She Said It!!!

Typical goodnights before Jessie left:

Tuck her in bed. Hand her her bo bo.

Mom: Good night Jessie. Mommy loves you.

Jessie: I like you.

Typical good bye at Richmond State School:

Mom: Bye Baby. Mommy loves you.

Jessie: I like you mom.

Theresa, an aide asked me about this. I told her that Jessie had never used the word 'love'. My theory was she understood 'like' and was comfortable with it. I told her it was fine, we understood each other perfectly.

Phone call I recieved from Jessie today:

Mom: Hello?
Jessie: Hi Mom.
Mom: Hi Jess! I was thinking about you!
Jessie: Mom?
Mom: What baby?
Jessie: Wheres daddy?
Mom: At work.
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Jessie: Mom?
Mom: What sweetie?

Jessie: I love mom.

Mom: JESSIE. YOU SAID IT! Oh my gosh I LOVE YOU TOO! Thank you baby.

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Theresa and Stacy said they have been working on it for days. She told me she loved me three times.

And I thought I didn't have anything to say today.....

Jessie's Sunday Visit

Ryan and I went to pick Jessie up for her weekly Sunday visit. I saw two women on the way in and they asked who I was. When I told them "Jessie's mom" they each said "Jessie is my friend" which felt wonderful. When we got inside to get her, she was with 'grandma' an adorable older woman. The first time I laid eyes on her was when Gary and I were touring the facility and she was in a game room. As we walked in, she raised her arms out in front of her as if imploring us to do something and belted out a pretty good rendition of the song: "The Old Rugged Cross" - it was great. She is quite high functioning and has told Gary before that she takes care of Jessie and looks out for her. She is about 4'9" tall, is always smiling (until today), has a beautiful twinkle in her eyes and a face that reminds me of my jolly Norwegian Mrs Santa Clause.

I told her Jessie was coming home for a while and she started to cry. She said she would miss Jessie so much, she did not want her to go. I was feeling bad and assured her that it would only be for a few hours and she started sobbing. I gave her a hug and said she would be back in no time and left her being consoled by three aides. I guess Jessie has some friends!

The first thing Jessie wanted to do when she got here was call her real grandma - so we left a message when we could not reach her. By the way - if you want to talk to Jessie and feel uncomfortable calling RSS, we generally have her from about 2:30 - 5:30 (central time) every Sunday so feel free to give us a call and you can talk to her - if you are local - you are welcome to stop by.

Gary had fixed dinner and had it ready by the time we had made the round trip - it was Stake Conference today, so no stopping by and picking her up after church. To our amazement, Jessie did not want to eat! She said she was not hungry. This is definitely a new situation for us. Maybe they are giving her something - I want some! So we ate while she watched TV ... quietly - also a new situation for us.

She then said she wanted to feed the ducks - where she got the idea we are not sure - maybe they do it at RSS - so we headed out: Jessie with a bag of bread and me with my camera.

Jessie was too nervous to walk down the grassy slope to the lake, so she watched while Gary fed the ducks:

This next photo I call "Afro Duck". I have no idea what is going on with its head! It is a lovely 'do, just have not seen one on a duck before"

A shot of 'fro duck with his friends:

Then to obligatory Frisbee session with Charlie. One of many she gets a day (when Gary is in town):



Then we got the inevitable "I want to go back" statement. We are used to it now and it does not phase us. She says she does not want to go back to RSS generally on the ride back a couple of times, but seems to be more to make us feel good, or to be polite than for real - her heart is just not in it.

Jessie not being at home has become quite normal for us now. I thought it would take much longer. I thought the panic and fear would be around for, well I was afraid forever - but they have eased to a manageable level. Now I am just basking in the 'weirdness' of a house without a very large 3 year old in charge.

Life is good.

Jessie's House

I went and picked up Jessie with Linda today and we went to dinner. Since it is over due, I thought that I would put the information people have been asking for (address & phone number) here and some photos.

Address:
Richmond State School
2100 Preston
Richmond, Texas 77469

Phone number (this rings to the San Jacinto - her house name - aides station):
281.344.4356

Here are some photos that I snapped today:



I am sure Jessie would love a call from any of you!

Great Parenting ... You be the Judge:

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I wonder how many times my blog can start out with: 'Gary left less than 24 hours ago in the Town Car and ___________.' Fill in the blank: 'I have lost my mind', 'Things have gone to hell in a hand basket' (OK, that generally takes at least 48 hours, minimum), whatever.....

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Set my alarm for 5:00am to get Ryan up for Seminary (Gary normally gets him up). He got up, showered, got ready, came downstairs and promptly fell asleep on the couch without making breakfast. Hence, my OTHER alarm went off at 5:50 and I yelled at Ryan to get up and go to Seminary (not his favorite place to be). When the snooze went off, I yelled again, and 3 minutes later I kinda yelled a bit more - and off he went. Since I had not slept well, I was happily drifting off when he called me from a parking lot at 6:10am and said he was tired. OK, so was I, but maybe I could have been nicer with my threat (the ONLY thing we have to get him anywhere) that if he did not go to Seminary, he could take the bus to school and had no need for his vehicle. Told him I would get him the bus schedule that afternoon and I needed his keys. Harsh? I don't know, I was tired and cranky, no one would ever confuse me with a 'morning person'.

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(Note: Ryan has given me permission to 'blog' this).

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At exactly 8:07am I was still staring at the clock wishing that sleep would come when I got the cutest little trilly sound on my phone - I had a text message: "Don't worry. I'll be back later today. I just need a break. My phone is on silent, so don't freak out if i don't answer. I'm sorry about this. I'll call you soon." So .... I'm laying there realizing that my son has just run away from home - he's 18, and his first time, so I'm thinking we did a pretty good job getting that far, right?

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Gary steps off his plane in London, checks into his Marriott and calls me - asks how things are going. "I was doing better before Ryan ran away from home.", I said. Silence on the other end. Ya wonder why he has not done the same - ever. While on the phone with Gary recounting my morning, I decided to track Ryan using his debit card - logged on to Chase bank. Oh, he went to Sonic in Richmond, then McDonalds. We talk some more. Holy Shit!!!! He went to McDonalds in Flatonia, Texas which I happen to know is about the halfway point between here and San Antonio. Yeah: 'Holy Shit' ... screamed it into the phone, and Gary still has not hung up on me - cool. Now I am a bit more worried, and thought that maybe I should call Ryan and see if I can wring his neck through the air waves....

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He went to the Alamo (Dad said go ahead - I on the other hand had said multiple times, through clenched teeth to turn around, turn around, NOW! But I lost those rounds), stopped at Buckeys (sp?) on the way back - called, asked me if I wanted anything. Still through clenched teeth - yes, YOU - in the same county as me...

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Gary called back after Ryan got home and I had gone with him to Sonic and talked to him about, well, why he decided to spend the day in San Antonio, and was, like Dallas tomorrow? And give me your keys. We discussed it all, and as he was getting off the phone, he said "You know, I will admit I lost Jessie, but only for a half an hour. You lost Ryan for like 8 hours."

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And I'm just wondering what y'all think out there in 'blogland' - which of us is the worse parent?

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While living in Norway, Ryan and I went to Paris on his spring break, he was 14 and Jessie was 16. I called Gary on his birthday and he told me he had lost Jessie that day. Lost Jessie - IN ANOTHER COUNTRY...

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He had gone shopping for ski's and she didn't want to go in the last store he was going to. He just needed to run in and check if they had maple syrup (Ryan's beverage of choice over there - he seriously used enough on a waffle to qualify it a beverage). No one sold it except this store - sporadically. So, being the great parent he is, he handed her a diet coke and told her not to go anywhere and LEFT HER IN THE CAR. When he came out to the car, she was gone. Having a bit of and ego and knowing Jessie, he ignored all the puppies, and babies and umpteen other stores connected to the parking lot and headed back the way he came - assuming she had followed him in.

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He went to customer service and asked if a mentally retarded, English speaking girl had come in (it was a club membership like Sam's Club - so she should not have been able to get in without a card). A half an hour later, he found her checking out the toys in the toy section.

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So I ask you - Gary? ... or Lori?

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I am just dying to know......

New Roommates

Yesterday I had a conference call with RSS for Jessie's 30-day assessment. I was not feeling well and did not want to barf on myself while at a meeting.

It went well, and I reminded them we wanted to bring in her computer which meant moving to the room she was supposed to move into. I got a call this afternoon from Angie - Jessie had been moved yesterday.

She then proceeded to tell me (because she was supposed to) that Jessie and her two new roommates stayed up last night and talked, watched DVD's and had snacks (which will not help with her 1800 calorie diet). She was so tired at school, they called RSS to come pick her up. So apparently she is in trouble.

All I can do is smile.....

And Then, Out of the Blue....

.... She said it! It left me with a mixture of emotions: excited, comforted, thrilled, happy, elated, sad, mourning and a bunch others I can't recall. She looked at us, both of us just staring with our mouths gaping and she had to say it again: "I want to go back to my friends now".

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I thought it would take a year or two. We were told this happens, where they would rather be at the institution/group home rather than with you .... but I thought it would take more than 5 weeks!

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No matter, it makes me feel better to know that she wants to be there, and if it was horrible, I don't think she would want to be there. But I am not Jessie either.

A Typical 'Lori' Night

Well, the Towncar picked Gary up less than a day and a half ago and I am loosing it. Luckily, he will be home on Saturday instead of a week from Saturday since everyone in London was going to be gone for some reason. Good for me ... bad for Gary. He will need to work basically 2 weeks in London one week off until Thanksgiving after this small jaunt.

Last night I had my most recurring dream - never pleasant, but mostly exhausting. I dream that Jessie, or Ryan or both (mainly Jessie ... like last night) are in a house crying. A big house - 3 stories, a basement and an attic, don't really have an idea of how many rooms. I hear her over the intercom but I don't know where she is, so I start running from door to door. The hallways get longer, the stairs get steeper, I never find her, but when I wake up, in a full sweat: I am so grateful that I am not running and not so scared anymore.

Then I drift off to sleep and it starts all over again. In my dreams, the house changes, in my head I know that the floor plan is now new and I have to start searching the house all over again. I have had this dream for 20 years and years ago I got savvy in my dreams, realized that this was not fair - so I always scream this into the heavens (I'm never very nice about it not being fair that the house changed) and Gary has never mentioned that I am screaming in my sleep - so everything is nice an neatly contained in this strange thing inside my scull. I do this over and over again until I get up and stop the cycle by just staying awake or until the magic of 'morning light' hits my face and I am up for the day. But generally there is an epiphany waiting while I am laying there exhausted.

Last night? I was stupid and did not get up - I was tired and for some reason the little 'post it' in my head that tells me that I would get more rest awake than I would asleep running full speed screaming in strange houses was not on the bulletin board, so forgot. I woke up and morning was here ... and 4 words played over and over in my head: "What have I done?".

This always plays out better when Gary is here, but with him in London, I can talk to him, not like if he is off camping with the scouts and no: 'super cell phone I can get him anywhere in the world ...so far' with him. So I have that, will talk to him in a few hours, after he has dinner and the darkness swirling in my stomach and head will let up a bit, the panic will probably stay. But, what have I done?

This morning, I was thinking of a procedure when Jessie had just been born. She was still at St. Benedict's in Ogden, so before she was airlifted to Primary Children's in renal failure. They were going to do a spinal tap and told me I needed to leave the room. I asked them why? They told me that was just the way it was, and I figured it out. They did not want me in there, because they did not want me to see what they were going to do to my baby. I promised them I would stand with my back touching the wall and not say a word, but if they made me leave I would imagine something much worse that they were doing to my baby. He let me stay !? I guess because they knew Craig I was 'given a break', as I kept my promise and watched, quietly, tears running down my face. I realized that I was out of my league in terms of horrible things they could do to my baby - got better over the years - now I have a whole library - but that was the first time, the time I realized that there were some things that moms just shouldn't see - but me? I WANT TO SEE THEM. I need to see them. I NEED to know what is happening to my daughter.

And now I am in the same situation, but they politely escorted me out of the door and said to call any time and they would let me know how she was doing. They say she is doing fine, but do I believe that? No, they would say that no matter if she was begging to come home every ten minutes. The problem is ... I need to know she is still asking to come home so I can help her, but I have no information - just good news and I am suspicious. I need them to stop telling me what I want to hear and be honest. She stopped calling. Has she given up, or are they just not dialing the number any more? How am I supposed to know? She can't tell me. Which scenario is more pitiful? I really don't know.

Yeah, I am in trouble here, but it will pass. There is a small part of my brain that is still logical that is whispering that this 'Jessie panic attack' will pass, the bear will stop chasing me, the feeling that I have done something horribly wrong will go away and one of these nights, when I dare let myself fall asleep ... I will get some sleep.

But, I'm waiting for Gary to get home before I even think of going to bed again.

And I KNOW that's nuts.

Distractions

Dear Jessie,

It has been 4 weeks since I dropped you off at Richmond State School. All in all, things have been fine - but only because I was 'blessed' with so many distractions, and the people you live with have been so kind to keep me informed. They love you dearly and wish they could clone you. You have adapted well and so I have not had to worry about you at all - just me. I am slower to adapt than you, go figure.

When I dropped you off, daddy was gone, and since his job is to keep me sane ... I thought huge problems would arise. But, I did pretty well for those days, because I was too busy preparing for my Super Craft Saturday - which went pretty well - and that is based on the fact that the church is still standing and not a pile of smoking rubble.

I was pretty worried about what would happen after the Craft Saturday, since I thought I would have nothing to do but think... And before I could get all worked up? I was preparing for a hurricane! You didn't do that did you? Cause, I really could have done without all the fuss, and hysterics and the blowing and crashing and man, I gave all 3 of our air conditioners hugs today (I had said I would ...) - it is hot and humid down here!

I tried to call you last night and you were asleep. It was 6:00pm? They said you didn't want to get on the bus in Brenham, and they had to sedate you. SEDATE YOU!?! I pictured one of those horrible psychiatric movies where two burly men in white lab coats hold you down screaming while some evil doctor sticks a big needle in your neck. It. Was. NOT. A. Good. Night. Let out some of that pent up panic / worrying / crying / screaming ... probably needed to, but only for a few minutes instead of hours like I should have / would have.

So ... daddy is now on an airplane to London. Yes, I told you that on the phone today and you were sad you could not talk to him. Me? I am sad that I will be batshit crazy by the time he gets home - but not to worry, he can always make me feel sane once he gets home. (The secret?: He loves me just the way I am and does not care that I am batshit crazy ... if he can hop on a plane every now and then ... And for some reason, that makes me less crazy, weird huh?) .

I am sorry your 4 weeks have been so exciting for you - a lot of workshop before school started - and I know how much you love school. Just to have to leave after 3 days of school and evacuate to Brenham - somewhere new and unfamiliar. But, you know what? The only thing I could think about while things were getting 'funky' during the storm was I was SO glad you were safe and did not have to weather this - since you would not understand.

I think the school will be good for you - it will help you become an adult and leave your childhood behind, but now I know - it will keep you safe also.

Sweet dreams tonight baby, mommy loves you.

A Typical Conversation ... Now

The (Real) Phone Rings:

Lori: Hello?
Jessie: Hi, Mom!!!
Lori: Hey baby!! How are you?
Jessie: Mom?
Lori: What?
Jessie: Where's Charlie?
Lori: She's hiding in the closet.
Jessie: ( a 'Jessie laugh' - also on my top 10 things I miss the most)
Lori: What did you do today?
Jessie: Workshop.
Lori: What did you work on?
Jessie: I did the bolts!
Lori: Did you have fun?
Jessie: Yeah, I work with Carrie Ann!
Lori: Is she your friend?
Jessie: Yeah. Mom?
Lori: What sweetie?
Jessie: Can you come get me?
Lori: No baby. That is where you live now, you are at Jessie's new home.
Jessie: Mom?
Lori: What?
Jessie: Where is daddy?
Lori: He's working.
Jessie: Mom?
Lori: What baby?
Jessie: Can I come home?
Lori: No, sweetie, that is where you live now. Do you sleep with your quilt?
Jessie: Yeah!
Lori: And your puppy?
Jessie: Yeah!
Lori: You are OK, baby, you are a big girl now. Living on your own, mommy is so proud!
Jessie: Yeah ... Mom?
Lori: What?
Jessie: Where's Charlie?
Lori: I already answered that, it's probably time for you to go. What are you going to do next?
Jessie: Have dinner.
Lori: Cool! You have a good dinner. We need to say good bye.
Jessie: Bye mom.
Lori: Bye baby, mommy loves you.

Jessie has not called me since last Friday. I saw her Sunday, so last night I realized that I had not talked to her for 3 days. She evacuated today to Brenham State School till I don't know when, so I won't get to hear her voice for at least a week. I did not realize how much I would miss our phone conversations.

I did not realize how quiet the house would get when Gary is out of town and Ryan is at work and I am more alone than I have ever been. No Disney Channel, no finger phone conversations, no playing with Charlie, no huge belly laughs.

I wander through the house and sometimes I will hear sounds, like echoes of sounds past - ghost sounds ... so I turn up my satellite radio or iPod louder. But still - with the music blaring and rattling the windows ...

I restlessly roam ... lost and wonder how it can still be so quiet?

Dear Jessie,

Two weeks ago today I dropped you off at Richmond State School. Looking back, you were much stronger than I was that day, and not because you didn’t understand – I could see in your beautiful blue eyes that you knew exactly what was going on. You were saying good bye to your childhood and hello to your independence. I think you have been ready for this for a while – gauging this by your recent behaviours. I’m sorry that I was not ready to let go, sometimes moms get scared, and stuck and just don’t want to say goodbye.

I have been really proud of you these last two weeks. You have made friends, have become more independent, and seem to be fitting in very well. Everyone loves you – which is the one thing that is not a surprise. After 20 years I have yet to find anyone, if willing to give you a chance, that does not see: you - the real ‘you’, your spirit and joy and love for life that seems to take my breath away sometimes.

When I dropped you off on last Sunday, I freaked – where was your quilt? It’s FREAKING HUGE – how does a place LOSE IT? Why were your clothes not marked yet as they said they would be? Where WERE half your clothes? Where was your woobie? I was upset things seemed to not be in order, but you were perfectly fine with things and seemed to want to tell me to calm down, go home, get some sleep and work things out with Angie later – no biggie. You were fine … me? I did not fall asleep at all that night and felt like kicking puppies all day Monday. My mood swings these past two weeks even scare me – I can’t even imagine what Gary and Ryan think, not to mention Charlie – who I can just tell … knows I want to kick a puppy sometimes…. She has become very good at hiding in closets.

While your evacuation standby to Brenham State School due to hurricane Gustav was cancelled, Gary, Ryan & Charlie tried their best to stay clear and out of the path of ‘hurricane Lori’ yesterday, and why? Why was I like that? You didn’t care, you were fine. I can be very dense sometimes. Gary said he would drop you off from now on – you will like that won’t you? Your daddy can be a very smart man when he puts his mind to it.

One day, I promise I will adapt to this situation as well as you have. I owe you that. I owe you so much and I wish so much I could tell you what you mean to me. This letter will be read, but not by you, sweetie, because you cannot read … and it makes me cry. But maybe just putting it out there: out there with the bazillion other bits and bytes, the ether, or heavens, or the minds of those who read this – it will somehow find its’ way to your heart.

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I want to tell you so many things, make sure you are ready for this next stage of your life, but I cannot and I think that is what is frustrating me the most - so much to tell you and being unable to even try.

The funny part? You already, somehow, seem to know….

Take care, my sweet girl, momma loves you.

"Retail Therapy"

Gary is one of those lucky husbands that has a wife that feels better when she shops. My friend the other day put a name to it that I had not heard: "Retail Therapy". Currently it is cheaper than the real thing, unless you count everything I have purchased for my big Super Saturday - which has been a blessing. It is a huge distraction and a lot to do - Super Craft Saturdays don't get done by themselves ... and I decided not to delegate so that I HAD to get up and do something. Currently I am proud to announce it is a week away and all I have to do is find a few funnels and buy some ink pads - did the rest this week - so I didn't sit and stare at the walls all of the time. Now just pretty much terrified with the amount of extra time that leaves in the next 161 hours (exactly).

I found this box and it felt 'right' - so, I bought it. Don't know where it lives right now we just stare at each other kinda getting use to the idea of having a Willow Tree box living in the house with me.

Of course, it was the quote that clinched it: "Protect and cherish, give wings to fly".

I sit at my desk and look at it and wonder if she was ready when I pushed her out of the nest ... I guess time will tell....

Jessie's Mom

Sitting in the dark last night, wondering why I can't sleep, get anything done and just stare at the walls, I thought: I'm "Jessie's Mom". I have been for some time. Doctors would ask, "Are you Jessie's mom?" and then tell me the news - good, bad, devastating, whatever. I would be at the store and people would ask "Are you Jessie's Mom?" - the answer was always yes. I was ALWAYS "Jessie's Mom" - there was no way to stop, no breaks, no reprieve.

I realize that being Jessie's Mom was a full time job. She would be up in the middle of the night often, wet and I would get her changed and back in bed - so I did not stop even at night. While she was at school I hurried to get all the things done that other people just did ... anytime - but when Jessie came home, things were different. I used to tell people when we were trying to schedule things that my life ended at exactly 2:15pm Mon - Fri. I had to be home to get Jessie off the bus, and then it was 'Jessie time'.

Obviously that is all gone now. She calls, daily - sometimes more than once and sounds good, but always asks if I can come and get her and bring her home. Sometimes it is very hard to tell her that is where she lives now and that I would see her soon. So small moments of "Jessie's Mom" and some of the hardest part of being "Jessie's Mom". But this is such a small part of my day it does not really count.

I realized at exactly 2:57am this morning that I had lost "Lori". Twenty years of being "Jessie's Mom" is a long time. The little parts that weren't "Jessie's Mom" I was "Ryan's Mom" and "Gary's Wife" I ran out of time ... for me.

So, I have a piece of paper in my wallet, small - like a Chinese fortune cookie fortune - saying: "Find Lori" - and it is my number one goal right now. After 20 years, I am assuming it might take some time, but I will get there.

I just have to figure out how to start.

OK, maybe the glass is half empty today...

I wake up when I wake up and I feel it. I get up and wander this huge house and I feel it. I try to get things done, anything - I have a whole list - and I would be so proud to mark anything off it - one thing and I would say that I have my 'act together', but can't seem to because I am distracted with 'that feeling'.

It is always there, just out of my grasp - like a scent long past, but every now and again you get a whiff of it, it flows past your face like a silk scarf on the breeze and you remember. Jessie's spirit is gone and has left such a hole in this house and our family that I don't know what to do, I don't know how to get it back. I don't miss the yelling, the cleaning up blood, the hitting, but I would give anything to have her sitting in the living room right now talking to daddy on her finger phone telling him how her day went, because, you know what I just realized? Her days are always GREAT! She saw the wonders of the universe in my flowers outside. She talked to angels on the phone. She knows more about Christ than I do. I truly think she can talk to the dog. Her happiness, and pureness, and closeness to God drifted in and out of her just as she breathed, wafted and filled our house with an intangible protection. An we, unknowinglly, unseeingly ignored it ... until it was gone and now we can't figure out what is wrong.

And now she is sharing that with others. Last time I spoke to an adult at RSS, they said they wished they had 10 Jessie's.

Me Too....

Jessie's first visit home

Gary wanted to see Jessie and I was concerned about her seeing us. We were going to go over to RSS and take Charlie with us, but Gary realized he had a meeting with his scouts this evening, so suggested that we pick her up after church - she is about 5 minutes from church. I called and they said this would be fine.

She seemed very happy to see us. A bit of a problem that she could not find her cards (a roommate had hidden them under Jessie's pillow -because she was afraid 'x' was going to tear them up). So I got the cards, we loaded in the truck and home we came. She kept screaming 'the quilt'!, the quilt! and we kept telling her that she was coming back and would be sleeping with the quilt.

Gary and Charlie and Jessie watched a movie while I zoned in bed, lovely rest, just never can get as far as sleep. It was time to go.

A couple of times when they were in the family room, she yelled 'I don't want to go back', but then didn't obsess about it or cry or anything. When the time actually came, she gave me and Charlie hugs said good bye and was off to her new friends with a smile on her face.

OK, Y'all ... stop yer cryin' ...

I am sure Gary and I are doing enough of that for everyone - and we are all doing fine here. And, yes, Gary calls each day and we discuss the day - he always apologizes for not being here, and since he has been pretty emotional, maybe Spain is a good place for him right now - I only had to worry about Jessie, Ryan and my own emotions this week - maybe that was enough.

So - I thought that I would share some positives and 'funnies' from the past 3 days.

Monday - yes, I wanted to kill Jessie's lawyer, but when I spoke with Vicki Vacek on Tuesday morning and asked her if that was a bit weird - she said it was totally bizarre and she had never seen anything like it.... but the other couples lawyer didn't show - so they had to come back another day. Dudes - I would have rather been grilled for hours than not have him show - I am so grateful I did not have to re-schedule anything.


Wednesday - I called Jessies social worker - thought that maybe I should give her a name: Angie. She told me to rethink growing Jessie's hair out. On Tuesday at intake she had asked me if we wanted their beauty parlor people to take care of her hair. I told her yes, since I just cut it off with a blunt knife (kidding - but that is what it looks like). I told her she does not like elastics or clips in her hair so it needs to stay short. S0 - she was asking me to rethink her hair. She said the beauty parlor could braid it. She then went on to say she had seen LDS womens hair and thought it looked so beautiful braided. I thought this odd, but said, well if she wanted to try ... go ahead. As I hung up I realized: OH. MY. GOSH - SHE THINKS WE ARE FUNDAMENTALST LDS! EEEEEEEEW! You know I have been called a bunch of not so flattering things - but this one grossed me out the worst. I guess Gary showed up to the original intake with just one of his wives....

So - today I get the special opportunity of setting Angie straight and to try not to become a spitting, freaked out lunatic when I try to explain that no, I am generally not dressed in a lovely pastel, handmade dress. NO ONE has ever made the mistake of thinking I was FLDS - go figure - I wonder why?

So - any ideas on what to say to her rather than me just blurting out - YOU THINK WE ARE TOTAL FREAKS - WE ARE ONLY MORMON FREAKS (just a little freaky) ... let me know. Linda says there is a news release on the LDS website discussing the differences so I will try to get her e-mail address and (man I would love to write this rather than do it by phone) send her the link.

That is the sum total of what I need to do today - SET ANGIE STRAIGHT.

I called this morning and said that I really did not think that me speaking with Jessie was helping her (or me) and that I needed to give it some time, but really needed updates on her. They said she asks about going home, and they tell her she lives there now, and she is all "Ok, when do we eat?". They said she says she does not want to go to work, but then goes and the people at the 'work' place say she is enjoying herself and doing a great job. She showers both morning and evening - so my worries she won't stay clean are pretty much put to rest. And all in all they said each day she has become more social with the others and is smiling and acting pretty good. It was all good news, and good to hear. They also said she has been having a bunch of testing and dr / dentist appointments and that the nurse keeps telling them that her mother had taken such good care of her - flattering, yes, but hopefully they will get the message that said mother will kick there asses if she is in anyway neglected, not taken care of, etc - just sayin'...

So - we are all doing fine her. The house is so quiet I want to burst into tears every other second - but that is just normal - I am pretty sure. I have not had to get up early, break my back bathing Jess, or any other of the no-so-fun stuff I have had to deal with lately - so I dwell on those.

I think I am going to give her a month before phone calls from everyone - I hope that is OK, with y'all. I think she needs some time to process where she is. I would love to be able to tell Gary we are not going to see her for a month - but I am pretty sure short of sedating him for a month will keep him away. I don't know if it will be good or bad for her - but it will be good for Gary - so we will go as a family (maybe I will ask if I can bring Charlie) and just stay on site and go that way. I think that would cause her the least amount of regression - but that is some mother just rambling - I have no idea what I am talking about - just flying by the seat of my pants here.

Thank you for the comments - they have meant a lot to me. I will get the address of where you can send Jessie something - I think that won't be as confusing for her - it might be - but she will have something tangible she can look at that is new and that will brighten her day and I think confuse her less. I appreciate the prayers, that our names are in multiple temples and I know that I am dealing far better with this than I would have been 'alone' - so thanks again for your kind words, prayers and thoughts.

Lori

24 Hours and Counting ...

(I keep loosing my spacing, and had to put a '.' on the rows between paragraphs - too lazy to figure it out in HTML and too lazy to re-type it - so that is why they are there)

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Jessie and I showed up at Richmond State School (RSS) at 10:00 am yesterday. We had an intake meeting with her team - about 15 people including a social worker, psychologist, nurse, occupational therapist, vocational therapist, singing group leader, swimming leader, animal group person (I forget their title - there is are animals at RSS - horses they can ride and care for, and smaller animals they can play with - Jessie is set to work with the animals), and others who I forget who they are - supervisors, leaders of the whole school, the building she lives in (San Jacinto) and more.

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Jessie just sat there and answered a few questions, but was mostly Jessie fixating on her new quilt I gave her right before we left for the school. I told her it was for her new bed. She was very excited and called to thank Linda for putting it together (Linda - I did tell Jessie I 'made' it and you put it together - I am not sure she understood the distinction - but I know it is important to you that Jessie know I 'made' it even though I would say that you made it).

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When that was done, we were to go over to her new house: a building with 6 bedrooms, some bathrooms a community room - large with 2 tv's - in separate corners, couches, tables, etc, a kitchen with tables - tries to look homey - but seats 18 - so a little 'cafeteria-ish'. Some other rooms - a game room, an entry with a phone they can make calls on, the aides station, an other places - I was turned around and a bit lost - so more rooms that I don't know what they are.

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When we got to her room, the said it was temporary. We had mentioned that we wanted to bring Jessie's computer and two other women had computers so they were running computer lines into one of the rooms - a larger room that would facilitate desks better and Jessie would be moving into that room once they moved the other woman out. Her social worker (the one the 'does' everything for Jessie) said the two other women were higher functioning and very verbal and Jessie would enjoy being with them.

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But, as I said, when we got there - they indicated a bed in a temporary room. There was no armoire for her clothes and I asked about it. Since I was now speaking to aides, I was not getting anywhere. They indicated that all her clothes would need to be marked before being put away anyway - it is an iron on lable with her name on it - sort of felt 'prison-ish' but I understand it needs to be done. Even her underwear and socks - but she has funky socks and it would be sad if she lost them - she enjoys picking out her socks for the day.

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Needless to say, there was no set up. I put her containers of toys and books on the floor and her suitcase ready for processing and her quilt and pillow on the bed. Jessie still had her backpack with her containing her essentials - so I pulled out her woobie, dog book and Ariel blanket and asked her what she wanted to do. She sat down on the bed and looked very dejected.

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I was a little panicy since I had not prepared for 'dejected'. Exicted and telling me goodbye and pushing me out the door, crying and asking me to take her home - them I had worked out in my mind - but Jessie is never quiet and depressed/defeated acting. I asked her where her new bed was, and she answered 'here'. I asked here where mommy and daddy lived - and she said 'home'. I asked her where her new home was and she said 'here'. So she seemed to have a bit of a grasp on the situation. I told her that I needed to go and she quietly said 'I know' - which was very hard to take with a smile on my face. I told her good bye as she sat on the bed and refused to go anywhere with her aide. She has a one to one aide for at least the first 24 hours to stay with her at all times and make sure she knows where everything is and helps her. After 24 hours they re-evaluate and see if she needs it to continue.

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As I was leaving I realized that I did not bring an eyeglass case and there was no where to set her glasses at night. I could not meet to finish paperwork until after 1:00 and it was only 11:30 and I was feeling very naseous, so I left and got a coke, but kept driving all the way home thinking I would get an eyeglass case and come back. I promptly threw up when I got home. I called the social worker about the paper work and that I was not feeling well and to call me when it was a good time to come back in and finish. She called me back, said she would get Jessie an armoire and nightstand and a case for her glasses, and that tomorrow (today) would be a better time to finish up. It was nothing pressing.

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So I did not return that day and had meant to take photos. All I got was the view out of the front of her 'home'. There are picnic tables and she is close to the stables. Every year at Christmas they do a huge Christmas lights display and I hear that the majority of the displays are close by where she lives - so she will really enjoy that.

Jessie's front yard

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I called and spoke with the aide station that afternoon and said she was off being evaluated for vocational training. They have contracts to to work - easy stuff that Jessie is able to do and they get paid for it. There is a small gift shop on campus where they can buy thing and every Saturday they go shopping for small items - just to have fun and learn how to purchase items. They said she will be 'working' until school starts next week. They mentioned that if I called after 6:00pm dinner that I could speak with her.

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I called at 7:00 and they had been telling Jessie I was calling and put her on the phone. She sounded upbeat and told me that she had been working and had taken a shower. I asked her if she had done it by herself and she said no, the lady had helped her. She said she had picked the polka dot socks. I told her good bye and she seemed ok.

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I was up most the night throwing up (I think I have a huge ulcer since I seem to start throwing up at times of stress and when acid has poured into my stomach), so our scheduled time of 'after 10:00am' to come in seemed a bit problematic - so I called her social worker. She mentioned that she had moved her to her new room and she had her armoire and bedside table - so I felt better about her room situation. We can now go see how much room she has and Gary is planning on building a bedroom set that will include the bed (with storage in the headboard), and armoire, a desk and shelves. We just needed to see how much space she had.

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I then called the aide station to see how she had done and they said fine. She had showered again this morning, then gone to 'work'. She was back and they asked if I wanted to talk to her. Of course I said yes, but she was down again and repeatedly asked if she could come home. I kept telling her that was her new home and that I would come visit her soon. At least I was prepared for this - doesn't make it any more fun though. I will set up a time to go. The social worker mentioned that I could do the stuff I was going to do by mail - so not going in today. After hearing Jessie - I don't think it would be a good idea to see her for a while anyway - see if she can get her bearings a bit before messing her up and visiting.

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So that is all that has happened in the past 24 hours. I won't be as detailed in the rest of her days, but that way y'all know and I don't have to repeat myself over and over.

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Headed off to bed for a bit...

Steve Monk Attorney-At-Law: Second Act

They said that the commitment hearing was just a quick formality - the paperwork just needed to be done ....

... they lied.

There were multiple hearings / cases (?) on the docket so an audience full of people (picture Night Court ... but without the hookers). My hearing was third, after two probate hearings that took exactly a minute and a half each. I was thinking this was going to be cake. The ADA (assistant district attorney) said he would ask Vicki (from Texana) a few questions then ask me a couple and that would be it.

We were sworn in and then the ADA made an initial statement with 3 documents he asked to be admitted into evidence. My first clue things might be a wee bit more than 'just a formality' was when Steve Monk Attorney-At-Law for Jessie objected to one item. Seriously thought the dude was just a place holder. The judge let it in. My second clue was when on cross examination of Vicki Vacek, he asked her if she had seen any of the 'alleged violence' towards me (one of the reasons for Jessie going to Richmond State School) ... of course she said 'no' since I had not thought to drive right over to her office while bleeding so she could see.

True to his word, the ADA asked me a couple of questions. No one had mentioned that I would be cross examined - I guess I should have known, but you know me: stupid, stupid, stupid.

I was good, I answered every one of his 50 or so questions truthfully and with no emotion, just the facts. He seemed to think she would be better off at home or waiting for a group home to come around, or was just doing the shitty stuff lawyers do on cross. Like this was easy for me - committing my child to Richmond State School - lets just dick with the mom's head for fun. Ok, maybe due diligence for his client (Jessica) but what he thought was in her best interest was not in her best interest and maybe since he had seen her for, oh, I don't know - 10 minutes tops - he would not be the best judge of what would be good for Jessie and what would not be. So I am back with him just wanting to dick with my head or entertain himself on an otherwise boring afternoon....

The judge granted the commitment.

I am sure everyone else in the audience wondered why, after I had turned away from the judge and lawyers and walked from the room - was I crying? I won after all ... didn't I?

Pre Court Prep

Events in Jessie’s past have been scrolling through my memory this week. Lying in bed this morning wondering why I could not blog about the next two days and analyzing comments that tell me to stay positive – when I have written about some memory or other that I did not think had a negative spin, I realized that all these events have something in common. They also have something in common with the events of the next two days.

I remember dressing up to go into the intensive care room after Jessie’s cranio-stenosis repair surgery to see her for the first time. They had peeled her face down, cut her skull up and rearranged it, complete with wiring her eyes out. I was warned there was a lot of swelling and she did not look good, and I was alone.

I remember the moment the nurse came in to the waiting room at Texas Children’s Hospital to tell us that Jessie was now successfully on the heart-lung machine – prior to her open heart surgery repair.

I remember leaving her for the first time with a babysitter. Stressing her medications – too little and she would die, too much and she would die (what fun for the babysitter).

I remember worrying about Jessie getting her first period, and what was I going to do about it.

I remember after Jessie had her Grand Mal seizure and was paralyzed down the left side of her body – testing to see if she could move her arm or her leg. The answer was no and I was thinking she had had a stroke.

These things float in while I am thinking about court. Trivial things about court – what should I wear? What are they going to ask me? Am I going to find the room? Was I supposed to call and tell them I was coming? How many people are going to be there? Should I be doing this alone, or should I ask a friend to come along with?(I just tell myself I am a wuss with that question)

They float through while I work on a packing list of things to take to Richmond State School. Does she have enough underwear? Does she need new shoes?

They are there when I think about what I am going to say when I leave her at Richmond State School. What do you say? Here is your new home? See ya later? Have fun?

The memories are all there, intermixed with my current questions – generally so trivial – an odd combination. Then I realized this morning that they all have the same thing in common: I was / am terrified. My scrolling through time is not, I think, a negative thing – it is an affirmation that it was scary, yes – but I got through it and life went on – no big deal. The day came and went, and the next, and the next … and each one got easier. I can do this – even though I am terrified and don’t know what is coming in court and don’t know what to say to Jess when I leave – I will do it and it will be fine, or not so fine, but the days will go by and things will get better with each passing hour, day, week until they become a memory just like the others, and no big deal.


This may sound like I am rambling, but I have sat down to write about going to court six times and could not do it. It is very cathartic for me to write, but having some tell me to think positively, in my mind I infer that my writing sounds like a downer. It is more just me working things through. It is not as scary if I can put it down on ‘paper’.

So I am off to court – in two hours. Terrified, but knowing that I can do it.

"The first thing we do, let's kill all the lawyers."

William Shakespeare, King Henry IV, Part II, Act IV, Scene II, Line 86....

I go to court on Monday (exactly 3 days, 23 hours and 42 minutes from now) to have Jessie 'committed' to Richmond State School. This, as I have mentioned, was news to me and for some reason bothered me and threw me for a loop. Everyone assured me it is just a formality, but I was still uncomfortable with the whole scenario. But maybe it was not the actual hearing itself that I was uncomfortable with ... Cue the Lawyer - Steve Monk: Attorney-At-Law and representing Jessie.

I thought that I would see him on Monday, sort of a court appointed lawyer – just showing up for the hearing, but yesterday he called and said he needed to speak with Jessie, make sure she understands what is happening to her. “You do realize that mentally she is 3 years old?” I asked, inferring that no amount of esplanin’ was going to get my daughter to understand. He said he reviewed the file and was under the impression that she talks incessantly. Not really understanding this sharp veer off topic – I had to agree with him. Someone had told me that they had obtained a special waiver that exempted Jessie from having to attend the hearing – my thinking: because she would not understand, maybe his thinking: she talks incessantly.

I asked him when he wanted to speak with her and he said he had time that afternoon – so yesterday it was. Jokingly I mentioned that it would be really, really great if he did not mention that she was going somewhere since that incessant talking? Well let’s say that it would become more incessant: perpetual, non-stop, constant, never-ending, unceasing, and unrelenting – not to mention really annoying. He said that was exactly what he needed to do – by law.

He went over to speak with her at Bonne’s since she was swimming in the pool and it was closer and more convenient for him from his ‘downtown’ Richmond office. Since I was home throwing up, I missed the chat, but Bonne said that he was very kind, told her she was going to be going to a new school and would she like that? Jessie said ‘yes’ (I wonder what would have happened if she had said ‘no’?). He also asked her if it would be OK if she didn’t go to the court hearing and Jessie indicated somehow that it was fine by her … so his job was done.

I picked her up approximately 21 hours ago and she has asked me if she is going to a new school, could she pack, could I take her, could daddy take her, etc at least 2000 times and she slept for a good 8 hours of this time. Ok, I get to multiply one question by 5 when she comes into my bedroom and pokes me in the eye and THEN asks me. I was up most of the night throwing up and was laying down today trying to get some sleep, Ryan is at work and she she has a gift of walking in and poking right as I am drifting off to sleep - so extra points.

She has no idea what she is talking about, but is super excited. I am happy that in her mind she is on her way to a new adventure, but it would be really cool if she would stop asking the same questions. She is already packed – taking the essentials in her backpack: Her Ariel quilt (a small quilt Linda made her previously – not the new one below), a woobie, a pack of princess cards and a book about dogs.

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She is ready. My mind on the other hand is screaming: "I'm not ready!" about as often as she asks me if she is going to a new school.

*****

Also on the "Top Ten Things I Will Miss The Most" is Jessie's packing skills - and knowing how to bring just The Essentials: A handmade quilt: to keep her warm and remind her of her friend who loves her dearly, Princess cards: something to play with, Her dog book: something to read and her Woobie: something to comfort her and make her feel safe.

Have I mentioned I have friends?

I came home from Norway and was blissfully unaware that I was without an operating sewing machine for over a year. When it came time to pull the 'ole Viking out, a vital piece of plastic popped off. My workhorse of a sewing machine for my entire married life had died. I started looking at other Vikings and realized that I did not sew enough to justify the non-1979 prices. I had helped a lady program her programmable embroidery machine and was really, really coveting it - but since she had mentioned that it cost about $6500.00, well, it made the Vikings look cheap. It got me looking at embroidery machines though.

I wandered over to my good old friend Amazon.com and bought a Brother embroidery machine that was less that $400.00, stitched a straight line and most importantly: embroidered all the Disney Princesses. It embroiders other things also, but the selling point was that I could buy a card that had all the princesses on it (and other cards also). OK, and it stitches more than just straight lines. It is a fun toy and I was enjoying playing with it when Gary suggested that I stop goofing off and start embroidering stuff for something ... say - like a quilt.

I said OK and started embroidering the princesses on white squares of cotton fabric. I have never made a quilt, thought of making a quilt or really wanted to make a quilt, but I enjoyed embroidering the squares! The level of my seriousness at the time is best described by where I was getting my fabric. Did I go to the fabric store and purchase a bunch of fabric to make the squares? No, I was cutting up old European style pillowcases that we did not use - good fabric, just didn't like the pillowcase style. It is a good thing that I tend to over buy my linens - I had just enough.

It was very calming and when I was having a panic attack, depressed or just in a mood, I would go into my craft room and watch a princess appear out of nowhere. Seriously, no talent required whatsoever.

I started accumulating a bunch of squares and decided that I should really make Jessie a quilt, so I bought the sashing and the back and thought: 'for her birthday'. That came and went and nothing happened. Then I got the Phone Call. Now I wanted her to have the quilt when she went to Richmond State School and I wanted our names to be on it since they were words she would recognize, but still - I had not grown any quilting skills.

Linda, my very wonderful talented friend knew about my quest and had seen the squares. About two weeks ago, she took pity on me and said - 'bring them over'. Today she called and this wonderful, wonderful person had finished my Jessie's quilt. I know she has no idea what it means to me - she does these sorts of huge random acts of kindness on a daily basis for everybody - she is a saint - but for me - someone not used to having friends who will just make a quilt for you because you happen to be incompetent - this is HUGE. I know Jessie will love it and it will bring her comfort during those confusing times when she does not know why she is where she is at and the 'Where's my Mom and Dad?'. We might not be there, but she will recognize our names. And princesses make her happy.

What she probably won't get by looking at the quilt is that she is part of a family who loves her (look horizontally) and that she is a princess (look vertically), but that does not mean it is not true.