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Daily life of a mother of a child that has Craniosynostosis

Public Journal
I am a 33 year old mother of a 9 year old boy who's name is Joshua and he has Clover Leaf Skull a form of Craniosynostosis. I also have 3 girls! Amanda is 19, Rayanna is 11 and Alexis is 10. Sometimes life can get a little crazy! I have one of those houses that all the kids want to be at, so between friends, and nieces and nephews its a whirlwind at any given time! Maybe we should get rid of the big screen and all the game systems huh?
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Monday, July 21, 2008
1:34:35 PM EDT

My favorite shoes and hair color and cell phone (Wanna play along?)

I was bored in the garage and took some random pictures lol. I would love to see your favorite summer shoes and a snap of your hair color and see what cell phone you have if you want to share ;) Look at how frizzy my hair looks (Gotta love MN and the wonderful humidity!)


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This picture is dark but I got my nails done and the actual acrylic has glitter in it. They are not painted at all so I wanted to show you the glitter and had to take it dark :)

 


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1:25:47 PM EDT

Part 2 of pics

Ray's campsite........ And Joshie checking it out ;)

 


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1:17:33 PM EDT

Photo entry

Hi everyone. Last weekend we went to our Pow Wow, I took some pictures but mostly of my girls not the dancers like I did last year. The girls bought my hubby the coolest blanket for his birthday from there. It has bears, and wolves on it and is SO soft and warm.

Friday was my hubbies birthday and he had gotten a terrible toothache 2 days before. We got him on some antibiotic's and he was better by his birthday but then I woke up the morning of his birthday with a TERRIBLE abcessed tooth! I went to my doctors and they gave me some antibiotics and some pain pills for the weekend. My poor hubby had the lamest birthday! I was crawling out of my skin in pain until the pills started working. My left side of my face was so swollen! Thank goodness the infection has gotten better now and the swelling has went down because I have a dentist apptointment in an hour and a half and they will hopefully be able to fix the tooth so that doesn't happen again. I told hubby he started  a trend! First him, then me, then his best friend (my cousin, my sons godfather) called Saturday night at 1AM dying because his tooth had cracked, then my daughter came home from her dad's Sunday and she had a cracked tooth. We DO brush our teeth many times a day and floss and all that good stuff I swear!! lol

Yesterday we spent about 9 hours in the car, we dropped my daughter Rayanna off for her camp at this awesome Christian Camp for the week. She signed up for the Teepee session this year and will share the teepee with 7 other girls and there is also another teepee for 8 boys. They all prepare the meals together as a group, they do eveything from this little campsite that is set up specifically for the Teepees. There is also a treehouse site that they have all their challenges against all week long. So we left the cities to head down to the camp and arrived about 30 minutes early because you stand in line way less if your early. We got all her stuff in the trailer and walked with her and Josh to the teepee site to check it out. She is camping lol! My god it was hot out and the bugs for being the middle afternoon were crazy! Thank goodness we bought her a big can of bug spray!! I hope she is having a blast! I will post the pictures that I took at the end of the entry. We hung out there for about an hour and then at campers welcome time I brought her to her group and counselor and we headed off another almost 2 hours to pick up my daughter Lexi who is spending the week here. On the way home we stopped at Olive Garden and had dinner.

I think that alerts are not working (BIG SURPRISE!! lol) because even on my tag journal only a few people have stopped by.

Speaking of my hubby, after he left that night he actually showed up back home at 3:30 AM and just held me. Life has been so hard lately! Well honestly it is always hard but since that stuff happened at my moms it has been really stressful!

I wanted to tell everyone who commented on my LONGGG entry about my past, thanks for the comments! I know some said it sounded like a horror movie. You know what is strange to me, I have just lived life one day at a time and always swore to myself to do things differently when I became a mother. There is NOTHING I wouldn't do to protect my kids and to give them constant love and stability every day of their lives. To me because it is the only life I have known it was all I knew as life. I cannot say that I have never been envious of what some would call the typical all american family, yet on the same note through all the hurt and abuse my family meaning my mom, and siblings have always been my life. Which is why I was so hurt and felt so betrayed that my mother could hurt my kids and I the way she did. To me there is no excuse, it is unexcusable. I guess all these years later I just kept putting one foot in front of the other and kept going. There have been times I just wanted to crawl into a hole and never come out but it truly has never been an option. Years ago I got past what my dad did to me. I have never forgotten, I just moved on because I had to in order for me to be ok as a grown up. I am more angry at my father for being a coward. I am angry that as an adult when I started dealing with the hurt and abuse he wasn't here for me to confront.

Am I scarred? Sure I am in many ways. But I have decided that I am the one that can break the cycle and I am the one who can make sure my kids never have to deal with what I had to deal with my whole childhood and adult years. I am the the only one with the power to protect them, and love them the way that children deserve to be loved. Even if that means walking away from the only family I have ever known to make sure my kids never have to see how mean and nasty real life can be. Everyone deals with forms of abuse differently and I have never (well maybe not never) let myself be a victim. I cannot change the things that have happened to me but do know that they have made me one of the most loving, caring and compassionate people you could ever meet. I have chose to not let it make me a bitter, uncaring person.

Well I should end this now and post the pictures and get ready to go to the dentist. I hope everyone had a great weekend!

Love & Hugs, Robyn

Pics from the Pow Wow........My superstars lol

 


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That boy liked them lol!
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Ne here is the stand we got Katie's whistles at ;)
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You cannot read it but the girls and I all got these hoodies from a company called "American Indian Beauty Clothing Company, Rez Dog clothing co." they say...... "I am an Indian woman, I am strong, I am soft, I am the Indian experience. My people have suffered hardships beyond what I can imagine, But they survived and persevered. And so will I. Never underestimate the power of an Indian woman!


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Doesn't he look like a future stick up kid?? lmao he was so cute!
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I was trying to get pics of her beads
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My brother ( HE has been SOBER for just over 3 weeks!! Go big brother ;)!!!)
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Sunday, July 13, 2008
4:24:10 AM EDT

Part 2 (Lots of pics!)


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4:06:14 AM EDT

Pics from trip to Duluth (lots!) Part 1


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From our deck of our room......
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The oldest train depot in Minnesota......
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Sideways but he LOVED the carriage ride......
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3:57:27 AM EDT

Random photo's (LOTS)

My nephew came over for a night ;) He is so cute!
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He is walking! :) Got the drunken baby thing going on lol
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Where we are at right now.......
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My daughter's machine she got :)
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The biggest lazy susan ever lol ( the one I won at Community bingo)
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Cards my daughter made.......
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3:47:47 AM EDT
Feeling Disappointed

Hope you have some time! (AC entry, swearing)

Hi everyone I am going to just start writing and see where I end up. I hope I am not all over the place with this entry. I am for-warning you, it is going to be a long one!

Let's start with the fun stuff. Hubby and I took the kids to Duluth for three days and had a great time! We had a hotel booked in the Wisconsin Dells, but my truck decided to die and the part is on back order all over until the 28!!!th of the month. Not to mention the $800.00 price tag to fix it. So now I have a brand new Charger for a rental which is a blast to drive but costing me money also. So I decided it would be smarter to go somewhere much cheaper. My hubby was up north at his brothers house for the week before hand. The kids and I left late at night on Monday and headed up to surprise him. We called about 30 minutes away and he said "Hi hun watcha doing?" I said "Driving" of course he was wondering where we were driving at 2AM lol. I told him we were 30 minutes from town and to meet me at the motel I called and reserved before we left the cities. It was a great surprise for him, and the kids and I were happy to see him!

Since this situation with my mom happened him and I have sort of been struggling. We are both feeling so many different emotions and I truly feel like I am grieving the loss of my mother because I cannot ever put myself back into that situation! I am not going to explain where all of that is at until after I talk about everything else ;)

So back to Duluth, I took LOTS of pictures and will be adding them in a few entries after this one. We stayed at a beautiful lodge right on Lake Superior in a one bedroom suite. The weather was PERFECT for being right there on the water. We took 2 carriage rides and Josh LOVED it. He thought is was so cool that a horse was pulling us. We ate some great food. We actually parked at our hotel and walked pretty much everywhere for the 3 days we were there. We would leave the hotel around noon and stay outdoors until around 9. One of my favorite things to do there is go down into Canal Park (which is just down the path from where we were staying) and watch the lift bridge go up and the huge ships pass through the canal. I took some pictures of that also to share with ya'll.

This year my daughter Rayanna decided to spend her grade money on a Criqet (not sure that is the correct spelling) machine. It is a machine that can be used for scrapbooking or card making. It is really cool! I was SO proud of her when she decided that was what she wanted to spend the most money on. She price searched the machine all over to see where she could get it cheapest. Well then she decided to start looking on Craigslist and guess what she did? She found a lady who was selling hers and it had only been used once ever, plus it came with A TON of extra stuff and different key pads. She then went to two different web sites and wrote down exactly what the actual price of all of the stuff was that was included in this fee. She realized that buying for $350.00 from this lady was a awesome deal! She showed me all she found for pricing of each individual item that this lady was including in the price and realized she got $950.00 worth of stuff for $350.00....WOW what a deal and how cool of her at 11 to realize that and actually take the time to save extra money when in reality with her grade money she could have payed the full price. Instead she chose to shop around and do her research and really lucked out and got something from someone on Craigslist who was SOOOO happy that she was selling all of this to someone as cool as Ray who would definately get great use out of it. It all worked out so well and so easy and the machine is awesome! Ray has started learning to make greeting cards and she even set up a website that she can sell them at. Go check it out ;) It is still very new but she is so excited about it!. I am so proud of her.

http://rayscards.weebly.com/index.html

On to the not so light side of life for me right now.....................
I do not know 100% for sure that what my mother did to my son has not had very and I mean very hard effects on my family! I can say though that I have had the worst days ever with him in life since we have left my moms after what she did and came to the Corporate unit we are in now. I had a situation with him at Walgreens about 5 days ago that had me sitting at my desk crying for an hour and a half straight after he went to bed! He has became SO aggressive and even though he only weighs 50 pounds and is 9 years old, he is strong! Really strong! And because he doesn't talk when he wants something now, or doesn't like something he has found these aggressive ways to show us that he is not happy about something. I blame my mother and her actions for this, is that wrong of me? Since I do not know 100% without a doubt? I don't know maybe it is, maybe it isn't. I would say considering it took us NINE damn years to get to a point in all of our lives (Josh included) that seemed to work for all of us by being consistent and I mean the same things day in and day out, then my mom to do what she did for 45 minutes and it ALL to seemed to have changed so quickly to what it is becoming. I have a real hard time not blaming her for it and being so goddamn mad at her it makes my heart hurt, my head hurt! WHAT KIND OF MOTHER WOULD DO THAT TO HER GRANDSON AND HER GRANDDAUGHTER AND HER DAUGHTER???

THENNNNN I find out from my sister and brother that she is still drinking!!!???!!! If that isn't rock bottom what the hell is? My opinion bluntly..... dying. Her and I have shared a family cell phone plan for a long time now. Since we have been in Corporate housing my cell phone has became my main phone. The phone that any businesses would know, any of my sons doctors, my daughters doctors, my tax attorney, schools, family, ect. Well a few nights ago while in Duluth and using my cell as our means of communication my mom got drunk and decided to call and have my cell phone and my daughters cell phones turned off. She paid the 400.00 for the early termination and gave me no notice at all. I was pissed, man was I pissed. How childish and what went through my head is WTF did we (my daughter being my first thought) do to her for her to act so shitty to us? Where in her sick mind does she feel she is justified to be such a bitch to my daughter and I? I am very sorry for the name calling it truly is not who I am to talk about people that way (especially my own mother). BUT she has impacted and changed my life (for what seems for the worst) in so many ways all because of her drunken, blacked out actions that I have a very hard time thinking of her as any less than that! I love her still but I cannot forgive her for what she did.

 Then the day after I get home because my sister called and asked her why the hell she did that, my mom sends me an IM on AOL saying this.....
I turned your's and Rayanna's phones back on. Ifyou turn them off and on they will work again.

To which I replied....
I just got Ray and I a new phone today

She said.......
I don't want to make your life any harder Robyn (WTF? WHAT DO YOU MEAN? (is going through my head) make my life ANY harder..... She is clueless when it comes to how her actions have impacted my kid's life, my life and my hubby.)

I said......
I do not want those phones back. I do not want to talk to you

She says........
Ok well let me know if you change your mind, I love you

And signs off

Then proceeded to get drunk and call my sister and yell at her for some personal stuff between them. See my mom handles ALL things in life that could "rock the boat" only when she is drinking and 9 times out of 10 they are completely inappropriate ways.

My mother is the best mom ever when she is sober. There is NOTHING she wouldn't do for any of her kids sober. But when she drinks she turns into this mean, bitter, unpredictable person. The part that I am battling with is our life story. How we have all already endured so many forms of abuse from each man she ever chose to be a part of her life, to her being the same way one night. There is so much about my life that you all do not know as far as my story starting all the way back to conception. My mother was raped when she concieved me by my father who she was married to. My dad went off to fight in Vietnam and came back a changed man, a nasty abusive heroin addict. He used to beat my mom up all the time and rape her aside from sexually abusing me and my brother. When my brother was a baby he was sick and teething and my dad threw him across the room to get him to be quiet, then proceeded to beat my mom so badly she was out cold and carried her outside in the yard and tossed her into the snow knocked out.

My mom finally after years of abuse decided to leave my dad and move to the cities with my brother and I. My mom had never drank anything. My dad followed and got his own apartment in the same city and got visitation rights every weekend for my brother and Ito go to his place. So here is how our life went until the day he committed suicide.... During the week while my mom had us he would break into our apartment and rape my mom and beat her. Then on the weekends we would go there and he would hurt me in ways I cannot and will not describe here in this journal. I have effects as a grown woman from times he hurt me. One being I am not able to carry a child full term because my insides are not normal, I still have scars on my body 26 years later. I was always told (pretty sure my brother also) that if we told anyone he would kill our mom. Well being 4,5,6, and 7 and seeing my mom after my dad hurt her, I believed him and kept my mouth shut. We lived this terrible secret and didn't ever talk to my mom about her hurt, nor did she ever address our hurt and bruises or cuts.

She told me last month one night while drunk "I remember that you used to call me every single time you were at yours dads crying so hard to come home, I don't know why I remember that but I do" WTF?? again here is going through my head, when this happened to my kids from my mother I can guarantee you that a day will never pass that I don't remember it and every little detail, because my children got hurt and I hurt when my children hurt. I was thinking, YOU knew just as well as I did and my brother what was going on to all of us while my dad was alive and you 26 years later can say "I don't know why I remember that?". But then again she has drank to numb herself for almost the last 3 decades so maybe that doesn't surprise me coming out of her mouth.

One time after my dad beat my mom up he gave her a bottle of Vodka and told her to drink it straight out of the bottle "It will make all the pain go away" he told her. She drank the whole bottle and guess what? I do not think she has stopped since then. So then I am thinking...... Thanks dad! He was an abusive man who hurt so many people and almost 3 decades later I am STILL paying the price for his actions also.

So then I stop and think in my own head. How the hell could I have been brought into this world under such hateful, hurtful actions then spend my whole life paying the price for a drug addict father who abused woman and children who hurt my mom so badly that she has never recovered? I do know she was the only one with the power to make a change but for whatever reason she has chose to never do that. Maybe because her own memories are so dark, deep and scary? I do not have that answer.

While my dad was breaking in to our apartment my mom after 4 years got a restraining order and decided to take my dad to court to take away his visitation rights from us and guess what my dad decided to do that same day? He sure didn't show up in court in Minneapolis, instead he drove 3 and half hours up North to his parents house and shot himself for my grandmother to find him. You guys I am so sorry most of this is so blunt and not sugar coated at all, but this is how I feel about all of it right now. I am BITTER, I am ANGRY!

I remember being upstairs at a friends apartment with my brother when our carataker (who's husband also molested me in the basement laundry room) knocked at the door and told us we needed to back to our apartment. We got down there and we were told "your dad died today" the first and ONLY thought I remember thinking about it while I was young was "Thank god it's finally over!". I remember sitting at his funeral getting strange looks for not shedding a tear. I later found out that my dad had also abused all of his sisters, and his own mom. The other sad part was my got to a point she KNEW when my dad was going to show up in the window and she would send us next door to the caratakers to sleep not knowing what he was doing to me also. It was truly a no win situation for me being so young.

It then seemed that each man my mom ended up with was terrible some way or another. My sisters father also a child molester and guess where my mom met him?? She called Kindship brothers and sisters and he was referred by the agency for a good role model for my brother to be around. So they started hanging out and not long into it he "acted" like he was in love with my mom. He molested my brother. My mom married him anyways. My sister was born and this man was so anal about things, and so strange that he set off crazy alerts in my head and heart. He had timers on everything in the house, the TV, phone, kitchen stuff, ect. With the flip of a switch from a circuit board looking thing he kept locked always he ran everything in that house. It didn't take me long to realize there was something wrong with him. He would cook say spaghetti and he would literally count out 99 noodles for three of us. Then proceed to give us each 33 on the dot. He would want these family meetings where he would literally come upstairs with a huge tablet with pages upon pages of of everything we all did wrong each week. He must have watched us all like a hawk, honestly I often wondered if there were cameras hidden all over our house at that time.

Well it got to a point because I started challenging him I was told by my mom "Either you need to go or he is going". So I was 15 years old and I moved out into my own apartment and never looked back. My sister was very young then and she started sometimes coming over and spending the night with me and I knew almost instantly that she was being molested. Her dad had cut her hair short to make her look like a boy. She said things during bathtimes that were NOT normal for her to know. One day I called and asked my mom "Can you please come here alone to pick Kate up I really need to talk to you privately" She came with him anyways. So I told her while he listened what was going on. got called all kinds of names from her dad and I ended up calling Child Protection on them. After months of monitoring them and talking with my sister they told me that my sisters answers were robotic, and my mom seemed coached, but there was nothing they could do about it.!!

Well at that point he pretty much took my mom and sister away from my brother and I. At some point in between my brother ended up living with me and leaving also. We didn't talk to her for almost a year when I walked in the door from work and my grandma told me my grandpa had died. I was devastated! I delivered my son a month later and he died in my arms also. My son was buried in my grandpa's arms. My grandma did not know how to get a hold of my mom so I had to drive to where I thought she worked and go in and tell her he had died. She was shocked! During the funeral my moms husband drove her to the funeral with a gun and bat in his car telling her he was going to kill me. He was stopped at the front of the church and not allowed near me!

After the funeral we parted ways again. About a week before my son was born my brother and I came home from work and my mom was sitting (without my sister) on our doorstep and said to us " I know you two should have no reason to helpme out but I need somewhere to stay" We of course let her stay. She had found a very threatening letter that my sister's dad had wrote to her and was planning on giving her. He had my mom and sister so brainwashed it was heartbreaking to see! She left my sister with him and was planning to go back and get her when she had a place to go is what she said. She tried to go back and her dad had kidnapped her and disappeared. A few months later my mom got a call from the city police where they resided that they had found them and my sister was on her way back to Minnesota. We got her and she was changed. She looked completely like a boy, one time not long after we got her back she was sitting at my kitchen table eating and drinking a glass of milk and she accidently spilled the glass of milk and she went into full blown hysterics anticipating being "Punished" for spilling. A week later her dad tried to rig my moms car so when she started it, it would blow up. She had an angel on her shoulder that day and the car would not start. They went to live in a Women's shelter after that.

The same year a lot of people who had also been molested by my sisters father all over the US came out of the woodwork. My mom decided to take his parental rights away and these people flew to Minnesota to testify against him. He did lose his parental rights, but the asshole showed up all by himself, smug knowing with statue of limitations he could not be charged. That was the day a judge granted all of us a lifetime restraining order on him.

So with just that little bit of my life history maybe that explains what I meant by how could she turn into that same monster, shadows of the monsters she allowed to hurt her and all of her children our whole life. When do you become so addicted to something and so numb to it all that you stop trying to protect your own? Truthfully she never fought for her own like children need to be protected, but when and how can you look the other way and try to act like it is all ok?? I cannot imagine a day in my life of  loving my kids ever turning a blind eye to any type of hurt they get caused, let alone not doing EVERYTHING in my power to make sure it NEVER happens again!

I am going to end this for tonight there is so much more I could say but this is so long!

Hugs and again thanks for the support you have all shown me over the last month! It means the world to me!
Robyn

 



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Saturday, June 21, 2008
11:27:10 PM EDT

Love this song!

Any of you who watched the American Idol finals heard this. I have never really liked George Michael but this song moves me. It is so true and real. If you have a few minutes listen to it.......

I cannot get it to link here but will add a link to you tube.....

http://youtube.com/watch?v=xZXE8Fohj8M



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10:25:26 PM EDT
Feeling Thoughtful
Hearing Josh's weebles crashing into each other

Lots to say, just not ready

Photobucket

Hi everyone. I was amazed at all the comments left by everyone when I wrote my last entry. First I would like to thank all of you for the love and support, and prayers! My faith is shook right now, and I truly have alot to say but am not ready.

I am trying to make sense of it all in my own head. GOOD news though, they did the test and biopsy this last week and I guess I developed a pretty bad case of Reflux as an adult. I am having a hard time getting my own bodily fluids (Like mucus) to go down the right way or come up. On Wednesday I will be put on some sort of medicine to help me. My son had Reflux as a baby and he was giving himself Pneumonia for the same reason. So they did the biopsy and will call if there is anything that needs to be called for, but he didn't see any tumors or masses so that was a HUGE relief. Because I was scared. That was my wake up call to do what I need to do to finally quit smoking once and for all. I am only 33 years old and want to be around for as long as possible!

I just really wanted to tell everyone thank you and let you know when I am ready be prepared for a small book. I decided that after leaving that post up for a couple days it was something I didn't want to leave up forever like the rest of my entries. I am sorry if a couple of you missed it! I will probably do the same thing when I write again.

I hope you are all having a good weekend.

Love you and hugs, Robyn



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10:13:35 PM EDT

Slideshow of beach & fair



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