Most folks look forward to going to bed and waking up to a brand new full of promise, at least I used to do that!
That isn't how it is anymore. I dread going to bed because when I wake up and try to move I sing a song to myself "I'm Loosing it". Yea, I do that instead of feeling sorry for myself. Oh, don't get me wrong, I'm frustrated beyond comprehension, the people I feel sorry for are Lisa and Larry.
Let me tell you what works now. I can see, but that is going, I have cataracts, my right hand works good enough for me to type and wipe myself after using the bathroom, but that is about all, strength is going fast. I can still walk, slowly, not to steady. I can still lift my legs. Hallelujah!
The odd thing happening now is that I'm BORED!! Yep, I am an "A" type of personality with a bit of hyper-activeness in me. So, what can I do now? watch TV or movies and work at being a couch potato, boss others around, when they can understand me. I can still sort the laundry if someone else right sides the clothes first and I can ride in the car. I can still read scriptures and pray. I can get in and out of the car by myself, but I have a hard time doing up the seat belt. I can walk in the store but not push a cart, I can ride on the electric carts in the stores, but I sometimes run into things. And I almost forgot, I can still climb stairs!
Well, thats about all for now, I hope I didn't depress you, that is not my intent, I am just trying to keep every one on the same page. Thank all of you sweet people for your kind thoughts and cards, They really do brighten my otherwise boring day!
Tuesday, November 30, 2010
Sunday, November 28, 2010
Happy Thanksgiving one and all
Yes, its Thankgiving and for the last 4 years most of our entire family has participated in a Thanksgiving Run/Walk to benefit the homeless in Palm Springs.
This year my children and their families were there as well as my sister and her kids and families. Last year was my best time of 50:12 minutes walking. This year I am being wheeled and you can see me, my sister, Pam and my nephew, Peter haming it up on the scene. That is my son Brian and husband in the background, it was a lot of fun, even though I didn't walk!
Thanksgiving was a real family gathering this year! We rented the house right next door to Pam and we put Brian & Kate with their 3 kids, Lisa & John with their 3 kids and Mark and Lisa with Kamden in that house. It also meant a second kitchen, a second refridgetor, a second double oven and sink! We had breakfast and lunch over there, while we had dinner in the main house. Kelly Rogers took charge of being our vacation planner and she did a rockin' job! Brian and Ashlynn were in charge of decorating the kids table, they had a tablecloth the kids could color on and the place holders had each childs photo on it! Kate was in charge of decorating the adult table and it was elegant! Each family had different assignments and it worked out fine.
This year my children and their families were there as well as my sister and her kids and families. Last year was my best time of 50:12 minutes walking. This year I am being wheeled and you can see me, my sister, Pam and my nephew, Peter haming it up on the scene. That is my son Brian and husband in the background, it was a lot of fun, even though I didn't walk!
Thanksgiving was a real family gathering this year! We rented the house right next door to Pam and we put Brian & Kate with their 3 kids, Lisa & John with their 3 kids and Mark and Lisa with Kamden in that house. It also meant a second kitchen, a second refridgetor, a second double oven and sink! We had breakfast and lunch over there, while we had dinner in the main house. Kelly Rogers took charge of being our vacation planner and she did a rockin' job! Brian and Ashlynn were in charge of decorating the kids table, they had a tablecloth the kids could color on and the place holders had each childs photo on it! Kate was in charge of decorating the adult table and it was elegant! Each family had different assignments and it worked out fine. We watched movies, played Bunco and swam, in all it was a really great time for me. Thanks to all who made those 4 days so fun and memorable.
To top it all off, my dearest friend in the world, Jenny Fernandez came with her husband, Benny to see me! I think I will now die a really happy, satisfyed lady!
Sunday, November 21, 2010
Letters of Love: From Lisa
A couple of weeks ago I had the privilege of going to California to help my Mom put her cherished Christmas decorations up. From the first day of my Moms symptoms, when she and I were secretly talking about ALS when no one else would, she would look at me and say, "this is my last Christmas, I know it." In my heart I knew she was right and the hurt was so heavy it seemed to squeeze the breath right out of me. It was crushing, there are no other words to describe it.
If you have seen my Mom's home at Christmas you would understand why. Each year she transforms their home into a fantasy turned reality. Christmas is everywhere and I have always loved it. The boxes, smells, and music are permanently etched into my mind and heart. To see it as an adult is one thing but to grow up in the magic of it each year with the imagination of a child makes the experience surreal.
Knowing this might be the last Christmas with my Mom I wanted to be there when the boxes were opened. I wanted to know which pieces she loved the most and where they came from. I knew it was so personal for her too and I wanted her to be able to go her pace and let her enjoy it. If this truly was going to be her last Christmas I wanted to go through the entire process with her.
The first day was hard. Within the first 10 minutes of the week long decorating adventure we were embarking on she fell while trying to get on the chair to fluff the top of the tree. She fell 2 more times that day and it became painfully obvious that her legs no longer had the strength to push up. Another devastating milestone that came much to swiftly. Her fingers did not have the mobility to work the small delicate ornament hooks. She was relegated to sit by and watch as I decorated her beloved tree and put up the Victorian Christmas town that she and I have collected and enjoyed creating together each year.
I have seen my Mom decorate all these years but never appreciated the experience it is. Every bow had tissue paper stuffed into each of its folds to keep the ribbon perfect. Every box a perfect puzzle maximizing every inch of space. Each box labeled with a date, who it was given by, or where it was from. The labor and the love those boxes hold amazed me. She cares for everything so conscientiously. If a handle breaks on a box she repairs it making it better. The box from the Barbie Dream house I got one Christmas holds decorations, another box is from the He-Man Castle Greyskull given to my brothers. The boxes are as much a treasure as what they hold. Why does current society put such emphasis and pressure on things being new, perfect, and coordinating? We seem to have lost the sentimentality that comes with use and time.
Although I loved the decorations as a kid I never had plans to make my home the same wonderland mostly because I wanted to go home to my Moms wonderland. I wanted my kids to have the exact feeling from Christmas that I did. And yet here we are and my kids are 6, 4 and 1. Not nearly old enough to have those impressions etched deep enough to be permanent.
As I unpacked those boxes I knew that starting next year I will take Christmas decorating to a new level - to my Moms level. I want my children to have those same feelings of anticipation I feel when the air starts to turn crisp in the fall. The overwhelming feeling of comfort and warmth that comes each season and makes my heart long to go home.
When I returned to Utah I threw myself into life and tried to push aside all thoughts of decorating my own home. The decorating process was too raw and personal for me and I didn't want to think about what next year might be like. I knew I would need to do it because I didn't want Caleb and John spending most of their December in an undecorated home. Yet I was hoping to stay busy enough that perhaps it would be forced to be done at the last minute without the time to think and feel.
And then yesterday on an innocent errand to Roberts Crafts I ventured to the Christmas aisle. They had the cutest display of red and white rustic Christmas decor. I first read the sign, "Peace on earth" and my throat tightened knowing that is my Moms favorite Christmas song. Then I saw another sign that said "Believe in the spirit of Christmas." That sign touched me. My Mom understands the spirit of Christmas better than anyone I know.
I sat in the aisle deliberating. I wanted so badly to buy them and yet they were not on clearance - Ive never bought decorations before a Holiday, always on after clearance sales! It was more than that though, I wasn't ready to decorate again, I didn't want to face my own home and the pressure to create something as beautiful and as meaningful for my boys. I deliberated for about 10 minutes and then decisively placed the signs and some coordinating snowflakes in my cart.
When coming home I started putting them up without even taking Halloween down. I looked around and realized I couldn't do it like that. I finally had learned its not just about getting the decorations up - its about the process. I halted all decorating and carefully and deliberately put away all my Halloween and Fall decorations. Then I cleaned the kitchen spotless and I dusted the house. Next came the Christmas music, Alabama, the Carpenters, the Osmond's, all my Moms classics. Only then did I bring all the boxes in and open them.
It was a sweet afternoon.
First came our nativity, a gift my Mom gave us the first Christmas we were married and had our own little home.
Then the snowmen lace she brought me back from Brussels...next the little rustic snowman and Santa she gave me...then her leftover garlands that had been handed down to me. Everywhere I looked I saw things my Mom has passed onto me, things she gave to me because she thought I needed them, and many things she had given me just because she knew I wanted them. There are so many gifts that she has given me over the years...the potpourri holder she made me...the Santa's cookie plate that I left cookies on when I was a little girl...the Christmas books with her loving notes in the cover...the Alpine trees we bought with her on black Friday when I was pregnant with Caleb. Everywhere I look my Moms presence permeates our home.
I had a hundred things to do yesterday and all I did was decorate. After helping her in her home I saw mine so differently. Ive always hated that we don't have somewhere to hang stockings in our home and amazingly I noticed yesterday that my pot rack on the wall had 5 hooks! I was always decorating around what existed but yesterday I felt freed to turn my home into a blank slate.
I used thumbtacks, nails, scissors, wire, pliers, ribbon, hammers, and every ounce of creativity I had. Creating pushed back my fears of next Christmas and when I would start feeling overwhelmed I would look over and read my new sign:
I believe that next year although my Mom wont be here, her spirit will stay with me and carry me through. Next year many of her decorations will probably become mine but her essence will stay with them. I only hope that I can use them to ignite the same magical feeling in our home that she created all those years for me.
If you have seen my Mom's home at Christmas you would understand why. Each year she transforms their home into a fantasy turned reality. Christmas is everywhere and I have always loved it. The boxes, smells, and music are permanently etched into my mind and heart. To see it as an adult is one thing but to grow up in the magic of it each year with the imagination of a child makes the experience surreal.
Knowing this might be the last Christmas with my Mom I wanted to be there when the boxes were opened. I wanted to know which pieces she loved the most and where they came from. I knew it was so personal for her too and I wanted her to be able to go her pace and let her enjoy it. If this truly was going to be her last Christmas I wanted to go through the entire process with her.
The first day was hard. Within the first 10 minutes of the week long decorating adventure we were embarking on she fell while trying to get on the chair to fluff the top of the tree. She fell 2 more times that day and it became painfully obvious that her legs no longer had the strength to push up. Another devastating milestone that came much to swiftly. Her fingers did not have the mobility to work the small delicate ornament hooks. She was relegated to sit by and watch as I decorated her beloved tree and put up the Victorian Christmas town that she and I have collected and enjoyed creating together each year.
I have seen my Mom decorate all these years but never appreciated the experience it is. Every bow had tissue paper stuffed into each of its folds to keep the ribbon perfect. Every box a perfect puzzle maximizing every inch of space. Each box labeled with a date, who it was given by, or where it was from. The labor and the love those boxes hold amazed me. She cares for everything so conscientiously. If a handle breaks on a box she repairs it making it better. The box from the Barbie Dream house I got one Christmas holds decorations, another box is from the He-Man Castle Greyskull given to my brothers. The boxes are as much a treasure as what they hold. Why does current society put such emphasis and pressure on things being new, perfect, and coordinating? We seem to have lost the sentimentality that comes with use and time.
Although I loved the decorations as a kid I never had plans to make my home the same wonderland mostly because I wanted to go home to my Moms wonderland. I wanted my kids to have the exact feeling from Christmas that I did. And yet here we are and my kids are 6, 4 and 1. Not nearly old enough to have those impressions etched deep enough to be permanent.
As I unpacked those boxes I knew that starting next year I will take Christmas decorating to a new level - to my Moms level. I want my children to have those same feelings of anticipation I feel when the air starts to turn crisp in the fall. The overwhelming feeling of comfort and warmth that comes each season and makes my heart long to go home.
When I returned to Utah I threw myself into life and tried to push aside all thoughts of decorating my own home. The decorating process was too raw and personal for me and I didn't want to think about what next year might be like. I knew I would need to do it because I didn't want Caleb and John spending most of their December in an undecorated home. Yet I was hoping to stay busy enough that perhaps it would be forced to be done at the last minute without the time to think and feel.
And then yesterday on an innocent errand to Roberts Crafts I ventured to the Christmas aisle. They had the cutest display of red and white rustic Christmas decor. I first read the sign, "Peace on earth" and my throat tightened knowing that is my Moms favorite Christmas song. Then I saw another sign that said "Believe in the spirit of Christmas." That sign touched me. My Mom understands the spirit of Christmas better than anyone I know.
I sat in the aisle deliberating. I wanted so badly to buy them and yet they were not on clearance - Ive never bought decorations before a Holiday, always on after clearance sales! It was more than that though, I wasn't ready to decorate again, I didn't want to face my own home and the pressure to create something as beautiful and as meaningful for my boys. I deliberated for about 10 minutes and then decisively placed the signs and some coordinating snowflakes in my cart.
When coming home I started putting them up without even taking Halloween down. I looked around and realized I couldn't do it like that. I finally had learned its not just about getting the decorations up - its about the process. I halted all decorating and carefully and deliberately put away all my Halloween and Fall decorations. Then I cleaned the kitchen spotless and I dusted the house. Next came the Christmas music, Alabama, the Carpenters, the Osmond's, all my Moms classics. Only then did I bring all the boxes in and open them.
It was a sweet afternoon.
First came our nativity, a gift my Mom gave us the first Christmas we were married and had our own little home.
Then the snowmen lace she brought me back from Brussels...next the little rustic snowman and Santa she gave me...then her leftover garlands that had been handed down to me. Everywhere I looked I saw things my Mom has passed onto me, things she gave to me because she thought I needed them, and many things she had given me just because she knew I wanted them. There are so many gifts that she has given me over the years...the potpourri holder she made me...the Santa's cookie plate that I left cookies on when I was a little girl...the Christmas books with her loving notes in the cover...the Alpine trees we bought with her on black Friday when I was pregnant with Caleb. Everywhere I look my Moms presence permeates our home.
I had a hundred things to do yesterday and all I did was decorate. After helping her in her home I saw mine so differently. Ive always hated that we don't have somewhere to hang stockings in our home and amazingly I noticed yesterday that my pot rack on the wall had 5 hooks! I was always decorating around what existed but yesterday I felt freed to turn my home into a blank slate.
Believe in the Spirit of Christmas.
I believe.
I believe that next year although my Mom wont be here, her spirit will stay with me and carry me through. Next year many of her decorations will probably become mine but her essence will stay with them. I only hope that I can use them to ignite the same magical feeling in our home that she created all those years for me.
Besides the gift of a Savior the best gift I have ever been given at Christmas was from my Mom...
She gave me the spirit of Christmas in my heart.
Friday, November 19, 2010
C C C machines
This week we had a delivery. A very nice respiratory therapist named Manny came by the house and dropped off 3 different machines I now need to use. A C-pap machine for oxygenating me, a Cough Assist machine and a mouth Cleaning machine for clearing out things that get caught in my mouth or throat.
As I learn to use machines to help me live, I often think that life isn't much fun anymore. I have realized that the only true pleasure I get is when I am doing something for someone else. I know I must now be served, but it is so totally unnatural for me! And I'm getting noticibly weaker. Can you tell I'm going through a rough period right now? Prayers wanted and I hope accepted.
As I learn to use machines to help me live, I often think that life isn't much fun anymore. I have realized that the only true pleasure I get is when I am doing something for someone else. I know I must now be served, but it is so totally unnatural for me! And I'm getting noticibly weaker. Can you tell I'm going through a rough period right now? Prayers wanted and I hope accepted.
Thursday, November 18, 2010
Chapman University
Tonight my niece took me to her disabilities class. I met some really nice people. We talked about my ALS and how it is affecting my life, communication and family relationships. I never went to collage myself, and I am amazed with their knowledge. Chapman is a beautiful private College in the heart of Orange County. I loved the campus and the opportunity to share a little of my story with the class and a super Professor.
They have a piece of the Berlin wall and some incredibly beautiful old buildings. Thank you Kelly!
They have a piece of the Berlin wall and some incredibly beautiful old buildings. Thank you Kelly!
Monday, November 15, 2010
Pam and Larry
I can't say enough about my sister Pam and my husband Larry. When I called for Pam, she came! She stayed 3 days giving up her own agenda to take care of me and teach Larry the art of tube feeding. Yes, it's an art. Now its "staying Power time". The days where we take it slow one day at a time. I am blessed to have an eternal companion who loves me so unconditionally. He is also my Bishop and he still consults on a part time basis. I am blessed, I am blessed, I am blessed!!!!!
Sunday, November 14, 2010
Feeding Tube
As you can see, I went into the UCI Hospital to get my feeding tube put in. Although this is a state of the art Medical and Research hospital, The beds are still not comfortable. If you know me well, you know I am almost always cold. Here at the hospital I can say I was actually hot. The surgeon was wonderful, the nursing staff overworked but nice. I can tell you that I thought I had died and woke up in hell. I lost 3 pounds while there for my 42 hour ordeal. You can't believe how thirsty I was! I didn't sleep the entire time I was there except for short snippets that left me sore and uncomfortable. I came home much more exhausted, thirsty and hungry than I went in.
I had wonderful support while there from Larry and Linda Howson (Larrys sister) Denny Howson and my dearest Sister Pam and my niece, Kelly. Linda wiped my eyes dry, Denny kept an eagle eye lookout while Larry smuggled in the contraband. Kelly gives the most Wonderful neck, back and legs and my sissy knows whats really going on.
I am so glad that's over. I got a great nights sleep (11 hours) and I'm finally no longer thirsty! Part of my swallowing problems and thick saliva was from being so dehydrated. I'm good to go now!
I had wonderful support while there from Larry and Linda Howson (Larrys sister) Denny Howson and my dearest Sister Pam and my niece, Kelly. Linda wiped my eyes dry, Denny kept an eagle eye lookout while Larry smuggled in the contraband. Kelly gives the most Wonderful neck, back and legs and my sissy knows whats really going on.
I am so glad that's over. I got a great nights sleep (11 hours) and I'm finally no longer thirsty! Part of my swallowing problems and thick saliva was from being so dehydrated. I'm good to go now!Friday, November 12, 2010
Surgery update from Lisa
Just got word from my Dad that the feeding tube surgery was a success. They will most likely be keeping her over night. They have lots of help and comfort from my Aunt Linda and Uncle Denny who are vising from Washington.
Thanks for keeping my Mom in your prayers!
Thanks for keeping my Mom in your prayers!
Wednesday, November 10, 2010
Visiting Teachers
I have to say a word about those unsung heroines of the Church I belong to called "The Church of Jesus Christ of Latter Day Saints" otherwise called Mormons.
Every woman in our Church has a Visiting Teacher or sometimes two. These woman visit at least every sister in our Ward boundaries. I have been blessed by some wonderful women as visiting teachers in my life. I joined the Church when I was 18 and never regretted it.
Today, I have a visiting teacher who is an angel, just like the one before her. Her name is Sherry and she unconditionally takes care of me. She makes sure we have meals brought in on Sundays and Wednesdays. She comes over to my house on Sunday morning to help me dress and get ready for Church because my dear husband is the Bishop of our ward and has early morning meetings. She drives me when Larry can't. She takes me shopping. She schedules ladies to come in on certain days that I choose to help me with the projects I still need to finish.
My last visiting teacher is a working lady and can't serve me like I need, so they changed visiting teachers on me, but, before she left she gave me and Larry a gift certificate to her favorite restaurant.
I believe Visiting Teaching is an inspired concept. I was a visiting teacher for years until I got to sick to serve others. It makes me sad that I can't be of service to my fellow men anymore. I guess its time to be humble and accept my new roll. Bless all the Visiting Teachers who do so much good in this world. They visit the lonely ever month, take care of the sick and cheer up the women of our church like angles do!
Every woman in our Church has a Visiting Teacher or sometimes two. These woman visit at least every sister in our Ward boundaries. I have been blessed by some wonderful women as visiting teachers in my life. I joined the Church when I was 18 and never regretted it.
Today, I have a visiting teacher who is an angel, just like the one before her. Her name is Sherry and she unconditionally takes care of me. She makes sure we have meals brought in on Sundays and Wednesdays. She comes over to my house on Sunday morning to help me dress and get ready for Church because my dear husband is the Bishop of our ward and has early morning meetings. She drives me when Larry can't. She takes me shopping. She schedules ladies to come in on certain days that I choose to help me with the projects I still need to finish.
My last visiting teacher is a working lady and can't serve me like I need, so they changed visiting teachers on me, but, before she left she gave me and Larry a gift certificate to her favorite restaurant.
I believe Visiting Teaching is an inspired concept. I was a visiting teacher for years until I got to sick to serve others. It makes me sad that I can't be of service to my fellow men anymore. I guess its time to be humble and accept my new roll. Bless all the Visiting Teachers who do so much good in this world. They visit the lonely ever month, take care of the sick and cheer up the women of our church like angles do!
Monday, November 8, 2010
My flap has flopped
Today I had the privilege of going down to the Orange Regional Family History Center to train my replacement. She is a wonderful, energetic, and organized person. It was awkward to use my master key for the last time, but I know this is what the Lord wants. She kind of got "baptism by fire" today. Denise is a quick learner, but we were all confused at the loss of 4 order cards today, although it had 4 of us working to solve this problem. On a lighter note, Lucine Fox, Jim Keffer, Denise Sorenson and I were just sitting around talking and Lucine made the comment that she thought "there was a little flap in the throat which kept the air side and the food side separated and kept you from choking", I promptly replied "in that case, then my flap has flopped". We all had a good laugh. Laughter is good for the soul.
I want to tell Denise Sorenson how happy I am that I am turning the responsibility over to her. She may not know it yet, but she will learn all she needs to learn and really be a benefit to those she trains. Bless her heart for accepting this call. I gave you more training than I got when I took over. Make this calling your own. Change all files with my name on it to your name and delete anything that looks personal, use what you can and enjoy the ride!
I want to tell Denise Sorenson how happy I am that I am turning the responsibility over to her. She may not know it yet, but she will learn all she needs to learn and really be a benefit to those she trains. Bless her heart for accepting this call. I gave you more training than I got when I took over. Make this calling your own. Change all files with my name on it to your name and delete anything that looks personal, use what you can and enjoy the ride!
Saturday, November 6, 2010
Girly
What an amazing woman our daughter has become! I miss her enthusiasm already. Her energy is amazing. Who would have ever thought that that snotty, hard-headed, know it all teenager would have grown into the most amazing woman I have ever known?
Intuitively woman smart, a fabulous mother, a wise wife, a good ironer, the best Relief Society counselor I have ever seen, a great photographer, a rental manager, a babysitter for her friends, soccer coach, AYSO treasurer, a financial whiz, a gourmet cook, a thorough cleaning lady, a plasma doner and a great friend who knows how to keep confidences... this list is endless as is her energy. She is all the best parts of me, Larry, Gloria, Irene and Caroline Melissa Coleman, her 3rd great grandmother. But I see in her myself the most, does that make me conceited, if so I'm sorry, I didn't mean it like that.
I want to publicly thank Lisa for her willingness to put aside her responsibilities to come and serve me. I enjoy her very much! We had a good time putting up the Christmas Decorations and shopping for Christmas presents. I can't wait for Thanksgiving.
I would be remiss if I didn't thank John, Caleb, Davis and Beckham for sharing their mom and wife. And a HUGE THANKS to the special friends in St. George who took her kids and fed her family so she could come serve me. You will all be blessed for your sacrifices. I am so thankful to everyone who helped this week.
I love you Girly
Intuitively woman smart, a fabulous mother, a wise wife, a good ironer, the best Relief Society counselor I have ever seen, a great photographer, a rental manager, a babysitter for her friends, soccer coach, AYSO treasurer, a financial whiz, a gourmet cook, a thorough cleaning lady, a plasma doner and a great friend who knows how to keep confidences... this list is endless as is her energy. She is all the best parts of me, Larry, Gloria, Irene and Caroline Melissa Coleman, her 3rd great grandmother. But I see in her myself the most, does that make me conceited, if so I'm sorry, I didn't mean it like that.
I want to publicly thank Lisa for her willingness to put aside her responsibilities to come and serve me. I enjoy her very much! We had a good time putting up the Christmas Decorations and shopping for Christmas presents. I can't wait for Thanksgiving.
I would be remiss if I didn't thank John, Caleb, Davis and Beckham for sharing their mom and wife. And a HUGE THANKS to the special friends in St. George who took her kids and fed her family so she could come serve me. You will all be blessed for your sacrifices. I am so thankful to everyone who helped this week.
I love you Girly
Thursday, November 4, 2010
Lisa here...
I wanted to let you all know that I have stolen my Mom this week so that we could enjoy setting up the Christmas decorations together. It has been a priceless week for me to spend time reminiscing and learning from her.
Her strength continues to slide. We have had a few sad milestones this week. The first is that she no longer has the strength to push herself up onto a stool or get up from the ground unassisted. This has been hard in light of the fact we are decorating but she adapts with a good attitude. She does an amazing knee walk on the ground to the nearest chair or furniture available.
The second milestone is a little harder and was learned a little harder too. She can no longer drive and go out without assistance. Unfortunately this lesson was learned after taking a fall in a parking lot yesterday evening. Her left arm has no mobility left so she could not break her fall at all. Not to mention since she can no longer get herself up she was quite literally stuck on the ground with no cell phone and no one around to help her.
She can no longer lift her left arm and uses a swinging motion to get it where she wants it. Eating has also become much more difficult and we are hoping that her feeding tube will be put in a week from tomorrow.
That all comes out sounding so bleak and yet for us its normal day to day life. She goes about it all with a smile on her face and joking about the changes that have come. Last night we got laughing so hard all over something so silly and we couldn't stop laughing.
That's one of the hardest things about ALS - while her speech slows and her limbs lose strength her mind is the same and sometimes its hard for us to remember that. My mom is not an old lady, nor is she mentally handicapped. She is as smart and sharp as ever, if not more so from the unique perspective that she has. She is amazing and being here with her this week has been a joy and blessing for me.
Sometimes people tell me they don't know how to act and I think the most important thing is to remember to let her do for herself what she can and not talk down to her. Slow down, go her pace, and just take the time to enjoy the process and not worry about being productive. That's what it is about, the joy of the process - not always the ending result.
Her strength continues to slide. We have had a few sad milestones this week. The first is that she no longer has the strength to push herself up onto a stool or get up from the ground unassisted. This has been hard in light of the fact we are decorating but she adapts with a good attitude. She does an amazing knee walk on the ground to the nearest chair or furniture available.
The second milestone is a little harder and was learned a little harder too. She can no longer drive and go out without assistance. Unfortunately this lesson was learned after taking a fall in a parking lot yesterday evening. Her left arm has no mobility left so she could not break her fall at all. Not to mention since she can no longer get herself up she was quite literally stuck on the ground with no cell phone and no one around to help her.
She can no longer lift her left arm and uses a swinging motion to get it where she wants it. Eating has also become much more difficult and we are hoping that her feeding tube will be put in a week from tomorrow.
That all comes out sounding so bleak and yet for us its normal day to day life. She goes about it all with a smile on her face and joking about the changes that have come. Last night we got laughing so hard all over something so silly and we couldn't stop laughing.
That's one of the hardest things about ALS - while her speech slows and her limbs lose strength her mind is the same and sometimes its hard for us to remember that. My mom is not an old lady, nor is she mentally handicapped. She is as smart and sharp as ever, if not more so from the unique perspective that she has. She is amazing and being here with her this week has been a joy and blessing for me.
Sometimes people tell me they don't know how to act and I think the most important thing is to remember to let her do for herself what she can and not talk down to her. Slow down, go her pace, and just take the time to enjoy the process and not worry about being productive. That's what it is about, the joy of the process - not always the ending result.
“Anyone who imagines that bliss is normal is going to waste a lot of time running around shouting that he has been robbed. The fact is that most putts don’t drop, most beef is tough, most children grow up to be just like people, most successful marriages require a high degree of mutual toleration, and most jobs are more often dull than otherwise. Life is just like an old time rail journey … delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride.”
-President Gordon B. Hinckely
Subscribe to:
Posts (Atom)