It's hot. It has been really hot for a few days now. I like it. I feel bad for Danny and all the workers Harley is a hell hole but in the summer....I cannot even describe how hot it is in there. But because I am not in there I love the heat. I have spent a few hours the last two days at The Felton Bay Area Swim Club...aka Grace and Jim's. Jed's pool keeps giving back.
On Tuesday before my night class I tackled the room I have been dreading. No pictures because I am lazy. But it is the little room that was the second story balcony, it's right off of our new office/craft room. When we framed up the side of the house we enclosed the balcony, actually we ripped the whole thing down and rebuilt it. I got a guy my dad knew to do it, with Dad's help. Well on the couple of days dad couldn't be there this guy did some stuff that made it leak on the second floor after the framing was all finished. Jed got sick again and we pretty much just stopped. It leaked, we put buckets in there. I did my usual, ignore it and maybe it will go away....doesn't work. Anyway a very nice man, Mr. McCreesh, came and fixed the part of the roof that had been shifted when the other dude did the work. McCreesh fixed the leak but we left the buckets in there. The ceiling is the ceiling of the old balcony, another thing I wish that guy had taken down when he was here. Soooooo to shorten this yarn...the room became a catch all. When I emptied Jed's room a few years ago to paint it we stored bins and boxes of stuff out there. We brought some things back to his room but not all of it, there was still a ton of stuff in the boxes. I went through it all Tuesday......horrible...really. It F'd up my little bubble of denial I need to function. I did finish it. I even have some stuff for the yard sale that was Jed's...ugh. So it's cleaned out, shop vacuumed and of course I had to put a few things back in there. It will be some time before we actually can dry wall and finish it, the electric is not hooked up and I need to find a way to fix the ceiling, I refuse to have a drop ceiling yuck. BUT it is ready and it makes the little office nicer to not have that room all yucked up. It was hell. Makes me sick to think of it. I had a ton of hospital stuff to go through.
On Tuesday before my night class I tackled the room I have been dreading. No pictures because I am lazy. But it is the little room that was the second story balcony, it's right off of our new office/craft room. When we framed up the side of the house we enclosed the balcony, actually we ripped the whole thing down and rebuilt it. I got a guy my dad knew to do it, with Dad's help. Well on the couple of days dad couldn't be there this guy did some stuff that made it leak on the second floor after the framing was all finished. Jed got sick again and we pretty much just stopped. It leaked, we put buckets in there. I did my usual, ignore it and maybe it will go away....doesn't work. Anyway a very nice man, Mr. McCreesh, came and fixed the part of the roof that had been shifted when the other dude did the work. McCreesh fixed the leak but we left the buckets in there. The ceiling is the ceiling of the old balcony, another thing I wish that guy had taken down when he was here. Soooooo to shorten this yarn...the room became a catch all. When I emptied Jed's room a few years ago to paint it we stored bins and boxes of stuff out there. We brought some things back to his room but not all of it, there was still a ton of stuff in the boxes. I went through it all Tuesday......horrible...really. It F'd up my little bubble of denial I need to function. I did finish it. I even have some stuff for the yard sale that was Jed's...ugh. So it's cleaned out, shop vacuumed and of course I had to put a few things back in there. It will be some time before we actually can dry wall and finish it, the electric is not hooked up and I need to find a way to fix the ceiling, I refuse to have a drop ceiling yuck. BUT it is ready and it makes the little office nicer to not have that room all yucked up. It was hell. Makes me sick to think of it. I had a ton of hospital stuff to go through.
Since I did the room my head is a mess.
Sleep is a commodity. Every time I try to sleep all the hospital stuff starts rolling. That whole last stay and all the things I feel guilt about, things I know I should have done differently. Not the fact that he had to go, I know that was not something that could have been changed but just little things. Like times I probably wasn't attentive enough, or I was irritated ( as I write this I want to make excuses for myself-I was tired, I was stressed blah blah. I will not do that) the times I know I should have been better. Yes I know it is pointless, yes I know I cannot change it. What's that stupid serenity poem? Accept the things I cannot change...yeah well easier said than done. Even knowing all that...it still rolls through my head. I think the biggest one was all the drama with the port needle change. I think of that, I'm sure I am the only one permanently traumatized by it ...at least the only one left of the two that would be. All the drama that went down on that one day was more drama and problem than I had had in that hospital for eight years and it all boiled down to one person's ego and bizarre need to "show Jed" they could do it just like Holly...oh please...that was not possible...
I understand they have jobs to do. I understand there are rules and roles but when a child, as sick as my Jed was, wants a simple thing like a specific nurse to do the one thing that terrifies him....there is no question as to what should happen. Jed had two nurses he trusted. BOTH agreed to come do it but because of the nurse we had that day and their need to prove themselves we had the most stressful day. It is the one anger I harbor. More than anything because it was such an easy fix, actually it was all fixed until his nurse threw a temper tantrum and told everyone that he was her patient and no one else was doing it. This nurse's ego and need to prove something made it a nightmare. She won.....she never should have...it was so so stupid and such a small easy thing to fix that I truly hate that nurse and I am so disappointed in myself for letting it happen. and what was the comment from the nurse after it was all over?.."see now Jed you can tell me I was even better than Holly" Jed said "No"..the nurse then said "well next time you need it changed can I do it?" Jed's response....."only if you are the last nurse up here." Such a brave kid. We were told after that that there will be some things Jed will just have to suck it up and do. I think of that now and it is one of those things I will always have guilt over. Those children "suck it up" and "get it done" just about every moment from the time they are diagnosed. If there is something that can be done to ease that...it should ALWAYS be done and the ego of a nurse should NEVER win out over a child's request that can be easily granted. It was such an easy fix and I never should have let it happen. I am sorry Jed...really sorry. Sooo that is what has been running through my head every time I try to sleep. I let him down that day. All those years, all that trauma and that was the only time I ever...ever had an issue with a nurse. sad, and stupid. Other little things I said or did or should have done follow me all the time but that one things haunts me.
BUT...the room is cleaned out and I went through boxes of Jeddie's stuff. Yay me. Someone told me the other day, "you look great more relaxed looking, I never would be able to handle losing my child like you have." Um, so I should look worse? I do look pretty bad...kinda don't care, but it so sounded like..."wow you must not love your kid as much as I love mine." Yes, Yes I know it was not meant that way....but that is the way it sounds to me. Cause hey lady...yeah, I'm handling this really well...ha...come live in my head for a minute....
Ok, I think I feel better now that I have spread my crappiness around to all of you...what's that saying? Misery loves company...not really, misery just likes to share.
Let's move on shall we? So my pool time has been nice, love the heat and the sun and hanging out at the best pool club ever. Hope to keep it up!
My wonderful school friend has scored us an accountant willing to give us an hour or two to get all the financials of the foundation fixed up. I want it all to be as transparent as possible. I don't ever want there to be a question as the where the money is going. Thanks Sharon,,,you rock banker lady.
Savannah has been busy. She has an internship with a local photographer two days a week and she is still working at Lion's Pride....or as Jed called it for years Lion's Surprise. She is also taking family photos for the Poff's on saturday. This week has been filled with Jared's baccalaureate, grad party and graduation. COngrats to you Jared... :) Kyle is home as of today. Yes Savannah is busy.
Danny and I are going to the beach!!!!! YAY! Just for one night but I'll take it. Adam, Tiersa and Livi-Mac invited us to stay with them Saturday night. Can't wait to feel the salt and the sand.
whew, that was a lot...and I feel a bit better.
HAppy Wedding to two of our favorite Hershey people, Lauren from 7west and Tom from clinic...hope it all goes perfectly. I remember when they started dating and then got engaged....sigh...
Another Lauren got married a few weeks ago....Happy marriage to her! She has a cat and Jed would always tell me to go to the nurses desk to find out how her cat was!
I guess I am finished now. Think I will have a Mike's. Love and hugs to all our Hershey family.
Denise and Holly....more hugs
OK you have 6 days to get your crab feed tickets....get on it people!!!! I hope to see many of your wonderful faces there. It is the first official event of The Jedediah Thomas Smith Foundation.....
BUT...the room is cleaned out and I went through boxes of Jeddie's stuff. Yay me. Someone told me the other day, "you look great more relaxed looking, I never would be able to handle losing my child like you have." Um, so I should look worse? I do look pretty bad...kinda don't care, but it so sounded like..."wow you must not love your kid as much as I love mine." Yes, Yes I know it was not meant that way....but that is the way it sounds to me. Cause hey lady...yeah, I'm handling this really well...ha...come live in my head for a minute....
Ok, I think I feel better now that I have spread my crappiness around to all of you...what's that saying? Misery loves company...not really, misery just likes to share.
Let's move on shall we? So my pool time has been nice, love the heat and the sun and hanging out at the best pool club ever. Hope to keep it up!
My wonderful school friend has scored us an accountant willing to give us an hour or two to get all the financials of the foundation fixed up. I want it all to be as transparent as possible. I don't ever want there to be a question as the where the money is going. Thanks Sharon,,,you rock banker lady.
Savannah has been busy. She has an internship with a local photographer two days a week and she is still working at Lion's Pride....or as Jed called it for years Lion's Surprise. She is also taking family photos for the Poff's on saturday. This week has been filled with Jared's baccalaureate, grad party and graduation. COngrats to you Jared... :) Kyle is home as of today. Yes Savannah is busy.
whew, that was a lot...and I feel a bit better.
HAppy Wedding to two of our favorite Hershey people, Lauren from 7west and Tom from clinic...hope it all goes perfectly. I remember when they started dating and then got engaged....sigh...
Another Lauren got married a few weeks ago....Happy marriage to her! She has a cat and Jed would always tell me to go to the nurses desk to find out how her cat was!
I guess I am finished now. Think I will have a Mike's. Love and hugs to all our Hershey family.
Denise and Holly....more hugs
OK you have 6 days to get your crab feed tickets....get on it people!!!! I hope to see many of your wonderful faces there. It is the first official event of The Jedediah Thomas Smith Foundation.....
Another day down another day closer to you......
I am missing you my friend....just missing you so much.
Mommy Loves you...always.
Love K & J
Mommy Loves you...always.
Love K & J
1 comment:
All of us have moments where our kids are supposed to suck it up and we feel guilty about it, no matter the circumstances. All of us.
Big step to go through all that stuff. Proud of you. I hope your head gets to be a better place. xo
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