Thursday, July 28, 2011
Monday, July 25, 2011
In case you've been living under a rock...
so, where was I? oh yes...when I went to check out the new shop making process, it became apparent that they had revamped the joint and no longer created the very basic, quasi ugly , harder to use shops that I had used to make TEAM BRITTANY's. Rather than be left in the dust , I quickly ( which for me, translates to my usual turtle speed getting a small, short lasting turbo boost ) decided to replace the old shop with this new shop. The shop is not done, nor is the webpage I'm creating at Team Brittany's home online - but I am unleashing this link on you now so that I can delete the old, quasi ugly store. There are many more, very cool items in the new shop....iPhone covers, iPod covers, Flip Video Cameras, Thermos products, Stainless Steel water bottles, Notecards, posters...and Much much more! All of these lovely items are emblazoned with the TEAM BRITTANY logo, and not only would financially help our struggle, but are amazing ways to help us bring awareness to Alexander Disease. I get a funny, warm, squishy feeling in my tummy...heart...gallbladder ( I'm not a doctor, ok!?) when I think about how many times someone could be asked "Hey cool Flip! Uhh....What's TEAM BRITTANY?", forcing someone to tell Brit's story and explain that Alexander Disease is a super rare, incurable, progressive,fatal brain disease. One person MAY be inclined to either go home and google TEAM BRITTANY ( which may or may not garner results lol ) or, more importantly they may google, bing, whatever - Alexander Disease. This is important to me. It's important to Brittany. When a disease has only had about 400 to 500 sufferers - and please, PLEASE be assured that when I says "sufferers", I am in no way, shape, or form being dramatic - then getting the word out on what is killing my kid, really makes me happy. And sad. I'll take that sad - it's productive.
In short.....check out the store, buy something, send someone the link or post it on your social network. Just help me inspire someone to ask and learn about Brit or Alexander Disease.
I didn't really expect this post to take this sappy turn, and now I'm crying. Hope you are happy, now! ;)
(The fundraiser- you know, the one I cried at ALL morning last Saturday- yeah, that one- the blog is coming soon, hopefully today...stay tuned =)
Friday, July 22, 2011
I havent forgotten...
....that I owe you all a post on the fundraiser breakfast. It was a super emotional weekend, and beyond the fact that my 17 year old and I are sharing a laptop cord ( that she's had for a few days), I have needed a break before blogging on the events of last weekend. I will do it, I promise. I can also ALMOST promise it will be this weekend that I do it. =)
Sunday, July 17, 2011
Owen's Closet
In case anyone who knows me has begun to question my lack of cynicism and angry ranting ( ok I still rant - but I've cut back significantly! ) over the past few months, I want to acknowledge and confirm this change of heart I've had. It's true, you haven't been imagining things. I have actually had enough "Peace" in my heart - or as I like to call it, Perspective, to truly appreciate what I have.
Let's dissect this a bit and see if we can't come to some sort of understanding about my recently acquired ability to control my tongue. Well, let's "forget" about that little "Kick the mom in the taco" comment I had last night on Facebook. Watching my daughter broken hearted over one of her best friends being mistreated at home pretty much gives me a pass.
(Incidentally, just so the "Incubator" is aware, I wouldn't hesitate to report the kind of behavior you exhibit and allow to happen to your child at home - if she weren't already 18.Consider yourself lucky....as long as you keep your taco far, far, FAR away from my kickers.)
(Incidentally, just so the "Incubator" is aware, I wouldn't hesitate to report the kind of behavior you exhibit and allow to happen to your child at home - if she weren't already 18.Consider yourself lucky....as long as you keep your taco far, far, FAR away from my kickers.)
Anyway,some things have happened here recently that have basically changed my DNA. I mean that's the only thing I can come up with as a physical explanation to my attitude adjustment. Anyone that knows me, knows that I was to some extreme, rotten to the core until recently. It would TAKE a dna change the way I interact with others. Right?
Maybe. Maybe not. In reality, what happened is far less genetically magical - but pretty miraculous nonetheless. In reality, Im making light of something that very deeply effected me.The link below tells only part of the story. There was actually a lot more to the story, but this is what I felt comfortable sharing on the website. The result of what I experienced has inspired me to be a kinder gentler person. Oh, I was always a softie ( There Herbert, I put it out there so you didn't have to! ). Tragic, sad or upsetting stories involving kids, old people and furry creatures have always made me cry. But if you've known me in the past few years I don't have to tell you I have been...and to a certain degree, still am....a bit of a raging bitch. ( There, put THAT out there, too Herb! )
Maybe. Maybe not. In reality, what happened is far less genetically magical - but pretty miraculous nonetheless. In reality, Im making light of something that very deeply effected me.The link below tells only part of the story. There was actually a lot more to the story, but this is what I felt comfortable sharing on the website. The result of what I experienced has inspired me to be a kinder gentler person. Oh, I was always a softie ( There Herbert, I put it out there so you didn't have to! ). Tragic, sad or upsetting stories involving kids, old people and furry creatures have always made me cry. But if you've known me in the past few years I don't have to tell you I have been...and to a certain degree, still am....a bit of a raging bitch. ( There, put THAT out there, too Herb! )
Funny story - I have a feeling, although I never asked him, that part of what attracted Zachary to me in the very begining MAY have been that I was a mean nasty bitch. I've noticed some men are like that for some reason. Either way - it worked in my favor. When I was largely pregnant with Reagan we took all of the kids, plus a neighbor's child and Zac's younger brother to York's Wild Animal Kingdom. While there, I went on the ferris wheel with Zac. Not sure if you are aware of this, but I have a teeeeeeeensy tiny fear of heights. A fear, that has apparently doubled every year since birth because while on the ferris wheel I gripped Zac's arm and involuntarily squeezed the bejesus out of him. I also had a mini panic attack, got dizzy, sick and could not control the level of fear I was feeling. Especially when he chuckled and rocked the car while stuck at the tippy top.Mind you, I had the upper hand in the relationship entirely right up until this incredibly terrifying, stupid moment. As the attendant was unhooking our safety bar and we were ready to dismount, Zachary leaned over and I was sort of expecting a kiss on the cheek. Instead he pressed his lips to my ear and whispered "You know, I'm not afraid of you anymore".
Anytime I get mouthy and far too cocky to this day, he threatens to lash me to a ferris wheel.
Funny story indeed.
So - while Zac has a great deal to do with my domestication - disregarding that last anecdote, of course - because I've been incredibly happy, content and at peace with my relationship. ( Yes, I know it IS disgusting that I only have two problems in my life : lack of wealth and my daughter is not healthy ) Being truly, incredibly, genuinely happy has done MUCH for my attitude. I've felt fewer and fewer reasons to hide behind an angry mean exterior in order to protect myself. I've almost forgotten how to be venomous. I think all of this has happened on it's own timeline. I wasn't ready for any of this "good stuff" before it was plopped into my lap. I really wasn't. Too many hang ups, too much pride, too little self worth. I had things to work through and experience for being ready for the real thing. Anyway, as I have a tendency to do, I've veered off topic a bit. My change of attitude comes from being with my soul mate and finding some Peace. But it also comes from some other things I've experienced in the past few years - and most monumentally in the past two. Becoming a new mom again has done much for healing my soul. My GOD I love that girl. Apple of my freakin' eye.
Anytime I get mouthy and far too cocky to this day, he threatens to lash me to a ferris wheel.
Funny story indeed.
So - while Zac has a great deal to do with my domestication - disregarding that last anecdote, of course - because I've been incredibly happy, content and at peace with my relationship. ( Yes, I know it IS disgusting that I only have two problems in my life : lack of wealth and my daughter is not healthy ) Being truly, incredibly, genuinely happy has done MUCH for my attitude. I've felt fewer and fewer reasons to hide behind an angry mean exterior in order to protect myself. I've almost forgotten how to be venomous. I think all of this has happened on it's own timeline. I wasn't ready for any of this "good stuff" before it was plopped into my lap. I really wasn't. Too many hang ups, too much pride, too little self worth. I had things to work through and experience for being ready for the real thing. Anyway, as I have a tendency to do, I've veered off topic a bit. My change of attitude comes from being with my soul mate and finding some Peace. But it also comes from some other things I've experienced in the past few years - and most monumentally in the past two. Becoming a new mom again has done much for healing my soul. My GOD I love that girl. Apple of my freakin' eye.
The second thing the back story to what is contained in the page linked below. Like I said, there is a lot more story involved - but this is what I'm sharing...for now. Go look.
Owen's Closet
(and please feel free to pimp it out, we can use all the help we can get with this to help the maximum amount of people!)
Thursday, July 14, 2011
Fundraiser and stuff
Two days until the first ever fundraiser for Team Brittany. I am terrified that no one will show up, and more than the financial burden we are trying to ease, I worry about what a lack of show of support will do to Brit's heart. Or mine, I guess. I have been uplifted and incredibly cheered by the show of support everyone we know - and a whole bunch of people we DON'T know has been showing. Donated items, ladies baking goodies, people taking time from their own families to assist mine....it's been a real boost to my sense of community.
I am trying to find as many opportunities to pay it forward to people that could use it. It feels good to know that no matter how small a gesture, I can do SOMETHING to ease someone's burden, even if only for a day. I wish I could do more.
I've gotten extremely lucky that things work out as they do. The date of the event being this Sat means that through some unrelated events that have occurred, I get the distinct pleasure of my BFF since 1st grade ( that's 32 years, people.....which upon reflection, is longer than my other half has even been alive. Weird.) being able to attend. Her visit from AZ, where she moved 3 years ago has been extended and now get the shoulder to lean on for Sat =) I literally cannot tell you what this means to me - and Brit - and will now stop thinking about it before my emo, blubbery ass short circuits my keyboard =) I love you Dee! If my other BFF could be here from TX, things would be complete ! ( It's ok Herb, I understand its a long trip for pancakes!! You will be there in spirit !).
Alright - we hope to see you Sat. Back to the salt mines...I have a house that isn't cleaning itself =)
I am trying to find as many opportunities to pay it forward to people that could use it. It feels good to know that no matter how small a gesture, I can do SOMETHING to ease someone's burden, even if only for a day. I wish I could do more.
I've gotten extremely lucky that things work out as they do. The date of the event being this Sat means that through some unrelated events that have occurred, I get the distinct pleasure of my BFF since 1st grade ( that's 32 years, people.....which upon reflection, is longer than my other half has even been alive. Weird.) being able to attend. Her visit from AZ, where she moved 3 years ago has been extended and now get the shoulder to lean on for Sat =) I literally cannot tell you what this means to me - and Brit - and will now stop thinking about it before my emo, blubbery ass short circuits my keyboard =) I love you Dee! If my other BFF could be here from TX, things would be complete ! ( It's ok Herb, I understand its a long trip for pancakes!! You will be there in spirit !).
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| Birthday shots - cheers! |
Alright - we hope to see you Sat. Back to the salt mines...I have a house that isn't cleaning itself =)
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| New Years Eve, perfect night for a whipped cream fight |
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| Apparently, I lost. |
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| That's okay though...cause I can feel better by posting this bad boy. |
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| My best friend in the world =) |
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| Back in the day...when we were still young |
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| 2004 |
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| 2004 |
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| The good thing about birthdays within a week of each other? Parties =) |
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| 1990 |
Wednesday, July 13, 2011
An email from Hunter's Hope...
...has inspired me to share this video with you all.
Parents help each other in hospital letter writing project
I will write more later, but wanted to share this project with you =)
Please also check out Hunter's Hope as well and see what they are organizing there. I haven't had a chance to look, but will as well!
Parents help each other in hospital letter writing project
I will write more later, but wanted to share this project with you =)
Please also check out Hunter's Hope as well and see what they are organizing there. I haven't had a chance to look, but will as well!
Sunday, July 10, 2011
I've been quiet for a few days...
Most people would consider that a blessing =)
I am posting today only to let everyone ( all 6 of you!) know that I have a few things in the works to be announced or shared in the upcoming days and weeks. I don't really want to speak TOO much on any of it right now, because I'm just not ready. That being said, I do want to keep y'all updated and prepared to act =) After the upcoming event, I have a couple of things to unveil and hope you all like.
First off, the fundraiser for Brittany and AxD Awareness is just around the corner. Next Saturday, July 16 as a matter of fact. I am terrified no one is going to show up, or just a handful of people at best. We would be most grateful for any number of people, honestly. I just want to implore you to please make the effort to come. It's a fundraiser, yes - and let me assure you we NEED a fundraiser. We do not have an outrageously expensive lifestyle, we live very modestly. Zac works two jobs a day until he is literally ready to drop. I stay home with the kids and try to conjur ways to help the family beyond providing the jobs I do AT home. We pay our rent and are trying to catch up on our utilities. We have a fairly new vehicle (2006) that Zac had before he even met me, and have no car payment.My minivan bit the dust a few months prior to becomgin attached at the hip to Zachary. We can't afford car insurance right now, so we simply don't HAVE any. Our six oldest kids are from my previous marriage and their father chooses to not support them financially or any other way. Zac does it. All of it. Without being asked He sacrifices, scrimps and does what he can to be sure to provide for HIS family. ( So yes people, a 22 year old "boy" can be a much better, more loving, more responsible and more dedicated father than a 40 year old one. I know, I got him.It took some doing on his part to convince me this is who he was, and he has consistently been that MAN for the past three years) . My kids haven't played sports or done extra curricular activities in the last 6 years because I cant make the conscious, guilt free decision to pay for sports and equipment when we are trying so hard to get caught up. I decide if they can attend birthday parties for friends solely by whether I can afford a ten dollar gift for the birthday child. We make decisions daily like " Do I put gas in the truck for work, or do I go buy diapers?". When I see people bitch about being broke, they generally mean they have X amount of dollars still, and don't go below that. Or maybe it means they can't go buy the new iPhone or go on vacation. When I say I'm broke I am panicking that we don't run out or toilet paper, or milk, or formula. My heart sinks when the kids come home waving field trip permission slips in my face.
I don't bare all of this with any regret for our situation. I am not telling you this because I want you to support my family. I am not saying any of this in a way that implies you need to feel sorry for us, or with any expectations of continued financial support. I tell you this because it is true, and I wouldn't for one second, consider trading this lifestyle with one I used to have. The price on that lifestyle was far too high.There is not one person in this family that doesnt have the greatest fear of not being together as a family. All of us.You can't BUY the love we get and give in this house.
While I don't like that my kids hear the word " no" far more frequently than they hear "yes", I love that my children are the amazing, caring, kind, loving and well grounded individuals they are. While I wish we could afford to go on vacation together and just BE together, I am perfectly okay teaching my kids to appreciate the smaller, more intimate time together. I'd like to be able to give them all every little thing they want, knowing that being able to do so wouldn't make them better people- just more materially wealthy. I can live with what we have. My kids take with them memories not of how we spent XXXX dollars to hit Disney World, but memories of how we would, and have many times, given them our last available dollar for them to be able to go to the dance or because they needed new shoes. I honestly dont think in the long run they would gain more from the trip than they do in knowing what they mean to us.
So...We have simple needs and we are struggling daily to meet those needs, and begining to succeed. Beyond those immediate needs we have needs in relation to legal and medical matters. Brittany, Isabella and Aiden require that I assume guardianship of them...well about 7 months ago, to be honest. The one thing holding that up is not having the money available to file the petition and the background checks and notary fees that go along with it. I have no will, Brittany has no will or directives. Brittany would benefit from being able to travel to a more experienced and caring doctor to coordinate her care, at least one time. Something that her neurologist is NOT doing. Apparently just because you are the big name in this type of disease in this area, doesn't mean you give consistent, quality care. Or even so much as SEE your patient in the last year. I'll leave that all for another blog, another day.
Another issue we cannot seem to find a way through is that while we do have a decent vehicle with no car payment, it is a Toyota Tundra. Mine is a family of 13 people. We quite literally cannot coordinate a trip, whether it be to a doctor or away for the day for down time or to see family, all together. I don't think I can relate to you how disheartening that is to a family that pretty much only HAS each other. I need to know that should we find better care - or if things turn for the worse with Brits health, we can travel. We need to replace the truck with a van of some sort.
Beyond the financial aspect of this event, I am fearful that should we have a poor turnout Brittany will be devestated. She has been extremely excited and happy at the show of support the community and friends and family have been showing, and promising more of. It puts a smile on her face every single time someone offers to donate an item, promises to attend, leaves a supportive comment or helps promote the fundrasier in any way.When someone shows they care, I can see the love and support she feels, right there on her face.
I am flat out begging you to please not let my kid down.
So, yes...the breakfast is a fundraiser, and while I am uncomfortable doing so, I am imploring you to come. We need some help. I can't be anymore plain or frank about that issue.I have laid my cards all on the line, and I am just simply asking you to please help. The breakfast is 5 dollars. The raffles and bake sale wont impact any one person too deeply, price-wise.
I am respectfully and humbly asking that if this means this week you skip Starbucks for a couple days, or go the long way to work to avoid tolls, pack your lunch for work rather than order out or drive thru, skip renting movies and spend the night playing board games or sitting under the stars with your kids...please do...and please attend or donate to our FundRazr social fundraising site in your absence.
Heres hoping you all get the jist of my thoughts...Im exhausted and nodded off at the end =)
I am posting today only to let everyone ( all 6 of you!) know that I have a few things in the works to be announced or shared in the upcoming days and weeks. I don't really want to speak TOO much on any of it right now, because I'm just not ready. That being said, I do want to keep y'all updated and prepared to act =) After the upcoming event, I have a couple of things to unveil and hope you all like.
First off, the fundraiser for Brittany and AxD Awareness is just around the corner. Next Saturday, July 16 as a matter of fact. I am terrified no one is going to show up, or just a handful of people at best. We would be most grateful for any number of people, honestly. I just want to implore you to please make the effort to come. It's a fundraiser, yes - and let me assure you we NEED a fundraiser. We do not have an outrageously expensive lifestyle, we live very modestly. Zac works two jobs a day until he is literally ready to drop. I stay home with the kids and try to conjur ways to help the family beyond providing the jobs I do AT home. We pay our rent and are trying to catch up on our utilities. We have a fairly new vehicle (2006) that Zac had before he even met me, and have no car payment.My minivan bit the dust a few months prior to becomgin attached at the hip to Zachary. We can't afford car insurance right now, so we simply don't HAVE any. Our six oldest kids are from my previous marriage and their father chooses to not support them financially or any other way. Zac does it. All of it. Without being asked He sacrifices, scrimps and does what he can to be sure to provide for HIS family. ( So yes people, a 22 year old "boy" can be a much better, more loving, more responsible and more dedicated father than a 40 year old one. I know, I got him.It took some doing on his part to convince me this is who he was, and he has consistently been that MAN for the past three years) . My kids haven't played sports or done extra curricular activities in the last 6 years because I cant make the conscious, guilt free decision to pay for sports and equipment when we are trying so hard to get caught up. I decide if they can attend birthday parties for friends solely by whether I can afford a ten dollar gift for the birthday child. We make decisions daily like " Do I put gas in the truck for work, or do I go buy diapers?". When I see people bitch about being broke, they generally mean they have X amount of dollars still, and don't go below that. Or maybe it means they can't go buy the new iPhone or go on vacation. When I say I'm broke I am panicking that we don't run out or toilet paper, or milk, or formula. My heart sinks when the kids come home waving field trip permission slips in my face.
I don't bare all of this with any regret for our situation. I am not telling you this because I want you to support my family. I am not saying any of this in a way that implies you need to feel sorry for us, or with any expectations of continued financial support. I tell you this because it is true, and I wouldn't for one second, consider trading this lifestyle with one I used to have. The price on that lifestyle was far too high.There is not one person in this family that doesnt have the greatest fear of not being together as a family. All of us.You can't BUY the love we get and give in this house.
While I don't like that my kids hear the word " no" far more frequently than they hear "yes", I love that my children are the amazing, caring, kind, loving and well grounded individuals they are. While I wish we could afford to go on vacation together and just BE together, I am perfectly okay teaching my kids to appreciate the smaller, more intimate time together. I'd like to be able to give them all every little thing they want, knowing that being able to do so wouldn't make them better people- just more materially wealthy. I can live with what we have. My kids take with them memories not of how we spent XXXX dollars to hit Disney World, but memories of how we would, and have many times, given them our last available dollar for them to be able to go to the dance or because they needed new shoes. I honestly dont think in the long run they would gain more from the trip than they do in knowing what they mean to us.
So...We have simple needs and we are struggling daily to meet those needs, and begining to succeed. Beyond those immediate needs we have needs in relation to legal and medical matters. Brittany, Isabella and Aiden require that I assume guardianship of them...well about 7 months ago, to be honest. The one thing holding that up is not having the money available to file the petition and the background checks and notary fees that go along with it. I have no will, Brittany has no will or directives. Brittany would benefit from being able to travel to a more experienced and caring doctor to coordinate her care, at least one time. Something that her neurologist is NOT doing. Apparently just because you are the big name in this type of disease in this area, doesn't mean you give consistent, quality care. Or even so much as SEE your patient in the last year. I'll leave that all for another blog, another day.
Another issue we cannot seem to find a way through is that while we do have a decent vehicle with no car payment, it is a Toyota Tundra. Mine is a family of 13 people. We quite literally cannot coordinate a trip, whether it be to a doctor or away for the day for down time or to see family, all together. I don't think I can relate to you how disheartening that is to a family that pretty much only HAS each other. I need to know that should we find better care - or if things turn for the worse with Brits health, we can travel. We need to replace the truck with a van of some sort.
Beyond the financial aspect of this event, I am fearful that should we have a poor turnout Brittany will be devestated. She has been extremely excited and happy at the show of support the community and friends and family have been showing, and promising more of. It puts a smile on her face every single time someone offers to donate an item, promises to attend, leaves a supportive comment or helps promote the fundrasier in any way.When someone shows they care, I can see the love and support she feels, right there on her face.
I am flat out begging you to please not let my kid down.
So, yes...the breakfast is a fundraiser, and while I am uncomfortable doing so, I am imploring you to come. We need some help. I can't be anymore plain or frank about that issue.I have laid my cards all on the line, and I am just simply asking you to please help. The breakfast is 5 dollars. The raffles and bake sale wont impact any one person too deeply, price-wise.
I am respectfully and humbly asking that if this means this week you skip Starbucks for a couple days, or go the long way to work to avoid tolls, pack your lunch for work rather than order out or drive thru, skip renting movies and spend the night playing board games or sitting under the stars with your kids...please do...and please attend or donate to our FundRazr social fundraising site in your absence.
Heres hoping you all get the jist of my thoughts...Im exhausted and nodded off at the end =)
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