our doorstep.
Hello, this takes internet shopping to a whole new level. laughing. And I thought buying a plasma t.v. online was huge. I am now officially self proclaimed the internet shopping queen!!!!!
okay that was the huge high to the day..
9pm arrived and Jordan walked into the dining room covered in blood. He was playing with Rico and apparently the dogs claws caught his bottom lip in two places. So instead of yelling or sensing danger, Jordan just kept wiping the blood away with his hands. By the time he came to me, his hands were covered, his face from ear to ear and his clothes....... Yes, people I completely freaked!!!! He looked liked he was in a Friday the 13th movie and Jason won!
It was awful. He has such a high tolerance for pain and the distinction of danger clearly does not represent itself. Rodney took him to the Emergency room and after 4 hours and some antibiotics they were back home. No stitches required, thankfully.
This was the extreme part of our day........
Lets hope for a mellow tomorrow.
B & L
T
Subscribe to:
Posts (Atom)
