My skewed perception of things.

During a conversation the other day, a friend asked me how much I'd gotten done in my dehoarding process. When I started listing everything, she gently interrupted me to clarify. What did I have left to do to finish dehaording the house?


Upstairs, (which is really just the main level and not actually up), I still have the porch and garage, as well as the study. I guess I should add the storage shed in there, too, but I did dehoard it fairly well last Spring. I just want to go through it again and purge it of the things I know we will no longer use. Downstairs, the boxes of books need to be unpacked and put away in the workout/book room, and the big room that will be part craft area/part family room still needs done. 


She asked me what it felt like to have so little left to do overall. I was a bit stunned. Not because of what she asked, but at my reaction to her query. I was dismayed at all that I could see that still needed done. It didn't help that it felt as though I haven't gotten a thing done since Mom left last April. Granted, I have had a lot going on. The wedding. The hospitalizations. The guardianship. But I felt like I failed, because I just haven't acomplished a single thing for months.


I chewed on our conversation for a few hours. I just couldn't get it out of my head. Then a thought popped into my mind. I remembered the 40 boxes of paperwork that I worked so hard to sort in October and the first part of November. It was such a relief to know that I had actually accomplished something monumental in the last several months. Granted, I still have a monumental climb in front of me, but at least I'm starting from over halfway up the mountain this time. I'm not at the bottom looking all the way up. 


I thought about a lot of things during and after our conversation. I was a little surprised to realize that aside from the study and the remodeling that needs to be completed in the bathrooms that I have successfully dehoarded the main level of the house. Granted. There's light cleaning and dusting that needs to be done, but maintenance is to be expected. It took me a bit of guard when it dawned on me that none of the rooms I've already dehoarded need more than a picking up and a thorough dusting. None of the upstairs rooms should take more than a couple or 3 hours to be thoroughly cleaned and ready for the holidays. 


Now, if I could just stop procrastinating the whole getting started thing, I'd be in good shape.


:::shrug:::


Maybe tomorrow.

Maintaining. My grip on reality.

Ha. 


Like I've had any real grip on reality lately. 


My anxiety meds had to be upped, because my stomach decided to do the roller coaster thing and not turn off once again. I've had to take the faster acting anxiety meds more frequently than I would like, so I'm hoping the full effect of the higher dose kicks in soon. I hate feeling like this.


I recognized one of the major factors to my anxiety the other day that, for whatever reason, I couldn't see before. Adding to the stresses of the guardianship situation, is the big unknown that begins in January. 


Since Hopper is 21, she is aging out of the school system, and she graduates next week. At this point, she's been on a waiting list for services since she turned 14. Unfortunately, she may still be waiting another 5 years. Granted, the wait could be over in 6 months, but we won't know until we know. You know? So it means that she will drop from going to her day program 5 days a week through the school to going only once a week through private pay. 


I'm afraid it's going to be hard on her. She loves going to 'work', and even though we're trying to prepare her for what it's going to be like, I don't think it will really sink in until she's stuck at home most of the week. My stomach turns when I even think about it, because I don't want it to be hard on her. After 18 years in the school system, there's bound to be an adjustment. Who knows? Maybe she'll handle it better than we're imagining.


In the meantime, I've been trying to keep my mind off things and trying to keep busy. I've got some deep cleaning to do for the holidays, and we've still got to decorate and put up the tree, but I've been struggling with it all. I need to get back on my Vitamin D again, since  don't have regular exposure to the sun this time of the year and I'm feeling the effects of SAD. Hopefully, the D will kick in and help me kick this thing.


I helped Scooter clean her bedroom last week. It wasn't too bad compared to what it used to be like, but it was the worst it's been since I got it dug out at the beginning of this journey. So we cleaned it from top to bottom. Dusted. Vacuumed. Swept the floor. Rearranged the toys. 


It took less than 2 hours total. That was exciting and encouraging. It used to take the better part of a week to get it clean, and it would quickly revert back to chaos within a week or two. To know that her bedroom has been maintained since last May is amazing to me. I spent so many hours over the years trying to get to this point that it still seems a bit unreal that I'm 'here'. 


It's probably because I'm not 'here' everywhere else in the house. Still, I'll take what I can get.


Yesterday, I got her winter clothes out of the plastic boxes in the closet and put her summer clothes away. Then we went through her closet and dehoarded. Once again, I was surprised at being done within 2 hours of starting the job. I bagged up a kitchen trash bag full of clothes that will be picked up tomorrow. 


The bag included several clothes that Scooter no longer wears, but the best thing is that I was ready to get rid of some clothes from my childhood. I wore some of them when I was in junior high and others when I was in high school, but I no longer feel it necessary to keep them around. I realized that Scooter will never wear them, but best of all, I realized they no longer had a hold on me.


After Scooter left for school today, I did go back into her closet and got rid of 5 more things that I know she'll never miss. She had chosen to keep them, but she hasn't worn any of them in over a year or had outgrown. I know she will never even know. I could have probably taken even more out without her knowing, but I only took the things I knew for sure she would never wear again.


One was a Winnie the Pooh sweatshirt that she wore to school at least once a week about 5 years ago, and she wore it around the house all. the. time. She loved it , but she only wore it on one occasion last year, and I know that it was time for it to go. There was a little tutu looking skirt that she's outgrown in the last few months, but she has another one that fits, so it won't be like she even notices it's gone. There were 2 long sleeved t-shirts she wore under other clothes to add an extra layer when it was cold, but we just got her several light weight long sleeved thermal shirts a few weeks ago, so she doesn't need them. And lastly there was a little black shirt that had been Bugster's when she was much younger. Scooter's worn it less than a handful of times in the last few years. 


Time to pitch it!


We'll go through the clothes again when I put her winter clothes away and get her summer clothes back out of storage in a few months. Hopefully, we'll be able to get rid of a few more of her unused clothes then. 


I'm hoping to get the house ready for decorating this weekend and maybe even get the tree up. 


I'm thinking little bit of Christmas should chase the SAD away...

Not much to report.

The anxiety meds are doing their job, and I'm feeling much less anxious and better able to cope with all that's going on.


However, we've been sick with the crud, which has kept my progress at, well, under ideal. I'm not sure, if this is the flu or not. We've been totally exhausted. Absolutely no energy at all makes it more than difficult to accomplish a single thing. We haven't had high fevers, but we have been feverish. Then again, we didn't get high fevers when we had the swine flu a couple years ago, either. :::shrug::: It's enough that we're miserable. I guess we don't need a name for it. 


::::cough:::: 


::::cough::::

::::sniffle:::: 


::::sneeze::::


To top things off, my extended family has been going through an awfully lot lately, and my heart hurts for all of them.


In the last 6 weeks or so a sister in law lost both her parents, a niece lost a pregnancy, 2 different cousins lost their husbands, and a brother in law lost his brother. And while none of it directly affected me, thoughts for my loved ones weigh heavy.


We've been a bit nervous for Bugster. She quit her job a few weeks ago, because her paychecks were bouncing. Job + bouncing payroll checks is not a good combination. One employee was behind 4 paychecks. Another was behind 6. I just can't imagine working for 8 and 12 weeks without pay. Bugster stayed longer and more loyal than either Hubster or I would have, but she's just can't stand the thought of someone else being put in a bind. We're glad she's out of there, but we can't help but worry for the kids a bit. It's a parent's job, right?


I did get back in touch with a friend I'd lost touch with about 8 years ago. It was wonderful getting caught up, but she's had it really rough. Just a lot of family problems in that period of time, including losing her fiance just weeks before their wedding. My friend doesn't have computer skills and is totally intimidated by them, so she took his daughter's word for it that her fiance had died out of state. Except that he hadn't. He's alive.


I would want to know under the same circumstances. And I would want a friend to tell me, rather than finding out from someone else, so I felt like I had to say something. It was one of the most difficult calls I've ever had to make, and I hope I never had to break news like that again. As hard as it was to hear, my friend was thankful I cared enough to tell her. I just hope she heals quickly. 


I debated long and hard before telling her. I polled a few friends and family about whether or not they would want to know. Everyone I asked said they would want to know, if they were in her shoes, but some would not have told her to spare her feelings. How about you? Would you have wanted to know?


On a different note I've made a little bit of progress. I've finally frozen all but the last cookie sheet of tomatoes. I'm just waiting for them to ripen, although I may try my hand at fried green tomatoes. I haven't had the energy to try them just yet. At this point, they'll just be fried green tomato chips, since the tomatoes that are left are just tiny. Still. They'd probably be good along with some fried zucchini as a snack or on spaghetti. 


No word yet on the guardianship front. I'll be calling the attorney this week to see where we are in the process. 


And once again I'm so very thankful for the anxiety meds, since just writing the above sentence made my stomach start with the flips again. 


Have I mentioned we're ready for 2012 to make its entrance?

Immobilization. It's not as fun as it sounds.

What I didn't mention in my last post from a couple of weeks ago is that I've really been struggling lately. I said that we had a really long and stressful day getting state IDs and flu shot and all the week before and made 7 pints of salsa. And I mentioned that I was still getting things done.

However, my effectiveness as a person slowed to almost a complete halt during the days after that outing. Dehoarding stopped. Most house work and laundry came to a screeching halt. Yep. I have been pretty worthless.

The night before we spent the day getting the documentation for the girls that was needed my stomach started churning. Flipping. Rolling, if you will. Nonstop. Like I had a hamster on a wheel in the pit of my gut. It didn't stop at all for over 2 weeks.

You know how your stomach jumps when you see a baby almost fall headfirst down the stairs? Or you see a ball roll out in front of you in the street while you're driving, and you notice a small child in your periphery? Or you witness an accident caused by an erratic driver? 

Yeah. That kind of flipping.

When my stomach did finally stop flipping it was short lived. As in about 18 hours or so. And then it started up again. I felt like I was going to jump out of my skin. Even when I was expecting a call, I'd nearly jump out of my skin when the phone actually rang. I felt like I was trembling all the time, but when I would hold my hand up to check to see, if it was shaking, it wasn't. I was just shaking on the inside. 

I made an appointment to see my doctor, but I had to cancel the first one due to bad roads. The last thing I needed to do is get in a car and drive on ice in the condition I was in. I knew I needed help, and that I was having a problem with anxiety. I also knew that I didn't know how to make it stop on my own. That I needed help. Because when your stomach is flipping and turning all the time like that, it's hard to concentrate. To eat. To sleep. To function.

The doctor confirmed that I was suffering from anxiety. The only other time I've had anything even close to this happen was when I had a reaction to a medication a few years ago. I have to wonder, if that reaction made my body more susceptible to anxiety. I guess it doesn't matter. I have it now. 

We met with the attorney on Monday. Plunked down the $500 for the court costs, but we won't actually have to pay the attorney's fees. Hubster signed up for some sort of legal plan through the company he works for last year, and it pays the attorney. And although we could technically do this on our own, we'd much rather have the expertise a lawyer can lend to the situation. I shudder at the thought of what the anxiety would be like, if we weren't going through an attorney!

I have no doubt that the stress is due to the whole guardianship thing, and I believe it will go away once everything is completed. I am thinking I'll likely start 2012 in a totally different state than I'm in right now, but until then I'll stay on the meds the doctor prescribed. They've already helped tremendously, and it's been less than a week.

Thursday, Bugster came over, and we made salsa together. Once we tasted the salsa I'd made awhile back, we realized that it wasn't going to be enough to get us all through the winter. So we made a day of it and canned 14 pints and 1 quart, since we couldn't find the last of the pint jars. We're set until next Fall when we'll likely make more from the tomatoes, peppers and onions we'll hopefully have in our gardens. 

I'm still behind on housework, but I know I'll be able to get it done in plenty of time for the home visit. I won't have all the dehoarding done, but I'm confident that we'll pass with flying colors. I'm sure we'll be granted guardianship, because the best place for the girls to be is with us. In their own home. With their family. And when I look at each part of the guardianship process individually, I know we'll do fine. But the whole of it is more than overwhelming.

Hubster asked me out on a date the other night. We need time to reconnect and get away from the stress of it all, so I jumped at the chance. Hopper and Scooter are going to spend the day with Bugster, Hubster and Frank after we all do a little shopping together.  We haven't all been out together in months. In fact, Scooter just started back to school this past week after the whole fiasco of the hospitalization, head-to-toe rash, and weeks of steroids to get the allergic reaction under control. So we need this as a family. All of us.

I'm ready for some decompression. 

I dream of Rip Van Winkle.

I'm making progress and have gotten a lot done in the last week, but I feel like I'm in serious need of a couple weeks' worth of sleep. Just straight through for two weeks. 

Ever feel like that?

I don't see it slowing down enough to sleep for 2 weeks straight anytime soon, but that's okay. I'm getting things done that need done. I'm making progress.

Friday of last week we got our flu shots, got state ID cards for both of the girls and got a bank account set up for Scooter's direct deposit for when she starts getting SSI payments. Then Monday I got Scooter's application in for SSI and got replacement social security cards ordered for each of the girls.

I worked on paperwork a bit for a couple of days and then headed into the kitchen to work on tomatoes from the garden. I got 9 dozen tomatoes washed, blanched and peeled to further process. 

I made some into a base for homemade chili for when it gets colder outside. I made chili  a few weeks ago with tomatoes from the garden, and we couldn't get over how much tastier it was than when I've used fresh tomatoes from the grocery store. There really was no comparison, and I want to recreate it as much as possible when I make chili again when it snows. I'm actually looking forward to the colder weather just so I have an excuse to cook a batch up again!

Several pounds of tomatoes were diced, along with onions and bell peppers to make salsa. I used my new canner for it, and I have to admit it was fun breaking it in. I'll really put it to good use next year when we have more to our garden than tomatoes, but I'll be happy with an abundance of maters next year, too. The rest of the tomatoes were frozen whole to be used as I need them over the course of the next few months. I'll definitely be using them to make homemade tomato soup. There's nothing that tastes quite as fresh and clean and yummy as that, and I can't wait!

We've been babying the tomatoes we had left in the garden for the last few weeks as it's gotten colder outside, and they were actually still blooming. Unfortunately, it got cold enough that the plastic we had up didn't keep enough cold out, and the leaves started to freeze, so today we cleared out the tomato beds. Thankfully, we only lost a couple dozen tomatoes to the cold, but it was hard to take. The tomatoes are so tasty I hate to lose a single one. Still, there were several dozen on the plants still, so the loss of the 2 dozen is just a drop in the bucket. There are plenty more.

Tomorrow, I'll be wrapping the greenest tomatoes in newspaper and putting them in a box in the garage where they'll stay cool. I have it on good authority, (Thanks, Mom!), that I should have fresh tomatoes ripening for several weeks, and I may actually still have some left in late December or even early January. I'm really hoping that's the case. It would be great, if we could get them to last that long!

 

I have to be honest. I am looking forward to having the tomatoes done and out of my hair soon. It will just be a relief to have them done, so I don't have to worry about letting them go and them being ruined, because I got busy and put them off too long. 

I'll have to do something with the pumpkins from the garden, too. We had so many tomatoes that the pumpkins didn't go crazy, but we did end up with 4 small ones. I am hoping to make a pumpkin soup with one and bake the others, so I can make them into pies or pumpkin rolls for the holidays. I've never tried pumpkin soup before, but I want to try it. I think it will be fun. I'm just glad pumpkins last awhile, so I can finish up the paperwork before getting to them. 

We brought the two pepper plants in that still have little peppers on them. I'm hoping I can get them to grow indoors, so I can harvest them and use them in the chili I'll make a bit later. I'm not worried, if they don't do any more growing, but I'll be thrilled, if they do. 

In the meantime, my bed is calling me from the other room. It's been a long day, and I doubt I'll get a full 8 hours tonight, let alone a full 2 weeks. 

One can only hope...

And let the stress begin...

After countless hours of sorting paperwork and getting rid of more than 40, (I really should have counted them), boxes I finally found the birth certificates I've been searching for weeks to find. I only have 2 or 3 boxes left to sort through that have come in from the garage. Granted, I'll have to re-sort some of the stuff I've set aside to scan or to keep, but it's mountains less than I had a few weeks ago. I can handle it.

I also still have all the paperwork that was already in the study before we started bringing boxes in from the garage to sort. Thankfully, there are only about 7 boxes or so. There is a chance that I will actually be able to get through the rest of the paperwork by the end of October. That would be huge. But, I have other things happening, so I won't be disappointed, if I don't finish it all up by then. I know I will be done with the paperwork and have the study completely cleared out by Thanksgiving. 

Again. Huge.

In the meantime, we will be putting the social security card found earlier and the birth certificates to use and start the process of getting guardianship of the girls. 

That's right.

Guardianship.

Apparently after a child with a developmental disability has finished with high school, their parents are no longer in charge of their medical, financial, or other such life-changing decisions. They're treated like any other adult. They have the right to refuse medical treatment. They have the right to spend their money as they see fit, so if they want to do nothing but buy cookies and nothing else, they have that right. 

So this summer when Hopper broke her leg, if she had not still been in school, we could not have signed for her to have surgery. If she had not consented to it, the doctors would refuse to treat until they had the court's okay to treat. The delay that getting a court order could take could mean the difference between life and death. And we get that. We will never allow either of the girls to go through something so horrible.

However, it still somehow feels wrong that a parent has to get guardianship to be able to make the same decisions for their disabled children that they've made since they brought them home from the hospital as babies. It's a bit of a slap in the face. It feels as though your parenthood is somehow being siphoned away, and you will now just be called, 'guardian'.

Thankfully, it's just a legal term. 

We will always be the girls' mommy and daddy.

And nobody can ever take that away, no matter how hard they might try.

So for the next couple of months while we go through getting permanent guardianship of our own children, the stress level is going to go up. It will involve attorneys and court visits and home visits and . . . 

Yeah.

So let the stress begin. 

We're ready. 

Er. 

Almost.

October is a gypsy...

I'm still working on paperwork. I still haven't found the birth certificates nor the other social security card, but I'm still looking. Broke a tooth in my sleep while I was grinding away the other night. Dental appointment tomorrow.

In the meantime, I've come across a bunch of school papers from 39 years ago from when I was in the second grade. I didn't even remember who my second grade teacher was, and I'm not sure I ever would have, except one paper had her name on it. I can tell she was a tough teacher based on the number of red marks on my pages. 

It's been a bit odd seeing my middle name on some of my school work, because it's spelled wrong. In fact, it was spelled wrong until I was twenty. When I was born the nurse didn't think my parents had the right to spell my name the way they wanted to, so she corrected it to how she felt it should be spelled. Can you imagine anyone being so arrogant as to think they had the right to do something like that?

My parents had no idea how to fix it, or if it could be fixed. So I asked about it when I was at the courthouse so many years ago getting our marriage license. I found out that misspellings on birth certificates can be fixed at any time. Free of charge. So I surprised my folks and had it fixed. Granted, it was twenty years late, but they appreciated it. 


Even though it took awhile to get used to spelling it right, the way my parents intended all along, I am so very thankful I asked for it to be corrected. It felt right. It was right. Looking at my name spelled the way it was when I was little looks so...odd. So wrong. It's funny how it looked right for so many years, but now it no longer does. 


Oh well. 

I do have something that does look right. Right now, even. I came across this cute little poem about October in my school papers, and I thought I'd share it...

 Happy October

I'm still alive in spite of being buried under a ton of paperwork.

I'm still working on paperwork. I've been putting in 8 to 14 hours a day on it, and I've made huge progress. The boxes of papers in the picture I posted earlier spanned an area 5 wide, 3 deep and to the ceiling in the back 2 rows. At this point, the boxes take up an area 1 deep, 1 wide, and the stack only goes about 2/3 up the wall. 

Unfortunately, the picture didn't include all the paperwork that needs to be tackled. There's more current stuff, (from the last 5 years or so), on the other side of the study. It needs to be addressed, so the study can be fully organized and functional.

Several people, including The Hubster, have suggested ordering the birth certificates again. And while it might be easier in some ways to order them, I'm hoping I will have found the ones I'm looking for by the time the new ones would have arrived in the mail, anyway. Because I can't just go down to the courthouse and pick them up, since the girls weren't born here, it would take several weeks for them to make an appearance. I know we ordered a new birth certificate for Hopper a few years ago, and I'm sure to come across it in the newer stuff that still needs sorted. I still need to locate Scooters, but for the life of me I can't remember, if I ordered a new one for her then or not. I guess I'll find out soon enough. 

While I was sorting through boxes this weekend, I realized the main reason I don't want to order the birth certificates is for totally self-serving purposes. If I order them, I won't have to finish the paperwork anytime soon. And I really, really, really need to get through this paperwork. It's been hanging over my head and weighing me down for far too long. 

I actually came across paperwork from the bank account I had in high school!

Did I mention how long it's been holding me back??

Far. Too. Long. That's how long.

As a result of the hours I've been putting in on paperwork, I haven't been online much at all.  

I've ignored my friends and family. 

I've failed to return emails. 

I've neglected my blog.

And unfortunately, I don't see that changing in the foreseeable future. 

In the meantime, I will continue to update the sidebar with the shredables count. 

I hope to be back to blogging daily, returning emails, and interacting with friends and family again within a week or two... 

Definitely by Thanksgiving.

I am also hoping to be finished once and for all with paperwork, so all I need to do is maintain things. 

Here's to hoping...

Don't think I'm going to make my deadline, but at least I have pictures.

*Every cancelled check and check blanks for bank account that we closed 26 years ago before we got married.


*My metal Pinocchio lunch box from grade school.


*The test results from Hopper's DNA karyotype that changed our lives so completely 21 years ago.


*Unopened Sesame Street and Highlights For Kids magazines from 15 to 18 years ago.


*Card from Hubster's grandmother from 1997. It still had the $5 she sent for us to buy ice cream in it. We did.


*Birthday card from Hopper's 4th birthday from her uncle that still held the $5 he sent her. That was 17 years ago.


*Box from mug Hubster and Bugster got me for my birthday when I was expecting Hopper. Mug said, "I Y my job like I Y having my finger slammed in the car door." with an adorable note from Hubby on the inside flap.


*The beginning lines of a story Bugster started to write when she was about 10. "There was a boy named Jack, who didn't know the difference between a Life Saver and a nickle. He was a very lonely little boy." And that's where it ended. I would have loved to have read more.


*Bugster's beginning music book for French Horn and her beginning, intermediate and Christmas music books for flute.


*Plastic glasses from a comedy show we saw in our first year of marriage.


*The boxes from Hopper's first set of hearing aides.


*The assembly instructions for the wheelchair Scooter used until she was 7.


These are just some of the many, many things I've found in the boxes of paperwork I've sorted through the last couple of days. 


I set a goal to get through all the boxes of paperwork in the study before the end of September, but I'm not sure, if I'm going to make it or not. The whole situation with Scooter set me back a bit, so I will probably have to be okay with finishing up in October instead.

After

And just so you don't have to go searching for the before picture, or clicking on a link to see it, I've uploaded it below.

Before. 

In the meantime, I can see the back wall of the study where the boxes were stacked 3 deep and all the way to the ceiling. The first row is completely gone, and the second row no longer reaches the ceiling, but I still have a long way to go. 


I sent 4 more bags of shredables out the door this morning after sending 7 bags out yesterday for a total of 25 grocery bags of preshredded for the month of September. I've also sent 4 huge black contractor bags of trash out that consisted of paperwork I could throw.


I've been able to let go of things I've hung onto for years in the hope that I would eventually fix them. The most liberating of these items has to be the story books that were torn up. I always felt such a huge obligation to repair them to the best of my ability and practically laminate each page with tape, so they couldn't tear them again. I did manage to do this a few times with some of the books over the years, but more often than not, they were just tossed in a box. I am sure some of the missing pieces of pages I never found ended up in someone's digestive track somewhere along the way. I didn't check too closely.


I'm just glad that I was finally able to dispose of them guilt-free. 


I've come to the conclusion that I'm not responsible for everything that goes wrong. It's not my job to fix it all. I don't have to save everything associated with our children's lives to be a good mom. 


It's better to throw it away than to throw my life away worrying about it. 

Paging Mr Man. Mr Red Man?

Two weeks ago, when Scooter had to be admitted to the hospital with the fear of a blood infection, they had to put her on some strong IV antibiotics. One of those antibiotics is called Vancomycin. It can cause what is known as Red Man Syndrome. It is basically an intense flushing of the body due to a histamine response to the antibiotic.


We were told it's not necessarily an allergic reaction, but she needed antihistamines each time she got a new bag of antibiotics, so we could try to get the redness under control. When she was discharged from the hospital that Wednesday, we noticed that the redness was worse. We asked, if she could have more antihistamines, but there was only an order for it to be administered by IV, and her IV had already been removed. We decided not to wait for the doctor to write more orders, and just took her straight home and got her
started on them at home.


In spite of being on antihistamines every 4 to 6 hours, the redness was getting worse and was looking more like a bad rash. Her poor stomach felt like leather and sandpaper at the same time. She was covered over her entire body, except the lower arms and legs. She was miserable. The rash was hot to the touch, it stung, and it itched like crazy. She started steroids that Friday night to try to get the rash under control.


Ha.


By Sunday, the rash started crawling up her neck and onto her face and scalp. We took her into the urgent care clinic. The doctor said he figured that her body was overwhelmed with antibiotics that didn't have an infection to work on, and it just couldn't handle it. He said to continue the steroids and antihistamines, stop the oral antibiotics she'd been sent home on and to have her see a dermatologist as soon as we could. 


We got an appointment for Tuesday and waited while the rash got worse. 


The dermatologist said that he thought it was an allergic reaction to the antibiotic she'd been sent home with from the hospital. He also said it could still be the Red Man, as there are instances when it has a delayed reaction and gets worse about a week out from the original episode. (Her reaction started within minutes of being on the Vancomycin, which is normal, as far as Red Man goes, but the delayed reaction definitely fit in with the timeline of the rash).


He increased her steroid dosage and prescribed an steroid ointment for the rash. He also told us to use an amazing hypoallergenic cream, and he'd see us in a couple of weeks. Within a couple of days, the rash on her trunk started to fade as she started to peel like she'd had a sunburn over her entire body. The sheets on her bed are covered every morning with little pieces of peeled skin when she gets out of bed.


And while the rash looked better on most of her body, we watched it creep down her arms and legs. She looked like she had Scarlet Fever or something. The good news is that her doctor said her pneumonia is gone, even though she'll still have a cough for a couple more weeks. 


Thankfully, it appears as though her rash has stopped growing and has all but disappeared. Her skin is still a mottled purple and looks like raw hamburger or something, and she's still peeling, but she's feeling so much better. The ointment and cream have helped tremendously, and we are so very grateful. 


It's so good to see her smiling again!


Now, I can hopefully get over the temporary paralysis that seems to set in when there's a big medical stressor like this.

Life, loss and letting go.

For years, I've had trouble holding onto things.

Obviously, or I wouldn't be a hoarder, right?

Now that I'm back on my medicines and thinking more clearly, I'm making hard decisions about some of those things. With other things, my decision is not to make a decision right now.

For example, I've decided not to get rid of the ultrasound pictures of two of my pregnancies that ended in miscarriage. I didn't get an ultrasound the third time. By then, I knew what was happening, and I didn't want the heartache of seeing what was happening on a screen. I didn't want a picture to remind me. I don't regret that decision, but I also don't regret the decision of getting the pictures of  the first two.  

The pictures still bring me back to the loss I felt at the time...

The physical and emotional loss of the miscarriages themselves was hard enough. After all, we'd wanted every single baby I carried. But to be told that the little sac was empty was about more than I could handle. To know that our little ones had stopped growing just shortly after conception somehow made it worse. To know that they'd never even had a chance just killed me. 

It also made me feel like I had nothing to mourn. That I hadn't actually lost a baby, because there had never been a heartbeat. It didn't help that others actually told me I'd never been pregnant, since the sac was empty. That I didn't lose a baby. 

But I did. 


Three times.


I don't know, if they thought they were helping by minimizing my loss, but their words made it no less real. If anything, they made it worse. 


So I've kept these ultrasound pictures all these years. They are the only proof that we lost our babies. The only proof that they ever existed in the first place. Somehow, I feel that letting them go is saying they were never important to me. That somehow it's saying I didn't love them. That I didn't start thinking of names, imagining the nursery, picturing our babies' little faces in my mind the very moment I knew I was pregnant. 


I'm still not there. I might be someday, but only time will tell.


In the meantime, I've made some progress.


In the last several days, I've sorted through two small boxes that had each held six boxes of baby wipes, two apple boxes, and two  18 gallon totes full of paperwork. I've filled two huge black contractor bags with trash and ten more grocery bags with shredables. Five of them went out the door on Friday, and the rest will go out the door tomorrow. The stuff I've kept has been sorted into 3 categories. 

A small crate holds bills, paystubs and medical miscellaneous that I will scan and eventually toss into the shredables. A small box holds greeting cards and letters from loved ones that I will eventually scan. I don't know that I'll actually ever throw them away, but I will be scanning them, so they aren't lost forever, if something should happen to them. And the third is an apple box less than half full of drawings the girls did, stories written, IEPS and other miscellaneous things I'll be scanning when I get to it. 


My goal is to discard as much as possible once I've scanned it. Normally, I would try to scan it all as I sort it, but I've got to get through the boxes as quickly as possible, so I can find the birth certificates and social security cards I need. If I could just go down to the courthouse and order more, I would, but all 3 girls were born out of state from where we live now, and it's not as easy as it seems. It would take several weeks and $30 to $40 each to get copies, so I'll just keep working on the paperwork and scan things later.


I'm making progress. It's slow, but it's steady.


And I'm learning to let go. 

With an ending reminiscent of LOST

Imagine, if you will, that for the last six years, you've watched your favorite television show develop into something you could have never envisioned. You've watched actors come and go. You've watched love blossom between your favorite characters. You've watched as the plot thickens before the mystery is finally revealed. You've laughed. You've cried. You've gotten to know these characters, and you love them. They feel like a part of your family.

You've become emotionally invested in the program and it's characters.


Then betrayal hits. 

The producers of the show, in their infinite wisdom, decide a fate so cruel. You find out what you've been watching is only a dream. It didn't really happen. You get angry over them wasting your time. Wasting your emotional investment.


Welcome to our world...

Only in our world, it's a dream we can live with and we're thrilled with the outcome.


The reports finally came in on the blood tests.


The blood culture had apparently been contaminated somewhere along the line. Scooter does NOT have an infection roaming the hallowed halls of her little blood vessels.


Somewhere, between the needle prick on her arm that lead to that fateful phone call, and the lab, the blood culture was compromised. 


Our shoulders are carrying a much lighter load tonight, as Scooter is sleeping a sound sleep tonight without nurses interrupting to take vitals. Without beeping machines. Without tangled wires. Without fear.


She is still sick. She's still needing antibiotics and breathing treatments. She still has pneumonia.

But it's *just* pneumonia. 


It's funny how a parent can be relieved that their child has pneumonia, but considering the circumstances, we're beyond relieved. 


We're also a bit angry that Scooter had to endure big time, heavy duty antibiotics, when she didn't need to. That it cost us a couple of days of our lives. That it may cost us big bucks, if we have to pay the 10% deductible for the hospital stay. 


But mostly, we're just relieved. 

Above all, we're relieved to know that Scooter should be able to kick this pneumonia to the curb with the antibiotics she's on. That she was protected from ... well ... horrible things. And I'm thanking God that she's going to be fine.

We are beyond grateful that the hospital acted so quickly when they thought Scooter had a potentially deadly infection in her blood. They took it just as seriously as we did, and it's good to know that we can count on our local hospital to come through for us like that. The doctors were all absolutely incredible, and again, we're thankful.


We're eternally grateful to friends and family who have been there, praying for us, and for emotional support that helped us through this in ways they can't fathom. Thank you!


And lastly, we're so very thankful for our very comfortable beds to snuggle in tonight, and for soft pillows on which to lay our heads.


We are indeed blessed.


And we are so incredibly, incredibly thankful!

Scooter update.

Got a call at 10:35 Sunday night from the emergency room. Apparently, the blood culture they'd taken on Sunday when Scooter went in by ambulance to the hospital started growing something. We needed to bring Scooter back to the ER immediately.


Since she's been in, she's been on round the clock IV antibiotics. We still don't have the results for either the type of bacteria that is in her blood nor for the echocardiogram, which will determine whether or not she has an infection in her heart valves. Hoping to get answers to both of these today. Answers will help determine when she gets to come home.


She's doing quite a bit better, but she's getting sick of the hospital, the poor thing. 


Thank you all for your thoughts and prayers. They mean the world to me.


I'll be back soon.

Sigh

at hospital with scooter. blood cultures from yesterdays visit are growing. to b e admitted for iv antibiotics. needing to rule out mrsa and incfected heart valve. please pray.

The Perfect Storm, or Why We're Sort Of Ready For 2011 To Go The Way Of My Get Up And Go...

We've had a relatively healthy year, in spite of Hopper spending a week and a half in the hospital and 8 weeks in a wheelchair with her broken leg this summer. When I say we've been fairly healthy, I mean we've had fewer than our normal number of colds and stomach bugs. Some years, the girls have missed 3 out of the first 4 weeks of school, so overall, we really are doing well.


Friday seemed no different. The girls were doing well. Scooter had missed a couple of days of school last week due to female problems, so it didn't really surprise me when she decided to take a nap on the couch. She just seemed a little tired. We all need a nap from time to time. I honestly thought nothing of it.


Saturday morning found Scooter horribly congested. By Saturday night, we were giving her nebulizer treatments to open up her lungs to help her breathe better, and gave her some of the nighttime cold medicines that help a person sleep while they work on the congestion and stuffy or runny noses. We were a little surprised that we had to give it a second time, because usually one dose is plenty. When the second dose didn't work we pulled out the big guns. We went with the cough syrup with codeine, and she was finally able to get some rest.


She slept in Sunday morning, and I was just thankful she was getting some rest, so it wasn't a surprise when she didn't come out of the bedroom until 10:00 or so. She came out and curled up on the couch, and Scooter never curls up on the couch. She sprawls. So I knew she definitely wasn't feeling well. I gave her a nebulizer treatment hoping it would help, but she still seemed off. I noticed her coloring wasn't right, so I checked her with the pulse ox. Sure enough, her oxygen levels were low, and I knew we needed to take her in to be seen.


I went in the bedroom to call the pediatrician's office to see, if they had any openings, and to wake Hubster up. When he heard what was going on, he said he'd get showered really quickly and take her in, and I said I'd get her dressed. He headed to the shower, and I picked out some clothes for her to wear.


I decided to just help her get dressed where she was, rather than making her walk all the way back to her bedroom. She was already short on oxygen, or her lips wouldn't have been blue, so I figured it was the safest bet. I got her clean underwear on and told her to keep standing, so I could put her bra on. I didn't even get it up on her arms before she pitched forward. 


I realized she hadn't just lost her balance. 


She was out.


I tipped her back, so she'd fall toward the loveseat to cushion her fall. Once she landed, she started twitching, and her eyes started rolling back in her head, much like Hopper's did during the Vagal Response she had at the hospital. 


Crap! Here we go again!


You know those little toys that collapse when you push up the bottom? They're ones when I was a kid were wooden, but I've seen plastic ones in later years. The figure on the top of the base is rigid, held in place by taut string, and the moment you push the bottom of the base up, the string is no longer tight, and the character collapses. You know what I'm talking about, right? 

That's exactly how Scooter looked. 


It was terrifying.


I got her to the floor and laid her down as best I could. I started screaming for The Hubster, but he was in the downstairs bathroom, and he couldn't hear me. Hopper started yelling, "Daddy! Daddy!" in her best hysterical scream, and he still didn't hear her. I told her to go down and get him, so she stood at the top of the stairs and repeated her cry for help between sobs. I told her once again to go downstairs and get him, and somehow, she was able to hear me.


Hubster came running upstairs, and by the time he finally got up here, Scooter came to. She was disoriented, but she was awake and breathing. We realized that she needed to be seen in the emergency room immediately, but we also knew Hopper couldn't go. She was a bundle of yelling nerves. She needed to stay home, and it was going to take a few minutes for Bugster to make her way over to sit with her, so we could leave. And neither of us was comfortable with driving her without someone in the backseat monitoring her the entire way. 


We called 911. The paramedics were there within moments.


Poor Hopper was in hysterics, crying. As much as we tried assuring her that Scooter would be fine, she couldn't seem to fathom the possibility. Having 6 paramedics in the living room didn't help a bit. She was terrified. She knew I was scared, and I knew that didn't help, so I tried my best to stop the shaking in my voice. 


Once the paramedics realized Scooter was stabilized, they helped her out to the ambulance. Hubster rode to the hospital in the front of the ambulance, while I stayed home with Hopper and waited for Bugster to show. It wasn't even 11:00 yet.


I got ready as quickly as I could while trying to calm Hopper's fears. By the time Bugster got here, I was ready to go. I was shaking as I got in the car to drive to the hospital and had to thoroughly concentrate on driving, in order not to speed or get in an accident. That was the last thing I needed. 


Scooter and Hubster were waiting for me in Scooter's room. She'd already had her blood drawn and was hooked up to an IV. A short while later, someone came in and did an EKG, a strep test, (we have a tendency to not have any pain or fever with strep, and my brother suffered from Rheumatic Fever as a result of untreated strep due to a total lack of symptoms when he was little), an x-ray of her lungs, and got a urine sample. It felt like and eternity as we waited for test results. About 2:00, the doctor came back in and let us know that all the tests looked good. We were a bit surprised that the x-ray didn't show anything. We figured she had pneumonia as quickly as things hit her. Even the doctor was surprised.


He said she was definitely dehydrated, in spite of drinking a ton of water throughout the night, and that she had bronchitis. He started her on antibiotics, so it wouldn't turn into pneumonia and got her started on her second bag of fluids. He said he wanted to keep an eye on her heart rate, as it was running high (117 to 135bpm), but he figured it was from the dehydration and fever. He said we should be able to go home in an hour or so when the second bag of fluids was gone. Her heart rate had gone down some after the first bag of fluid and the acetaminophen, and he figured it would just continue to go down. 


He came in around 4:30 when the IV was almost empty and said he was a little concerned about her heart rate. He said the only other thing he could think of that could cause her heart rate to stay so high like that was blood clots. Was she on birth control pills, by chance. 


Yes. She was.


He sort of talked himself out of running a blood test that would show markers, if she was at risk for blood clots. He said that he figured it was just due to the dehydration, and that we should make an appointment to see her cardiologist just to have her checked. He said someone would be in to finish up paperwork, and we could go home.


Less than 2 minutes later, he came in apologizing. He said he felt like he couldn't take the risk and not run the test. That they could use the blood that had already been drawn, and the test would be finished in 30 minutes or so.


We were relieved. The doctor told us he just wouldn't have been able to sleep that night not knowing and wondering, if he sent her home prematurely. We agreed. We wouldn't have been able to sleep a wink either!


An hour or so later, he came back in to let us know that the test results were in. They showed that the markers were indeed elevated that would indicate potential blood clots. She would need a CT Scan to rule them out. The test would only take about 5 minutes, but it would take 20 to 30 minutes to have them read. 


An hour and a half later, we asked, if the results were in. Sure enough, they were, and the doctor would be in to talk to us. 


Emergency rooms are always busy. I just wish they'd be realistic about times. Go sit in this room for 3 hours, and if you're lucky, a doctor will be in to talk to you. Having tests run? You can count on at least a 6 hour emergency room stay on top of your wait in the waiting room. By ''30 minutes'', we really mean "2 hours".


But I digress. 


The doctor came in apologizing for keeping us so late. Thankfully, the CT showed she did not have any blood clots, and we were all (including the doctor) incredibly relieved. However, he said that the scan did show something the x-ray didn't pick up. 


She has pneumonia. 


He said to just keep up on the breathing treatments and cough syrup, to make sure she got her antibiotics daily and to follow up with her regular doctor. He said he figured that she'd had a mild febrile seizure that was brought on by the dehydration and a spike in fever and was complicated by her low oxygen. It was a perfect storm.


We left the hospital to come home around 8:00, grabbed something on the way home to fill our bellies and had Scooter in bed with all medicines on board in short order. She woke up this morning feeling much better. She still isn't feeling well, and her chest is still tight, but it's a far cry from yesterday. 


Still.

We are ready for 2011 to be done. 


We need a fresh start.

My get up and go got up and went.

I've been a bit discouraged lately. I've fallen out of some of the good habits that I worked so hard to establish. It's not that I'm actively acquiring things and adding to the hoard that lives in my house, but I've noticed my thought process isn't working nearly as well as it has at the height of my dehoarding. And while I realize my oomph and will for reaching my goal will ebb and flow on a daily basis, I have to admit that I'm tired of the ebb. It's lasted too long.


When we got the word that Hopper had broken her leg and would need the emergency surgery back in June, I started to stumble. That stumble turned into a free fall the moment I thought she had died in my arms and continued through the hospitalization and rehabilitation once we got home. When Hopper seemed to be getting back to her old self about 6.5 weeks after she broke her leg, the speed on the free fall slowed quite a bit, but I was still in a descent. 


A few ago I realized why I was feeling so out of control. With everything going on this summer with Hopper's leg, Bugster and Bubster's wedding, and the situation at school for Scooter I had completely forgotten about taking my meds. It explains why I've had such a hard time getting back in the groove of things, and why I can't seem to think straight.


I've noticed lately that I'm struggling with making decisions about getting rid of things. I've been second guessing myself, and as a result, I've put off dehoarding and even writing in my blog I've been so discouraged. I've felt almost paralyzed as a result of my indecisiveness, and it's driving me crazy. I want to get things done like I did at the height of my dehoarding. I want to get this stuff out of my house.


I started back on my meds a few days ago, and I will be diligent about taking them daily from now on. I can't afford to be paralyzed mentally like I've been. I feel like I'm trying to make it through quicksand. Like I'm being crushed to death by the weight of the pressure. Hyperventilating. Unable to draw a breath into my lungs. 


So yeah. I won't be forgetting my meds again anytime soon. 


I'm slowly but surely finding my way out of the dark. 


I made my way back into the study the last couple of days. I sorted through 3 more rather difficult boxes, with at least 95% of the stuff going into the shredables, the trash or into a 'get rid of' box. 


I do have to admit that I was excited to find some things I saved over the years as a reminder of just how far the girls have come. I found Scooter's feeding tube and feeding button she had to have when she was little, along with Hopper's ear pieces from the hearing aides she wore when she was much younger. (We donated the actual hearing aides years ago). In another bag, I found the images from when Hopper had her heart repaired as well as the spare coil they didn't have to use. I joked around that we needed to keep it, in case she needed an oil change. 


Mom didn't laugh, but I thought it was funny. 


And as odd as it seems to keep these particular things, I don't know, if I'll ever be ready to throw them out. They represent some major milestones in the girls' lives, and they're a physical reminder of just how much we've been through as a family. I want to make them into tasteful Christmas ornaments for our tree.  


Don't look at me like that.


It can be done!


Hubster took 9 more bags of shredables out the door yesterday, so that makes 72 grocery bags of preshredded documents to have left the house since I started this journey 18 months ago. I updated my sidebar to help me remind me of just how much I have accomplished. It just helps to see that sometimes.


I did use the portable document scanner the other night that Hubster got me for my birthday this summer. I can't explain how truly wonderful it was to scan some of the paperwork and then put it directly in the box to shred. I felt like I could breathe just a little bit deeper with each document that found it's way into the shredables.


I like breathing. 


I think I'll try to do it a little more often.

Necessity is the Mother of Invention, but who's the Mother of Necessity?

You've probably all heard the adage, "Waste not. Want not," right?


It's an awesome saying, and a wonderful way to live. That is, if you're not me. From the time I could remember, I have felt a moral obligation to not waste stuff - to find a use for anything that had any use left in it. I think I can squeeze use out of things that really have none left, and seeing the potential for practically everything is really cluttering to the mind.


I'm sure part of it came from growing up in a large family with not a lot of extra to go around. And I'm sure the fact that we've always been a single income family has played a role as well. But I think it's deeper than that. I think it's part of who I am to the core. Part of where I came from...


My grandparents raised their family during the Great Depression. Times were so incredibly tough then. At a time in history when women just didn't work outside the home, my grandmother cleaned the schoolhouse after hours to help make ends meet. I've heard stories all my life about how ingenuous she was. She absolutely amazed me my entire life. I adored her.


One of the things Mom has told me many times, is how Grammy would pick up left over construction paper off the floors when she was cleaning. Because this was during the Great Depression,every inch of available paper was used by someone. Nothing went to waste. The pieces of construction paper were often just slivers, but no piece was too small. She gathered them religiously.


Money was so incredibly tight during the Great Depression, that Mom and her brothers and sisters got one new pair of shoes a year. By the time the school year was over, the shoes no longer fit or had huge holes in them. They were all but abandoned, but that never seemed to be too much of a problem, for summer had arrived, and the kids would run around barefoot. 


Shoes weren't the only luxury for my mom's during the Great Depression. Clothes were, too. Grammy made most of the clothes for the entire family. Socks were darned until they were so well used they were literally falling apart. Clothes were handed down from the older kids to the younger until some clothes were worn by every child in the family, regardless of their gender. Like many women raising families during the Great Depression, my grandmother used feed sacks and flour and sugar sacks for fabric to make dresses for the girls and dress shirts for the boys.


But that wasn't enough for Grammy. She wanted to take away the sting of poverty. In spite of the fact that the girls knew their dresses were made from feed and flour sacks, Grammy wanted to make them special. She wanted her girls to know how much they meant to her. To know that they were more than their current economic status. So she got creative. 


When it was time to make dresses for her daughters, she would painstakingly separate the colors of construction paper and put them in a large vat of boiling water on the stove. She would then add the flour sacks that she'd thoroughly washed beforehand to the water.  Once the sacks, which had been opened at the seams to make a flat piece of fabric, had boiled long enough, she would rinse them and hang them to dry. Then she would get busy cutting out dress patterns on beautifully colored fabric and start sewing.


By the time Grammy was done, the girls would each have a beautiful new dress. Mom said it made her feel so incredibly special, that Grammy would go to all that trouble for them. It would be apt to say in this case that necessity truly was the mother of invention!


However, things have changed. Drastically. Overall, Americans today don't know what it truly means to need something. I know it's not the steadfast rule, but even in these rough economic times, the vast majority of homes have at least one computer, one cell phone and one car, if not two or more of each, plus cable or satellite television. We just have access to an overabundance of stuff - especially clothing. We can buy at thrift stores, garage sales or from the clearance racks for just pennies on the dollar, and that doesn't even count the bags and bags of clothing people give away every day on Craigslist or the different online free groups that are out there.


Unfortunately, hoarding and overabundance go hand in hand. Sort of like the Titanic and icebergs. It definitely makes the waters a little rougher for me to navigate. It doesn't mean I can't or won't be able to keep my head above water.


It just means I have to learn how to swim.