Hello to everyone. I've spent the last few days with family. It has been exhilarating and exhausting. The exhaustion is strange because I haven't done any more physically than usual. I used to be the one running up and down the stairs and getting things prepared and nothing could stop me. Tony takes care of all that now and it makes me feel useless. That is the only negative of this weekend, just not being able to do anything but be here.
I spent my birthday, Friday with Amanda and Brayden. She made me a special cake. I call it an icing cake because it's a lot more icing than cake. I have a weak spot for icing. My Dad came, my Stepmother Gracie cooked for me earlier in the week for my birthday. Great food, cake and all. This is how I'm keeping my weight on. It's strange being told by your Doctor to keep weight on, but I have decided to get used to it. Everyone knows what I can eat easily and make sure I have plenty. When I don't have my food specially prepared, I'm on the Brayden diet. My Grandson and I eat the same things.
I really shouldn't use the word, negative, because it's been a great few days. My son, Tyler, came to town and surprised me for my birthday Friday evening. It's been great to spend time with him in person. It was a little scary at first because this is the first time he's seen me with the ventilator or in a wheelchair full time. We had a much needed in person talk. We talked about the fears and pain and shed a few tears. He has put on a strong face for me since. There is no changing the situation right now, so we've certainly not limited ourselves to talking about ALS. No way ALS is going to spoil my precious short time with him. We won't have that. Today he spent the afternoon with his sister, Amanda, and her family. He got to see his sister, Tasha, a few minutes as she stopped by with Amber on her way to work. Amber stayed and visited a while, In case you don't remember she is the Granddaughter I inherited when Tasha married Billy. She's a very sweet young lady and busy new mom to her son, Grayson.
But between Friday and tonight (Sunday) I've had a lot of visitors and a lot of love. Mom visited Saturday here instead of our usual Saturdays out. I was too exhausted. Mom and my sister, Julie, already celebrated my birthday earlier in the month. Julie and I both have April birthdays. Tyler will be here one more day. Weather allowing, we're going for a stroll around the neighborhood. It will be nice leaving these walls.
Wednesday Our son, Steven will be leaving town for ETSU School of Pharmacy. Some special hellos and non-permanent good-byes this week.
I have a couple of ideas for my next post, but remember I'm open to topic suggestions. It's best to leave them under the blog drop down menu "leave me a message" or on the private contact page.
I want to say hello to all my followers and welcome the new ones that have added to my inspiration to keep blogging. Thank you all.
Until next time, take care,
April
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Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Sunday, April 28, 2013
Thursday, April 18, 2013
A Gift of Independence
Hello to all.... I was working on a different post but it will have to wait for another day. I'm too overwhelmed to think of anything else. My Stepdaughter, Tasha, came to visit this evening. She, her husband Billy and the three boys 
Jesse, Ethan and Uriah came in two vehicles and left in one. They gave us their van! They decided with the older kids on their own they can manage without it now.
I believe I've mentioned in prior posts that I have my power wheelchair. It has been sitting in an empty den 14 stairs away from me. We have our house on the market and planned to buy a van when we sell. It's been very difficult for my husband to get me in and out whenever we leave. I've been concerned about him hurting his back carrying me up and down stairs. He will still have to get me up and down stairs but he won't have to get wheelchair in and out of trunk and all the transferring.
We still have to get it modified, but it is in sight. Soon I can roll out of my house and into a van, then roll out of the van inside any store.
How do you thank your child for giving you their vehicle? All of our kids are young adults. A time when, as parents you want to help them out. It's very humbling to accept something like this. Thank you Tasha and Billy. The boys were all very sweet but comical about it, letting me know they don't have a van anymore. The oldest, Jesse showed me how he closes the back door hatch. Ethan asked an innocent but good question about how I will drive the van while I'm in a wheelchair. I let him know Grandpa has me covered there. They've had the van a few years and the boys obviously like it. I feel it was a gift from them too. They know I need it, and were willing and happy for me. If not, Tasha must have really threatened or bribed them well. No, they wouldn't have made it through the visit without it coming out. We all know how honest kids are. Thank you Jesse, Ethan and little Uriah.
My whole family has been here for me and helped in any way they can from getting the house prepared to sell, like my brother-in-law and nephew professionally cleaning carpets. Our kids Steven and Amanda painting while both having a lot going on, Amanda just giving birth and giving me pedicures, Steven working and studying for PCAT. (he passed) I've received supportive text messages from Tyler who is living in another State. My Mother doing all kinds of thing that she shouln't do with her bad neck. My sister Julie has been there any time I've called out for her. She is also helping a lot in raising awareness about ALS. I received two pairs of new shoes in the mail from my cousin, Trudy, who lives out of state after she read of my feet being freed. I can keep going. For any family I've left out, please don't think I have forgotten, it's all so appreciated by both Tony and me. I've always been an, If I can't do it myself, I won't ask, type of person. Now I'm flooded with family offering to help in any way. Even my extended family Patsy and Jerry offering to cook meals to have ahead of time.
Like I said in the beginning, having them give us their van has been an overwhelming experience for Tony and me. We're both learning how to accept help, it's hard, but we're learning and realize we are lucky. To any family reading, this van was for both of us, but I feel I've received more attention being the sick one. Tony puts on so many hats for me everyday, I don't feel like anybody knows what all he goes through. He needs to hear how great he is. He's with me every day. He worries to leave me to go workout, he takes care of me even at the times I'm not easy to take care of. Thank you to the whole family from both of us.
There are many people with ALS who have nobody. If you're in a position, please find a way to help them in any way possible through this cruel, scary journey nobody should take alone.
Today, a huge thank you to Tasha and her clan.
Special note to Tasha: The Chain of Love won't end here!
Until next time, take care,
April
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Jesse, Ethan and Uriah came in two vehicles and left in one. They gave us their van! They decided with the older kids on their own they can manage without it now.I believe I've mentioned in prior posts that I have my power wheelchair. It has been sitting in an empty den 14 stairs away from me. We have our house on the market and planned to buy a van when we sell. It's been very difficult for my husband to get me in and out whenever we leave. I've been concerned about him hurting his back carrying me up and down stairs. He will still have to get me up and down stairs but he won't have to get wheelchair in and out of trunk and all the transferring.
We still have to get it modified, but it is in sight. Soon I can roll out of my house and into a van, then roll out of the van inside any store.
How do you thank your child for giving you their vehicle? All of our kids are young adults. A time when, as parents you want to help them out. It's very humbling to accept something like this. Thank you Tasha and Billy. The boys were all very sweet but comical about it, letting me know they don't have a van anymore. The oldest, Jesse showed me how he closes the back door hatch. Ethan asked an innocent but good question about how I will drive the van while I'm in a wheelchair. I let him know Grandpa has me covered there. They've had the van a few years and the boys obviously like it. I feel it was a gift from them too. They know I need it, and were willing and happy for me. If not, Tasha must have really threatened or bribed them well. No, they wouldn't have made it through the visit without it coming out. We all know how honest kids are. Thank you Jesse, Ethan and little Uriah.
My whole family has been here for me and helped in any way they can from getting the house prepared to sell, like my brother-in-law and nephew professionally cleaning carpets. Our kids Steven and Amanda painting while both having a lot going on, Amanda just giving birth and giving me pedicures, Steven working and studying for PCAT. (he passed) I've received supportive text messages from Tyler who is living in another State. My Mother doing all kinds of thing that she shouln't do with her bad neck. My sister Julie has been there any time I've called out for her. She is also helping a lot in raising awareness about ALS. I received two pairs of new shoes in the mail from my cousin, Trudy, who lives out of state after she read of my feet being freed. I can keep going. For any family I've left out, please don't think I have forgotten, it's all so appreciated by both Tony and me. I've always been an, If I can't do it myself, I won't ask, type of person. Now I'm flooded with family offering to help in any way. Even my extended family Patsy and Jerry offering to cook meals to have ahead of time.
Like I said in the beginning, having them give us their van has been an overwhelming experience for Tony and me. We're both learning how to accept help, it's hard, but we're learning and realize we are lucky. To any family reading, this van was for both of us, but I feel I've received more attention being the sick one. Tony puts on so many hats for me everyday, I don't feel like anybody knows what all he goes through. He needs to hear how great he is. He's with me every day. He worries to leave me to go workout, he takes care of me even at the times I'm not easy to take care of. Thank you to the whole family from both of us.
There are many people with ALS who have nobody. If you're in a position, please find a way to help them in any way possible through this cruel, scary journey nobody should take alone.
Today, a huge thank you to Tasha and her clan.
Special note to Tasha: The Chain of Love won't end here!
Until next time, take care,
April
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Sunday, April 14, 2013
Great Saturday and More...
I had no intention of blogging tonight but it's close to 5:00 am and I'm still wide awake so here I am. It's still Sunday to me even though I know some people are waking for work. Yes, I remember Mondays well. Days seem to blend together now. I know days by Dr. visits and I know when it's getting close to Saturdays with my Mom. I have time with Amanda and Brayden tomorrow. I will get to see Brayden's recently discovered ability to crawl, and Amanda is treating me to a mani-pedi. I'm pampered.
Saturday was crazy fun with Mom and Julie. We hit up Marshalls and Old Navy. Yes I did get some new shoes for my newly freed feet along with some clothes to fit my ever expanding body. My stomach is huge, especially on the right side. Now I know there are different body types. Everybody knows the apple and pair shape. Now don't get me wrong, I've gained all over but in an odd way that 40 has nothing to do with. My stomach is fatter on the right side, my left boob appears larger than the right and my useless right leg is much smaller than my left. there are other oddities going on with my body shape too.
Let me explain these. ALS has decided to play around with my right side much more than my left. I have lost abdominal muscle and you'd be surprised how much fat and organs a little abdominal muscles can hold in place without effort. Mine are very weak so everything protrudes out, they're weaker on my right side so it protrudes out more. My left boob seems larger because the chest muscles on my right side have atrophied, so with my bra on and breasts moved up in the right position (that does have to do with 40) they become like two different sizes when they're not. My right leg is just atrophied all over so it's quite a bit smaller than my left which is still holding muscle and fat.
Back to Saturday, I wasn't about to go try on anything that had to be pulled up my legs, so I just tried on tops where I found them. It was an unusual scene. I loved every second of it. We had fun, finishing the day off at Steak n Shake. I had a peanut butter and banana milk shake and some of Julie's soft chili cheese fries. At home I could have gotten them down better but it would have been a site. I have my ways of getting things down that I just can't do in public.
None of this mattered to me Saturday. We laughed getting me in the car. We used a transfer board a couple time and I went for it a couple times withe my left side strength. One time I was making it and Julie came in toward me from the driver's side. I saw it coming, she was reaching out for my left arm to help me along, I said "This is my good arm." It didn't register so when she pulled the arm I went straight down on the seat. My right arm can't hold my weight. Mom was still helping with my lower half so with some twisting and contorting I made it in the seat. It was one of the better laughs of the day. I have several but I'll stop there. I treasure the days that come together by me having the energy and others the time to spend. Too often I feel too weak, major fatigue or back pain going on to have a day like that.
I did get a little done on the site today. That's an ever evolving slow process, especially if I intend to put my efforts in the blog. The blog takes more than I ever imagined.
I'm glad I shared this happiness because I plan on going for some tough topics this week or sometime really soon unless something pressing comes up I want to share.
If my grammar mistakes bother you, just get over it. I'm not a professional writer and I mentioned this was a concern of mine from the beginning but I'm getting over it. I've seen much worse. If you're have trouble following, it's more than likely a comprehension or ego problem on your end than my writing skills, OK?
Until next time, take care,
April
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Saturday was crazy fun with Mom and Julie. We hit up Marshalls and Old Navy. Yes I did get some new shoes for my newly freed feet along with some clothes to fit my ever expanding body. My stomach is huge, especially on the right side. Now I know there are different body types. Everybody knows the apple and pair shape. Now don't get me wrong, I've gained all over but in an odd way that 40 has nothing to do with. My stomach is fatter on the right side, my left boob appears larger than the right and my useless right leg is much smaller than my left. there are other oddities going on with my body shape too.
Let me explain these. ALS has decided to play around with my right side much more than my left. I have lost abdominal muscle and you'd be surprised how much fat and organs a little abdominal muscles can hold in place without effort. Mine are very weak so everything protrudes out, they're weaker on my right side so it protrudes out more. My left boob seems larger because the chest muscles on my right side have atrophied, so with my bra on and breasts moved up in the right position (that does have to do with 40) they become like two different sizes when they're not. My right leg is just atrophied all over so it's quite a bit smaller than my left which is still holding muscle and fat.
Back to Saturday, I wasn't about to go try on anything that had to be pulled up my legs, so I just tried on tops where I found them. It was an unusual scene. I loved every second of it. We had fun, finishing the day off at Steak n Shake. I had a peanut butter and banana milk shake and some of Julie's soft chili cheese fries. At home I could have gotten them down better but it would have been a site. I have my ways of getting things down that I just can't do in public.
None of this mattered to me Saturday. We laughed getting me in the car. We used a transfer board a couple time and I went for it a couple times withe my left side strength. One time I was making it and Julie came in toward me from the driver's side. I saw it coming, she was reaching out for my left arm to help me along, I said "This is my good arm." It didn't register so when she pulled the arm I went straight down on the seat. My right arm can't hold my weight. Mom was still helping with my lower half so with some twisting and contorting I made it in the seat. It was one of the better laughs of the day. I have several but I'll stop there. I treasure the days that come together by me having the energy and others the time to spend. Too often I feel too weak, major fatigue or back pain going on to have a day like that.
I did get a little done on the site today. That's an ever evolving slow process, especially if I intend to put my efforts in the blog. The blog takes more than I ever imagined.
I'm glad I shared this happiness because I plan on going for some tough topics this week or sometime really soon unless something pressing comes up I want to share.
If my grammar mistakes bother you, just get over it. I'm not a professional writer and I mentioned this was a concern of mine from the beginning but I'm getting over it. I've seen much worse. If you're have trouble following, it's more than likely a comprehension or ego problem on your end than my writing skills, OK?
Until next time, take care,
April
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Saturday, April 6, 2013
My Family Knows Now
HEADS UP - This post is some info about my family. Not much ALS related but I hope you still read on.
I did it! I told my family about my blog starting with my parents in person.
My Mother gave me her 100% approval and thinks it's great for me. What a relief. She did get in touch with me after going home to read everything to tell me God must always be capitalized. I will Mom. Thanks, I love you.
Dad approved 100% after he read the homepage aloud for everyone here just as I would have myself. Thanks, I love you
Who doesn't want approval from their big sister? She read and got back with me right away and told me she is proud and thinks it's a great blog, and other things great to hear from her. Thanks sis, I love you
All of my children told me they love it, and I have their 100% approval. So much relief. I have a wonderful family and I'm sure most of you may find it strange I'm just now telling them, and especially that it's scary for me. Even if we handle things in a way that is strange to you, we are very close.
I've done a lot of texting and starting to cramp up, not to mention the sun will be rising soon. I'm exhausted, so I'd like to introduce my immediate family now.
When Tony and I first met we both came with two kids and both inherited two more. We both had a son and daughter. While keeping it simple I want to introduce them. I'll go from oldest to youngest.
The oldest is Steven at 28 years old
Next is Tasha at 27 years old
We have Tyler at 23 years old
Last but not least is Amanda at 22 years old
Getting into Grand-kids is so simple yet tricky.
Ya know, there just aren't many "traditional" families anymore. It can get complicated. Half this, step that, uncle younger than nephew and all that stuff. Let's not pretend you all have no divorces, steps, halves and the such. If your family is perfect, you're an oddity. It's OK, Everyone is statistically odd in some way. And there are a lot worse things to be odd about than a long line of intact family. Either way, Come on now, stop pretending. Your family is only picture perfect on the printed photo, Right? It doesn't mean there is no healthy family love going around.
OK, shooting for simple...
Tasha and husband, Billy, have 3 young boys at home. Jesse, Ethan and Uriah. Two grown kids that have left home, Nathan and Amber. Tasha was a great Mother to teens at a young age. While loving them both, she has a very strong bond with inherited daughter.
Amanda and Jason have our newest Grandson at 9 months old, Brayden, along with an older inherited Grandson and inherited son Amanda loves like her own, Jamieson.
Our boys have kept away from the parenting life so far.
It's birthday time for Tasha's young boys all born close in time of year. Time to hit up Toys R us!
They will be added to my family pictures.
This is my website/blog about my progression with ALS. I will throw snippets of family info sometimes. It helps you better understand the person behind this case of ALS. Respecting my family's privacy is of utmost importance to me. I'm the one opening up online. It's not recommended in general but, knowing my fate, I'm not so concerned about what that next employer might read about me in a few years.
This post is for those interested in the person behind this ALS case.
Most Importantly, this is for my family. I love you all!
Until next time, take care,
April
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I did it! I told my family about my blog starting with my parents in person.
My Mother gave me her 100% approval and thinks it's great for me. What a relief. She did get in touch with me after going home to read everything to tell me God must always be capitalized. I will Mom. Thanks, I love you.
Dad approved 100% after he read the homepage aloud for everyone here just as I would have myself. Thanks, I love you
Who doesn't want approval from their big sister? She read and got back with me right away and told me she is proud and thinks it's a great blog, and other things great to hear from her. Thanks sis, I love you
All of my children told me they love it, and I have their 100% approval. So much relief. I have a wonderful family and I'm sure most of you may find it strange I'm just now telling them, and especially that it's scary for me. Even if we handle things in a way that is strange to you, we are very close.
I've done a lot of texting and starting to cramp up, not to mention the sun will be rising soon. I'm exhausted, so I'd like to introduce my immediate family now.
When Tony and I first met we both came with two kids and both inherited two more. We both had a son and daughter. While keeping it simple I want to introduce them. I'll go from oldest to youngest.
The oldest is Steven at 28 years old
Next is Tasha at 27 years old
We have Tyler at 23 years old
Last but not least is Amanda at 22 years old
Getting into Grand-kids is so simple yet tricky.
Ya know, there just aren't many "traditional" families anymore. It can get complicated. Half this, step that, uncle younger than nephew and all that stuff. Let's not pretend you all have no divorces, steps, halves and the such. If your family is perfect, you're an oddity. It's OK, Everyone is statistically odd in some way. And there are a lot worse things to be odd about than a long line of intact family. Either way, Come on now, stop pretending. Your family is only picture perfect on the printed photo, Right? It doesn't mean there is no healthy family love going around.
OK, shooting for simple...
Tasha and husband, Billy, have 3 young boys at home. Jesse, Ethan and Uriah. Two grown kids that have left home, Nathan and Amber. Tasha was a great Mother to teens at a young age. While loving them both, she has a very strong bond with inherited daughter.
Amanda and Jason have our newest Grandson at 9 months old, Brayden, along with an older inherited Grandson and inherited son Amanda loves like her own, Jamieson.
Our boys have kept away from the parenting life so far.
It's birthday time for Tasha's young boys all born close in time of year. Time to hit up Toys R us!
They will be added to my family pictures.
This is my website/blog about my progression with ALS. I will throw snippets of family info sometimes. It helps you better understand the person behind this case of ALS. Respecting my family's privacy is of utmost importance to me. I'm the one opening up online. It's not recommended in general but, knowing my fate, I'm not so concerned about what that next employer might read about me in a few years.
This post is for those interested in the person behind this ALS case.
Most Importantly, this is for my family. I love you all!
Until next time, take care,
April
[subscribe2]
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