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
31.5.07
22.5.07
A thought....
Sunday was absolutely flawless!!! The 1st annual ALS Awareness month picnic. Wow what a long title for a "picnic". lol. Saturday, Samantha took me and the kids to pick up the helium tank and balloons, to Wendy's for a fastfood bribe and then to the grocery to buy provisions for the picnic on Sunday. Shoot, I was tired after all that.
Sunday came and brought us an incredible day. Not too hot, a mild warm breeze, a cloudless sky, good food, great friends, a purpose and a wonderful way to spend a sunny Sunday. The few of us enjoyed each others company and mimosa's..... Mimosa's should be mandatory on Sundays!
Tana was absent from our outing as I have still yet to hear from her. Have heard through the grapevine however, indeed she has deemed me evil once again after a lengthy email I wrote her.
Oh, well. I have just come to a place in my life that settling for less is not an option. Blood or not. Either join me on the road, or the dust from my wheelchair will hit you. Am I too harsh? Maybe. Have I always been? Probably. However, I am done with trying to change. I am who I am. I can only work on me. My tolerance level for slackers is just decreasing.
I do realize that everyone has issues, I'm just to a point where I no longer have the energy to keep stagnate people in my life.
So with that..... Life is good. I am glad to be alive. I am thankful for waking up.
Today I met with my neuro doc at GA Tech to deliver a grant proposal for the development of assistive robots for people living with motor neuron diseases, specifically ALS. WOW!
I need a personal assistant that doesn't talk back!
Yea, I want one.
B & L
T
Sunday came and brought us an incredible day. Not too hot, a mild warm breeze, a cloudless sky, good food, great friends, a purpose and a wonderful way to spend a sunny Sunday. The few of us enjoyed each others company and mimosa's..... Mimosa's should be mandatory on Sundays!
Tana was absent from our outing as I have still yet to hear from her. Have heard through the grapevine however, indeed she has deemed me evil once again after a lengthy email I wrote her.
Oh, well. I have just come to a place in my life that settling for less is not an option. Blood or not. Either join me on the road, or the dust from my wheelchair will hit you. Am I too harsh? Maybe. Have I always been? Probably. However, I am done with trying to change. I am who I am. I can only work on me. My tolerance level for slackers is just decreasing.
I do realize that everyone has issues, I'm just to a point where I no longer have the energy to keep stagnate people in my life.
So with that..... Life is good. I am glad to be alive. I am thankful for waking up.
Today I met with my neuro doc at GA Tech to deliver a grant proposal for the development of assistive robots for people living with motor neuron diseases, specifically ALS. WOW!
I need a personal assistant that doesn't talk back!
Yea, I want one.
B & L
T
11.5.07
Where to start?????
It's been a bit crazy the last few weeks here in my camp..... Summary: One day I went to the ALS clinic to donate more blood and had a painful lunch experience with my sister. Another day Rodney was running late so I drove my scooter down the road to meet Jocelyns bus. The skies opened up and broke my sturdy umbrella around me, then after she got on the scooter and started driving us home; the friggin' scooter died in the middle of the street. Beautiful! Caught in the rain has brought yet another experience for me. We laughed until Rodney rescued us 10 mintues later and pushed me up the street, up the ramp and into the house.... Poor guy got a good workout that day.
I went to a Strategic Planning session for the ALS Board, and was quite pleased with the results.
I hung out with my friend Jenn, we had lunch and got Manicures and Pedicures. We went to my friend Stacy's graduation party and then yesterday just her and I went to Jocelyns award program at school, then to breakfast then to drink a couple of yummy martini's.....
So I have had some great moments. However, the deal breaker is always the same, what to do with a tortured relationship that I have with my sister.
New information has presented itself, same premise, same ill fated choices, only the names of the others involved have changed over a more than 20 year span. I am at a loss. Salvaging just isn't a priority any more. It simply takes too much energy to have her in my life. The pure truth revealed in a photo. What to do????? What do I want to do????
Not sure yet. I am thinking this one out and have advised her it would be a few days before I could calmly speak with her. WoW!! Tami paused for evaluation before declaring war? What's up with that? It's called evolving my friends. I am really trying here to do the right thing and not f**k the situation up more than it is.
I know that the only person I can change is me. But, can I accept those that do not meet my expectations and readily know they never will? Unconditional, non-judgemental love. Who does this? Parents? Siblings? Spouses? Lovers? The jury is out. Not sure when it will come back and my mouth remains shut until I can answer with conviction.
Some who know me are probably bewildered that I have chosen to think instead of slay with words. I certainly have never been labeled as non-confrontational. The magnitude of this situation is life altering. Scary actually.
Stay tuned.
T
I went to a Strategic Planning session for the ALS Board, and was quite pleased with the results.
I hung out with my friend Jenn, we had lunch and got Manicures and Pedicures. We went to my friend Stacy's graduation party and then yesterday just her and I went to Jocelyns award program at school, then to breakfast then to drink a couple of yummy martini's.....
So I have had some great moments. However, the deal breaker is always the same, what to do with a tortured relationship that I have with my sister.
New information has presented itself, same premise, same ill fated choices, only the names of the others involved have changed over a more than 20 year span. I am at a loss. Salvaging just isn't a priority any more. It simply takes too much energy to have her in my life. The pure truth revealed in a photo. What to do????? What do I want to do????
Not sure yet. I am thinking this one out and have advised her it would be a few days before I could calmly speak with her. WoW!! Tami paused for evaluation before declaring war? What's up with that? It's called evolving my friends. I am really trying here to do the right thing and not f**k the situation up more than it is.
I know that the only person I can change is me. But, can I accept those that do not meet my expectations and readily know they never will? Unconditional, non-judgemental love. Who does this? Parents? Siblings? Spouses? Lovers? The jury is out. Not sure when it will come back and my mouth remains shut until I can answer with conviction.
Some who know me are probably bewildered that I have chosen to think instead of slay with words. I certainly have never been labeled as non-confrontational. The magnitude of this situation is life altering. Scary actually.
Stay tuned.
T
25.4.07
A New Friend
Yesterday, I was blessed with the presence of a Freedom Fighter of sorts. A woman who along with her 13 year old son choose to become involved with this disease we call ALS.. She and her son championed their first 5k run to raise awareness and of course cash. Without meeting me, they had a sign with my name on it along the course route.
Yes indeed, I tell you. She brought me t-shirts and my very own sign. We talked like old friends for hours. This one is a good woman!
It is so rare to find a relationship that develops into a lasting friendship, put a terminal illness into the mix and the rarity increases. She brought herself in willingly and puts herself out others unselfishly. I find it amazing that she has befriended so many people living with ALS (PALS) and still continues too. She has lost many short lived friendships in a fraction of time, but I can tell you she is genuine pure love.
Amazing........
So to my new friend, thank you for seeking me out and making a point to know me. I too feel as though we were "just catching up" yesterday.
The universe is better because your in it.
B & L
T
Yes indeed, I tell you. She brought me t-shirts and my very own sign. We talked like old friends for hours. This one is a good woman!
It is so rare to find a relationship that develops into a lasting friendship, put a terminal illness into the mix and the rarity increases. She brought herself in willingly and puts herself out others unselfishly. I find it amazing that she has befriended so many people living with ALS (PALS) and still continues too. She has lost many short lived friendships in a fraction of time, but I can tell you she is genuine pure love.
Amazing........
So to my new friend, thank you for seeking me out and making a point to know me. I too feel as though we were "just catching up" yesterday.
The universe is better because your in it.
B & L
T
10.4.07
My Soul Aches.....
Last night was by far one of the hardest moments of my life to date. My 7 year old, very wize and beautiful daughter clung to me in desparation as she told me she knew I would be dead long before she was ready for me to go. "What am I going to do Mommy?" She cried and cried.......
"I want to die with you, so we don't have to be apart." I tried my best to remain calm as hot tears burned their way down my face. She wiped away my wet cheeks. I rubbed her back until she fell asleep, then quietly when into my bathroom, closed the door and cried an ocean. I called Rodney, he soothed my mind and reassured me he would do everything to ease his children's pain. His voice calm and steady, he reminded me how lucky we are that I have survived this horrible disease this long and my fight is far from over.
I needed to hear that. Lately, I have been feeling very out of sorts.
Our house hunting adventure is being postponed. We have decided that we need to sell our house first. We found the perfect location and community to build exactly what we want and need. So we do some minor repairs and put this home on the market.
With that, we are planning a spectacular summer.
So more soon......
B & L
T
"I want to die with you, so we don't have to be apart." I tried my best to remain calm as hot tears burned their way down my face. She wiped away my wet cheeks. I rubbed her back until she fell asleep, then quietly when into my bathroom, closed the door and cried an ocean. I called Rodney, he soothed my mind and reassured me he would do everything to ease his children's pain. His voice calm and steady, he reminded me how lucky we are that I have survived this horrible disease this long and my fight is far from over.
I needed to hear that. Lately, I have been feeling very out of sorts.
Our house hunting adventure is being postponed. We have decided that we need to sell our house first. We found the perfect location and community to build exactly what we want and need. So we do some minor repairs and put this home on the market.
With that, we are planning a spectacular summer.
So more soon......
B & L
T
3.4.07
Not enough time...
I can't believe it is already April. Thursday the 5th is the 5 year anniversary of my mothers death. Oddly enough, the saddness that has engulfed me in years past has eased. While her loss remains a constant in my heart, I have finally accepted and appreciate what her life meant to me. The last month has been an incredibly difficult period for me. My bodies decline has consumed my thoughts. I let negativity in and it took its toll again. However, with the sun shining brighter and warmer days ahead I am getting some of my energy back.
But denying the inevitable is no longer a luxury I can afford. Time is no longer a friend. I have been writing at a crazy speed the last week to get my book finished. My hands are no longer functioning well and if this book is ever going to get to an editor and hopefully a publisher then I must finish.
I am making plans for a crematorium to handle my last wishes. The purchase of 2 small urns, one for Tana the other for Jocelyn is grossing me out. If Tana gets one, then I know Joce will get crazy if she doesn't get a part of me. After all, she has told me she just wants to wrap my body in holiday paper and keep me forever after I die. When I explained in 7 year old terms, what happens to dead bodies she decided maybe she should just keep my heart in a jar. I said no to that request too. Hopefully a tiny urn with an angel or butterfly on it will suffice.
Sunday, I fell really hard. Came straight down onto my walker. My ribcage got stuck on the seat and because of these darned short legs I couldn't get off. Rodney had to witness this horrific display and ran to my aid as I couldn't breathe and finally was able to push my self off only to hit the hardwood floor. More bruises and a sore stomach that feels like I got punched 42 times.....
House hunting is planned for tomorrow. The renters are still planning on moving here..
There are so many details that need my attention, sometimes its overwhelming. One day at a time.
Enjoy today people. Gaze to the heavens an be greatful your alive, breathing and able to move freely. Love and laugh like you mean it. Stop pretending to be happy and look inside your heart and find what will make you happy then live it.
With Passover upon us..... Rejoice in what God hath made and giveth.
Blessings & Light
T
But denying the inevitable is no longer a luxury I can afford. Time is no longer a friend. I have been writing at a crazy speed the last week to get my book finished. My hands are no longer functioning well and if this book is ever going to get to an editor and hopefully a publisher then I must finish.
I am making plans for a crematorium to handle my last wishes. The purchase of 2 small urns, one for Tana the other for Jocelyn is grossing me out. If Tana gets one, then I know Joce will get crazy if she doesn't get a part of me. After all, she has told me she just wants to wrap my body in holiday paper and keep me forever after I die. When I explained in 7 year old terms, what happens to dead bodies she decided maybe she should just keep my heart in a jar. I said no to that request too. Hopefully a tiny urn with an angel or butterfly on it will suffice.
Sunday, I fell really hard. Came straight down onto my walker. My ribcage got stuck on the seat and because of these darned short legs I couldn't get off. Rodney had to witness this horrific display and ran to my aid as I couldn't breathe and finally was able to push my self off only to hit the hardwood floor. More bruises and a sore stomach that feels like I got punched 42 times.....
House hunting is planned for tomorrow. The renters are still planning on moving here..
There are so many details that need my attention, sometimes its overwhelming. One day at a time.
Enjoy today people. Gaze to the heavens an be greatful your alive, breathing and able to move freely. Love and laugh like you mean it. Stop pretending to be happy and look inside your heart and find what will make you happy then live it.
With Passover upon us..... Rejoice in what God hath made and giveth.
Blessings & Light
T
28.3.07
A New Day
So finally today I feel as though a human still resides within this body. The last few weeks have been filled with a tired mind, body, and soul. So much so, that I haven't even logged on to check emails... Yikes I say!!!! Anyone who knows me, knows this is huge. The constipation issue, brought on; limited food for a week and a continous weakening overall.
The lightheadedness is an insignificant symptom compared too the numbness of my tongue and throat. I told Rodney yesterday, how ironic it would be if my voice was lost. The one who talks the most should lose the ability to speak.
It has been an incredibily hard couple of weeks. My children are at odds with themselves. They want me to get up and be better. Jordan is acting "crazier" in school. He has had such a stellar year, his teacher doesn't know what to do. Out of the blue, he walks into class like another kid. He grieves for me and doesn't know how to vent his feelings to let others understand. I am what you would call a translator.......
I do worry for him when i am no longer here. I hope I get enough things in order for him so he transitions decently.
Joce on the other hand is going to be lost....... She is soooo attached, I really do feel my heart break at the thought of not being here for her. She told me tonight "when I go to college, will you cry"? I said yes. True. Even if its from above. Not much tonight as I have been sitting too long and need to lay down.
More soon.
B & L
T
The lightheadedness is an insignificant symptom compared too the numbness of my tongue and throat. I told Rodney yesterday, how ironic it would be if my voice was lost. The one who talks the most should lose the ability to speak.
It has been an incredibily hard couple of weeks. My children are at odds with themselves. They want me to get up and be better. Jordan is acting "crazier" in school. He has had such a stellar year, his teacher doesn't know what to do. Out of the blue, he walks into class like another kid. He grieves for me and doesn't know how to vent his feelings to let others understand. I am what you would call a translator.......
I do worry for him when i am no longer here. I hope I get enough things in order for him so he transitions decently.
Joce on the other hand is going to be lost....... She is soooo attached, I really do feel my heart break at the thought of not being here for her. She told me tonight "when I go to college, will you cry"? I said yes. True. Even if its from above. Not much tonight as I have been sitting too long and need to lay down.
More soon.
B & L
T
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