Results 1 to 8 of 8

Thread: CN Central: DECEMBER 2016 UPDATES!

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,041
    Blog Entries
    1

    Thumbs up CN Central: DECEMBER 2016 UPDATES!


    ((((((Hugs to All)))))) ~

    The season of shopping, baking, decorating, wrapping gifts, cooking special dinners, and gathering with loved ones, is upon us. I'm exhausted just thinking about it.

    I have started shopping (on line), and boxes are being delivered at all times of the day now. After our robbery, I'm all over it. I hear a truck, I'm at the door. Now the boxes are stacking up, and I'm determined to start sorting out gifts this weekend. I buy gift bags, tissue, ribbon, etc. in bulk from Paper Mart. I avoid wrapping. Gift bags are the way to go!

    Through the years, I've learned to streamline as much as possible, because I just don't have the energy to do what I once did. I once made bracelets and earrings (beading), elaborate candles (melted the wax, used molds, and decorated the candles), and numerous holiday floral arrangements. I entertained friends, cooked and baked, and decorated the house like the Christmas Store had exploded in every room. And I did all of that in addition to caring for my boys. I do not know how I did it.

    Now, I've lost dexterity in my hands from RA, and beads would be flying everywhere, if I attempted to make any jewelry. Making candles requires a lot of time on my feet, standing next to the stove waiting for the bags of wax to melt, then pouring, then detailing.

    And even though I am only caring for Jon now, his needs are so intense that I have no time for creative outlets. And I'm older now, of course, and worn out. I'm grateful for those years, when those creative outlets provided me with therapy and my loved ones with gifts from my hands and my heart.

    I pray for peaceful, healthy holidays for all. May you be filled with the joys of the season and find ways to destress and maintain balance.

    Please stop by and keep us updated, if you can in the midst of the holiday happenings.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  2. #2
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,211
    Blog Entries
    17

    Default

    On my end just very with work etc. I started buying gifts early this year and will send them out earlier than last year. I did also see my teacher with the stroke recently and the cold weather effects his functions a bit(stroke side seems weaker,and he's more tired) but he's doing well. More updates coming later...

    Rose, Thanks for the new thread! In regards to RA I know some things that help with dexterity like when opening jars. Would that help you? I can send links. I remember you saying in your other thread that you are exhausted. Please pace yourself and remember that you need to care for yourself so you can care for those you love.
    Last edited by funnylegs4; 12-01-2016 at 08:00 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  3. #3
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,211
    Blog Entries
    17

    Default

    Here's an update: I finally wrapped and sent all of my christmas gifts ON TIME for a change so yay! Merry Christmas and Happy Holidays!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. #4
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Belated Merry Christmas to all my friends here! I Have been reading updates as best I can. What a very busy month. I've made many of my Christmas gifts to family, teachers and therapists. Lavender soaps and candles, Painted flower pots (red with gold letters saying JOY which is what Kathleen calls herself) with poinsettias in it, and lighthouses made of flowerpots. I'll try to get a picture up of some of these. We thankfully had a happy healthy holiday with family and friends. Kathleen and I have the whole week off. We went to see the movie Sing yesterday it was pretty cute, she loved it since it was a lot of music. I hope everyone here had a happy healthy holiday!!!
    We will have a coupe friends over for New Years eve but probably won't make it till midnight we usually don't.
    My son bought us a new TV 4K (not sure what that exactly means LOL) but it's a smart TV so we can get Netflix Hulu Amazon, and youtube directly through the TV so maybe we can get rid of the local cable company(so overcharged!). I hope to see some updates from everyone!
    Mary Grace

  5. The following user says "thanks"


  6. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,041
    Blog Entries
    1

    Default

    ((((((Mary Grace)))))) ~

    Great to see you here! I've missed you, but I figured you were ultra busy. And you have been!

    How great that you made all of those gifts ~ and they sound so sweet and nice. I'm sure everyone appreciated your time, effort and talent. I'd love to see your photos ~ as many as you have!

    I've seen lots of commercials for SING, and it does look very cute. A cast of "star" voices too.

    Great idea to get rid of cable and watch TV/movies on the internet. I think it's the wave of the future, but I can't envision commercial broadcast TV not existing. I love Netflix. And I can catch up on programs I've missed on various network websites, as well as youtube. You should go to YouTube and bring up Bruno Mars videos for Kathleen. He has a new CD out, I think. He had a great performance a few weeks ago on Saturday Night Live. Look it up on YouTube!

    So happy for you that you've been enjoying healthy holidays with your loved ones.

    OUR UPDATE ~

    Jon's back to the insomnia battle. We had to give him Ativan the other morning; in 50 hours, he had slept 4 hours. With the Ativan, he slept for 4 hours, woke up for 5 hours, then slept for 3 hours.

    Jim and I were not up to hauling out our big heavy tree, taking hours to fluff it, and then climbing the ladder to the rafters in the garage to get the huge box of our very special ornaments to place on the tree. Then the thought of breaking it all down and putting it away in a week or so ... we just don't have it in us.

    Jon has his "wire tree" and his "bark" tree, both lit with tiny LED strands in red and green. They are small, table top trees. He can't be around live trees, and artificial, plastic trees off gas toxins. So this is his solution, and he's happy with it.

    I didn't even open the box full of Christmas decorations for Michael's room. I just did the minimum decorating for his room, where we usually place our big tree.

    It saddens me that this is the first Christmas in 47 years that we haven't had a tree and all of our collected treasured Christmas ornaments and decorations on display. But this is our reality now. Jim hasn't been well. Jon's needs are increasing. My priorities are my son and husband. We don't entertain. No one sees our tree or decorations, with the exception of Jon's nurse.

    So, I have to conserve my energy and resources for caregiving and maintaining our home and running our household. The extra demands of Christmas and the holidays were more than I could manage this year.

    Nonetheless, every day for 12 days, Jon received a new movie or concert Blu-ray or DVD for Christmas. We watched lots of Christmas movies, listened to Christmas CDs, and we cherished our time together.

    A New Year is upon us, and we don't know what it holds. We pray for strength, healing, Divine Guidance, and for peace.

    For all of us ~



    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. The following user says "thanks"


  8. #6
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Rose, It sounds like you made the choices you needed to make which is what life's reality is daily. Especially when we care for someone with a disability and health complication. It sounds like you made a wonderful Christmas for Jon. AS a mom we will always put our kids first that's what makes us happy and that's what makes the holiday wonderful, family. The gift I received this year I think is a new understanding of how different the holiday can be for so many people.Not that I had no understanding of this before but it was very profound for me this year. My family gave back to some who were in need and saw how hard these times can be. Kelly "adopted" a young girl through her gym and bought her Christmas presents, Her office adopted a family through an organization she volunteers for called the Bus Stop Club (for siblings of children with disabilities), My husband ran a 50/50 "lottery" at work and raised 1,000$ 500 went to a young woman who just divorced and had 38 dollars to her name just 3 days before Christmas, and 500 went to St. Jude's. His office also bought gifts for the woman who cleans their office and has children. She didn't have good shoes and walks a lot to get to her jobs. They got her sneakers and I made a gift basket of some personal items. They were afraid that she had left the job when they didn't see her for a few days but found out when she came back she had been in the hospital with a blood clot. My daughter's boyfriend is oversees in the Marines. It gave me a new view on families with loved ones in the service who aren't home for the holidays and won't be for months. Worrying and waiting for a text or call. She sent him 2 boxes for Christmas but they still haven't reached him. So many people don't have the "perfect" holiday, and don't have their loved ones with them, may not have good health, or worse... It felt good to give and it made us realize that we are lucky to have what we do have. I appreciated every minute with family and am thankful for our health. Sorry for the novel but it really hit me in the gut this year knowing how difficult this time of year can be. I hope 2017 bring your family good health and peace! thanks for the updates on your wonderful family!
    Mary Grace

  9. #7
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,211
    Blog Entries
    17

    Default

    Happy early new year ladies!

    Mary Grace, That's so wonderful that you helped so many in need!! Keep up the great work! I feel more full filed on Christmas when I give to others and appreciate little things like how precious life is. TVs can connect to youtube now? Awesome! I wonder if my youtube films would play on a TV like that?

    Rose, sorry your tree set up did not work out. If that ever happens again may I suggest hanging some of the Christmas decorations on the wall instead of on a huge tree? Sometimes I can't do the big tree either so I hang Christmas stuff around the house in other suitable spots. The important thing is Jon has his tree. Hope he gets some sleep.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  10. #8
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,041
    Blog Entries
    1

    Default

    ((((((Hugs to All)))))) ~

    Mary Grace ~

    How wonderfully you and your family captured the true meaning of Christmas. Most people don't have an Ozzie and Harriet existence. Nothing is perfect. Everyone has challenges. Giving to others in greater need than our own defines "giving." It's what we should all do, all year long. It's win-win. You feel good, the recipient feels good. It's all good.

    It's difficult to be joyful, when you're alone, or you're financially strapped, or you're going through a crisis. People, like you and your family, bring that joy to those who would otherwise be lost and lonely during the holidays. Bless you.

    Part of my sadness about this holiday relates to the reality that none of us are able to do the things we once could do. Jon, Jim, and I are much older, and we each have our own physical ailments. I endeavor to counter that sadness with gratitude that we're all still here and together.

    We've spent many Christmases in the ICU through the past 47 years. Being "Home for the Holidays" means everything to us. However we celebrate, in whatever way we're able to bring the season into our home and our lives, we're together.

    funnylegs4 ~

    Thank you for your suggestion. We've strung ornaments around the house and on the walls in years past, but this year, Jim and I didn't even have the strength or energy to climb the ladder to get the big box of ornaments off of the garage rafters.

    I'm fairly sure that we will never put up our tree again. We just physically cannot manage it. And I simply don't have enough hours in a day to spend decorating. I have to squeeze in my laundry, cleaning, and cooking, between sleeping menfolk. That is not going to change.

    Actually, both of their needs will increase, which will give me less time to contemplate decorating for the holidays. So, we begin now to accept the changes before us.

    WISHING EVERYONE A VERY HAPPY, HEALTHY NEW YEAR

    Love & Light, Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Similar Threads

  1. Exercise and Stretch Thread: December 2016
    By BBS1951 in forum Multiple Sclerosis
    Replies: 134
    Last Post: 01-01-2017, 03:15 AM
  2. CN Central: MAY UPDATES
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 9
    Last Post: 05-26-2016, 04:23 PM
  3. CN Central: JANUARY 2016 UPDATES!
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 23
    Last Post: 02-04-2016, 08:27 PM
  4. CN Central: DECEMBER UPDATES
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 26
    Last Post: 12-24-2015, 08:09 PM
  5. December updates!
    By andromeda31 in forum Child Neurology
    Replies: 9
    Last Post: 12-23-2014, 08:07 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.