But since the pandemic and the three vaccines he’s already had, one might think he’d be used to it at this point.
Not the case.
He talked about it all week, mostly by pointing to his arm and saying “shot”.
That really wasn’t bad, really but I could see he was getting more anxious everyday.
The one silver lining for him was that he’d be getting his vaccine at Rite Aid Pharmacy, which is the only place where we can find silver and gold sharpies any time we’re there.
We find them sporadically in other places from time to time, but silver gold and bronze 3 pack sharpies seem to be regular stock there.
So there’s that.
He announced it to anyone who would listen the day before his appointment.
He announced it to me more frequently as his appointment got closer. He also recited his list of post-shot treats that he was looking forward to getting while we were there:
His markers, of course.
Cheese-Its – Spicy
I have to say that for the first time, even though I always fill out my forms on-line … for the VERY FIRST TIME, I did not have to fill them out again and be spoken to as if I am some old woman who has no idea how to “work the internet” and that I must be confused between making my appointment online and filling out the forms and uploading the front and back of my (or DC’s) insurance card.
I could really go on and on about this place but I will spare you.
(This wasone of the times I was ready to lose my mind and they wanted me to tell them what the problem was, but no one has that much time. One of these days – when I get my list together, I will.)
Sounds like we need to do a lot better. Can you please DM us with more information so we can help?
We sat down and waited for our turn. There was only one other person waiting and he was doing his best to pretend not to notice DC repeating:
“I am very nervous about this.”
“I am brave”
“Just a little pinch”
“Won’t hurt at all”
“I am scared”
“Very nervous about this”
But when he broke in to prayer, the man couldn’t contain himself and burst out laughing along with me.
I really tried not to laugh because I didn’t want DC to think that I wasn’t taking his concerns seriously, but praying was THE LAST THING I expected! We are not religious. He must get that from his grandmother.
The man was called in for his vaccine and came out in less than a minute.
He made sure to come over to DC and tell him that it did not hurt at all.
DC repeated that and seemed to be happy to know that even though I had been telling him the same thing over and over gain – but who am I?
We were next.
DC was anxious but the pharmacist knew that. I suppose he heard him going on and on.
He was so fast with the shot that DC just about missed it even though he was looking right at it.
(The thing about DC is that even though he is terrified, he HAS to watch. Most people turn their heads, but DC has to see).
It was over in 30 seconds and in true DC fashion he left the office as if he were a celebrity responding to his fans.
Waving Wildly and yelling, “Good Bye Sir”
Still waving and yelling to the pharmacy in general – “Good Bye Ladies!”
And off we went to pick up the items on his list.
He is absolutely fine. No fever, no side effects and still making sure anyone he sees, knows that he is brave.
It has certainly been a minute since I have posted anything about DC here.
After a year and and almost a half of being at home due to the pandemic, I started back at work a couple of days a week back in July (2021).
I have to admit that I got used to being home and I am finding it difficult managing my time since going back to work. I can’t put my finger on what the problem is, since I was able to keep up with everything before the pandemic while working full time, but this is the way it is – for now.
I am sure I will get back in the groove at some point, but right now I feel as if time management is a long lost skill.
I have so many stories and ideas in my head but I just haven’t made the time to write anything or finish writing anything down.
since Halloween is a staple here at Taking it a Step at a Time, I figured I could at least get that “on paper” (and to be honest, I started writing this post before Thanksgiving and now it is January, mid-February, March, mid-April, mid June, late July, August, early September, October. Time management – Fail) .
This year (2021) was different, but only in the way that DC did not even mention Halloween until the beginning of October. Usually we are choosing costumes in August.
He also chose to wear two “rerun” costumes.
One was a character he had worn years ago, but it was one of those one piece all in one jumpsuits. This year he picked the “real thing”.
The other was an actual rerun costume that I had to buy a million pieces for because there was no such thing (and almost no one knew who he was). It doesn’t look it but it took a lot of work gluing and sewing bolts or cogs (?) to everything.
He was excited when it finally did enter his head and although there was not as much going on as in past years, the activities that were happening, were in person (masking protocols in place or outdoors) and not on a computer screen in the kitchen.
Two of the parties that we usually attend, Camp and Best Buddies, were scheduled on the same day.
Fortunately they were scheduled with enough time in between for us to be able to attend both.
“DC has two Halloween parties to attend today. My very first thought was of the last time we attempted to do a Halloween party marathon. We only made it to the first of the three that were scheduled, due to the Halloween nor’easter of 2011.When I texted *Tonya about trying to do both; her reply was “Double header. That sounds doable. No storms expected?” It’s funny how things stay with you.(Link to that storm here). It’s cloudy today but no storms in sight. Fingers crossed.” Facebook October 23, 2021
There was enough time between to get to both but not enough for a costume change, so DC was Woody for both parties. He was Woody back in 2010, but this was the “real” Woody, according to him.
They had fun at Best Buddies. DC’s buddies did not show up but that is a story for another day.
We waited in line for coffee for the entire run of the party. After which I felt the need to announce to everyone waiting for us that I was the calm one (No details, but just know that I am not usually the calm one!)!
We determined that we’d have plenty of time to stop for lunch on the way to the next party at camp. We decided to stop at a place half way between the party we just left and camp. Historically this place is never busy. Never.
We pulled into the parking lot and as we were getting out of the car, an entire motorcycle club pulled in right behind us. We weren’t all that concerned. We still had plenty of time.
Famous last words…
It was a ‘de-aster’ – as DC would say. We waited a long time for our orders. DC’s was completely wrong and we had to start the whole process all over again and Sally locked herself in the restroom, but we did finally make it out of there and made it to camp.
DC and Salli were not phased by any of this, but Tanya and I were ready for a vacation.
We had to settle for coffee, but this time there were no lines and we were able to sit and relax for a good hour or more. By that time, I could do nothing but laugh at the events of the day.
Trust me. It was much worse than I can describe here.
DC was thrilled by a surprise visit from ‘Ron”.
He found his pumpkin on his own. He did not give up and just grab a random pumpkin with someone else’s number and we had no 9 vs. 6 issues (as in the past with 12 and 21) – it was his number.
(Since it is already October, we have our Halloween 2022 party schedule and Best Buddies and Camp are again on the same day – so we get to do this all over again. We should probably just bring our own coffee for the first party. Ya think?)
There was a new addition to our Halloween activities last year.
A new used book store had opened up in town. I had kept that information from DC for a good year (?) because, you all know that as much as I love how much he loves books – there is just no room for any more. Every open space in our house is full of DC’s books. AAAAND, I did not want to have to listen to him begging to go to the book store any more than I already do, knowing there was one right here in town. I knew I wouldn’t be able to keep it a secret forever, but it wasn’t difficult during the pandemic (yes, I do understand that it is not over, but you know what I mean) since we weren’t going all that many places anyway.
The bookstore along with the other stores in the complex, organized a “Haunted Trail” that went along the sidewalks of all of the shops. It was pretty cool and I hope they do it again this year.
DC opted to re-use his “Time Keeper, Spy Kids – All The Time In the World” costume (yes, we must say the entire title) from a few years back. I was glad because I was pretty proud of putting that one together at the time.
It was fun and of course – there was the bookstore. The secret was out!
On to Halloween Night:
DC’s friend, BB (above in the Spiderman costume) joined us for the first time on Halloween night.
DC’s costume choice? Dimitri from Anastasia.
Yes, ANOTHER guy in a suit.
As usual, no one knew who he was, but he was happy to be Dimitri. I did get him an Anastasia tote bag to trick or treat with to make him more identifiable. It did not do the trick, but that’s okay; one must have a matching Halloween bag anyway (Halloween rule: #2).
They ate pizza at *Coach and *Candi’s house and trick or treated afterward.
They always have a good time together.
So there it is… finally! Halloween 2021.
We’ll be back in a few weeks for 2022.
We are READY!
In case you are curious – Halloween Rule #1 is: Wear as much clothing underneath your costume to keep you warm. NEVER wear a coat OVER your costume.
I am angry that a Covid-denier without a morsel of human decency thought that he knew better than anyone else and went to work ill.
Let us not confuse this with people who may not have been symptomatic right away or symptomatic at all who spread Covid innocently without realizing it. This was a denier.
My brother was careful. He did not travel. He was not out in restaurants or at parties. He went to work and he went home.
I am angry that the last year and 3 months of my brother’s life were spent in and out of hospitals, chest tubes, surgeries, oxygen and suffering.
I am angry for his wife, my sister in law. They have been together since they were teenagers.
Forty five years together and he is gone. What do you do with that?
I am angry that she had to be as strong as she had to be throughout his illness. She was always there for him and she never stopped being strong for him. I am grateful that he had someone so strong that could take charge while also being a huge support to him.
I am angry for my niece.
The relationship between my niece and her father was one that most people would (or should) aspire to. He was determined to and succeeded in becoming a better parent than many of us hope to be or believe that we are. He was her father, her friend, her rock, so much so that he become a father-figure to many of her friends.
I am angry that the last conversation I was able to have with him was about giving me the news that he was being moved to hospice.
But my brother; he was not angry. He was accepting of what was to come.
He told me that he had a good life; an odd life, but a good life. He was at peace with his situation.
And he did have a good life. He had friends … some very good friends and a family that loved him.
There was never any question that he WAS LOVED by many, and he appreciated the time that he had.
But he should have had more.
During what would be our last conversation, the mission he assigned me with was “You’re are the writer in the family. You have to make sure that everyone knows what a great guy I was.”
He was partially joking but still I am here trying to adhere to his last request of me.
I do not even know how to put in writing just what a “great guy” he was. If you knew him; you already know this to be true.
Skip was my brother, my confidant and my best friend in life. Of course we had our ups and downs when we were younger, as most siblings do, but there were far more ups and the downs were nothing that we did not get over quickly – and so few of those, that I cannot even remember what they might have been about right now.
It has been a month since he has gone and I still find myself picking up the phone to text him about something goofy or a conversation I had, or a television show I am watching. It still does not feel real. I am not sure when it will feel real.
But I am supposed to be telling you about what a great guy he was, since I am “the writer in the family”. I do not feel like much of a writer right now. I am still angry and my anger continues to rear it’s ugly head when I talk about it, so I am going to use my sister-in-law and niece’s words to tell you a little bit about Skip’s life. You will see that yes, it was a good life, but you will also see that there should have been more.
(The following was edited to remove last names and specific locations as this blog is normally about my son and our life – where I don’t use DC’s real name, our last name or where we live to protect my son’s anonymity)
Skip was an artisan craftsman known worldwide for being one of a handful of whip makers who still madeAmerican Bullwhips. He was featured in the Discovery UK series “History in The Making,” which focused on skilled craftsmen making historically significant items using the original, time-honored methods.
Skip was a gifted magician, known for his cards and coin sleight of hand. For years he performed as part of the team, Vic and Earl, the Earl being his best friend. For over 30 years, they worked together honing their magic act that evolved and changed over the years. They were best known for their side show routines, particularly Crime and Punishment, which they performed with friend and cohort, Dave.
Skip was also a published author. He had articles featured in the Magic Menu, a Close-Up Magic Periodical for Professional Restaurant and Bar Magicians, of which he was also the art director for during its early years. He was a contributor to the book Magic and Meaning with Eugene Berger, and was a founding member of the Inner Circle of Bizarre Magic.
Most recently Skip worked with his sister Vickie on, “Yeah, That Can’t Be Good” – A Eureka rewatch podcast. Listeners would comment that the episodes in which Skip was co-host were some of the best, due to the fun exchange between Skip and Vickie on-air.
Skip was a man who took pride in all that he did. His day job as a head custodian spanned over 40 years. Retiring from one city, he went on to work for another school district in a nearby town. He went above and beyond ensuring that his building was a clean and safe environment for the students and staff. He not only took care of the building and grounds, but he was also considered part of a team of educators. Skip shared his knowledge and led by example. He did mini workshops on the engineering and design of whips, how to start a small business and design a web page at the high school, as well as, cards and coins for the students at the Middle School.
I miss him everyday.
Donations in his name can be made to DC’s summer camp. Just use “Skip” – they will know who it is for.
(This post is mentioned in my Halloween post – which has also not been completed, so it’s all getting a little bit confusing for me. Please bear with us. It seems as though I’ve lost all time management capabilities over the pandemic.)
Back in January – the day after New Years Day as a matter of fact (which also fell on a weekend) I took DC to the walk in clinic because I was convinced he had a sore throat. He would put his hand on my shoulder and brace himself before he swallowed.
Of course if you asked DC, he would tell you that he was just fine, but I took him anyway, thinking he may have strep or something.
There was a form I had to fill out every morning for his day program, because DC does not really answer questions properly. Upon arrival, DC gives them the form, his temperature is taken and noted on the form and his arrival time is noted.
It asks the standard COVID questions – fever? coughing? sneezing? exposed to COVID or exposed to anyone that has tested positive? traveled out of state? etc…
A “yes” to any of these questions means the person will not be allowed to attend and is sent home until you speak with the nurse or a negative test can be supplied to the program.
Bottom line; the person is sent home.
A sore throat at the time was not one of the symptoms on his program list or any COVID symptom list that I could find, so I was not concerned about that. I just wanted his throat checked out.
The doctor gave DC a strep test but also gave him a COVID test. She said that many people had begun presenting with a sore throat at that time.
(Sore throat was later added to his work form and other COVID symptom lists I have come across.)
Now, what I could have done – since this all happened over a holiday weekend, was say nothing and send him to work the next day since his strep test had been negative and “sore throat” was not on the list at the time. (I say this because I have heard from a few people about relatives of theirs doing just that – getting exposed, being tested and going to work, school, etc. while waiting for the results before mentioning it to anyone).
But… I am not a jerk so I did what I was supposed to do. I notified his program, his driver and the other person who rides in the van with him. I also cancelled a few appointments that I had scheduled because we were both supposed to quarantine.
When his test came back negative, I sent the results to his program and he was allowed to go back.
This was back in January 2021, before vaccines, before many things had opened up.
May (Spring) had come around. DC was fully vaccinated as were many others at his program.
It was May. May means allergy season.
DC has seasonal allergies. He has been with this program since the age of 22 (he is 31 now). They know this.
As I said above… not being a jerk – I do understand that everything is different due to COVID, even now that things are loosening up a bit.
A few weeks back, DC’s allergies kicked in full force. I always know it is allergies because it’s like he turns around and there is a red stripe under his nose. Just like that. It happens that fast.
I had just started giving him his allergy medication the week before so it hadn’t taken full effect at this point.
The next morning, he woke up fine – no sneezing or coughing (no fever as I do check his temp every morning). He went to his program, but I guess being outside all day took it’s toll.
His driver went to pick him up in the afternoon and texted me that the staff told him to tell me that DC was congested after lunch.
Now, because COVID, I was not sure if they wanted me to keep him home or what. Let me just add that relaying messages to parents via the driver, should not be happening. We have talked about this before. It’s not that our driver can’t be trusted to deliver a message, it is just not the way things should be communicated. It would be like a teacher sending you a message through your child’s bus driver – but that is a whole different issue.
I called his program right away to find out if this would be a problem the following day because I couldn’t honestly answer “no” to coughing and sneezing. I spoke with someone who told me that his boss was “not available” to speak at the moment.
I told her about the message and asked if this would be a problem if he came in the next day. She said it was not – they knew he has seasonal allergies.
Now, I called the program when DC’s driver texted me from the parking lot at pickup, so DC was not home yet. When he did arrive home – he was a ‘de-aster’ (DC-Speak), just a mess.
I decided I should keep him home anyway on Friday. Maybe a couple of days inside of the house would give his allergy meds some time to kick in. But because the protocols had loosened up (at the time), I was not sure if he needed a test before he came back, because I was keeping him home.
I called and left a message with his supervisor. I called again when I did not hear back from her. I also emailed.
When Friday was over and hadn’t heard anything, I left a message with the supervisor’s supervisor, hoping she would get it first thing on Monday and call me.
I didn’t want to send him and have them send him home, but I also didn’t want to keep him out for no reason because we had a few appointments coming up and would have to be out for them.
I spoke with his driver and he said he had no problem bring him back home if they decided he could not stay on Monday – but I really wanted to talk to someone to avoid all of that.
I decided not wait until Monday, in case they did require a test. If I waited until Monday and then have to wait for the results, he would have to stay home until the results came in, so I took him for a test on Saturday, just to get a jump on the results.
I called the supervisor’s supervisor on Monday morning as DC was on his way to work.
I called again at 10am after DC had arrived, at this point just to let them know that he had been tested in case there was a problem and that I was sure it was just allergies.
Finally at 10:30 (when I called back again) I got to speak with the supervisor’s supervisor, who began reading me all of the rules and protocols for allergies – which do not appear on the sheet I had to fill out each morning or really anywhere except whatever she was reading from.
I asked just how anyone was supposed to know any of this?
I told her just how many times I had called since Friday afternoon.
She told me that his supervisor is on medical leave!
How would anyone know that? Why had the other person I spoke with originally not mentioned that?
Her response? HIPPA Laws!
Me: I don’t need to know what’s wrong with her but it would be a good idea if someone told people that she will be out. Does anyone have access to her email because you all ask us to email and there could be lots of messages sitting there that no one is seeing.
Her: No, none has access, but you’re right, someone should have access. I’ll bring that up at the next meeting.
Really? This hadn’t occurred to anyone until I just brought it up?
She did say that the person I spoke with gave her my message on Thursday but, and I quote – “I was busy doing a project, well not really a project, but I was busy doing my job and did not get around to calling you back”.
So basically the Allergy protocols that are not published anywhere except in whatever she was reading from meant that he really never needed to be tested – and that I put him through that for no reason.
A simple call back would have eliminated all of that “stress” for him.
I would think calling be back would be part of her job, wouldn’t you?
Edited to add: Protocols have changed since I began writing this post, but COMMUNICATION from the day program being the point, I decided to finish it.
I may have mentioned this already, but back in March our state’s vaccination schedule removed any exception for disabilities and went to an age only schedule.
My age came up on March 1st. It took me three days of constant searches and 1000 websites to schedule my two doses. Yes, the 1000 websites is an exaggeration, but at the time – it sure felt that way.
On March 31st. I was fully vaccinated.
The way the schedule was set up, I did not think that DC would be eligible until mid to late May.
Before April hit, the state abandoned that schedule and opened vaccines up to anyone over the age of 16 beginning April 1st.
Yes, this was great for DC, but the downside was that the three days I spent looking for mine would now be multiplied because EVERYONE, not just a certain age group would be trying to book an appointment all at the same time.
8 days, and another 1000 websites later, I found him an appointment for April 28th. I booked it, but decided to keep looking for one a little bit sooner. At this point DC’s day program sent a few emails about DDS (Department of Developmental Services) clinics that were being set up specifically for people with disabilities and fortunately I was able to book an appointment for him on April 14th.
Given the fact that I had been very concerned about DC’s fear of vaccines in general, this option put my mind at ease a little bit. As it was set up specifically for people with disabilities, I knew they would have more patience with him if he fought the process.
After all of that searching and his vaccine was finally booked, I received a call from DC’s DDS caseworker asking if DC was scheduled for his vaccine and to let me know about these clinics (yes…he’s pretty worthless on a regular basis). I told him that I had received that information from his day program after 8 days of searching and yes, he does have an appointment.
He apologized for not getting this information to me sooner – he had a pinched nerve which <insert sarcasm font> I guess, made it impossible for him to use the phone, or email <end sarcasm font>.
I had been talking up the vaccine to DC since I received mine. I told him how important it was for “making ‘the sickness’ go away” – and you know how much DC wants ‘the sickness’ to go away. It was his birthday wish after all.
I have to say, he did really well. He got a little bit anxious, but nothing like when I used to have to bring his dad and Doug with me to his physician for extra muscle when he had to get a vaccine or a booster shot.
He got to go to the Dollar Store (which just happened to be two doors down from the vaccine clinic) and to outdoor- dining- lunch afterwards. We hadn’t been to a restaurant for outdoor dining since the day after Thanksgiving.
DC hasn’t been to Barnes and Noble (one of his favorite places) in well over a year. He’s scheduled for his second vaccine on May 5th. I told him that we could start going some places two weeks after his vaccine. I explained that he still would have to wear a mask etc.
I just went to put something on the calendar and noticed an addition… He figured out two weeks to the day!
DC’s friend BB, had received his vaccine earlier that day at the same clinic, which meant they would both be going back on the same day for vaccine #2.
We decided, as a little extra incentive – to meet for lunch after their second shot. As it turned out, that extra incentive was necessary because DC was so much more anxious when we went for the second shot. I do not know why, as he did so well with the first.
While I was trying to calm him down, I mentioned that BB had already been there to have his vaccine and he was just fine. The woman administrating the shot asked if BB was DC’s brother. I told her that he was DC’s best friend. She then told DC that she was the one who gave BB his vaccine earlier and BB was just fine.
That seemed to help and he calmed down right away.
We waited our 20 minutes, went to the Dollar Store (of course DC hadn’t forgotten that it was right there) and went to meet BB and his mom for lunch.
We decided on a place that we knew had outdoor dining, but when we arrived the place was pretty much empty and as it had just started to rain, we opted for indoors. We hadn’t been inside of a restaurant since February for 2020.
DC had absolutely no after effects from the second vaccine. BB’s mom reported that BB was just extremely tired (which was exactly the way it went for me after my second.)
Needless to say, he was extremely proud of himself.
DC’s triumphant return to #BarnesAndNoble after more than 14 months! I felt as if there should have been balloons and streamers when he walked in!
I will be the first to admit that I can get carried away with DC’s birthday. Much like Christmas, it was a long time before he actually “got it” and when he did, he was all in and so was I.
When he got to be an adult, I stopped calling his birthday get-togethers “parties” because party meant things like party bags, games and/or some form of entertainment. We began calling them birthday dinner with his friends. He was okay with that and really looked forward to it each year.
Of course this year would be different. Like last year, he would not be able to have a birthday dinner with his friends. he was disappointed because… his friends.
I was disappointed because it was his 30th birthday and that, as they say is a big deal.
As you have read… DC was even more excited than he usually would be about his birthday because he really misses “Going Out To Eat”; and what is a holiday or special day without going out to eat?
Bringing his “Out To Eat” favorites home is something that he REALLY looks forward to since this pandemic began, so he was in “breaking my sanity” kind of excited mode.
That being said, I wanted to make it special – as special as it could be in the living room with just Doug and I in attendance.
It also goes without saying that this is all a just ploy to force you to look at DC’s birthday photos (you knew that).
He started his day wearing his annual birthday shirt and his new birthday socks.
I went with his second favorite of late – Sleeping Beauty for birthday breakfast.
And of course, a whoopie pie because who doesn’t need a whoopie pie to brighten their day?
Off to “work” he went and I got started decorating. I have to admit, it was fun. I haven’t done any “party” decorating in a very long time.
I wrote about his love for Anastasia in my last post. As I also said in my last post; Anastasia items are not easy to find. Party supplies are non-existent – I had to wing it.
I decided to use “Together in Paris” as the theme and Paris party supplies were not very hard to find at all.
But as I do… on the day I decided that the three backdrops and plain pink table cloth were not enough. I started cutting up the paper plates to liven up the table cloth.
There was going to be only three of us, so how many plates did we really need?
Then I went on a hunt around the house looking for anything I could use to add to the effect. The Glinda costume that had been hanging in the garage for may years was sacrificed for it’s pink glittery material, that I used to cover the lamp and wrap around the edge of the table.
No worries! It was no great loss. After many wears by many different people, it was not in good shape any more. It had also been taken in when I wore it a very long time ago; and not very well. Plus, the garage did not do it any favors. I was really wondering why it had still been hanging there and not thrown away. I suppose I just got used to seeing it there and stopped noticing it.
Right now, I am sure you have questions (and might even be shocked) by one or both items I just mentioned…
Let me clarify for you.
Yes, there was a time when I actually had to take in costumes so they would fit me! Shocked, I know!
I am not nor have been a sewer. When I say, I took something in, it was with a needle and thread (not a machine) and it was more like grabbing material in certain spots and sewing it up. It was not a good look, but usually I could get away with it on a costume. Now-a-days I can’t even see to thread a needle.
All that DC had been talking about was a cake with BIG red roses (this guy loves frosting as much as his mother does). He showed me online images of cakes with large red roses on a daily basis. His only other stipulation was that his cake needed to be bigger than mine had been.
After searching “Anastasia” for days hoping to find something I could use as a cake topper, I decided on a tiara and found an Eiffel tower candle.
Simple; but it made the point.
The baker did a wonderful job.
(After DC jamming the tiara on my head far too many times, the following day – I found a home for it on his Tangled doll that stands in the corner of his room. I am not tiara material.)
Needless to say, he was surprised when he came home to all of the decorations.
After he went through his “coming home” routine which had to be followed even on his birthday, I told him to go upstairs to change into his party shirt. He looked at me sort of funny because he was already wearing his birthday t-shirt. I told him there was a new shirt on his bed just for this occasion.
He went upstairs.
I heard a squeal!
I could not find a “Together in Paris” shirt that would have arrived in time, but I was able to find “Once Upon a December” (you know… the song he tortured Camp with all summer?).
Have you ever gotten really excited about something in the hopes that your child will be as excited as you think he/she will be – and then they are not? I cannot even count how many times that has happened.
Well, he was just as excited about the whole thing as I hoped he would be!
We ordered pizza and wings from the place where we usually have his birthday dinner with friends. Of course, we also had Anastasia playing on the television throughout the festivities.
I hid all of the gifts that had been arriving for him from over the past week from family and friends, so he would have a big pile to open on the day.
Of course there were markers, jelly beans, goofy socks (which is now his thing), princess dolls and… the Anastasia and Dimitri dolls.
He was not so impressed with Anastasia because it was “Skating Anastasia” – not in the movie, but it was the best I could do. I did get the squeal for Dimitri, though.
He also received a case of white paper –
because, you know –
I was thrilled that I could make his 30th something to remember for him. He was happy with every single thing, but he still missed his friends, which became more apparent when he blew out his candles.
Normally when DC blows the candles out on his cake and makes a wish, I have to ask him what his wish was (yeah, yeah, I know – you’re not supposed to tell). I usually get an answer that he has just made up at the time of the question because he is usually not really making a wish, he’s just doing theater.
This year, I did not have to ask…
He announced “I wish the sickness would be over” and then blew out the candles.
That was something he said quite often at the beginning of this pandemic and every once in a while over the past year, but I never imagined it would be so front and center in his mind that he would use it as his birthday wish.
That is my wish too, DC.
We’re getting there.
Happy Birthday to this guy! I can’t believe he is 30 today! THIRTY!!! It’s been a hard year and although he is disappointed with having to spend another birthday without his friends; he’s making the best of it! So proud of this guy! Happy Birthday, DC! Love you ‘magly’ – March 22 Facebook
We are now heading toward celebrating DC’s 2nd pandemic birthday.
I feel awful because he is still waiting for his make-up birthday with his friends from last year because who knew back then we would still be in the midst of a pandemic. At the time I thought we would be able to celebrate “properly” sometime over the summer. Boy, was I wrong!
Making it even worse is that this will be his 30th birthday. Thirty is a pretty big deal and before all of this “sickness” started we were hoping to have a big bash with his friends like we did when they all turned 21 within weeks of each other.
This year, celebrating my and his birthdays seems to be extra important to him and of course it is …
He has not really been able to go anywhere for fun in almost exactly a year. All he really looks forward to is getting takeout a couple of times per week.
He already has his “takeout dinner” planned – pizza, wings and of course, cake.
The pizza must have pepperoni and cheese and the cake must have large frosting flowers; preferably in red or pink.
His birthday list is the same, or close to the same as it is for every birthday, Christmas or monthly Dollar Store visit:
29 markers (a change in number since the 72 markers he wanted for Christmas)
Yes, I know that these are the things that make him happy – and he will get them, but I am always looking for something that will really blow him away. It is not easy and I do not always succeed.
DC has always loved the movie, Anastasia. He has been watching it since it came out in 1997.
Over the last year or two it has become his go-to favorite, over and above all of the Disney princesses that he loves so much. Even more-so since the pandemic began.
The book is always in his hand and at the top of the book pile on the kitchen chair. He reads it every night… aloud before bed. He acts out scenes (very well, I might add) on a regular basis. He regularly informs me that John Cusack is the voice of Dimitri and Meg Ryan is the voice of Anya.
Of course Angela Lansbury is the voice of “The Grand Duchess, Marie, not Mrs. Potts and not Miss Price or Jessica”(because he must also tell me who they played before but are not playing now) and Bernadette Peters as “Sophie, but not Angelique (Beauty and the Beast Enchanted Christmas), Lady Larken (Once Upon a Mattress), The Witch (The Original “Into the Woods”) and The Stepmother (Cinderella). He will also add that John Cusack is not Jessie in Toy Story because that is his sister.
This movie is 24 years old and is not a Disney movie (although believe it is now considered a Disney movie?), so there was not much Anastasia merchandise to be had at the time it came out and even less now, 24 years later.
One of those accidental gift finds…DC wants pretty much the same things all of the time (or something so old or obscure that I have to resort to eBay). It’s hard to find him something other than the regular things on his list that will really make him happy. He wanted an Anastasia book (he already has a few). While searching to find one that he didn’t have, I came across a music box that plays “Once Upon a December”, the song that he haunted his virtual camp music class with all summer. Score!!!!!! He’s been playing it all morning!!! I also found an ornament for him and one for Mrs. H as a reminder that she hasn’t had to read Anastasia with him since March due to the pandemic.
He still plays that song on the music box every night before bed.
So…. in order to make this birthday special, I went on a mission to find an Anastasia doll. Not an easy task since as I said, the movie is 24 years old.
I searched and searched and…
I found one!!!!! ONE!
Not only did I find the one Anastasia but I found Dimitri!!!!!
There was only one of those as well and being collectors items or not readily available ….. Ka Ching.
(It is ridiculous just how excited I was getting and still am, about finding these things)
I also came across a set with Anastasia AND Empress Marie (I confess that I am confused as to whether she is called Empress Marie or Grand Duchess Marie – but whatever). There was only one of those as well so I hemmed and hawed and went back and forth with it. I knew he would love having both of them but I also knew that Dimitri was just as important. I finally talked myself into it and decided I would save that set for Christmas.
During this Anastasia “spree”, I also came across a necklace… Together in Paris. Again, because Anastasia merchandise is so hard to find, I bought it without really thinking about it.
After the purchase was made I started wondering just what I thought he was going to do with it. I was thinking that maybe we could attach it to his key chain or his jacket zipper. I did not know, but then I had a thought.
DC loves to give me gifts. Although it does not always occur to him to want to get a gift for me, he gets really excited and takes full credit for any gift I receive that has his name on it. Now I rarely wear jewelry. I actually only wear it when DC presents me with a new “heart necklace”- his go-to gift when he is involved in picking the gift out, but I thought he would be really excited to give me the necklace for my birthday on Saturday.
Instead of just wrapping it up and putting his name on it (I have done that) I thought that I should let him make the decision himself. Doug is taking him to the Dollar Store this week so he can get his new supply of Band-Aids and markers and also to pick out something for me. I gave the necklace to Doug with instructions to show it to him and to see if he would like to “give it to Mom for her birthday”.
He may just opt to keep it for himself, I don’t know.
Either way, in a few days I will have a new necklace or DC will have a new keychain.
Whatever happens with the necklace, I am sure that DC will be over the top excited with his gifts when his birthday rolls around!
Is it weird that I am this excited about finding these things?
During all of these searches, I discovered there is/was a musical. I knew nothing about this. I haven’t researched it any more than that but, I will. If it is recent, it will certainly be something to look into when this pandemic is over.
It has been a minute since I have written anything. I would not have imagined, being home for so long that I would not have the time to write. I cannot really say where my time is going, but it is. Also, our internet has been torturous over the last few months and not having the patience to wait for it may also have something to do with not writing (or reading). Our carrier says their system is overloaded with so many people working from home, which does not make any sense to me. Wouldn’t it have been even more over loaded back last year when absolutely EVERYTHING shut down and EVERYONE was home?
DC went back to his “job”(day program) in October. It was a hard decision for me to make.
Back in May, his supervisor/staff called me and asked if I would consider sending him back to work on July 15th. I told her “I can not make that decision now. We don’t know what is going to happen over the next month or two.”
In early July I received an email from DC’s caseworker telling me that his supervisor emailed him that DC would be back in mid-July and we needed to have a meeting to go over protocols! I let him know exactly what I had said to his supervisor back in May and now that the numbers had spiked I was not even considering sending him back.
We had to have a meeting anyway to discuss what types of protocols they had in place so I knew what was going on when I did decide to send him back. His supervisor called me a few days before the meeting and the July 15th subject came up again.
Supervisor: I am sorry if I misunderstood. I was surprised that you wanted to send DC back in July.
Me: I didn’t. I told you I could not make that decision at that point.
Supervisor: Yes, I understand. That is why I was surprised that you said you wanted to send him back.
Me: I didn’t say that.
Supervisor: I know but I was surprised that you were willing to send him back.
Me: I wasn’t.
Not only did the conversation not make any sense but it felt as if she thought if she said that enough times I would believe I actually said that!
We had our meeting. We talked protocols. I explained to both his caseworker and his supervisor that I was not comfortable sending him back this soon.
Caseworker: I understand. I agree. That is how most overprotective parents are thinking (yes, he actually said that while agreeing with me).
We decided to check in again in August to see if anything had changed.
We had that meeting in August to discuss a September date. This was not engraved in stone, if things got worse. I asked how many days he could attend.
Supervisor: As many days as you want.
We ended the meeting with a September date in mind. Before the meeting ended his supervisor said, “I have 4 more meetings this week so I don’t know how many clients will be coming back. I will call you to let you know how many days he can attend and we’ll schedule another meeting before that.
????? I guess, “As many as you want” really did not mean as many as I wanted.
She never called.
In August, with numbers being down, I started letting DC go to the grocery store with Doug. This eliminated the anxiety and constant calls to Doug about the grocery list. Unfortunately, there was a spike in September and I had to stop the grocery store trips and I also decided (even though I never got that call) that he would not be going back on the date we had discussed at our August meeting.
About a month later and after the date we had discussed in our August meeting, his supervisor called again. What did I think about October 1st? At this point, numbers had begun to level out so I was willing to talk about it.
We had another meeting close to the end of September and decided on an October 1st start date.
I was still panicked and on the fence. There were predictions of spikes come winter and I was torn between just keeping him home straight through and letting him have a bit of normalcy – even if it turned out to be just a month or two.
As we decided on October 1st, I asked again – “How many days can he attend?”
Supervisor: As many as you want.
Before the meeting ended his supervisor said, “I have 3 more meetings this week so I don’t know how many clients will be coming back. I will call you to let you know how many days he can attend and we’ll schedule another meeting before that.
Sound familiar? Does this sound like a vicious circle to you? I did to me.
Have a meeting – Wait for her to have other meetings with other clients to determine the days he can attend – Have another meeting – Wait for her to have other meetings with other clients to determine the days he can attend – Have another meeting – Wait for…
At this point I just “insisted” that he be able to attend 3 days. I didn’t care who else she was meeting with. She was meeting with me now and we needed to resolve this as this circle could just go on forever.
He started back 3 days a week on October 1st. There were/are only two riders in the van that takes him to his job. Everyone is masked and windows are cracked.
As difficult as it was for DC to get used to wearing a mask back when mask wearing was first encouraged, he is really good about it now. So I wasn’t worried about him wearing a mask all day. The number of clients at his program is low and they are split up into even smaller groups. Temps are taken in the parking lot each morning.
Because (as I have said before) he always seemed to be in-between loving staying home and the anxiety of missing work and activities and wanting to go back to work but missing staying home; he has developed a couple of new “things” since he’s gone back.
It started on October with stars. He drew and presented me with stars. Many, many, pictures of stars at all hours of the day and night and no matter what I was doing. Cooking, washing dishes, eating dinner or working on the computer – I had to stop whatever I was doing to make a big deal about the stars he had drawn for me. When he could not get to me in the shower, I would find them outside the bathroom door.
Just two days worth..
I am not talking about a picture here and there, I am talking about a LOT of pictures! Since it all coincided with his return to work, I was worried that something or someone was bothering him there, but I could not really get anything out of him. He seemed happy to go everyday and even begged to go when there was an unexpected cancellation. When that happened, he interrogated me all day long as to when exactly he would be going back. So work does not seem to be bothering him at all.
I am thinking this was just his way of transitioning back.
After Christmas, the stars stopped and he moved on to hearts. Same thing… all day… everyday.
I will not stop trying to figure this out but for now, I guess it is just going to be his new thing.
Other than that, we are trying to keep him busy. Camp and Best Buddies have done a few virtual events.
The biggest surprise was his winter guard team deciding to have a virtual season. I really thought we would be skipping another season due to the pandemic but they came up with a way. They are doing a fantastic job of it and he is loving it!
Our state has decided to distribute the vaccine by age only – taking disabilities out of the mix. I was extremely disappointed because I had hoped DC would have been eligible in February.
At this point DC will not be eligible until May.
I received my first shot last week. My second will be at the end of the month. I have been talking it up to DC since. I showed him where they gave me the shot and told him that it did not hurt a bit (it really didn’t). I need to get him comfortable with this because the vaccination sites are just that… sites and not his doctor’s office. I am afraid they will not be able to take the time with DC as his own doctor, would.
I mean, we have passed the point where I had to bring 2 people with me and I, they, the doctor and nurse had to try to hold onto him so they could give him whatever shot he was getting.
But… it has been a very long time since he’s had to have a shot so I am a little bit worried. I am going to keep talking to him about it so when the time comes, he is ready and not “very nervous about this”.
Hopefully, we will all be able to get back to something close to normal sometime very soon.
As you may or may not know, DC LOVES Halloween. He looks forward to Halloween just as much as he looks forward to Christmas.
We really don’t know what Halloween will look like this year but I better think of something because DC is READY! I don’t know if he can face another cancelled activity or disappointment this year.
The thought of Halloween did not kick in as early as it usually does with him, but once it did, it was all I heard about.
It was hard not being able to give him any answers. I could tell him that there probably wouldn’t be the many parties that he is used to attending, but other than that – I could not say what would happen on Halloween night.
I did try to prepare him for not being able to trick or treat – just in case.
But we also needed to find some other Halloween themed activities because IT was October and October is all about Halloween from beginning to end.
As it turned out, we were able to find a few Halloween activities that were outdoors and/or drive through.
(Warning: We have come to the potion of the program where you are forced to look at my Halloween photos… You knew it was coming.)
We made our pumpkin purchases. DC loved the pumpkins with the warts. I did too.
Pumpkin Town: This was a drive through and it was really cute. Perfect set-up for a pandemic, but I think it is something we will do even after all of this is over (whenever that may be). DC especially loved the big pumpkin in the middle of “town”, which of course reminded him of Halloween Town. (Disney).
DBD Day: DC, Doug, BB and Doug’s friend went out for “Boys Day Out” (which has been renamed Doug, BB and DC’s <DBD> Day, but since there was another attendee, we stuck with the old name this time) at the corm maze. Masks were worn and dining was outdoors.
So what can I say about Camp that has not already been said? Just as they did with on-line summer camp (you can read about that here), they went above and beyond for this on-line party.
Normally the camp parties begin with a pumpkin hunt and the painting of the found pumpkins. I wondered what they would do to replace the biggest part of the Halloween party.
Around 8pm the night before the party, I received a call from the camp director asking if I was home.
“We’re in your driveway”
The director and assistant director came to deliver a pumpkin, paint and other goodies for the party the next day! DC was totally excited to see them at our door! These people drove around delivering supplies to all of the campers that RSVP’d! Amazing!
Now… maybe I should have known this, but I “attended” the last board meeting via phone (I have not been to a board meeting any other way since the pandemic began, because I don’t want to bring DC to an indoor meeting).
I was listening to the meeting via Doug’s phone and all of a sudden, I could not hear anything. I kept yelling “Hello” but there was nothing. Thinking he had lost the connection, I called back.
I could hear for awhile and then nothing again.
More yelling and nothing.
I called back a third time and Doug said “Why don’t you just forget it. I’ll let you know what happens.” So I thought he was just having a hard time with his phone out at camp.
Later, he told me that he could hear DC making noise in the background so he muted his phone (apparently he does not understand that when he mutes HIS phone, he is muting things on his end, not mine and he would not believe me when I tried to explain this to him).
So he is muting his phone and because I can’t hear anything – I am yelling “Hello, Hello”. He can’t figure out why his mute isn’t working so he kept hanging up on me! If he had told me that he could hear DC, I would have muted MY phone and that would have worked out perfectly. I honestly did not think DC was being loud at all.
Someone other then me needs to explain this to him.
Please and thank you.
DC only chose two costumes this year because we knew most of the other parties he normally attends would probably be cancelled.
He chose the Genie from the new Aladdin.
So when we bought the costume, he did not want a blue face. Today, an hour before the online party, he decides he wants a blue face. I always buy powder eyeshadow for Halloween face colors (I don’t wear eyeshadow so it’s not like I have any hanging around – just what’s in the Halloween makeup box) and I was only able to find a container with just a little bit left. It’s hardly a blue face but it will have to do.
There was pumpkin painting and movie watching and music. DC broke into dance at one point. They had a fantastic time.
Salem: We haven’t been to Salem in years. Fortunately we have been so many times that we did not miss going to the regular museums or stores. It was nice just to be there – to eat outdoors, visit a few outdoor places and visit DC’s once favorite bookstore (due to the pandemic, we had to make an appointment and only so many people could go in at one time – that was fine with me).
Note: The crowds you see in two of these photos were people waiting to get into stores. We did not have to walk through them. There was plenty of space for distancing on the right of these sections.
ARC Drive-Up: The ARC that DC attends many activities with during a regular year, scheduled a drive-up hot chocolate and goodie bag event,
Just something quick for all of these people who have not been to an activity since March.
Happy Haunted Hollow: Another drive-through event (which I believe is an annual thing, but usually a walk through).
Mrs. H stopped by today to drop of Halloween treats for DC. He was so happy to be able to see her today (he hasn’t seen her since March, when the world closed down). He was also happy for the treats. Last week his Aunt Lisa dropped off a Halloween bag of treats, including a new package of fake mustaches. Then we have the multiple band-aide packages that came in for him from my friend Amy in GA. (You know how Amazon takes one order and ships it in many boxes on many different days? – Well that shipping technique worked out just fine with DC). I am thankful for the people who understand just how important Halloween is to this boy and helped to make it a little more special for him this year. 10-30-2020
We did not have a new costume for this, so I ventured into my costume closet and was able to put together “Castiel” and “Bobby” (Supernatural) out of other costumes and regular clothes.
The trench coat was from his “Twin Peaks – Agent Dale Cooper” costume from a few years ago. We had the wings because he was going to be the “Teen Angel” to my “Beauty School Drop Out” for a party in the Cape that was cancelled due to the pandemic back in April.
I think the only thing I had to buy was Bobby’s beard. I suppose I could have asked Doug not to shave for a few days but, you know me…
My niece commented that Doug’s “Bobby” was spot-on. While I take full credit for all costumes (he really doesn’t know who he is dressed as. I guess all of those Supernatural conventions did not stick) I thought he also looked like the creepy lumberjack version of Dexter.
On Halloween morning, we still did not know what we were doing Halloween night. Much of the town had announced earlier in the month that they would be giving out candy, but then the pandemic numbers began to rise and people were beginning to rethink the situation.
I knew I HAD to bring him somewhere in costume. We planned to visit his Grandmother early, before it got dark because I did not want her to have to put her porch light on, since she was not intending on giving out candy this year.
By mid-morning I received a call from Tonya, Salli’s mother, who had called around their neighborhood to see if anyone would be out giving candy. She got enough affirmatives to make it worthwhile. Trust me, DC would have been happy with one or two houses, as long as he was able to do it in costume.
Knowing that she would not be giving out candy and not wanting her to have to go out and get anything, I told her that I would bring something for her to put in his bag.
Grandma: Oh no! I’ll pick up something. I want to.
(My mother would spend all day, every day in Stop and Shop if she was able.)
Me: Okay, but don’t get carried away. Really, just a piece of candy to put in his bag.
Grandma: Oh, don’t worry.
(Please note the size of the “gift” bags. This is not getting carried away.)
As we were driving home from my mother’s at 4:30 – in broad daylight, I noticed a whole lot of people out in their yards with their candy tables and firepits already set up and kids already walking around in costume.
Panicked, I called Tonya because I thought I had missed something. Did they announce that Halloween would begin earlier? Did I miss this announcement? I asked my neighbor who was out with her candy, but she just said she was getting anxious and came out early. I told her that she was not the only one out early.
Fortunately Doug had already arrived to give out candy at my house while we were out. So he got himself set up in the yard with his candy grabber in time for a bunch of kids to come by.
My other neighbor was confused and asked “Don’t they usually trick-or-treat when it gets dark?”. I didn’t have an answer for him, but they got ready to give out candy early as well.
By the time we left for Salli’s, we had already gotten more kids than we have had in years (there is no rhyme or reason for the amount of kids or the absence of kids in any given year). Doug did tell me later, that no one else came the rest of the evening.
DC and Salli made the rounds and went enough places for both of them to be happy. We were missing Candi this year because they were dog-sitting out of town, so Halloween was almost normal, but they missed their friend.
I have to say that I liked the earlier hour and the fact that most people were outside giving out their candy.
The Candy: I had already talked to DC about the trick-or-treat candy. I bought candy for him to have when he got home. There was enough in number and of an assortment to keep him happy on Halloween night.
I told him that we would put his trick-or-treat candy away for about a week (because of “the sickness”). I was not wiping down all those pieces of candy.