Every morning I wake up at 4:00 stiff and hurting. I can either get up or lay there and start pondering why this is happening. This is when Darrin and I talk. When we can say how or what we're feeling. Although I cherish this time, I also realize that I need to process this and in order to process it, I need to express how I'm feeling. So this a.m. I took a stealth approach to getting out of bed so I wouldn't wake Darrin and came into the office to "express myself".
Telling people that your going to die is not an easy thing to do. You don't know how to say it. Nobody knows how they'll respond if someone were to tell them that they were dying. When a person says "I'm sorry", I think me too.
I look at my life and I think of it as perfect. I've found my soul mate. A man that has shown me that there is such a thing as true love. My son is now our son. We have a beautiful baby boy. A home that we were going to raise our family in together. And now, we don't know how long we'll have together.
It's not fair. There is no amount of time that will be enough. I don't want to NOT be here.
Although we know that every person is going to die, knowing how your going to die really bites.
Sunday, September 30, 2007
Friday, September 28, 2007
Friday, September 28, 2007
Chase has his first dance tonight. He's going with his friend Allyssia. They are both wearing I love NY shirts. Hers is pink and his is black. Leave it to Chase to coordinate their outfits :)
Deke and I are adjusting to being together every day. I believe he thinks everyday is a weekend, because I'm home all day. He's such a happy baby. Right now he's doing the "basket shuffle", i.e. walking around pushing a laundry basket. We've tried playing ball, but he doesn't have the patience to go fetch the ball every time I over throw it. He let me know he was done playing by putting the ball back in the toy basket....giggle.
The girls (Savannah and Jilda) are living a large life, by having free range of the house during the day. I never realized that Jilda barks ALL day long. While I go in there at least 15 times in one day and tell her to be quite, Chase comes home from school and within 5 minutes shuts the blinds in the sun room. She quit barking. Once again, I've been shown up by an 11 year old!
Tonight Darrin and I are going to dinner together, while Lacreta (Dilly's mom) watches Deke. Other than that, we haven't got much planned. Although, things change quickly around here, so who knows where we'll end up.
I've been staying busy working on the walk. We have friends and family that are coming into town and plan on having a great time visiting with everyone. An interesting note on the fundraising is that Darrin set up a charity on-line poker tournament, with the proceeds going to ALSA. Not only has there been interest from the players, but they're donating to the team as well. Rock on poker players!!!
Here's the information about the tournament if folks are interested. It's on Fulltiltpocker.com.
Name/Title: Ante up for ALS
Buyin: $5 + $5 (extra to go to "The ALS Association")
Game: Hold'emLimit:
NLPassword: als_ami
Date: Tuesday, October 2, 2007
Time: 20:25
Amount of minimum players expected: 40
I've noticed that my right upper thigh has begun twitching. We're hoping that it's related to the last EMG test and that once my muscles recuperate, the twitch will go away.
Have a wonderful weekend!
Ami
Deke and I are adjusting to being together every day. I believe he thinks everyday is a weekend, because I'm home all day. He's such a happy baby. Right now he's doing the "basket shuffle", i.e. walking around pushing a laundry basket. We've tried playing ball, but he doesn't have the patience to go fetch the ball every time I over throw it. He let me know he was done playing by putting the ball back in the toy basket....giggle.
The girls (Savannah and Jilda) are living a large life, by having free range of the house during the day. I never realized that Jilda barks ALL day long. While I go in there at least 15 times in one day and tell her to be quite, Chase comes home from school and within 5 minutes shuts the blinds in the sun room. She quit barking. Once again, I've been shown up by an 11 year old!
Tonight Darrin and I are going to dinner together, while Lacreta (Dilly's mom) watches Deke. Other than that, we haven't got much planned. Although, things change quickly around here, so who knows where we'll end up.
I've been staying busy working on the walk. We have friends and family that are coming into town and plan on having a great time visiting with everyone. An interesting note on the fundraising is that Darrin set up a charity on-line poker tournament, with the proceeds going to ALSA. Not only has there been interest from the players, but they're donating to the team as well. Rock on poker players!!!
Here's the information about the tournament if folks are interested. It's on Fulltiltpocker.com.
Name/Title: Ante up for ALS
Buyin: $5 + $5 (extra to go to "The ALS Association")
Game: Hold'emLimit:
NLPassword: als_ami
Date: Tuesday, October 2, 2007
Time: 20:25
Amount of minimum players expected: 40
I've noticed that my right upper thigh has begun twitching. We're hoping that it's related to the last EMG test and that once my muscles recuperate, the twitch will go away.
Have a wonderful weekend!
Ami
Tuesday, September 25, 2007
September 25, 2007
Darrin's mom, "Stella", came into town on last Thursday and stayed until Sunday a.m. While the guys got to soak up the Nanny Stella love, they also were able to charm her into cooking Stromboli, chicken and waffles, spaghetti, meat loaf and casseroles. They even saved me left-overs.......mm mm mm mm good!
The purpose of Stella's visit was to help out Darrin while I went to NYC. Darrin had given me the best birthday present ever by sending me and Kelly to NYC, tickets to see Jersey Boys and putting us up in the Crowne Plaza on Time Square.....He's a fabulous man!
Since the diagnosis, I vacillated between deciding to go or staying home. I didn't want to miss a day with the kids or Darrin. Darrin and Kelly kindly, but firmly, let me know that I WAS going. If I didn't, I'd regret it. I have to say, they were right. Getting away from home was exactly what I needed. I was able to enjoy myself and not think about the "what ifs". The hotel was awesome, the play phenomenal (BEST Broadway production I've ever seen!) and the company soothing. We were able to sight-see, by utilizing the double-decker bus. I don't think I could have made it walking around that city for long. Just getting to the bus and play were tough enough. Kelly and I became experts at determining who were New Yorkers, and who were tourists. New Yorkers were skinny from all that walking!
It was during the trip to NYC that I realized that I was going to have to tell MWR that I wouldn't be back. I think I knew this for awhile, but admitting it was hard. Saying it to my boss was even harder. I've worked with these people for 7 1/2 years. I consider them my friends. I enjoyed going to work everyday, loved my job and especially the people that I worked with. Having to say that I won't be able to come back was (and still is) extremely difficult. To say I was emotional was an understatement. I fully intend to see you guys as often as I can. I just have to be able to not be a blubbering idiot when that happens....which may take a few more days :) Please don't stop calling or emailing. I need to hear from you all.
The purpose of Stella's visit was to help out Darrin while I went to NYC. Darrin had given me the best birthday present ever by sending me and Kelly to NYC, tickets to see Jersey Boys and putting us up in the Crowne Plaza on Time Square.....He's a fabulous man!
Since the diagnosis, I vacillated between deciding to go or staying home. I didn't want to miss a day with the kids or Darrin. Darrin and Kelly kindly, but firmly, let me know that I WAS going. If I didn't, I'd regret it. I have to say, they were right. Getting away from home was exactly what I needed. I was able to enjoy myself and not think about the "what ifs". The hotel was awesome, the play phenomenal (BEST Broadway production I've ever seen!) and the company soothing. We were able to sight-see, by utilizing the double-decker bus. I don't think I could have made it walking around that city for long. Just getting to the bus and play were tough enough. Kelly and I became experts at determining who were New Yorkers, and who were tourists. New Yorkers were skinny from all that walking!
It was during the trip to NYC that I realized that I was going to have to tell MWR that I wouldn't be back. I think I knew this for awhile, but admitting it was hard. Saying it to my boss was even harder. I've worked with these people for 7 1/2 years. I consider them my friends. I enjoyed going to work everyday, loved my job and especially the people that I worked with. Having to say that I won't be able to come back was (and still is) extremely difficult. To say I was emotional was an understatement. I fully intend to see you guys as often as I can. I just have to be able to not be a blubbering idiot when that happens....which may take a few more days :) Please don't stop calling or emailing. I need to hear from you all.
Wednesday, September 19, 2007
Specialists Opinion
We saw Dr. Bertolini and Dr. Mitchell today. Their opinion is that I probably have ALS. No one can say "defintively" that I have a disease, that has no finite diagnostic tests. It's a rule-out disorder. They did additional nerve and muscle tests today, all of which lead them to the belief that I do indeed have ALS. They are running a few additional blood tests. I will have the results of those by the time of my next visit, October 10th. Again, they are just confirming that there isn't another disease that I may have, that could indeed be treatable.
They can't tell me what happens next physically, because each patient presents with different symptoms. Time will tell where the next twitch will be. At this point only my extremities are affected. The spine, chest and tongue show no signs of degeneration, which is fabulous news.
So, what can anyone do know? Pray, think positive thoughts and start talking about ALS. If you haven't signed up as a team member for the ALS walk on Oct. 20, please do. Being a team member doesn't mean you have to donate, or even walk. It simply shows that you support the disorder.
They can't tell me what happens next physically, because each patient presents with different symptoms. Time will tell where the next twitch will be. At this point only my extremities are affected. The spine, chest and tongue show no signs of degeneration, which is fabulous news.
So, what can anyone do know? Pray, think positive thoughts and start talking about ALS. If you haven't signed up as a team member for the ALS walk on Oct. 20, please do. Being a team member doesn't mean you have to donate, or even walk. It simply shows that you support the disorder.
Monday, September 17, 2007
Monday's news
We enjoyed our weekend.
Friday night, Chase's friend Daniel spent the night and they stayed up til the wee hours in the a.m. playing video games.
Saturday, Kelly and I went to her daughter-in-laws baby shower, had a pedicure and enjoyed lunch together. The boys hung out until Darrin ran Daniel home. Chase feel asleep in the car, so Darrin sent him off to bed. He slept until 6:30 Sunday a.m. Kelly decided to spend the night and we enjoyed her company. Chase and Deke lapped up the attention.
Sunday, we went to church and the sermon was on hope, healing, etc. Very appropriate and really something I needed to hear right now. Also, another one of those bizarre coincidences in life, Darrin had been walking around the house this weekend singing Amazing Grace (we thought it was funny, cause it was just a song that was stuck in his head and he couldn't get it OUT) . During the service, they ended with the song Amazing Grace. I had what I call a melt-down (crying and snotty nose). Although it was emotionally draining, I felt at peace when we left.
Here's a bit of the bizarre. On the way home from church we drove under an over pass and something fell onto the hood of the car and rolled up and over the windshield. We kept driving and then stopped. At first we thought it was kids throwing dirt of the bridge, but we didn't see any kids and I was realizing it wasn't dirt. So we back up and see a PEGION laying on the ground. I hate pigeons. We just kept wondering what happened. Did he fly into the bridge and then just drop? Was he sleeping and lost his perch? BIZARRE.
I did talk to the specialist's secretary this a.m. She said that she had passed on my paper work to the person that schedule's appointments at the ALS clinic (didn't realize they had one). I explained how I'd really like to be seen this week and she said the doctors are only at the ALS clinic on Wed. She's going to see what she can do. I told her I'll sit there all day Wed. on the off chance that they could work me in. Or go to any other facility any day this week. The waiting is really wearing me down. I've pinned hope on this doctor, even though I've told myself not too.
Well, that's all I know at this point.
Oh, yeah! Thanks to everyone that's contributed so far to the ALS walk! Don't forget to sign up on the team rooster.
xoxo,
Ami
P.S. I did try to upload some pictures on this blog site, but it didn't work out. I'll keep trying.
Friday night, Chase's friend Daniel spent the night and they stayed up til the wee hours in the a.m. playing video games.
Saturday, Kelly and I went to her daughter-in-laws baby shower, had a pedicure and enjoyed lunch together. The boys hung out until Darrin ran Daniel home. Chase feel asleep in the car, so Darrin sent him off to bed. He slept until 6:30 Sunday a.m. Kelly decided to spend the night and we enjoyed her company. Chase and Deke lapped up the attention.
Sunday, we went to church and the sermon was on hope, healing, etc. Very appropriate and really something I needed to hear right now. Also, another one of those bizarre coincidences in life, Darrin had been walking around the house this weekend singing Amazing Grace (we thought it was funny, cause it was just a song that was stuck in his head and he couldn't get it OUT) . During the service, they ended with the song Amazing Grace. I had what I call a melt-down (crying and snotty nose). Although it was emotionally draining, I felt at peace when we left.
Here's a bit of the bizarre. On the way home from church we drove under an over pass and something fell onto the hood of the car and rolled up and over the windshield. We kept driving and then stopped. At first we thought it was kids throwing dirt of the bridge, but we didn't see any kids and I was realizing it wasn't dirt. So we back up and see a PEGION laying on the ground. I hate pigeons. We just kept wondering what happened. Did he fly into the bridge and then just drop? Was he sleeping and lost his perch? BIZARRE.
I did talk to the specialist's secretary this a.m. She said that she had passed on my paper work to the person that schedule's appointments at the ALS clinic (didn't realize they had one). I explained how I'd really like to be seen this week and she said the doctors are only at the ALS clinic on Wed. She's going to see what she can do. I told her I'll sit there all day Wed. on the off chance that they could work me in. Or go to any other facility any day this week. The waiting is really wearing me down. I've pinned hope on this doctor, even though I've told myself not too.
Well, that's all I know at this point.
Oh, yeah! Thanks to everyone that's contributed so far to the ALS walk! Don't forget to sign up on the team rooster.
xoxo,
Ami
P.S. I did try to upload some pictures on this blog site, but it didn't work out. I'll keep trying.
Saturday, September 15, 2007
Hidee hoo!
Hello everyone,
Welcome to my blog-spot. I will be keeping this blog updated with the latest information on myself, as well as, the family.
Friday, Sept 21, myself and Kelly (best friend) are leaving on a jet plane to see NYC. My wonderful husband surprised me with this trip for my 37th birthday. He also has tickets for the play Jersey Boys. We plan to be the typical tourists, catch a play and do some shopping on Canal St.
Stella comes in Thursday and I've explained that she can NOT take Deke back in her suitcase.
Enjoy your weekend!
Love,
Ami
Welcome to my blog-spot. I will be keeping this blog updated with the latest information on myself, as well as, the family.
Friday, Sept 21, myself and Kelly (best friend) are leaving on a jet plane to see NYC. My wonderful husband surprised me with this trip for my 37th birthday. He also has tickets for the play Jersey Boys. We plan to be the typical tourists, catch a play and do some shopping on Canal St.
Stella comes in Thursday and I've explained that she can NOT take Deke back in her suitcase.
Enjoy your weekend!
Love,
Ami
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