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Thread: A Caregiving.com webcast about preparing the holidays

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    Default A Caregiving.com webcast about preparing the holidays

    Hi Everyone!
    If you have time and feel like, have a listen to a webcast I did today with Denise Brown on caregiving.com - our topic was preparing for the holidays.
    http://www.caregiving.com/2014/11/vi...-for-children/

    x Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna)))))) ~

    I watched this yesterday with closed captioning. You should watch it that way ~ it is hilarious, and none of it makes any sense. I have found this with cc on some videos, and I think it's odd that with today's technology, the captioning can't be right on accurate. And it should be to benefit those with hearing issues or who, like me, have volume turned off so as not to disturb a sleeping hubby.

    Today, I watched it with the sound on. Much better!

    The holidays have always been a challenge for me, but more so now that we are isolated by flu season and have very few family members left with whom to gather.

    In the old days, every single room in our home was decorated to the maximum. It looked like the Christmas Store exploded in our house. I made numerous fresh floral arrangements (as I was into that for a few years as therapy). I baked. I made candles, pouring wax into assorted forms and decorating them when finished to give as gifts. I hosted parties for our close friends for gift exchange, and made huge meals for the occasion. All of this, I did as a single parent. In our graduate student days, when we were poor, I baked pecan pies, and drove in the freezing snow on icy roads to deliver them in person to our friends. My pies were famous, so I was usually greeted at the door with fork-wielding friends!

    My Uncle and Aunt had the largest home, so my Aunt insisted that she hold both Thanksgiving and Christmas. That meant that I got to haul my boys and their chairs (in a 1980 Toyota Corolla, before we had our van), their meds, diapers, changes of clothes, books, toys, and whatever else, along with my pot luck contribution of veggies, and at Christmas ~ all of our Christmas gifts to the family. Then I drove an hour to their house ~ Load, unload, load, unload, arrive home after midnight, put the kids to bed and collapse.

    When I insisted that I wanted to host Christmas, my Aunt said, "We're just trying to make it easier for you." I explained that it was far easier for me to cook dinner in my home than it was to haul everything down to their home and back again.

    So what happened on Christmas Eve night the first time I hosted? Michael had pneumonia, and at 3 a.m., he, Jon, and I were driving to ER in the fog. Got home at 6 a.m. Put the turkey in. Got the boys settled, tended to them, and when the family arrived on Christmas afternoon, I was ready. I pulled it off.

    Not anymore. Now, I decorate Michael's and Jon's rooms, with maybe a touch here or there in the living/dining room/kitchen. I don't have the strength or energy to decorate ~ unbox, put out, take down, rebox, put away. It's a lot of work. The Christmas decorations are on the top shelf in the garage, a precarious reach on the ladder for Jim. A broken hip isn't worth the festive ambiance!

    Just the little decorating we do for Jon and Michael is tiring enough for us. As long as we honor them and bring beauty and sparkling, meaningful surroundings to them, we have celebrated Christmas exactly as we should.

    We are just so grateful to spend Christmas at home, as we've spent a few in the hospital. With Jon, Christmas 2004/New Year 2005. In 2010, he was released on Christmas Eve from ICU, but he was not ready to be home, and was sick that weekend, while we waited for a nurse. He was back in ICU by January 24 2011 for 40 days (we watched the Super Bowl in ICU).

    Choose any holiday, and we've been in the hospital with one of our boys. Easter, Valentine's Day, Fourth of July, all of them ... When that happens, I bring the holiday to them. I wear Christmas sweaters, or I bring in a stuffed bunny from the gift shop, or balloons, or some appropriate decoration for that holiday.

    As you said in the podcast, we're different. Even after 45 years, my remaining family members don't quite grasp how different we are. That's because I spent so many years trying to be Super Woman, attempting to make everything as normal as I possibly could.

    And, as situations changed, we changed with them. We adapted. Because every day here is like the other for us, I have to work a little harder to make sure we acknowledge any holiday. I want to continue to be as normal as we possibly can, regardless of our situation.

    In addition to our challenges as caregivers, Jim and I are grieving parents. The holidays are exceptionally difficult for us, because we miss Michael. To help us through the holidays, we incorporate Michael into everything we do. His room holds our tree and family ornaments and presents.

    I guess I've always felt our difference, but it is never more profound than during the Thanksgiving-Christmas holidays. It is such an effort to try to be normal, while also cherishing our difference. It's been an unusual life. To say the very least.

    Finally, one of my favorite Christmas memories ~ when the boys were teens, and dinner at Auntie's was running exceptionally late. Jon, holding up his spoon, announced, "Dinner! I'm starving!" I didn't even know that he knew the word, "starving!" He was incredibly articulate and quite dramatic, and everyone stopped talking, looked at Jon, and laughed. We all grabbed our forks and spoons, including Auntie, waved them in the air, and said, "We're starving!" Jon loved it, because he's an entertainer and crowd pleaser. Soon thereafter, dinner was served, and Jon gobbled it up, true to form. Every Christmas thereafter, someone, usually my grandma, in her 90's, would pipe up with, "Hurry up with dinner. Jon's starving!"

    The holidays ~ this year, I'm trying to get in the mood. I better work on it a little more, because it's looming close ~

    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.

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    Rose, what a precious memory of Jon at Christmas dinner!!! Thank you for sharing. I can only imagine how difficult the holidays are for you. When I was thinking about the holidays during that conversation, I was thinking how shrink everything as our children grow into adults. The occasions move from being big family get-togethers to just family, to just one room. We shrink over time. What I do find strange is people with young children who go on away to a hotel so they don't have to do any of the preparations. When our kids were young, like you, I pulled out all the stops and I always have done most of the cooking in our extended family for holidays. I still like to bake and I give it away to my Mom and to Nick's helpers. But our holidays are much, much quieter than they used to be. And that's fine. :)
    Thank you for sharing your feelings about Thanksgiving and Christmas, Rose. I am not surprised at all about how you much you miss your beloved Michael every day, but especially on holidays.
    Well, I promised that I would share a photo of Nick and me baking our shortbread! But Nicholas was a rascal and watched the hockey game with his Dad so I did the baking and they did the eating! We all had a lovely visit anyway. Here we are - Nick is raising money for 'Movember' with his moustache. I can't wait till he shaves it off! Nickhome.jpg
    Sending love to you, Rose, and all my CN frirends! Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    ((((((Donna)))))) ~

    What a great photo! What is Movember? Hockey related?

    Where's the photo of your fabulous shortbread? How much butter did you use?

    Shrinking is a good word. When I/we entertained family and friends at the holidays, the decorating was more important. Now, other than us, the only one who sees our decorations is Jon's nurse. Podiatry gals will see them, as they are coming January 4, and they'll still be up. But it's not the same as having a group of people for a meal/party.

    I also gave up sending Christmas cards years ago. I send e-cards now, which are actually more fun!

    The top priority for us is to ensure that Jon has a wonderful Christmas experience. He has a library of Christmas DVDs, which we start watching after Thanksgiving. When he was grade school age, I taught him 5 Christmas songs, and each year we sing them together. He finishes the last word of each line, as in, I sing "You better watch ..." and he sings "out," "You better not ..." "cry." We have done this every year for the last 35 years (except the hospital years)! He opens a present a day for 10 days prior to Christmas, so he isn't overwhelmed on Christmas Day. We buy him DVDs, and dole them out each day, so he has a new movie for the day. He loves it. I wear my Christmas sweaters and sweatshirts, so he has those to look at while I tend to him.

    Shrunk. We have. And it is fine.

    Prayers for healthy, happy holidays for everyone here at CN and BT this season ~



    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.

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    Hi!

    Great topic & interview Donna! I told Brian yesterday that the size of our tree is directly proportional to my holiday cheeriness, lol! Even though the new tree that I put up is the smallest I ever had, it did turn out beautiful! And I am not done yet, have to put up my unique personal ornaments still. I just don't feel much like going all out decorating the house this year. Can't put lights in the back like I did last year due to the dog, he would eat them. My front tree is now too high for me to reach without ladders and I am not up for that. Oh well. I am keeping up with the things we do together....taking the kids to the mall to see Santa. He is back! They get the same Santa since Caitlin was an infant...I keep fearing he will retire but I saw he is back again...we will have 14 years of Santa pictures with him. :) We have advent dinner & church the next three Wednesday nights. Sunday school Christmas program. Christmas piano recital. Brandon's band concert. So busy! But all fun things. It was easier to travel to activities when Caitlin was younger. I just dread hauling her chair around...I am hopeful the new one arrives before the family Christmas parties. Last year I hurt my shoulder carrying it over the snow so it would not track snow all over other people's houses. Staying at our house does sound nicer every year but I know Brian's family probably would not want to give up having it at their place. I don't mind going there so much since they do everything in their power to make it easy for us to be there. My side though, most of them have finished basements so they all sit down there which means carrying the w/c down steps, lots of steps....70 lbs wheelchair. And 53 lbs Caitlin. But I love to see everyone and pretty much Christmas is the time that everybody comes so we go. I told Brian when all the court stuff is done, since it used up the 'up north land fund', instead of resaving for that, we will be saving up to finish off our basement. I think it will just get even harder to travel places as she gets older and if we can finish off a family room downstairs (which the walls are already up and drywalled, we did that much when we built). Then we can just invite the families over here. I can totally see how holidays shrink as we get older...already with my own kids, they are not little little anymore so it is not all toys and 'stuff'. I would rather focus on spending time together. That is what I remember from when I was a kid was getting together with family. :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Hi Lisa and Rose,
    Rose, Movember is a crowd sourcing fund raiser for prostate cancer - moustache november=Movember. Thank goodness Nick just shaved his awful moustache off yesterday and now he's much more handsome :) (I think)!

    Lisa, I get exhausted just reading what you have on your plate! I'm going to be your best friend waggling her finger now, what about your book club? What about your fitness? I think a lot of time, we need to heed the philosophy of the 'good enough mother' because in North America, I think we've gone around the bend in terms of what we expect of mothers. It is an impossible job to look after four children alone (I know Brian is your husband, but he works and right now you're going through a crisis) - it's OK for Christmases to shrink and for people to begin to really do whatever you want/need, especially at Christmas. It's terrible that you hurt your shoulder last year lifting Caitlin's chair through the snow. The other thing that I've been thinking about more and more lately is that we need to back off from our kids more to let them solve their own problems so they develop resilience and gratitude. Gosh, my own mother was the queen of that - we were on our own. I think she went too far in that direction (but my sister and I turned out OK!). But I'm just saying that maybe you can't be at practices and even every recital. Maybe you need to carpool the boys and you go to book club. That's not selfish. I'd really like to hear your thoughts and others' too - I think this is a discussion that we all need to have!
    Signed a mother who did all my kids' projects for years!
    xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    I still go to book club! :) I missed some in the fall due to other things (kid stuff conflicts) but this month I had read the book and made sure I attended! The kids were rowdy that evening and I could tell Brian was a little stressed so I offered to take Tyler with me and dropped Brandon off at wrestling practice on the way. It worked out really well! The conference room we meet in at the library has a giant window that looks into the library and there is a table right in the view so I had Tyler sit there and do homework. He actually ended up just wandering down in the children's books area and picked out a stack of books and just laid on the floor and read one. (I could see him the whole time since the view includes the kids area too) The librarians just loved him, lol, they were like, 'he was so well behaved!". He sure can turn on the charm when he wants to and of course I am sure they love to see a kid that likes to read! I laughed when he said in the car that it looked boring what we were doing! I assure you, it isn't! We laugh and talk and have great discussions about the books. We are also having a book club Christmas party so I am glad you brought that up since I forgot to write that on my December calendar yesterday when I was filling it out with all that is going on. Fitness has been bad, so many appointments last month that I really slacked off. But tomorrow, I recommit to daily workouts! I even was excited to hear from my creative memories (scrapbooking) lady that CM is back! They had been out of business, then reorganized as another company (which wasn't as good) and now got bought out again and they brought back the CM name and products. She is the one who hosts the annual retreats that I go to, and she is also having once a month Friday night workshops again so I am planning to start going to those too. I do pretty well getting out and doing things on my own for fun...I think my biggest problem is that we don't often do things as a couple together. We work more as a 'tag team', he stays, I go or I stay, and he goes. It is nice now that the kids are older, we don't hover at every practice anymore (thank God!). I can remember when Brandon was younger and in basketball and Brian gave me grief for reading a book during the practice instead of watching it. I said at the time, I pay attention at the game, not the practice! Now, Brandon gets dropped off and he actually gets rides from the wrestling team when there is after school practice (they go from the middle school to practice up at the high school down the road-too far to walk though). I was very self-sufficient as a kid and I always did think of that, like how are my kids going to learn to do stuff if we do everything for them? I went to a movie w/my mom & sister on Friday night and we were talking and I said I slept in that morning until 8:30am and they were like, 'how did the boys eat breakfast?'...I said they cook their own! They were kindof shocked at that, but we have taught the boys to use the microwave and Tyler & Brandon can even fry their own eggs if they wish. Logy can do cereal or fruit and the big boys help him with hot foods or milk pouring if it is really full. It was kindof funny the way they poo poo'd that but I thought, 'geez, I babysat a 10 month old baby full time for the summer when I was 12 and Brandon is 11 already' Of course they should fix their own breakfast! It was hard to take a step back at first, but once we did and realized it was a good thing, we are getting better at letting them do things for themselves. But I think it is hard to plan to do something just us together, when it involves asking someone else to come in to watch the kids. But I think I would like to try maybe going out to eat once a month just Brian & I at one of the local restaurants and not getting a sitter. Like just get a movie & popcorn for the kids and setting them up with that and going to eat just as a couple. We have a few restaurants that are about a 10 minute walk from our house so if something went on at home we could be there in a flash. Age 11 is when I started babysitting my sister when my parents went out together. Ooooh, I just read your last line about doing their projects! That made me laugh! We were watching videos last night on my computer and saw the vid of Brandon's 1st grade experiment....Brian & I used lemons to power a LED lightbulb...that for sure was not from a 1st grader's brain! LOL! I have improved though...Brandon has had to do many projects this year and I managed to sit on my hands and bite my tongue! Especially for the LEGO map of south America (well I was a little b*tchy about making sure the LEGOS came home since Tyler & Logy play with them all the time)...his teacher raved about it at conferences and he got an A+. They even built a waterfall into it! I think the teachers can tell when kids do it themselves or not. He did a powerpoint on a biome earlier this year and I stayed hands off (it was hard for me to not jump in and improve it) and he got an A on that too, which surprised me since I kind of thought (but kept to myself) hey you could add more pictures and do something fancier to the slides. My big thing is I do nag him to work on things over time and not leave them until the last minute. I have bad memories of doing projects and papers at the last minute when I was young...he does pretty good though, I don't have to say too much since I have drilled into them over the years that it is better to do the homework first, then play. :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Lisa, you are the most dedicated, wonderful mother in the whole wide world. Your kids are gorgeous, full of life and humour and I just love you and your wonderful family. I just hope you find some time to pamper yourself and keep healthy, mind body and soul. I wrecked my back lifting for too long - I don't know, I guess I was trying say that it's just SO HARD to stop everything and say to the kids and husband... 'forget whatever you want right now, I'm taking the night off!' Of course, that is impossible most times, I know, but I wonder if we give up thinking that way? I know I did for sure. Now I wonder if I should have been more my own best friend through those years. (Give self a shake) Well, enough musing - you're a GREAT Mom and I'm really glad your scrapbooking retreats might be back! I loved the photos from the last one :) xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    Thanks Donna! :) I have definitely been thinking about myself lately....going to the movie on Friday was nice and the scrapbooking things are on Friday nights...I think I might just say to Brian that Friday nights are going to be 'my night', even if I have to go to a movie alone! I was just talking to Caitlin's van driver this morning about all the lifting. One of the EAs (educational assistant, fancy name for aide) from the high school is the driver...she was saying how they pay the ladies that work in the special needs classes the same as an EA that works in the library. Definitely not fair! We were also talking about lifting and having to do 'cares'...one of Caitlin's classmates from the CD room moved up to the high school this year and her van driver is one of the main ladies that work with this classmate ("M"). "M" is pretty severely disabled and requires suctioning and other more medical stuff. I can't believe they don't get a premium above 'regular' school aides for having increased responsibility. I told her if I ever ran for school board I would definitely speak out on that! I have to finish my term on the church council before I do that though.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    For sure there should be levels of professional designation in EAs related to the skills they have to use. Caring for someone very complex needs cannot be compared to assisting the able bodied kids in the library! The EAs working with kids with difficult behaviours should extra too - let me know if you decide to do something about that! I have a friend who did her PhD thesis in EAs for special needs kids and I bet she'd have something to say on this too. Great idea about your Friday night off! I have a friend who says that in her house, her husband has to make dinner on Friday nights and that means planning, shopping, cooking and cleaning up! I better start listening to myself, geez, Jim doesn't do anything in the kitchen lol! But then again, be careful what you wish for - once he put raisins in the meatloaf 'for interest'! Let me know how your Friday plan goes and if you want to skype some Friday night, PM me here and we'll close our office/bedroom doors from the family, grab some popcorn and chat! xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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