I was spitting tacks when we left for my sister’s last night. The Dad insisted on taking the Prius because the saving in gas is significant. I couldn’t imagine any amount of money worth traveling with Hope in the Prius on a ten or eleven hour ride. My fears were valid. Hope nutted up and The Dad spoke softly and called her his “baby”, while growling at GB to leave her sister alone. I should have just stayed home. My frame of mind was the pits at that point and I couldn’t find the peaceful spot inside that my therapist and I have been working on. So I switched my focus to keeping my mouth shut.  I was successful. I figured I wouldn’t say another word until we were at Lynn’s house.

I was startled by a huge bump and the strangest sounds coming from the car. Three in the morning, three hours from Lynn’s, we hit a deer. The Dad couldn’t open his door and a tremendous amount of steam rose from the engine. GB and Hope woke up, but,  thankfully, no one was hurt. Hope was snarly, which is how she always wakes up. Fortunately, while she raged earlier, she didn’t lose it then. We waited a half hour for a Virginia State Trooper and another half hour for a tow truck. By 4:15 we were in a hotel room.

This room has a complete, full size, set of stainless steel appliances, including a garbage disposal, and granite counter tops. The bedroom is completely separate. There is a kitchen table, a couch, a desk and an easy chair.

This morning we woke up to find we didn’t have comprehensive on the Prius and would have to pay cash to solve this problem. Not great, especially since, the Dad just took a half time leave, and our living money was cut in half.

I am grateful because:

  • Ten years ago, The Dad would have lost it completely. He stayed intact and dealt.
  • GB has always been a good car rider and trusts us completely. Telling her everything was going to be ok and her believing us was big last night.
  • Hope was Hope, but when we hit the deer, she didn’t rage, she just got snarly.
  • God has always met our needs and I trust that he will this time.
  • We will get to my sister’s by Thanksgiving, even if it is not on my schedule.

Most of all, we are all safe and together. Everything else pales beside this.

Wishing you all a Blessed Thanksgiving!

Tower of Babel

We have all the support we can get for Hope. There are six professionals- one shrink, 2 therapists, 3 workers- and none of them agree on how to help Hope, much less on what the next step should be. I interact with each of these people and I am unable to keep who said what straight. I have tried to pin them down via email summaries, but two of them flat out refuse to do emails.

Hope has still not been alone with me since the end of August. I have not been attacked. Most people are thrilled at this huge progress. It doesn’t excite me. I AM happy my body is healing and I have been able to have some mother-daughter interactions with her. But the core problem is there. Nobody has even tried to work on Hope’s physical aggression. One worker hands her ultimatums, another worker reasons with her,and the third worker believes that at almost seven, Hope is too young to deal with these issues and I have to work on letting what happens on one day flow through me and start fresh the next day.

I am close to overwhelmed again. I see my own therapist tomorrow.

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.