My Life, My Adventures

Navy Familes

2010-05-22T15:55:00.000-07:00

I am not a Navy wife, girlfriend, daughter or Mother. But, I was in the presence of them recently as they said goodbye to their loved ones. I was in awe of these women and children as they gathered around for a final picnic (for now) together. Sticking close to each other sharing stories, taking pictures, grabbing quick kisses, longing glances, special hugs and soft touches that will have to last them until they get to see each other again. What I didn't see was any resentment or anger at the men for leaving them behind for so long. No arguments about staying too late at work or saying why me I'm being left here to carry on alone. They understand even though they might not like it how important the job is these men are being sent out to do.

These women and children are amazing, the sacrifices they make just astound me. They take care of everything while these men are gone. The house, the bills, the children and some while keeping a job too with little thanks and yet there they stood on that pier. Standing tall waving as their loved ones pulled away wiping a tear staying strong for the little ones.

I can't tell you how proud I was of my daughter that day, how proud I was of all of those women there. They say the men going out to war are hero's and I agree. But after being on that pier that day I consider these women real hero's too!

I didn't include myself in the beginning of this story because I have not yet become one of the women I have described above. The standards are high and I can't even stand on the pier without breaking down. I hope one day I will have half my daughters strength and be lucky enough to meet more of the women she has become friends with. Until then I will be working on my Navy Mother-in-law status.

Be safe all you men ... and to you women I hope this underway goes quickly and that your days go smoothly... it was an honor to meet you!

BBC "House Rules" Week 3

2010-05-21T00:25:00.000-07:00

Week 3 prompt: What do you think of the competency hearing? After hearing what happened in the other trial (the Bean case) did it change your feelings about how the hearing went?

That competency hearing was a joke! They had no idea what they were doing with a child like Jacob nor were they interested in finding out either! They should have been able to tell by his behavior that he was not a normal adult. They didn't notice the lack of eye contact, the rocking, the flapping? After hearing about the Bean case it terrified me that our court systems could be this incompetent! It didn't surprise me it saddened me that there would be no other outcome for him. What is even worse it took them 3 days to almost undo what it took her 15 yrs to do bring him back to this world and they were all willing to look the other way.

This is what terrifies me, my son is not violent he is a teddy bear anyone that knows him knows this! But he has Soto Syndrome a type of overgrowth Syndrome. So at 11 developmentally 7 in some areas in some he knows more than some college students. He is 5'7 260lbs in a men's 12 shoe. He will give you hugs and hugs on his terms but you hug him unexpectedly and he will think you are trying to hurt him and can turn raging bull. Put in Jacob's situation without me with him he would have been the same way fighting them screaming reciting movie lines trying to get them to understand him since he doesn't have the right words to use. His lack of social skills hindering his way to a fair trial and a system failing him, to ready to just put him in an institution. Like they were so ready to do when he was 3 and told us we would never get him back and he would be to big for us to control.

Sorry for the ramble but there is one last thing Shane my younger son... I see now through this book how much he truly was pushed to the side by me not intentionally I love him so much but I was concentrating so hard on trying to get Jor back to us that I let him slide. I knew I had a husband and two daughters but that's not an excuse. Would I have done that if I was a single parent without older daughters I don't know. I will now try harder to spend more time with him and hope its not too late.

Can I just say I love the book and I HATE Autism!

BBC "House Rules" Week 2

2010-05-20T23:47:00.000-07:00

Week 2 Prompt: In the book Theo talks about how he's scared to have kids and doesn't ever want to have any. Do you feel his feeling are valid?

Sorry I' m a little slow at the posting. I think Theo has had a tough childhood always having to be put to the side for his brothers needs so yes I think his reasons are completely valid.

Living with a brother with autism from what I can see from Shane ( Briana and Nicole were older) is filled with always being second. He has grown up to fast has to defend his brother when others make fun of him. Sees him go off to look for birds when the other kids at the park are asking him to go play tag. At 7 his parents (us) are asking him to try and understand his brother is different when he himself is trying to fit in his brother is embarrassing him and I'm sure he wants to say to us what about me!

Why would Theo want to risk bringing a child into this world that could have this... why would Shane? My hope is that they understand the risks are small, they would risk losing the greatest gift in the world.. a child. I hope I am doing a little bit better of job trying to spend sometime with Shane but then I am not alone in my fight the way Emma is.

This book is excellent but for me I must admit is hitting so close to home its getting harder and harder to read... and yet I can't put it down.

BBC "House Rules" Week 1

2010-05-12T07:52:00.000-07:00

Week 1 Prompt:
What are your thought on the vaccination/autism link? If you are a parent, did it make you do things differently with your child (no right or wrong answers here! This is not a debate forum). If you aren't a parent, if you were to have children would this new found research change how you would go about getting your child vaccinated?

My Answers:
From personal experience I had this 18 month old happy, laughing little boy who was always smiling. He loved to be read to was talking would say " I lub you Mum". He loved being outside playing on his slide with his little toes on the grass playing with the other kids. Having such a great time with his sisters and their friends and following Mum and Dad around. He received the MMR vaccine at 18 months and within 2 weeks it was like someone was just pulling him into a different world, one that didn't include us. The smiling stopped, he no longer looked at us anymore. Didn't want to be read to, screamed if we wanted to take him out, the running became a stumbling walk which went back to a crawl. The saddest part was the talking started to disappear and then it was gone... no more I lub you Mum!
Do I think it came from the vaccine...absolutely! Sit in a classroom with the parents of 15 autistic children and 13 of them will tell you this exact same story. My son never received the second dose. My younger son didn't get his MMR till he was 5 when I thought his body was more mature and could handle the medicine. His other vaccines were spaced out. In my opinion vaccines aren't bad it is the way they are given and what they were processed in. We are loading these small babies and children with so many vaccines at one time that so many of the kids systems are simply not able to handle it, and instead of helping them we are doing just the opposite. Sorry for the ramble but as you can see this is something that has effected our family very deeply.

I personally think this book is outstanding. I am the Mother of an 11 yr old autistic child who is also high functioning. Instead of forensics it is animals and dinosaurs. He can name them all where they live what era, what habitat what Continent. Names of dinosaurs that even with the pronunciation I have a hard time saying. He has a photographic memory. It is truly amazing. Take him some place once and he can direct you back there again that you don't need a GPS. But, put him in a room full of people and he falls apart. Too much noise and he will get more and more agitated to a point that he will have that same meltdown Jacob has in the book. People look at him because he looks normal and think he is violent or just stand and stare when he is having a problem bc a child starts screaming or someone starts blaring their music and he can't handle it. What he lives in everyday would be equivalent to us having people flashing a light at us blaring music while 4 people are trying to talk to us and 4 people are touching us. Like Jacob everything is black or white no gray area you tell him no secrets and he will tell everybody everything that happens in our home. lol I hope you guys reading this are getting a better understanding of children like him.

As for Theo reading this book has brought out my greatest fears I try to keep hidden. You spend so much time making the world right for the autistic child that the other sibling gets neglected. You try so hard to make it up to them but trying to take an autistic child to a wrestling match or baseball game is impossible. The guilt Emma feels is enormous I know. She must feel it so much more she has nobody to support her. I have great daughters. I disagree with Emma on letting Jacob have free reign though letting him ruin Theo's Birthday party is not acceptable. I think Theo as with any sibling there has to be some resentment.

I am looking forward to seeing what happens next in the book. Hoping that Jacob has not done something most people will think is terrible but in his limited mind he does not understand fully

Our Puppy Bailey

2009-03-10T21:37:00.000-07:00

I almost forgot we pick up our new puppy today at 4:30 in Harrisburg at the airport. We well more like me, I think I am the most excited to get him he is a little pekingese just one day older than Briana's. We are calling him Bailey and he is going to keep me company while I'm stuck in the house till they figure out what's wrong with me. Now Bella has Shane, Toby has Bailey and Jordan has Keith and Louie so the three of us girls can just sit and chat. AS if that is something that would ever really happen. It will be more like the house will be a zoo with the 3 of us chasing the kids and the dogs while the guys have to sit in their offices lol. Better loud and noisy with laughter and things to look back on then dull and quiet with no memories to share later! Today is a good day!

Here he is my little Bailey Bird of Sunshine Valley....get it Bran?

Finding a new name for my blog

2009-03-10T16:06:00.000-07:00

Well we got home from the clinic on Wed the 4th after driving straight through, I will never do that again it was insane! So the outcome of 11 days is that I'm having seizures they aren't sure what kind because I have the pacemaker in they couldn't do the MRI. So finally I have a diagnoses! The place is beautiful they believe in healing the mind body and soul, so they have the most beautiful artwork all over the clinic.

These are blown glass globes hanging from the ceiling they are just unbelievable to see the intricate work put into them.
These were all carved out of brass.

Then there were the times Nicole and Keith were bored to death while I was in being tested for hours at a time and they just took random pictures.

And of course we had to go see the Mall of America but of course I was to tired to even ride around the mall and Keith and Nicole were afraid of getting lost in it so we ended up driving there just to see the outside! lol Typical for us!

So now I'm home and my doctor's here don't agree with what the doctor's at the Mayo Clinic said because it means they misdiagnosed me having a mini stroke in 2005 so they don't want to give me the medicine for the seizures without further testing. So back to the hospital I go for a three day EEG while being taped so they can catch me actually passing out having a seizure. Can we say ready to knock someones head off! In the mean time I'm missing time with Bella and Bran and Louie when they came to visit because I slept through most of the weekend and I feel totally guilty about it so sorry Bran! The kids thought I'd be better when I came home and I'm still falling over so I feel like I let them down.

So back to my title I think it should be living life with the unknown. What do you think?

It's now Sunday night

2009-03-02T00:06:00.000-08:00

I saw the Cardiologist and it's def. not my heart! So that finally clears up the heart issue once and for all. They ran a bunch of test and said other than they fact that I need the pacemaker to keep my heart beating well, so we can finally rule out the heart once and for all. We spent the whole weekend mostly stuck in the hotel room because Rochester is the mayo Clinic there isn't much to do. We saw the mall of America I guess unless you go inside it doesn't have the same effect. Tomorrow is the big day I see the Autonomic Specialist. So wish me luck and I'll let you know how it goes. Keep me in your prayers.

I was suppose to post this Friday sorry little late

2009-03-02T00:04:00.000-08:00

Hi everyone just wanted to drop a quick note to let you know I'm doing ok. This place is amazing it's like a little city inside a city. The people could not be more helpful and friendly they do everything they can to try and put you at ease. I've had 6 tests done so far and passed out during two of them. Again during the tilt table test I passed out but they told me that got really good data whatever that means. They don't tell you anything. I had fat sucked out of my stomach they say aspirated they took two tubes I told them they could have it all they only wanted just the 2 tubes oh well I tried! I then went for a sweat test they put this yellow powder on you and put you in this box that only fits the gurney and they turn the temp up to 110 if you sweat the yellow powder turns purple well I looked like the one eyed purple people eater. The only place I don't sweat is the palms of my hands the bottom of my feet and my toes .I also had an EEG but I don't know how much they got from that because I was having one of those days where I just couldn't stay awake no matter how hard I tried. I look at it as at least I got someone to document how fatigued I get that I can't stay awake no matter what I do. So I don't know if that is going to have to be repeated. Today I go to the cardiologist so I don't know what kind of test he is going to order for me, As of right now they have my scheduled to be here till next Thurs. Longer than I thought and longer than Keith and Nicole have off. We are trying to see if we can move some of the test to like Monday when they don't have me scheduled for anything but I guess we'll have to see. I miss the boys like crazy I get to see Jordan every night because Kristyn and Deb have Skype but I haven't seen Shane at all. I'm kind of numb just going day to day test to test trying not to think of anything. Nicole has been having a hard time she misses the boys, her boyfriend and she worries a lot about me she see's how much the tests drain me. I think they are finding out some informatio n he re at least that's what it seems. I'll have to get Nicole to download some pictures so I can show you some of the artwork here it is just breath taking. Well that's it for now. I miss everyone, if you think of any questions I should ask let me know. Love to allDonnaps we are suppose to get 4 -8 inches of snow today and its suppose to go down to -9 yippie lol

Were do the days go?

2009-01-30T02:02:00.000-08:00

It's been awhile since I've written mostly because I can't stay awake long enough to write. First I could never sleep now it seems I can't ever stay awake. I don't know if it's a new symptom or just depression. Briana and my little sunshine moved back to CT. and it's so quiet without them here. We talk to each other on skype a couple times a day but I just miss holding her and having her crawl up on my lap. I'm sure she is having the time of her life getting to be with Daddy again but selfish MiMi is jealous lol.

It's getting closer to the time we get to go to the Mayo clinic and even though I refused to drive there and wanted to fly, guess who is driving?! I'm married 26 years and I still give in all the time because I swear men are worse then 2 year olds when they don't get there own way. He would be complaining the whole trip, if the shuttle to the hospital would be 2 mins late all I would hear would be" if I would have drove I'd have my car and we wouldn't be waiting"! I just couldn't handle listening to the whining the whole trip I have enough to worry about! Nicole is coming along to help him drive GOD HELP ME!!Just kidding Cole (insert nervous laugh here) If we get there in one piece it will be a miracle and I was really trying to save that miracle for the doctors to find a cure. I was really hoping Briana could go but with the baby it's just too much. This really ought to be a trip for the books. I plan on taking Xanax and zoning out for the whole 17 hours. Either that or I'll be on the phone to Briana bitching and crying the whole time how I'm never gonna make it there in one piece.

Well Louie is on leave right now and they are spending the week here so I'm trying to soak up the time I have left with them before they go back up for good now if I could just stay awake it would be great. Even taking another trip to the hospital for syncopal convulsions didn't help me stay awake, I came home sleeping even more. My days are flying by one into the next and I don't remember half of what's happened. I'm sad right now I feel like I'm missing so much of what is going on around me because I'm either asleep or I don't remember one day to the next.

I hope none of Briana's friends mind but I love reading your blogs, they make me laugh, some bring back memories of when the girls were young but mostly they make me happy that she has made a sort of a family up there. I'm glad she isn't alone and I know she said Kim sometimes reads my blogs so Hello Kim take care of my girls!

Well it's time to sleep again something new lol I'll write again soon with I'm sure some real exciting news (not) Love you Bran, Louie and My Sunshine Bella

So Much for the Brighter Days

2009-01-12T21:56:00.000-08:00

OK well I gave it a shot alright, I tried to be all up beat till I went to the Family Dx and the Bitch told me that if she found out I was left alone with my boys at all and I passed out she would personally call Children and Youth on me and try and have the boys removed because I was putting them in an unsafe environment. Like that wasn't a slap in the face. For 25 years I have taken care of my own kids had a day care in my home taken in foster children adopted a child with Autism and a drug addicted baby and now I've become an unfit Mother because I pass out! She says I should only be responsible for me and no one else. Now you tell me what kind of Mother can just forget about her responsibilities to her children and put herself first. In my book those are the kind of mom's that should have their children taken away. So of course I start bawling my eyes out and she tells me I'm too stressed out! Really?! I didn't know that! A year ago I'm running around driving working out chasing the kids and now I can't stand for longer than a few minutes, I can't drive I'm in a wheelchair and your threatening to take my kids. Hm mm wonder why I'm stressed. Oh and by the way she thinks I'm a little depressed too... idiot!
So my wonderful daughter Briana did all the wash packing and got the house in order for us to come to CT for the homecoming bc I fractured my right hand on my last fall. I felt like a lazy ass but with Hitler Briana barking orders for me to sit every second I was afraid to get up to pee. Bless her though she was so stressed she got it all done and even packed the cars herself. God only knows how I am going to be able to do the two boys and keep the house going without her. Thank God Louie is such a great son that he brings them all home every weekend he can. I was actually getting worse than she was at the end I couldn't even talk to him on the phone without crying I really started to miss him. He has been apart of our family for so long now he is my son not my son in law and I missed being able to talk to him about being sick. About being afraid of whats to come the girls get to upset and don't want me to talk about it, but most of all I missed his hugs and how good he is with Jordan my son with Autism. Jor tells everyone that Louie is his best friend he just loves him so much.
Well its my last night here in CT and tomorrow I'm going to have to say goodbye to not just my daughter but one of my best friends. I never had that with my Mom so I'm so proud that I can say I feel like I can talk to Briana and Nicole about anything and that they feel the same way. Tomorrow is going to be so hard, I know it may sound dumb because we see them so often but after having them live with us its like letting them go all over again even worse because Bella is going too. I will miss having Bella wake me up every morning with her running into my room saying Hi Mimi up with the kisses and hugs and the I LOVE YOU TOO. I feel I have somewhat of an understanding of how these husbands must feel saying goodbye. Even though it's not 6 months for me it still breaks my heart saying goodbye and not seeing them everyday.
I'm very proud to say my son in law is a submariner not many men can do what he does, and I'm very proud of my family for being so strong with what they have had to deal with over the last year. I think I pray more for them then I do for me that the news is good in Feb at the Mayo Clinic. Especially since I just passed out and fell down Briana's stairs and twisted my ankle. She said she wasn't going to yell at me so I can't write about it in my blog lol but her red face said it all! At least she gets a 2 week break from me.
Has anyone heard of bubble wrapping your house?? Till next time lets hope for no more broken bones!

Today has become a brighter day

2009-01-02T10:25:00.000-08:00

Well New Year's was sad I had fallen again that day and bruised my kidney and was very depressed.I got into a fight with my daughter Briana because she blamed me for passing out. She lashed out that if I would just sit down I wouldn't keep passing out and hurting myself. She then yelled she didn't feel sorry for me as I'm laying on the floor in agony because I had hurt my ribs again and landed on the legs of my wheelchair on my back and my back was killing me. I started yelling back that things needed to get done and I just can't stand just sitting here all the time looking at all the stuff laying around. The wash that needs to be done, the dusting, my boys still needed fed, needed drinks, Jordan needed his medicine. I know she is helping me all the time and Nicole helps when she isn't working but I'm not the type to just sit here. They just can't seem to understand how hard it is to have a really active mind but a body that doesn't cooperate. I know it's hard on them but how would they like to be in my shoes. It just sucks all around! After I finally got up off the floor I went to bed to take more pain medicine which sometimes I think is starting to become to much a part of my day! My body hurts all over from so much falling that I can't seem to move if I don't take something.
Anyway the girls left to go to the store to get snacks for New Years Eve and my mother in law who for years I couldn't get along with has now become one of my closest friends came over. She had called and heard how down I sounded and came over to cheer me up and while she was here threw in a turkey for us. After talking things out with her I can see Briana's side she has so much going on. Her husband has been deployed for the last 6 months he is finally coming home and she is so anxious to go home to CT to be with him but worried about leaving me here to cope with the the boys while my husband and Nicole work. We have spent every night for the last 6 months together her and Bella my granddaughter it's going to be hard to let them go.
So midnight came we were all here I cried I'm afraid what the New Year is going to bring, she cried her husband is God knows where, Nicole was upset she is still looking for that perfect guy, Keith got a little teary from all the stress he is under. And the boys being younger were all tucked in bed.
Yesterday I spent the whole day in bed and I had a lot of time to reflect and I've come to some conclusions. Yes, there is something wrong with me and we still aren't sure what. I'm not going to find out till I go to the Mayo Clinic on Feb 24Th so until then if the house isn't perfect oh well! I'm going to spend the next week enjoying the time that my granddaughter is still here living with me. Try to keep my ass on the couch and my spirits up. I'm lucky that I have a family that cares enough about me to yell at me to sit down and that I'm not alone with no one yelling at me to take of myself.
So to anyone that reads this I'm taking it one day at a time, one fall at a time and I'm going to start trying to enjoy one day at a time!

My first day 12-30-2008

2008-12-30T18:04:00.000-08:00

At my daughter Briana's suggestion I decided to start this blog to help me deal with my day to day feelings on trying to deal with this disorder. As of right now I have been fainting for over a year no warning signs I just fall over. I've had a pacemaker put in and I'm on many different meds to raise my blood pressure but so far nothing has helped. I'm going to the Mayo Clinic on Feb 24th and I have such mixed feelings. I definitely want to go to find out if they can help me, but I'm afraid to go because I don't want to hear any bad news. I have twin 23 yr old daughters one is married with a little girl and her husband is in the navy and she is going to be moving back to CT in 2 weeks and I'm going to be lost without her. My other daughter works middles so she isn't home much and with her being single I feel guilty asking her to stay home with me. I have a 10 yr old son who is Autistic and doesn't quiet understand what is going on with Mommy. I have a 5 yr old son who I think worries way to much for his age. He is always looking out for me and worrying if I'm ok. Last but not least is my husband Keith who is trying to work 2 jobs pick up the slack of the house and run the 5 yr old to his school sports and try to keep up with the bills.

I'm not a person that likes to sit around I was always on the go before this disorder took over my life and it sucks! I haven't driven in a year, I can't even run down to the 7-11 at the bottom of the street. Some days I feel like a prisoner in my own home. I would love to just be able to go outside for a walk without having someone be right next to me every second. I know there are people out there that are worse off then me but right now Im still trying to come to terms with losing so much of my independence. Right now I have a fractured nose and ribs from two different falls in 3 days ugh!

Here's hoping tomorrow is a better day. And instead of bitching I'm in a better mood. There are some positives lol honestly I'll get into those tomorrow!