Monday, December 15, 2014
For the past few days I have been trying to write this post in such a way as to not come across as an ungrateful, spoiled brat.
Hard to do when I have been exactly that.
As everyone knows, I love to decorate for Christmas. (If you don’t know that then either we haven’t met or you’re not paying attention.) I don’t just love to decorate; I aspire to be the talk of the neighborhood. I compete with neighbors to have the most lights, the most blow up decorations, the brightest house in the court.
I don’t know what it is like getting through December without having to flip the breaker switch when I want to use my hair dryer. I have been known to put one too many strings together outside – enough to blow the whole display.
Here it is December 15 and I only have a few decorations outside! I could blame the weather (and believe me, I will) but it isn’t just that. I have been busy at work and busy taking care of Robert and his increasing needs. I have had help from the kids in the past but they are out of the house and living their lives! How dare they!
Plus, it has been raining like crazy! Good for the California drought; bad for my Christmas lights.
The inside decorations even got a late start. I have been telling myself that it’s okay. My deadline is December 24, after all.
We have a large outdoor shed with our Christmas decorations. The shed is the size of a bedroom – a bedroom! Full of Christmas decorations! Which is awesome although quite daunting when my to-do list is ridiculously overloaded and those aforementioned kids are no longer around to haul boxes inside in assembly line fashion.
I had the brilliant idea of letting myself off the hook. I’ll take it slow, I said. I will just do what I can as time allows.
Then the calendar turned to December 2nd and I was back to “OH MY GOD! I HAVE TO DECORATE THE HOUSE!”
I hauled the boxes in, separating inside and outside décor. Having the rain helped me prioritize: inside first. Richard and I took Robert to the local hardware store to buy not one but two Christmas trees. I love having two trees – I had two growing up and think it just stuck in my brain that was just the right amount to have. (Of course, this isn’t the seventies so our tree is not the classy artificial white one with red ornaments.)
Richard and I usually get a very large tree for the front room and a smaller one for the family room where Robert spends most of his time. I mean, we have to leave room for Robert. I get it - I'm not crazy, you know.
This year, I had every intention of getting one huge tree and one smaller tree but realized we needed to get two smaller trees. Richard’s back was already killing him when we were picking out the trees and I could barely stand them up to find the best one. Robert found the one for his room in two seconds flat – his were easy to stand up and turn around.
“That’s a good one," he said after the second spin. Sold!
Richard and struggled with the ten foot trees and I finally looked at him and said we should get a smaller tree. Let’s get a six foot tree. That way, we can get both of them in the house without causing enough pain to warrant a three day recovery period. It would be easy to set up and decorate. Sold!
Both trees actually fit on top of Richard’s SUV and neither fell off! (Not that that’s ever happened to us.)
We got them in the house and set up and took our time decorating them. Just because we could. (And, you know, because the kids weren’t around. Kids – growing up and living their life; the nerve!)
But during this week, I found myself calling the living room tree my “Charlie Brown” tree. Yes, I was calling my six foot full tree a Charlie Brown tree.
Even I knew how ridiculous I sounded so didn’t dare say this out loud. Goodness! How ungrateful could I be? I have two six foot trees in my house!
As we put on the decorations, both trees came to life. Robert sat in his wheelchair and put ornaments on the tree. I found a holiday music station on the television and we listened to classic holiday music.
Robert, much to my surprise, even sang along to a song or two!
We drank hot chocolate and busily unwrapped the decorations and slowly but steadily emptied the boxes.
The trees are done, the indoor décor boxes have been put in the shed and my house is starting to look like Christmas. The outside still needs work but that will come along. I still have time! If we don’t win the unofficial (aka, existing only in my head) neighborhood decorating contest, that will be okay.
I think. Unless my Spoiled Rotten self returns.
Oh, I better get back out there – rain or no rain.
There are some traditions I just can’t give up!
Sunday, December 14, 2014
What better way to end a Caregiving Progressing Holiday Blog Party than with a gift?
|2015 Caregiving Calendar|
Pegi Foulkrod and I have created a 2015 Caregiving Calendar pairing Pegi’s artwork with words of comfort from Denise M. Brown, of CareGiving.com.
Pegi’s artwork absolutely takes my breath away. It is poignant, wistful and delicate and touches me deeply. Denise has been giving her readers words of comfort for years and they can also be found in three books which I highly recommend. You can purchase one or all three here (I suppose you could buy just two but go for them all!). Denise’s comforts always seem to fit just what people need, when they need it. She’s talented that way!
I wanted to combine these two talents and since I love calendars and they make a terrific holiday gift (hint, hint), we have created a gorgeous calendar with lovely pictures and comforts for all year!
And, because it is the season of giving and generosity, Pegi and I are donating half of the price of the calendar to CareGiving.com. (Cost to produce the calendar is more than that but we wanted to keep the price down and to give CareGiving.com as much as we could!)
This beautiful calendar sells for $15 per calendar.
Quantities are limited so get your order in fast! (I always wanted to say that.) J
Purchase the calendar through my PayPal (click on the button below) and either direct message or email me your address. I will ship the calendars as soon as I have them which should be within a week. I’m hoping the postal service cooperates and I can get calendars shipped out in time to give for Christmas gifts!
Wishing everyone a happy and delightful holiday season!
Sunday, December 7, 2014
Note to readers: I am participating in the CareGiving.com Holiday Progressive Blog Party. There are several people participating, (all of whom have wonderful blogs) and we will be stopping by to read each other’s stories and showing support through this holiday season.
The party starts today and I promised hot cocoa and tiny marshmallows to everyone! (Okay, so it is a virtual cup but just imagine how yummy it would be with a candy cane!)
Welcome to the party! I want to share this story about blessings to kick off the party.
The other morning while driving Robert to his Day Program, I was listening to my morning talk radio and Robert was working on his Word Search puzzle. I have been concerned about Robert lately because he has said odd things that make me think his brain is going down a path I really don’t want to witness.
At Thanksgiving, Robert asked me, “What’s my brother’s name? The one married to Liz?”
Taken aback, I looked at him like he was from Mars and said, “You mean Rich?”
“No, my other brother."
We don’t have any other brothers. Rich is it. Yes, I call Rich “Other Brother” in my blog but I don’t think Robert has been reading my posts (in fact, I am sure of it – he doesn’t understand computers other than it is the thing where people read about him.)
Another morning while I was driving, Robert asked me what he was supposed to do next on his Word Search. I could be very dramatic and say this almost caused me to get into an accident due to the shock of his question but everyone who knows me, knows I drive like a great-grandma so that wouldn’t be very realistic.
You get the point. There is something going on with Robert.
Of course I worry about this. Add to these odd experiences the fact that Robert has had two days in a span of three weeks where he had dozens of seizures within a few hours. Yikes!
What the heck is going on?
I worry and fret and contact his neurologist (and in the meantime, also have him put on antibiotics because his breathing is labored, he has congestion and he is showing usual signs of getting pneumonia).
So all this is swirling in my brain driving Robert to Day Program. While doing his Word Search, Robert says that he just got a blessing from God.
I go back to listening to my radio program while my brain thinks about upcoming doctor appointments and odd behaviors and Christmas. Oh, yes, Christmas is just around the corner and we need to get the tree up, decorations out of the shed, shopping finished. . . I don’t even know why I listen to talk radio – the chatter in my head is enough to amuse anyone.
Robert tells me he got another blessing from God when he read one of his words.
I pay attention to him now. I wonder if this is an aura before he has a seizure. I ask him why he is saying he is getting a blessing.
“I got a blessing from God when I read that word.”
Well, okay. But WHY? What are you talking about? What does it feel like?
“I just got another blessing from God when I read that word.”
I DON”T UNDERSTAND!
I try another tactic. Do you feel something in your head when you get a blessing?
“Yes.” Ah, we’re getting somewhere.
“Actually, I feel it all over.” Oh. Hmm.
He continued to do his Word Search. “I didn’t get a blessing reading that word.”
So you are telling me you just randomly get this feeling in your body and it is a blessing from God?
I slowly come to the realization that I just may have to accept – on faith – that Robert randomly gets blessings. A friend of mine recently wrote about the small miracles she experiences in a day and I can definitely see those types of things (it stopped raining when I was driving or a stranger was kind or all the lights were green) as miracles or luck or great karma.
I wonder if these blessings are little miracles that Robert is experiencing (while his crazy sister is analyzing him and the blessings and trying to rationally explain them).
Maybe they are just blessings. Maybe he really does feel blessings from God in his entire soul and being.
Wow. I still don't understand it but how awesome is that?
Monday, December 1, 2014
I thought I was going to take a break from blogging for a day or two after a month of posts but I can’t stop!
Okay, this will be short and there won’t be 30 minutes of video to watch (“Phew!” says Other Brother, who hasn’t quite caught up yet).
When I set out to do this video project, I wasn’t confident I could do one for every day. I wanted to but wasn’t sure if I could pull it off (hence, all the disclaimers in the first post). It is important to me to do something every November in support of Epilepsy Awareness Month and creating the videos seemed to be the most personal way I could explain the impact of epilepsy.
In a third of people with epilepsy, seizures are uncontrolled. Robert is part of this group and these are the people I want to focus on. As this group ages, what are the consequences of all those uncontrolled seizures, head trauma, medications and surgeries?
Robert is just one example of what can happen when seizures remain uncontrolled. My focus on this is not meant to scare people who have uncontrolled epilepsy but just the opposite: Let’s focus on these difficult to control cases so we can raise awareness about what epilepsy does to a person over a lifetime. Let’s raise some money so research can be done on this group.
Let’s not forget about these people.
Let’s find a cure.
Let’s not give up.
Robert has not given up – not in the slightest. He prays every day for his seizures to stop. Robert truly believes his seizures are getting fewer and he has hope and faith every day.
Every. Single. Day.
If Robert can have hope every day, if Robert can get up every day and be positive in spite of his legs not working as well as they used to or his labored breathing making it tough to talk sometimes then I can post a video every day for Epilepsy Awareness Month.
The links to each post are below. Please let me know if you have any more questions for Robert or about epilepsy and I will be happy to post a follow up video.
After all, I don’t want my camera to get rusty!