If you've been paying attention, you've noticed that I have started posting on Tony's blog. I'm not sure it's a good idea, but I'm giving it a try. Mainly, because I know it helped him... and maybe it can also help me. He set out to tell his story, and that's not over yet... he'll just have to put up with my side of it!
His shoes are big ones to fill... and I know I'll never do that. I'm sure a lot of his readers won't be interested in my posts, but I have also realized that's okay. That's not what it's about, after all. I also know I'm not the writer that he was (even writing that "was" is hard), but I've certainly written enough in my life to be decent. Practice makes decent, in my case.
As I've mentioned before, at least for the time being, I am writing to Tony. It feels good to get my thoughts for him down in some concrete form.
If you are one of Tony's readers... thanks for sticking around. Please feel free to let me know how I am doing... good or bad!
Friday, March 27, 2015
Friday, March 20, 2015
One month gone...
Things are both different and the same.
I've started a teeny fraction of the things I need to do in the wake of your departure. It seems to be a lot of paperwork. I did discover that I can no longer pull your credit report... do you think that means you'll quit getting credit card offers in the mail? Let's hope so.
Spring has sprung, and today makes it official. We've planted the spring garden, and it's weird to think I won't be able to rush in and tell you when the first shoots come up.
In a way, I've been preparing for this for the past 3 years. You gradually were unable to do yard work, give me a hug, help in the kitchen, help with the girls... and in the last few months, you were even turning over your computer work to me.
But I told you this before, and (so far) I've been right. The single biggest thing I miss is simply talking to you. Telling you about my day, about the girls, about the cool thing I read. When you were feeling low, and said you had no purpose, I said that you were wrong... that the best part of my day was sharing it with you. I know that was no substitute for your life before ALS, but it still meant the world to me.
So, babe, today I straightened up the house, and did some paperwork. Then Louise and I went to town, and had lunch at the Palms with Daddy. I had the fish tacos, which were pretty good, but I don't know if I'd get them again. Then we went to Kroger, where Louise threw a fit because I wouldn't let her get candy. So I was the mom with the screaming child that everyone was staring at, fun times. Cora had a good day at school, and said she did some activity involving rectangles in gym... that narrows it down. It has been rainy and dreary, so we are watching Beauty and the Beast now. Steak and roast potatoes for dinner! I know you would enjoy that!
I love you, babe. And I miss you.
I've started a teeny fraction of the things I need to do in the wake of your departure. It seems to be a lot of paperwork. I did discover that I can no longer pull your credit report... do you think that means you'll quit getting credit card offers in the mail? Let's hope so.
Spring has sprung, and today makes it official. We've planted the spring garden, and it's weird to think I won't be able to rush in and tell you when the first shoots come up.
In a way, I've been preparing for this for the past 3 years. You gradually were unable to do yard work, give me a hug, help in the kitchen, help with the girls... and in the last few months, you were even turning over your computer work to me.
But I told you this before, and (so far) I've been right. The single biggest thing I miss is simply talking to you. Telling you about my day, about the girls, about the cool thing I read. When you were feeling low, and said you had no purpose, I said that you were wrong... that the best part of my day was sharing it with you. I know that was no substitute for your life before ALS, but it still meant the world to me.
So, babe, today I straightened up the house, and did some paperwork. Then Louise and I went to town, and had lunch at the Palms with Daddy. I had the fish tacos, which were pretty good, but I don't know if I'd get them again. Then we went to Kroger, where Louise threw a fit because I wouldn't let her get candy. So I was the mom with the screaming child that everyone was staring at, fun times. Cora had a good day at school, and said she did some activity involving rectangles in gym... that narrows it down. It has been rainy and dreary, so we are watching Beauty and the Beast now. Steak and roast potatoes for dinner! I know you would enjoy that!
I love you, babe. And I miss you.
Monday, March 16, 2015
First Days
The first day was a whirlwind. In the minutes after you died, I just felt relief. I was glad you were at peace, and that the long (and sometimes quite difficult) road was over. I wanted to be there for you through it all, and I am so glad I could be.
But then the craziness started. Call people. Call Hospice. Make a cup of tea. Check on you. Hug people who were coming in. Answer questions. Try to eat some breakfast. By the end of the day, I had had a brief nap, and been to the funeral home. Family and friends were around for dinner, and Renata even spent the night.
I have to admit that I missed the moment the girls discovered you were gone. Someone had whisked me away for a nap. I had told Cora a few days before that you were going to die. We talked it through, and we both cried. They were gone the last night you were with us, and didn't get home until several hours after you died. I absolutely think it was for the best. But that night at bedtime, when they would have usually run out to kiss you goodnight, it hit Cora that you weren't here. She burst into tears, and jumped into Ghin-Ghin's arms. We told her to remember how much you love her, that you'll always be in our hearts, and that you are watching us from heaven. It was heart-breaking though.
Snow was falling when we woke up the next morning. Renata left fairly early, and we had a few brave visitors that morning, but the snow kept falling and it was just me and the girls here all day. That day was a gift from the cosmos (or maybe you?). Instead of more whirlwind, we just had time with each other. I think we watched a lot of movies, and had a lot of cuddles.
The third day was Cora's 7th birthday. We had planned a family party for that weekend, but it ended up just being mostly local family because of the week's events. When the girls got up, they got into bed with me and I told them the story of the day she was born. We even looked at some old pictures. She requested breakfast in bed, and Louise (of course) had to join her. We had a great party, with lots of wonderful people, delicious cake, and pink presents. We even had 6 soccer boys. They came, gave me humongous hugs, bought Cora lots of presents... and then let the girls beat up on them for the rest of the party. They are such good guys, babe, and so patient and kind with the girls. A certain taciturn Englishman told me that they are following in your example... but I think he deserves a little credit too.
It seemed like Cora had a good day. It was a good day. Of course, it was really hard to do it all without you, but it was a good day.
But then the craziness started. Call people. Call Hospice. Make a cup of tea. Check on you. Hug people who were coming in. Answer questions. Try to eat some breakfast. By the end of the day, I had had a brief nap, and been to the funeral home. Family and friends were around for dinner, and Renata even spent the night.
I have to admit that I missed the moment the girls discovered you were gone. Someone had whisked me away for a nap. I had told Cora a few days before that you were going to die. We talked it through, and we both cried. They were gone the last night you were with us, and didn't get home until several hours after you died. I absolutely think it was for the best. But that night at bedtime, when they would have usually run out to kiss you goodnight, it hit Cora that you weren't here. She burst into tears, and jumped into Ghin-Ghin's arms. We told her to remember how much you love her, that you'll always be in our hearts, and that you are watching us from heaven. It was heart-breaking though.
Snow was falling when we woke up the next morning. Renata left fairly early, and we had a few brave visitors that morning, but the snow kept falling and it was just me and the girls here all day. That day was a gift from the cosmos (or maybe you?). Instead of more whirlwind, we just had time with each other. I think we watched a lot of movies, and had a lot of cuddles.
The third day was Cora's 7th birthday. We had planned a family party for that weekend, but it ended up just being mostly local family because of the week's events. When the girls got up, they got into bed with me and I told them the story of the day she was born. We even looked at some old pictures. She requested breakfast in bed, and Louise (of course) had to join her. We had a great party, with lots of wonderful people, delicious cake, and pink presents. We even had 6 soccer boys. They came, gave me humongous hugs, bought Cora lots of presents... and then let the girls beat up on them for the rest of the party. They are such good guys, babe, and so patient and kind with the girls. A certain taciturn Englishman told me that they are following in your example... but I think he deserves a little credit too.
It seemed like Cora had a good day. It was a good day. Of course, it was really hard to do it all without you, but it was a good day.
Wednesday, March 11, 2015
Dear Tony
Dear Tony-
You died a few minutes after 8 on a Friday morning. It had been a long few days. Monday night, you struggled to breathe, and needed treatments every few hours. Tuesday night, you couldn't clear mucus from your throat and were nearly choking on it at times. On Wednesday morning, Hospice told us that you were leaving us. So we started hourly morphine doses to keep you comfortable. I think sometime Wednesday was the last time you were conscious.
On Thursday, your pulse oxygen level was in the 30s all day. Your heart was still strong, but the rest of your body was failing. I sat with you Thursday night, and wondered how long you could last. When we started this, I promised myself I could be as strong as I needed to be, for as long as I needed to. By Friday morning, I was at my breaking point. I was extremely tired, and just wanted you to be at peace. I cried, and begged, and pleaded. And then in just a few short minutes, you were gone. Your heart lasted until I was ready to collapse. Maybe that means we were perfectly matched.
Nearly all your family was here around you... telling stories, laughing, and crying as we waited with you. People who couldn't be here were sending in stories for us to tell. There was a lot of love. There is no where I would have rather been than by your side.
By the end of that day, most of your medical equipment had been packed up and moved out, and we had started to make your arrangements. It was strange, and very surreal. But I could still feel you here. I could feel you in the love that surrounded us, and in my heart. I still feel you. I know you'll always be there.
I love you,
Amanda
You died a few minutes after 8 on a Friday morning. It had been a long few days. Monday night, you struggled to breathe, and needed treatments every few hours. Tuesday night, you couldn't clear mucus from your throat and were nearly choking on it at times. On Wednesday morning, Hospice told us that you were leaving us. So we started hourly morphine doses to keep you comfortable. I think sometime Wednesday was the last time you were conscious.
On Thursday, your pulse oxygen level was in the 30s all day. Your heart was still strong, but the rest of your body was failing. I sat with you Thursday night, and wondered how long you could last. When we started this, I promised myself I could be as strong as I needed to be, for as long as I needed to. By Friday morning, I was at my breaking point. I was extremely tired, and just wanted you to be at peace. I cried, and begged, and pleaded. And then in just a few short minutes, you were gone. Your heart lasted until I was ready to collapse. Maybe that means we were perfectly matched.
Nearly all your family was here around you... telling stories, laughing, and crying as we waited with you. People who couldn't be here were sending in stories for us to tell. There was a lot of love. There is no where I would have rather been than by your side.
By the end of that day, most of your medical equipment had been packed up and moved out, and we had started to make your arrangements. It was strange, and very surreal. But I could still feel you here. I could feel you in the love that surrounded us, and in my heart. I still feel you. I know you'll always be there.
I love you,
Amanda