Tuesday, April 26, 2016

His Title Remains

His Title Remains Firmly Intact…..

I had to take DC for bloodwork for the second time ever, this week. Because of his seizure medication, bloodwork will become a regular part of his life. I am thankful that due to the type of seizure medication that he is on, he will not have to go for bloodwork every month or even close to as often as some of his friends do – small favors.  After all of the chaos during his last visit and even though he realized in the end that it did not hurt at all, I was worried that the ‘not hurting’ part was not going to be what he remembered. The ‘needle’ part is what makes him anxious.
I put his bloodwork off for a couple of weeks because I was scheduled for a physical myself which normally includes bloodwork. I was hoping that we would be able to go together so he could watch me and see that there is nothing to be afraid of.
We talked about it for weeks. I reminded him that it did not hurt. He seemed relatively calm – until we arrived and were in the waiting room. His reaction was just like, if not worse than it was the first time.
The people at the lab were nice enough to let us go together. I wasn’t sure if they remembered him from the last time or if it was just about him losing it at the reception window, or both – but they obliged.
Still, I was not sure if me going first was THE best way to go. I was on the fence. This could go very wrong. On one hand; he could watch me and understand that it does not hurt – on the other hand; THE NEEDLE – he would be watching the needle.
I was still debating in my head when we were called inside and at the last second I decided to go first. He watched every move the lab tech made very intently. He was interested, not fearful at all. When it was his turn, he sat in the chair and insisted on watching the whole thing. He saw the needle and he watched the whole procedure without making a sound. Even with all of the prep beforehand and watching me, I never thought it would go that easily.
The second they were finished, he lost control – jumping, stimming and yelling. Maybe it took a lot out of him to keep himself in control for the needle and he just had to let go when it was over, I don’t know. I do know that even with the before and after commotion, this time was so much easier than the last.
In my opinion, his “Sir DC the Brave” title remains firmly intact….
From August 2015:
“They call me Sir DC the Braaaave”needle“and history someday will rave…….”
DC had to go for blood work today. He has never had to have blood drawn before. They did take blood in the ER after his first seizure but he was so “out of it” that he did not give them a problem about it at all.
DC has always been very healthy so his doctor and I had decided to put off blood tests unless it was necessary because having blood drawn would entail making an appointment at the hospital to have him put out – an all day affair. He is big and he is strong. Even when he was younger and had to have a vaccination, I had to bring reinforcements to the Doctor’s office. Most of the time we had, his Dad, Doug, me, the assistant and the doctor in the examination room. No one could hold him, no one. It was exhausting and even with all of us trying to hold on to him, the doctor would eventually have to resort to chasing him around the room until she had a semi-good shot at sticking him. I often wondered if he ever actually got everything that was in the needle.
Well, we could put if off no longer. Due to his seizures and medications, he had to have blood drawn.  He did let the paramedics put an IV in during his second ride to the hospital and he was much more alert that time. Hoping that he remembered this, I decided we would try to go to a regular lab. I talked to him and explained what they were going to do. I also explained that if he did not let them take the blood at the lab we would have to go to the hospital to have it done. He did NOT want to go to the hospital again.
He was all right until we got to the waiting room at the lab. He was in full-on anxiety mode – yelling “I do believe in fairies, I do believe in fairies, I do believe in fairies.”, jumping up, yelling and making his noises quite loudly.
We got him into the drawing room and into the chair and at this point he had calmed down enough that I really thought we would be able to do this – until he saw the needle.
Let the battle begin.
The technician called for back up and fortunately Doug had come with me as reinforcement. Still no one could hold him. It had gotten to the point where as great as the staff was, I knew they could not do this much longer. They gave it one last try with Doug actually laying across his free arm and all of us holding the “needle arm”. As soon as he saw the needle go in he stopped fighting and let them finish. Sometimes the anticipation is worse than the actual event.
He was fine. He was proud of himself. “I did it! I did it!”
When we walked out of the room all eyes were on us from the now very crowded waiting room. I am sure they wanted to see who had been causing all of that commotion. I could not care less. He did it and that was all that mattered. DC, with a wave and a smile yelled “Good-bye Ladies” and we were off.
In the car on the way to breakfast before heading to work, DC was so proud and not wanting us to forget it,  began singing a song. I recognized it from when he was young, but I hadn’t heard it in years. I could not even remember where it came from:
(his name has been muted out of the video)
(A reenactment, of course)
“They call me sir DC, the brave,
and history someday will rave
I’m valiant and daring, and noble of bearing
Courageous and gallant, a mountain of talent.
No wonder folks curtsey and wave
I’m Robin, Sir DC, the brave.”
Later I asked him what movie he remembered that song is from.
He was brave, very brave. I am happy he is so proud of himself. Hopefully this means that the next time might go much easier.
Now next up…. the MRI……
That should be something!
(video begins at 2:44 – at the song)

Saturday, April 16, 2016

The Ball - revisited

Cinderfella Revisited

We are spending the weekend in the Cape, celebrating Mary’s birthday. Mary is one of my oldest friends, Alison’s mother – the matriarch of my favorite family.
While we are enjoying our weekend with the best people in the world, I give you a post from last year at this time….
I think this may have been the title of an old Jerry Lewis movie, so if I haven’t dated myself with “Gimme a head with hair”, I am certainly dating myself now….. but on with the story.
We just came home from a weekend trip to Cape Cod. As I mentioned in my last post, I was invited to the birthday party for the mother of a very old friend, Alli. I spent quite a lot of time at their house when I was young so it is always an honor to be invited to these birthday events.
The Cape is a good 3 1/2 hour drive (4 1/2 with me in the car) so again, we opted to make a weekend out of it. There was plenty for DC to do at the hotel even if the weather did not cooperate – it did, eventually. We arrived on Friday afternoon and on Friday night, we had dinner with Rhoda who had flown up from Georgia.
Saturday was a busy day. I met Rhoda and Alli for breakfast. DC and Doug went for their breakfast earlier because DC could not wait until 10:00 to eat breakfast, “second breakfast”, maybe but not first breakfast. They went directly to the indoor pool afterwards. It was nice to be able to spend some time with my friends and catch up without interruptions.
After breakfast DC, Doug and I went out for a drive just to see what was around in that area. We came back to the hotel around 1 and I went down to the banquet room to help set up for the party. We finished about 4.
Back in the room, it was almost time for me to start getting ready for the party. DC and Doug were busy making plans to go to the bookstore (yes, DC did spot a Barnes and Noble while we were out earlier) and out to dinner.
Doug is not one for big parties like this and DC, as much as he loves to dance and eat, would not have made it through the whole thing. As I could almost guarantee there would be no wings on the menu he was happy to go to dinner with Doug. So I would be attending the party with Rhoda.
Needless to say, I did not see a lot of DC on Saturday.
At about 11:30, the party-goers were starting to thin out. Under direct orders from the birthday girl, I went back to the room to bring DC down to the party for a visit. There was no doubt that he would be awake. He wouldn’t go to sleep before I came back and I figured that Doug probably needed a break from “Mom is coming back soon?”.
He had a good time. He visited the cupcake mountain and the candy buffet and had a Shirley Temple with Mom. He danced for quite a while, by himself and with two beautiful ladies.
IMG_9130When the party was over and DC and I were walking back to the room, he started reciting a story. This was nothing new, he loves books and stories and knows almost all of his stories by heart. He did spot the “Ballroom” sign on his way into the party, so I knew there would be more than one Cinderella reference on the way back to the room. He started his scripting (or what I thought would be scripting) and I realized that this was different. Speaking very clearly, like a narrator, he said:
Once upon a time –
The best boy in the whole world came to the ball.
and noooooo one knew who he was.
He ate cakes
He ate candy
He ate golden jellybeans
and danced
all night.”
After he told this “story” a second time, I said “Oh No! Should we go back to look for your shoe?”
“No”, he laughed and called me silly.
Here’s the thing though…. as many books and stories as I’ve heard him recite over the years, he never veers away from the original stories. They are told as they are – and in his mind, as they should be. As much as he loves his stories, his books and movies and as much as he may relate one to another or to a place or an event, he almost never relates them directly to himself or I should say, he never adds himself into the mix.
He not only altered the original story, but he altered it to include himself….
he got the shoe joke…..
Post posting update:
DC made an appearance at the party as he did last year.
DC Dancing
He also told me a story on the way back to the room. It was a slightly adjusted version of “Cinderella”. Although he did not insert himself into the story this time, he did add:
“And she just ran out of the ball for no reason. She was so rude.” 

Sunday, April 3, 2016

Understanding Death

Understanding Death Is Not Like a Disney Movie

My step father passed away this week. DC adored his Grandpa and the feeling was quite mutual. When I had to look for a few old photos for the service, there were two that I was determined to find. The first was of DC on a bike with his Grandpa running along side him, holding him up.
The other was from my brother’s wedding when DC was about 5 or 6. The photo was from the hotel room before the wedding. I was standing off to the side and there was DC and his Grandpa, in their tuxedos standing in front of the mirror, arms out to the side as if they were saying “Taa Daa! Look at us”.  As I searched and searched for this photo I remembered standing there watching this moment between them in front of the mirror and thinking I was about to take THE cutest photograph that had ever been taken, when my mother walked right through the shot. I had missed the moment with the camera. I realized that this photo that I had been searching for existed only in my head. All these years later, it is still right there in my head as if it was yesterday; as if I had actually taken the picture.
I was not sure how to explain his Grandpa’s passing to him. He has never lost anyone close to him before. I was not sure that he would understand. I have tried many times and in many different ways to explain this to him in the past, when people we knew had passed on,  but I was never sure that he really understood.
In his Disney movies, characters may die but usually someone comes along to give them a kiss to wake them up. (I truly believe that this was part of the reason that DC insisted on kissing him on the forehead more than once at both the wake and the funeral a few days later). As many times as I have tried, I have never come up with a good, understandable way to explain this to him.
That afternoon when he came home from work I made the attempt to tell him what had happened before we left to go to my mother’s house. I told him that Grandpa had been very sick and he was very old (I added that so I would not frighten him into thinking that if he got sick, the same thing would happen to him) and because he was just so sick, he died. I specifically did not use the phrase “passed away” so as not to confuse him with different words.
“Do you understand what that means, DC?”
“Grandpa loved you very much and he did not want to leave you. It was not his fault”
“This is not like your movies. He will not be able to come back, like Snow White. He died like Cinderella’s father. Do you remember that Cinderella’s father did not come back after he died? I am sure he wanted to come back but he couldn’t.”
His Grandpa had been suffering from dementia for the last few years and was well past the point of recognizing anyone, so DC really had not seen him in quite awhile. He would ask for him every once in a while when we went to my mother’s and Grandpa was not sitting in his chair. We explained to him that Grandpa was sick and was in his room at his new home where there were lots of people who could take care of him. I am not sure that he ever really understood that and I sometimes got the impression that DC just thought that Grandpa was upstairs taking a nap.
Both DC and I had birthdays in March. We had planned more than once to get together with my mother but she was sick herself for a good few weeks and did not want to infect DC or I with whatever she had. When we arrived at her house that night she brought out the gifts that she had been holding on to. DC opened his card and as he always does, read the card in it’s entirety out loud. Then he reached the signature and read: “Love, Hugs and Kisses, Grandma and Grandpa”.
He stopped and he looked at me. I could see he was a bit confused.  Then he said “Grandpa ‘is’ died”.
Honestly, I did not expect that. He really had been listening, paying attention and possibly understanding a little bit of what I had explained to him earlier. I told him that Grandpa wrote the card on DC’s birthday a few weeks back and that he was very lucky to have this card that Grandpa wrote for him before he died.
(Of course, Grandpa was too sick to really sign the card, but DC really did not need to know that)
This seemed to make sense to him and he no longer looked so confused.
On the way home that night, I mentioned to Doug how I still was not really sure that DC understands what death means and how much I really want him to understand it.
Doug asked me why it is so important to me that DC understands. Why couldn’t  I just let him believe what he believes, the way he believes it and leave it at that?
I understand that thought process. I understand wanting to protect him from anything bad or sad, I do. So why is it so important to me that he does understand?

“Because one day I am going to die and I want him to understand that it is not something one wants to do.  I never want him to think that it was my choice. I NEVER want him to think that I just left him.”