The Beautiful Set of Sky Blue Satin Sheets

The Dad likes satin. Specifically, The Dad likes satin bed sheets. Shortly after Christmas, I ordered a beautiful set of sky blue, satin sheets for our water bed. The timing ensured it was not a Christmas gift, since the Dad and I don't do Christmas gifts. They came, and surprised him, a couple of days ago.


Yesterday, The Dad decided to put the satin sheets on the water bed. Our water bed mattress is old, almost fourteen years old. When The Dad took the boring, non-satin sheets off, the water bed sprung a leak. Our patch kit still had a small amount of patching material in it. The Dad patched the bed and waited for it to dry. We had decided three weeks ago we needed a new mattress, after needing several patches in one weekend. He had the number to call, but hadn't gotten around to it.


After the girls were asleep, The Dad decided the patch was set and the new, satin sheets could be put on. At this point I have my pillow and bolster on the floor and am halfway to dreamland. I have viral pneumonia, and really didn't care where I slept. The Dad had started to put the sheets on when he noticed another tiny leak. He took the last bit of patching material, fixed it, and we waited for that patch to set. I stayed on the floor still dozing on and off.


Sometime later, The Dad put the beautiful sky blue, satin sheets on the bed. I took my last meds of the day, put on my CPAP mask, and crawled into bed. As I am drifting off, I am thinking I wet the bed. I ignored it because that didn't make any sense, I don't wet beds. Through my non-thinking stupor, I realized I was really wet. I took my night gown off, which was dripping, and threw it in the tub. I put a dry nightgown on, started back to bed and realized my sheets were soaked. The Dad jumped out of bed and saw the water running unto the floor. The bed had sprung a different leak.


Fifteen minutes later, with towels and blankets soaking up water everywhere, I found the leak. It didn't look big enough to account for all the water, but that is what we had. What we didn't have was any more patch material. The Dad pitched a fit, which I silently watched. After a while, he realized that maybe he was over reacting and stopped. We (mostly he) brainstormed about what he could use as patching material. The Dad ended up using the vinyl from the zippered bag the beautiful set of sky blue, satin sheets had come in. I would have never thought of this. 


The patch held, and I, personally, was grateful to climb onto old, ripped, cotton sheets that were dry. Two and a half hours of turmoil and Hope peacefully slept through it. There is a message there somewhere, but I am not currently thinking well enough to find it.

It is one of those days..

Maybe its the post holiday blues. I did not do Black Friday madness, but my 20 year old nephew did. I waited up for him to get home and it almost three before I got to bed. Maybe it is just tiredness.


Hope is playing up to everybody, except for  gunning for me and GB. Thanksgiving Day Hope scratched GB and left a 4 inch mark. When I tried to talk to Hope, she took a swing at me. The Dad told me to back off and leave her alone. Yesterday, GB left a scratch on Hope. The Dad was all over her, reduced her to tears and removed her from the group. Never mind that Hope was not where she was suppose to be. At bedtime, GB still hadn't recovered. My sister's oldest and youngest are both special needs, though bio kids. The 14 year old and GB have always been oil and water. Visits have gotten harder lately, instead of easier.


I am feeling isolated today and hear that two bedroom apartment calling GB and I by name. Hope and I did well this week and in 24 hours, I am back to wondering why I bother trying.


I will post again when I can shake the negativity I am feeling.

Still Here...Sort Of

This is just an update because I don't have anything else in me at the moment.

* GB has been on the ant-psychotic loxapine for 5 days now. It has taken the edge off the mania, but I am hoping for so much more.

* Hope's birthday has come and gone, the tantrums still linger rage on.

* Texas parents sent Hope a big box of gifts. Didn't open it, haven't answered their last email, Hope hasn't brought them up.

* GB's respite provider died last night. They never did control the pain.

* I had back to back CSE meetings set up for tomorrow, for a total of three hours. I had to cancel them.

* I had to cancel them because the minor surgery I was having done in an outpatient clinic morphed into real surgery at the hospital tomorrow because of my ongoing medical problems.

* They knocked down my parents house today. It now looks pretty much as it did before they started building 23 years ago... an empty lot. The koi pond is gone.

My mother always said if you have nothing positive to say, be quiet. That is not what she did, only what she said. 

I didn't Want to Know

I saw my new neurologist Friday. None of the news was very welcomed. I am still not on any meds for my neurological problems. He said I have  mitochondrial level  disease that can only be treated by symptoms. He order a sleep study for last night because sleep apnea can make the neurological problems worse and he can treat sleep apnea. The Dad and the girls dropped me off a little after eight last night. I was hooked up to monitors using a lot of wires and some sticky stuff. They came in to adjust wires and connectors often and it seemed like it took me forever to fall asleep. I was suppose to wait to hear from the doctor, but the nice technician  let me look at the raw results. I have sleep apnea (no surprise), but I wasn't expecting to see that my oxygen saturation levels dipped below sixty percent on four different occasions.  I was so tired when I got home that I took a four hour nap.  Next step is to go for calibration.  Right now, I have two little girls who want to be right next to me.

Can't Have One Without Having Them All

Thank you for all the prayers yesterday. I needed them as much as I have ever needed them. Our kids feel tension in anybody else and feed on it, Hope had a Ragefest all day yesterday. I was ready to put her to bed before  2 PM. I hung in there until the Dad got home around 6:45. Hope just kept going and when the Dad tried to intervene, she hit him multiple times. As a result, The Dad had her in bed before I had cleaned up dinner. GB reacts differently to stress. She broke down twice yesterday, crying in my arms for over a half hour each time. Comforting her and keeping Hope from hurting either of us was energy draining. This morning GB was up at 4:30 AM. I couldn't settle her down to sleep again, so our day began very early. It is only a little past 9 and I am ready for lunch. I will try to settle everybody today and look for a better day tomorrow.

Too Much Time Away

We have been away from home for much too long. It isn't by choice. While we were in the North Carolina mountains, my parents house sold. Bittersweet news. Good that the house sold.  Good that it is time to move on. However, time is dragging me along, even though I don't feel ready.

We were suppose to be on our way  yesterday. We weren't. The Dad bought MK a plane ticket home. She is afraid of flying. She spent the night telling me how horrible I am. It  got old quick. I lost count of the number of times Hope raged. When she wasn't raging she was poking. Chinese water torture. GB did OK- until bedtime. It took her over an hour to cry herself to sleep. Nothing I said or did made a difference.

Today is a new day. We still aren't going home. Maybe the day will be better anyway.

Reality Check

Yesterday, after school, Hope, GB, and I went to meet GB's MSC (Medicaid Service Coordinator) at Mickey D's. I had a bunch of paper work to sign and a report to read. The report cover GB's needs and deficits and was still four pages long. GB's social skills and adaptive behavioral skills are at approx four years. Reading this report made me wonder if the correct diagnosis for GB is Autism, rather than PDD-NOS or Aspergers. GB chit chatted with the MSC and when she was done, went off to play. Hope followed GB around, getting in face and interfering with what ever she was doing in the play place. GB got more and more irritated and Hope could not be redirected. I finally had Hope sit  next to me and got through everything I needed to.

We went home. GB wanted nothing to do with Hope and my head was still back with the report. We were having a huge thunder storm, which kept  the girls inside. They bickered, I separated them. One clung, then the other clung, then they both tried to cling. We had dinner. I took both girls upstairs for night time meds. They were bickering again. I told them both to knock it off and Hope clawed me.

The night never really got better. This morning GB was teary and Hope flat out refused to get on the bus. My head is still at yesterday's meeting. Need to reset before the weekend.

Too Much Monday

Took both GB and Hope to see the psychiatrist this morning. The shrink was really pleased with GB. Her thinking was clear, she was engaged, and she was willing to talk about anything. Then it was Hope's turn. Hope immediately told the doctor she was "tupid" and she hated her. The doctor told Hope that "hate" was not a word she allowed in her office and Hope immediately told her that she hated the therapist, too and everyone else in the office. The psychiatrist decided this wasn't a good time to schedule the TOVA (yet another behavior screening instrument). She also decided she would rather not increase Hope's med, as we are better off with the behaviors  (and the feelings behind them) being out in the open.

After the 3 hours to and from the shrinks and our appointments, I took Hope to school. I spoke with the principal and left a hand written message for the Special Education Director about Fridays bus incident. I have decided I have to deal with the incident because if I am not sure GB will be safe, I will end up driving her both ways and that will add another hour to the day. I am now writing a letter to the school board, which I hope to get into the mail (sign, returned receipt required) this afternoon.

This afternoon, GB and I go to see the family doctor. Her appetite has been unchecked through three medication changes.There are a couple of metabolic disorders the doctors mentioned when she was an infant that we never saw a need to check out and nobody ever mentioned it again. I am thinking that maybe I missed something.

I Don't Wanna!

This morning I woke up to a bright sky, warm air and the first thought in my head was "I don't wanna get up". Hope  screamed for an hour last night. She had the afternoon I expected, the teacher conference went as expected, and the rest of the day was as expected. It all sucked. Bedtime caught me by surprise. I asked Hope three times to put her pajamas on and three times she crossed her arms and said no. Something in me rebelled at asking a fourth time, so I put her into bed in her panties.  She screamed and screamed and screamed. After an hour of screaming the Dad caught her at a lull and went in the girls room and sat in the rocking chair. She fell asleep. At that point, I had a wicked head ache. I took some medicine and went to bed.

I woke with the same headache I went to bed with. Hope had her usually lousy morning and I put the girls on the bus. The refrain in the back of my mind is now "How long before she is back?" What a waste of the Hope-less time I have! I am going to do a load of laundry and see if I can find a pair of big girl panties to wash... I seem to have run out of them this morning.

Payback

The Dad is home and guess who is getting ALL the payback for him being gone? That's right, I am. Me. The Mom. And Hope sure has a lot of payback stored up. She was back to throwing chairs this morning. Not to be left out, GB is fixated on her upcoming birthday. A steamroller with curly hair and 9 candles. The Dad is back in super stress mode and if I hear on more muttered under the breathe  criticism of how I handled the, girls or what shape the house is in,  or one more snide remark about setting off the chair thrower, I may be single again. Can single women go to Orlando?


To top it, off today  is yet another SNOW DAY!

Building towards Christmas

We are in North Myrtle Beach and my oldest son, J, and his family joined us Monday. My sister and her family arrive tomorrow. Hope has regressed quite a bit and is forcing us to keep her directly with us at all times. GB and X are thrill to see each other and they complete each others' thoughts 75% of the time. The rest of the time, well... They need a lot of alone time, each with an adult that can help them regulate. The older kids think we are overreacting one minute and want to know why we have a raging child twenty minutes later. The older crew are pulling their weight so far and I think that we are as ready as we are going to be to add my sisters five and her dog tomorrow. I am sleeping in front of the fireplace. That way, I can see and hear everything, especially the teens.

This is Sandy. She was totally Mom's dog before she passed. She is a Labordoodle.

My mattress was set up in front of the fire place, in the middle of the great room.

MK and Mali

Hope enjoyed the wide open spaces as the ocean, and seems to be a water magnet, as well as a dirt magnet.

X and Hope- a year and a day apart.

Funny Faces

Two peas in a pod!

GB really is attached to Hope.

Mali with his Grandpa

So Cute !

Uncooperative Bunch

Best we could manage.

Pre Christmas Triggers for Me

We got a huge box in the mail yesterday. During this time of year, it is a common occurrence.  I thought nothing of it and put it aside until I had time to deal with it. MK thought it was pajamas, which we were expecting-  17 pairs to be exact. It wasn't. It was five individually wrapped presents for Hope, one from each member of her old family. Naturally, the girls immediately noticed the sparkly gift wrap. I put the gifts aside and tried to distract them, but GB is reading well enough that she was still figuring out the labels after the gifts were no longer in view. She figured it out. She shared it with Hope.

D stopped by for 15 minutes between 4pm and 5 pm and complained that he was tired of being treated like a slave. I don't know whether to put an eviction notice on his door or an emancipation proclamation. Either way, it will be dated January 1,  2011.

MK has a list of Christmas traditions she remembers from when she was small. There is no way that my present configuration of kids can handle that amount of stimulation. I offered to go through the list so we could pick out which traditions are doable. So far the only response I've gotten from her is "Stop acting old."

And that is only 4 of the 16 people I will be sharing the week before Christmas with. Ho Ho Ho.