I've Been Slacking!

I freely admit it that I have been slacking lately with keeping up with the blog.  In my defense I have not been feeling very well.  For the last four months I have not felt well and things have been getting worse.  I have been complaining for the last year that my hair has been falling out and it is so bad not I can see my scalp through my bangs.  I have been battling chronic anemia since the birth of the babies but I have no idea why.  I take iron pills until I am good and a few months after I stopped I would be anemic again.  So I went to my primary doctor and discussed with her my issues.  She was not helpful because she told me to see a series of specialists. The dermatologist said it would not be something she could help me with.  I have gone to a GI doctor.  After being invaded in all sorts of ways that would make an alien abduction story sound tame the GI doctor determined I do not have issues with gluten, lactose, or have an ulcer.  I thought I had an ulcer with all the symptoms I have including the chronic anemia.  I was wrong.  So what's my problem...why do I have the chronic anemia?  So far, who knows?  I also do not know what to think about my hair.  So I have have several other appointments lined up.  One with a hematologist and an endocrinologist.  Hope to find an answer with someone.

Thanksgiving Day 2013

As for the children.  Well, they are far more interesting to talk about and I would guess that is why most people read the blog!  Near Thanksgiving I had all the children lose at least one tooth. It was VERY cute.  I love the picture I took of all of them smiling.  Joseph has both of him front teeth missing.  He had those pulled out when he was at the dentist in Las Vegas.  Then Margaret has lost her left, top front tooth.  James lost his top, left tooth that day!  Very cute!  Lots of smiles and not as much teeth!  Thanksgiving was a nice time.  We had moved into our new house near central Phoenix. I had Maddi, Dimitri and Jerrin all here at that time.  It really was a nice Thanksgiving!

I will have to cover the children's 6th birthday some other time. 

Christmas was a stressful time.  We were running VERY low on money.  I was back logged in bills and struggling to support everyone one in the house.  My oldest son was helping out too.  He had taken a part-time job at FedEx and was helping out with food and bills in the house.  Jerrin soon left after Christmas. He went back home to the 16 year old he was seeing (he is 21).  I cannot help but say what is in my heart...they do not belong together.  Because of that I did not keep my mouth closed and told Jerrin what I thought.  In doing so cost my relationship with him.  If that is how things need to be right now then that is the case.  It breaks my heart but I understand he is following his heart.  I just cannot support in that endeavor at the moment.

New Years was quiet.  John and I enjoyed our 14th wedding anniversary.  It was nice to have a little time alone.  By the end of January Maddi and Dimitri had moved out.  I hated to see them go.  I really did.  John and Dimitri were seeming to argue or have some sort of issue most every day.  I honest think John was the cause of a lot of the issues.  I don't think he meant to be but subconsciously I think he wanted to have the house to himself.  After Maddi and Dimitri left John and I were coasting along but things were tense.

We were finally able to find someone to do rehab.services for the Margaret and Joseph.  We also found someone to give us some respite.  So in the 18 months I have been here I have only been successful in getting rehab. services and some respite set up along with a little intermittent physical therapy services.  My children need so many other therapy services and I just cannot find service providers here.  Just getting into some doctors too can be a chore.  I have been trusting John to handle those duties and I have been trying not to interfere but it is getting harder.  I know I need to get the children in to see doctors and specialists and the time is running out for me to have "good" insurance and the appointments are SO far out into the future!

My time is running out because I think the plan is for us to return to Las Vegas.  John and I both like it there more.  I can get the therapy services I need for the children easier.  The therapy services, especially at this age, is significantly more important than them seeing doctors.  I know Joseph is a medical mystery.  We are still at a lost.  In Joseph's recent deep muscle biopsy test and lumbar puncture we still did not find answers. Joseph's test from the lumbar puncture did not show cerebral folate deficiency.  That was good news.  In the muscle biopsy test on the other hand did not show me what I wanted.  The purpose of the muscle biopsy was to test for some of the more "common" forms of mitochondrial disease.  Oh course, Joseph tested negative for all of those.  That does not mean there was nothing found that was unusual in his biopsy!  Joseph showed an increase in positivity for acid phosphatase and he showed abnormal storage of lipids (fats) in his muscle tissue.  Not enough for the pathologist to be able to diagnose a specific disease but enough for it to abnormal.  In the end the pathologist said he could not exclude mitochondrial disease (because there are other forms that cannot be tested but are determined by ruling out other diseases) but said Joseph should be examined for an "unspecific" (the pathologist's word and it means he could not point to any one disease because Joseph's symptoms were not severe enough) metabolic disease and genetic testing.  Ironically, I have done the genetic testing.  Nothing was found there.  That does not mean I would not revisit the genetic testing again.  Tests do change and improve.  Metabolic disease on the other hand is not something we have thoroughly investigated.  Joseph has had abnormal blood work that points to possible metabolic disease but it has never been to the level that a doctor could point to some number and say....hum, looks like we have a problem with so-and-so disease.

I cannot state how frustrating it is to know something is wrong with your child.  You fight years and years to get specialist to see your child as something more than just a preemie that is having problems.  Once I finally got to Phoenix...that happened.  I have specialists here that agree with me. Something is wrong with Joseph.  As to what that is, it even has the specialists here stumped.  All I want is to know what is wrong and if there is anything I can do to help Joseph reach his maximum potential.

Sigh, okay, enough venting about Joseph and his team of doctors.

John and I had a really nice Valentine's Day.  We got to go out on a real date and have a nice time.  I was worried that things would not go well for us since I knew there were relationship issues we had to discuss but we had such a nice time.   We did not do the things we wanted to on Valentine's Day because the relationship stuff turned out to be a HUGE topic and pretty productive discussion overall.  Currently John and I feel closer to each other than we have in years.  I am happy right now and so is he. I wasn't sure if we could have happiness like that again but it seems like we can.  I think it has been helpful to have all the twenty-somethings I had in my house gone. This has allowed John and I to be more ourselves.  To have our time alone in the evening and the space to fight (and/or make up...LOL) as we wish is rather priceless.

Okay, now that I am caught up I will work on keeping the blog more up to date.  Having a desktop really motivates me to write!

Does Anyone Have A DeLorean I Can I Borrow?

Photo Credit: Forbes.com

I would image you would have to be at least 20 to even get that reference….lol. I would love to have a time machine so I could go back in time and re-do some of the things in my life. The most recent incident is allowing the DDD to come into my home. Here I was trying to get a some benefits for my children and instead I get CPS sent to my house instead. It is an awful feeling of dread every moment you know they are investigating you. I took a Benadryl last night because my eczema is starting to flare up…I imagine due to stress… and I overslept. When I work up it was still dark out and I had not heard any conscious noises but I did see out my window flashing lights. My first thought was to panic and that CPS was here to take away the children. As it turns out the flashing lights was the garbage truck but it gave me a momentary start. What a horrible way to wake up plus I was running behind in getting to work. Not a good way to start my Monday!

Since I last posted I spent Thursday night in such distress I was crying and up until 1am. I was worried the CPS worker was going to show up and take the children from me before their birthday. Though I am not worried about not getting the children back I was worried that I might miss their birthday because she can take them (potentially) for up to 72 hours (might be 48). It would be my luck she would take them and the time would extend over their birthday. James has been talking about his birthday for WEEKS and I do not want to disappoint! It looks like we are going to do a glow-in-the-dark themed party. I have to check out some party supplies but I think I can get everything done. Margaret has requested a Hello Kitty carrot cake. I will see what I can do…lol. James wants a chocolate cake with vanilla icing. That will be easy enough. Joseph hasn't made any requests so I am giving him the same thing. There are so many details to the party I have to take care of but I am hoping I can get it all done in time. I am going to try!

As a side bar…John complains I never say anything nice about him in the blog. Usually that is because I am complaining about him. I have to say though on Wednesday I had called and let him know what was going on and to be prepared for a potential phone call. When I said what was going on with CPS he was really annoyed. He could not believe that something so small had been blown so out of portion. On Thursday night, while I was stressing out and crying, I texted John. I woke him up but he texted me back. We texted back and forth for an hour. He did his best to try and reassure me that not only am I right about what I am going concerning the lock on the door at night but reminded me of a few other important things I needed to do. He was a champ and even made me laugh at the end. I needed that! So I wanted to more “formally” say, thank you!

I reached out to my network of Facebook friends. I know several of them have been investigated/harassed by CPS over the years. One friend I have has become, essentially, an advocate against CPS. We spoke at length and she told me that I had rights and where I could access the laws that govern what CPS can and cannot do in Arizona. Being a fellow state worker I understand the CPS work’s job is important but she is barking up the wrong tree in this case. Currently I work as an environmental planner. This means I am familiar with finding statues (state and federal), reading, interrupting and applying law. Now that I know I have rights and what they are it makes me a bit more at ease but at any moment the CPS worker can go and declare the children a dependent of the court and at least take the children from me for at least a few days. On the other hand this woman has already violated state law herself. Arizona Revised Statues state…

8-803. Limitation of authority; duty to inform

A. On initial contact with a parent, guardian or custodian under
investigation pursuant to this article, a child protective services
worker shall inform the family, both verbally and in writing, making
reasonable efforts to receive written acknowledgement from the parent,
guardian, or custodian, of receipt of all of the following
information:

1. That the family is under investigation by the department.
2. The specific complaint or allegation made against that person.
3. That the worker has no legal authority to compel the family to
cooperate with the investigation or to receive protective services
offered pursuant to the investigation.
4. The worker's authority to petition the juvenile court for a
determination that a child is dependent.
5. The person's right to participate in a mediation program in the
attorney general's office. The worker shall provide the telephone
number of the attorney general's office mediation program.
6. The person's right to file a complaint with the ombudsman-citizen
aide pursuant to section 41-1376. The worker shall provide the
telephone number of the ombudsman-citizen aide.
7. The person's right to appeal determinations made by child
protective services.
8. Information outlining parental rights under the laws of the state.

So far the CPS worker has said nothing besides that she wants to ask questions and see the children. I have yet to hear anything on WHO is being investigated, WHY we are being investigated or we have RIGHTS. I can guess at the information but I am not sure. When I called and spoke the CPS worker on Friday she said she would not be able to come to the house that day. She was working on-call and might be called away so she wanted to wait for another day. I said that was fine. She asked if I could meet early on another day next week and I said I could arrange it to be that way. Since I work we are expected to be in the office Tuesday to Thursday without fail. She asked if Friday would be better and I said yes. She moved the time to 4:30pm. I told her that worked even better for me. Now we have an appointment set for this Friday at 4:30pm. In that initial contact and first phone call the CPS worker started off the conversation in a hostile time with me saying, “I never got to see the children.” She said it in such a rush I did not even understand what she said. I said, “Excuse me?” The CPS worker than stated again, “I never got to see the children. There is only a 3 inch crack in the door and I could not see them.” I told her, “I never said you did. I said you were SCARING my children and I wanted to make sure it stopped.” The CPS worker said she did not do that either. I pushed it off as Bailey can be melodramatic so calm things down. I said I would meet with her on that Friday at the house. What I did not tell her is that I still have of intention of letting her inside. Now that I know I do not have to cooperate with the investigation I do not plan to except as it basically pleases me. The police came by the house and saw nothing was wrong. If so I know he would have stated as such and the children would have been removed. I am now working on getting a copy of the police report.

So this week I get to stress about the CPS visit, try and finish up things for my children’s birthday party, send out the invites today and tomorrow for the party, go to work and try to be present in my job, and I am sure do a load of other things I cannot even think about at the moment. Life is hectic!

Photo Credit: glowstickfactory.com

Over the weekend I did get something done. I needs to get more birthday supplies. James has a VERY certain scenario set up for his birthday in his head and I want to make as much of that happen as I can. Sunday we went out to the park for two hours. It was SUCH a nice day. I found the nicest little park called John Allen park near our home. It was just the right size for the children to play and it was not busy like Freestone Park. Plus there was easy access to the park for Joseph. While there though Joseph fell down some steps. He had been going up the steps several times but I had been there to make sure he made it up ok. There are a lot of stairs and they are rather steep. Each time he made it up with one problem. He would go to the other side of the playground equipment and slide down the spiral side. He was having a blast! James was running around and I saw Joseph playing in the sand. I left him and sat down with James to get his shoes on. As I was getting James’ shoes on I her Joseph crying (but not the “bad” crying when you know someone is SUPER hurt). He is sitting at the base of the stairs. The other little girls who were at the park go over to him. I finish tying James’ shoe so he would not lose it and go over. I pick Joseph up and I see a HUGE goose egg starting to rise right between his head. I could tell somehow he had started to go up the stair and then fell. As I looked at him later he had a couple of more places. My poor baby! All I can say is I am glad he avoided his mouth. With all the dental issues he has had because of falls like this I am glad he did not crack a tooth or bust his lip. I wish I knew why he has been SO delayed in walking and seems to have such major balance issues. I am hoping the developmental pediatrician will have some answers. He has an appointment to be seen in February. Can you believe I made the appointment in August BEFORE I had even left Vegas?

Today is Monday and I have to find a party supply place. I think I will be trying to get in early to work for the rest of the week so I can make up some time. I want to take half the day off on Friday so I can get the last things done for their party. I am REALLY looking forward to the celebration and surprising the children!

Now I Know Why I Have Been Losing My Hair...

hip2give.blogspot.com

It is due to STRESS, STRESS and MORE STRESS!!!  I hope it is anyways.  Then maybe my hair will grow back one day. Sigh!  Ok, so lets start with Monday.  It was my first day back to work in almost five years. The night before I get a message from my husband, the man who left, on Facebook.  Yet again he does not seem to understand, or worse yet, he does not care how much I resent leaving my children and returning to work.

Hey,

I just wanted to tell you good luck tomorrow. I know you have been waiting for this moment for a long time. I have been praying every day for you. I know it will be tough to be away from the children, but it will also be good to get out there are do something you have been planning for and educating yourself for. I will be thinking about you tomorrow and trying to send you good vibes. I assume you found a babysitter. I hope she works out well and you like her. I know she will love the kids...everyone does.

Does the hotel have a phone number I can call? I'd still like to call the kids after school tomorrow, and I know you will have your phone.

I will talk to you soon.

John

Here is my reply....

John,

I have NOT been waiting for this moment for a long time. I had this moment FORCED upon me when you decided to leave us without sufficient means of support in July. I have been planning our move since I have been offered the job. In six weeks time, with very little help from you, I have had to pack, move and try not to be homeless.

You KNOW I have no desire for this job. Yes, it is what I went to school for and this position is perfect for me career-wise but YOU KNOW I did not want to work until next year. That the children, in particular Joseph, still need me. It is not a matter of just "being tough being away from the children" but they need me to take care of all their emotional, medical and school needs. It has been very tough for our autistic children to make the transition and the stress and lack of routine has all ready begun to show in behavioral issues. I see it as SOLELY YOUR responsibility for the emotional and behavioral problems you have caused the children by having me leave them.

Don't wish me luck or send me good vibes. You have not been a part of this in ANY way except CAUSING all of this to happen! You have done the bare minimum for me and the children. As you said you ASSUME I got a babysitter. You have NO idea what I had to do , who I got to watch the children and how it was done. I have found someone adequate but she will not be able to serve long-term because she cannot drive. So she cannot care for the children after we get out of the hotel. She cannot take the kids to any doctor,therapy or school appointments. I have to continue my search for a sitter. Even paying someone ALL of the child support you send apparently is not enough to hire a quality sitter so I am not sure what I am going to do since I need my income to pay rent, food and other bills.

As for calling the hotel you can try but the room phone is unplugged because the children will not leave it alone and had randomly called a few people in the hotel. I suggest you call in the evening at 8:00pm. Then they will get a chance to speak with you before bed.

Michelle

Now that was how I was greeting on Sunday night.  I went to work Monday.  My nanny showed up on time but I was late leaving the door.  It was hard to leave.  Off to work I went.  I used the GPS on my phone and after a wrong turn (my fault) I made it to the right area but I could not find the building.  I was SO glad I left the house at 7:15am and told my work I would be in by 8:30am.  My work was on jackson Street and I could seen the number jump in a HUGE way so I knew I was missing something. I pulled into the parking lot and I got out of my car.  The VERY first person I saw with a badge on I asked where I needed to go.  I was lucky because they knew. Thank goodness!!!  By the time I got in it was 8:20am.  I got there 10 minutes early! Yea!  

I was there for a bit and I get my first call from the nanny.  She was just checking in.  Good.  I keep busy at work reading material and getting all the newbie stuff done.  I get a second call after lunch.  This call was not good.  Bailey, the nanny,  says James was playing the Kindle. That is good in a way because it keeps him busy and out of trouble.  While he was playing Margaret goes over and tries to watch.  When she does James hits her.  Now, when I am there, I make James apologize to Margaret and say he is sorry for hitting her.  That is the end of the discipline.  Bailey on the other hand him in time out.  James has not been doing well with time out.  She tells me that he is crying hysterically and had been hanging his head on the wall.  That was when she decided to call me.  She put James on the phone and he was crying so hysterically that I could hardly understand anything he had to say.  

I spoke to him and said he needed to calm down.  I got him telling me he was in trouble and he was sorry.  It  broke my heart.  I said it was ok and he could not hit his sister.  He had to go and tell her he was sorry and give her a hug.  He got off the phone and I had a talk with Bailey reminding her that is he is getting hysterical like that then the form of discipline she is using is not working.  She said she did not want him to get away with the behavior and I said I agreed but that is why I make him apologize and say he is sorry and then give a hug.  I hoped she understood why I did not really want him in time out any more if he is getting hysterical.  

When I hung up the phone I could think of little else until I got home.  I cried at work.  I wanted to be home with James.  He is NOT taking this transition well!  The behavior I have been seeing is something that I have NEVER seen before.  I had NEVER seen him bang his head on the wall when upset.  :(

When I got off work and got home all was quiet at least.  Or so I thought.  I was trying to get the children ready for bed when Bailey called again.  She told me she was approached by the hotel manager and told that SHE was going to get kicked out if the children were so loud that someone complained again.  She was concerned about coming over to watch the children today because she is afraid of someone complaining again.  Baily, God love her, is a VERY nice lady but I am not entirely certain she got the details right on that. I would think WE would be kicked out of the hotel if we were loud again.  I hope not!  This just emphasizes the need to move into a home of some sort.  With my credit being trashed now I am not sure if I can make that happen.  We HAVE to get out of here though.  The children are bouncing off the walls here because the hotel room is so small.  Bailey is doing a good job in trying to take them out.  She walks them over the convenience store and swimming but they just need more space to run and play.  To spread out and not be on top of each other like they are in the hotel room.  Plus they REALLY need an enclosed yard to run around in.

Ok, so today.  Bailey comes to work.  I tell her let James play the Kindle all day if needed. I HATE that because I don't want him dependent on it but on the other hand I do not want ANY of us thrown out of the hotel!  I left for work.  It seems it takes me 45 minutes to get there.  I made it to work and my day was going ok.  I was calling to check in on James an hour after I left.  Everything was fine.  I got a call at 11:35am and it was Bailey.  She was saying she was not feeling good.  She said the kids were fine and she had to get after James once while they were out at the pool but that was it.  More of my day passes.  My boss comes by and says there is a conference meeting with the EPA representative at 2pm today and I needed to be there and so will HIS boss.  At 1:00pm I get another call from Bailey.  She says she is feeling really sick and her grandfather got her an appointment to the doctor at 3pm.  She wanted to know if I could come home.  Since it takes me 45 minutes to drive to work I figure I have to leave by 2pm.  Of course this is RIGHT at the time of the conference!  Sigh!  I can't catch an effin' break!  So on my second day on the job I have to go to my boss and say I am sorry but I have to leave.  I am going to have to make up the lost work hours since have have no time accrued anywhere.   

I come home and Bailey leaves.  I am thankful I hear later that it was a very large stomach ulcer that was giving her a problem.  She is now back on medication for it but she tells me that the medication makes her sleep so she is worried that she cannot continue working for me full-time.  She wants to work part-time and find someone else to fill in the rest of the time.  She said she could work for now but I need to look for someone.  Back to nanny hunting for me.  Sigh!  

I am tired.  SO VERY TIRED!!!

Should I mention STRESSED too?

Has Hell Frozen Over Yet?

Photo Credit:  america-report.blogspot.com

I know my husband (he left at the beginning of July) has been reading my blog.  At least occasionally.  I know because of things he has said.  I am surprised!  He had not read what I wrote before.

John arrived at my house this evening.  James was SO excited!  As I was getting ready to leave I asked John if he could take off from school on Friday so I could go and see my regular doctor to get refills on all my maintenance medications before I left town.  Plus I was hoping he would take the children early so I could see about trying to get a moving van and get the house packed and moved.  John said he would not be able to get Friday off.  It was a high demand day for subs (what difference this makes I have NO idea) and that progress reports had to go out.  He did not want to leave that duty to a substitute.  I kinda understand that one but on the other hand it is not every day that your wife and children are leaving for another state.

John said the best he could do was Thursday.  He said he could take half a day off on Thursday.  I asked if the whole day was possible but he said no.  So I asked if he could show up early (instead of 6pm) when he picks the children up on Friday.  John said why was I asking for things at the last minute.  That he has plans.  Why didn't I ask earlier?  First off, let me think for a moment, I may be a bit scatter brained lately because of all the stress I am under.  It could be because I have been busy making calls and trying to get information together to take to Arizona. Set up doctor appointments (here and there).  Get the children and I to our needed appointments over the last three weeks.  Make calls to try and keep us from being homeless in Arizona.  Writing in a blog asking for help from strangers because my husband, and father of the children, is not helping in any way with the move.  I am sorry but I have been a bit busy!

It had dawned on me last night that I would need somewhere to stay Sunday night.  I asked John tonight if I could stay at his place on Sunday with the children.  His first response was no.  He said he was not comfortable with it. What???  I was stunned.  I took a moment to get myself composed and said I am the mother of your children, your wife of all most 13 years and you cannot let me spend one night at your place since I have no where else to go???   He sat there and was thinking.  After a bit I told him never mind.  If it is going to be that hard of a decision then don't worry about it.  He said he should be able to think about my request since it was another last minute item I am bringing up to him.

Then he said something along the lines of why would I have thought he would just say yes.  Well, it could have to do with I would have said yes so I NEVER thought he would have said no or had to think about it. I walked out of the house.  I stood outside the door for a moment and then realized I had forgotten a post-it note I wanted.  I went back inside.  John said he was ok with me staying there.  I told him, again, not to worry about it.  He said he was not going to get in a fight with me.  He would leave before it came to that.  I said, "You are not leaving.  You are going to spend time with your children. I am leaving."  I walked back out the door.  As I am getting in my car he comes outside and says, "I would like you to stay.  It will be the last time I get to see the children."  Notice there was no mention of me.

I left.  I was heartbroken.  John has been so cool to me lately.  James telling me about some woman named Shawn.  His refusal for me to come to his place, the fact he smelled SO strong of cologne (I did NOT get) tonight the smell lingered in my house and he was texting makes me think he has some other woman in his life.  This hurts me.  I have asked him to get couples therapy with me.  I wanted to try and keep our family together but I am not getting that same feeling from him.  I can't be the only person trying to fix what is broken.

I called and talked to my mother.  Normally I call and talk to my friend Krissi but she has been busy with her own family drama so I have been bothering my mother.  She forwarded me a text tonight after I had left the house.  It was from John.  I did not know she had been texting him.  It said:

Cathy, I have helped Michelle with anything she has ASKED me to do.  If she does not ask, I will not do it.  Please do not respond to this message, and please do not contact me again. Thank you.

At least he was polite.  John and my mother have a very strong dislike for each other.  The part of this message that bothers me the most is John saying he has helped me do anything I have ASKED him to do.  That is NOT true.  Plus, wouldn't a TRUE man volunteer to help?  I had told him in the beginning I was not sure how I was going to make this happen.  I was worried.  John did not help.  He told me, "Don't worry. You will get everything figured out.  Wasn't it you who said where there's a will there's a way?  If you really want this job you will make it work."   I did say where there is a will there is a way.  The problem is that the way can sometimes get REALLY ugly!  If it was just me that would be one thing.  I could ride it out.  It is NOT just me though.  There are THREE disabled four year olds that have to come with me.  I have no problem suffering for my mistakes or judgments in life.  On the other hand I don't wish for my children to share my punishment.

As I said too, if John was a TRUE man wouldn't he have volunteered to help?  He was the one who left the house and left us financially stranded with no warning.  At least my first ex-husband did not do that.  I was seething with hate being cooped up in an apartment with him for four months but at least there was an exit plan when we BOTH left.  If John was really happy that I got this job in Phoenix wouldn't you think he would be excited for me/us?  He would be over and asking what he could do to help?  That the move would benefit ALL of us (financially).  Instead of being cheerful and helpful I have to ask, no beg, for help.  Even when I ask for the help it is not what I want.

After talking to my mother and telling her about John telling me I cannot come over to stay at his place Sunday night, and though he changed his mind, my mother was as surprised as I was.  She said for me not to worry and I could get a hotel room.  She said her and my dad would pay for it.  I am thankful.  After finding out his attitude I don't want to ask for anything. Part of it is pride but part of it is because I don't get what I am really needing.

I wanted to be there for John.  I wanted to love and be with him but how does he expect me to do that when this is how I am being treated?  Worse yet, this is how he is treating his children?  I am not sure what the future will bring.  I am not sure how I am going to make things happen but somehow I will work it out.  I will ask EVERY stranger I can find for help if I have to. I will do this without John.

If I have to ask John it may well be a cold day in hell before that happens.

Angry Mom

Photo Credit:  sheknows.com

Angry mom helps to describe me in so many ways right now.  The first way I am angry is at UCLA.  I still had not heard anything from them so I thought I would try calling again.  After waiting on hold for 20 minutes I finally got through to speak to a human.  I asked to make an appointment and I was told to hold again while I am transferred.  Someone picked up soon after and said they could set the appointment for the muscle biopsy.  Finally I thought!  I was going to make the appointment.  The woman said the doctor only does the muscle biopsies on Mondays and Wednesdays.  She asked which day I wanted and I said I was not sure.  I asked when is the first available appointment.  The first available appointment was October 26th!  Not only is this after I have to leave Nevada but it is right after or close to when I am suppose to start my new job.  Aaaaggggg!  So now I am not sure what to do.  I need to get the muscle biopsy done for Joseph.  I have been working on this really since LAST year and this year I have been trying to get an appointment since the beginning of August I think. Now that I am going to Phoenix and I asked the geneticist, who is wanting the muscle biopsy, if she knew of anyone who can do the procedure there.

The next thing that got me angry today is the Nevada DMV website.  I got a call from my new job in Phoenix.  I have been asking them for a job offer letter for the last three weeks.  I was told they could get a letter together for me but not until they can get my driving record.  I did not get this call until 3:30pm.  I looked online and you can order your driver's record from there.  I thought, great, and I got everything together to place the order.  When I put ALL the information into the computer I hit the process order button and I got sorry but our systems are down.  Aaaaaggggg!!!  I was told I cannot get my job offer letter until I get my driving record to them so something else to hang me up.

Finally I have noticed I have a lot less patience with the children right now.   I have turned into an angry mommy with the children.  I don't want to be like that to them.  I really don't want to be like that when I have so little time left to be with them before I have to be gone all the time too.  James cried to me several times today because John did not come by tonight or yesterday.  I am worried about him feeling abandoned when John will be gone and then I will be gone too.  James is all ready asking me to come to my room and lay down my bed next to me.  He snuggles close and I let him play the Kindle.  It makes him happy and I enjoy the time with him but this is something he has never done before.

I know my anger is related to me being stressed, depressed and anxious. Why shouldn't I be?  I have about 10 days to be out of my home.  I am not fully packed.  I have no help in getting packed.  I have no place to put my stuff even if it was packed.  I am not sure what I will be able to take with me.  I have no idea where we are going and I am worried we will be homeless.  I don't know who will be watching my children, how I am going to be able to pay for it and how/when I am going to be able to start my new job.   There are just so many things in the air. I may need to see a doctor for something to help me control the stress and anger.  This is a lot to be going through!

On the way to homelessness?

I have been having fun tonight listening to the wind howl.  A storm is moving into Vegas tonight and with it the wind speed picks up.  There are gusts out there at LEAST 50 mph!  The wind chime is going crazy outside!  Careful, wind chime noise in video is LOUD!

John got paid so he gave me $700 to pay bills.  This is more than he has to give me so that is nice.  I have the following bills to take care of:

Photo Credit: thesite.org

• $400 electric
• $100 credit card (I had all ready missed one payment)
• $85 credit card (same with this one)
• $40 health club membership (haven't even been going at all since we split up)
• $50 cellphone (only phone I have)
• $100 gas (will last my 15 passenger van about 2 weeks if I don't really go out much)
• $100 food (that is two weeks worth for 4 people (me and the kids)
• Other bills that may come up are water, gas, internet. 

I know, I have WAY exceeded the allowance I was given so what do I do?  I cannot continue to eat Ramen and popcorn for dinner.  WAY too much salt for me and not good for you in general.  Got to do food and gas.  So that is $200.  Got to pay at LEAST $200 to electric.  So that is $400.  Got to pay for phone!  MUST have a phone so that is another $50.  So that pays out $450 leaving me $250.  About to forget.  Got to get a case of diapers for Margaret and Joseph.  That is $40.  Plus I have two doctor appointments I need to go to.  That is $40.  So we are at $530.  Need a $70 copay to take Joseph to the pulmonologist.  I have the extra high co-pay because I had to miss the appointment last time because John forgot to give me the money before he left for work that day.  That makes $600.  There is an IEP meeting scheduled for Joseph and it would cost $100 for the advocate to be there.  I do NOT have the money for all of this!  I am not sure what I am going to do!  I think I will have to cancel the IEP and try to do one in Arizona when we get there.  I will have to see if I can find an advocate and how much they would cost.  I cannot be trusted to attend one of those meetings alone.  I am just too emotional and hot-headed.  I wind up saying things that I occasionally regret.  So I could easily spend all the money and still not even pay a lot of the bills I know about. Sigh!  This is why I am SO upside down on everything.  : (   

Photo Credit:  http://blogs.orlandosentinel.com    
Is this going to be us at the end of September?

I am in trouble!  Never, growing up in a middle class family, did I ever think my life would wind up like this.  I have been losing so much hair lately.  I am certain it is from stress.  What I am NOT stressed out about lately???  Moving?  How is it going to happen?  How am I going to afford to move my things?  What about getting a storage room for a bit (more money I forgot to add to my list of needs)?   How am I going to get my stuff to Arizona since I am the only adult driver and I cannot tow my van?  If I take my stuff where am I going to put it? What about money for gas to even drive there?  Am I going to truly wind up homeless?  If so where am I and the children going to go?  Can we live out of the van?  What about getting services for the children?  What about food?  What about child care?  I will not have money to pay anyone really until two weeks AFTER they have been watching my children. Since Joseph is medically fragile he cannot be in a daycare or school setting. So where does this leave me???  Plus James and Margaret cannot go to school because they would get sick and bring it home to Joseph.  This is why I have been home with them for the last several years.  This is by far the most balls-to-the-wall sort of thing I have ever done!  I have to make it to Arizona to take this job!.  If I have ANY hope of making my little family self-sufficient then I need, MUST HAVE, this job!  

The children have been driving me crazy because they are getting into everything.  I can't blame them really.  I have stuff pulled out all over the place.  They are fascinated by it.  Why shouldn't they be? James and Margaret were getting into all kinds of stuff, broke a couple of things and were not listening.  In the end I yelled at them and then broke down crying.  I cried in front of my children and the poor kids did not know how to handle it.  James was trying to be nice at that point and he gave me a hug and said he would not make a mess again.  That was SO sweet!  I shouldn't be crying in front of them.  It was just too much today. I am so worried.  When I talked to John about it he said not to worry that I would be able to figure something out.  Often, I would agree with him.  On the other hand I am getting really worried. 

I am still trying to pack things but it is hard with the children here and no one here to help me distract them.  After that my hand is the next big hurdle.  I have come to the conclusion it will never be right. The only good news from the carpal tunnel surgery is that my hand no longer falls asleep when I use it.  It hurts instead (sometimes very painfully) but in some ways that is better because I still have some kind of feeling in my hand.  Just makes packing difficult because I have a hard time moving boxes.  

I was having fun reminiscing over some old video clips of the children.  This is video of the kiddos when they were two.  Joseph is having fun and getting so tickled with what he is doing. He has SUCH a great laugh in this video!  You can also see James count (and sign) and Margaret sing her A, B, Cs .