tag:blogger.com,1999:blog-38053847789585154622024-02-07T20:53:52.611-03:30The Ramblings of RolladykeAshleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.comBlogger115125tag:blogger.com,1999:blog-3805384778958515462.post-30576255255044196112014-09-18T22:58:00.001-02:302014-09-18T22:58:34.131-02:30Test PostLittle Lizzie is big enough to be going to Post-Secondary now. I don't know how that happened. In case anyone is still reading here,. I'm using Rolladyke Rambles to show her how to do a few things<br />
<br />
<a href="http://nike.com/">Nike</a>Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com0tag:blogger.com,1999:blog-3805384778958515462.post-3303247939115520672012-01-30T18:46:00.000-03:302012-01-30T18:46:17.625-03:30Quiet but ListeningAs you've no doubt noticed, I don't post around here anymore. I've even fallen silent on Twitter.<br />
<br />
This isn't because I've stopped caring, I've just re-evaluated what my message is to the world.<br />
<br />
I will still continue to use this profile for commenting on the blogs which all of you have so candidly written, allowing me tiny glimpses into your lives. I always read, and will make an effort to say more.<br />
<br />
But my blog, my message, has moved. If you so wish, you can find me on my new blog<a href="http://sass-and-spasticity.blogspot.com/">, Sass and Spasticity,</a> which is a more anonymous look at sex and disability. If not, I understand. One thing that will continue to be posted here is the Child from Holland series- This will also move to my new blog, but any updates or further parts to it will appear here.<br />
<br />
My new twitter can be found here at <a href="https://twitter.com/#!/Sass_And_Spasm">Sass and Spasm</a>.<br />
<br />
<br />
Again, I want to thank you all for the last few years of friendship and education and understanding.<br />
<br />
I'm still listening. I still care. I'm still in awe.<br />
<br />
<br />
Yours fondly,<br />
<br />
The child from Holland<br />
<br />
Ashley/RolladykeAshleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com1tag:blogger.com,1999:blog-3805384778958515462.post-78008489987130632862011-06-30T23:26:00.002-02:302011-06-30T23:26:35.670-02:30ApologyThis is the response I received from the Motorcycle Ride for Dad in response to the letter I sent them in my last post.<br />
<br />
<div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: #1f497d; font-size: 11pt;">Hi,<u></u><u></u></span></div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: #1f497d; font-size: 11pt;">I am very sorry to hear of the loss of your Grandfather. I know personally how hard it can be to lose someone close to you from cancer.<u></u><u></u></span></div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: #1f497d; font-size: 11pt;">We’re sorry to hear that one of our ads has caused you distress, and although that wasn’t the intent I can appreciate how it initiated that response.<u></u><u></u></span></div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: #1f497d; font-size: 11pt;">You are correct that the objective of the ad is to raise a reaction from people so men understand that they need to get their prostates checked. With over 800,000 Canadian men currently walking around Canada not knowing they have this disease it’s an important message to send. Luckily over 90% of cases can be successfully treated if diagnosed early, but over 50% of men don’t see a doctor on a regular basis, or get their prostates checked. It’s crucial that we grab their attention so they can see what could happen if they don’t get a simple PSA and DRE.<u></u><u></u></span></div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: #1f497d; font-size: 11pt;">Our goal as an organization is to spread awareness and fund research, so that men can continue to be there for their families and friends for years to come. The chrome and leather grabs the attention of the masses on ride day, the research helps find hope for the future, and the awareness has the potential of saving men’s lives today. That ad is one of many awareness tools we use, and we wanted it to cause a take-charge reaction, because in the end that is what we are asking men to do—react, take control of their health, and get checked. <u></u><u></u></span></div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: #1f497d; font-size: 11pt;">Our intent was never to cause pain or guilt for those men, and their families, who have lost their fight against prostate cancer, and we sincerely regret any pain that viewing it has caused.<u></u><u></u></span></div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: #1f497d; font-size: 11pt;">Kind regards,</span></div><div class="MsoNormal" style="border-collapse: collapse; font-family: arial, sans-serif; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="color: #1f497d;"><span class="Apple-style-span" style="font-size: 15px;">[Name Redacted]<br />
National Communications Manager<br />
Motorcycle Ride for Dad</span></span></div>Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com0tag:blogger.com,1999:blog-3805384778958515462.post-61890822792767216822011-06-17T19:53:00.000-02:302011-06-17T19:53:02.365-02:30A Father's Day Post- Tissue Warning<div class="separator" style="clear: both; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSR0O5YZBaH2H9n_5jCiQro1zB8wGsa7GxElQTkEcVGQFb3czqB4JxBcdX1zAkkWnrFlFCQelIqvgZYc4h2bMXgg6EcY-4znSpZAXDtLjPkvKg0fsNdLbbSEGVZBCzwjBPSzmzDB2psj4/s1600/grampa.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="258" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSR0O5YZBaH2H9n_5jCiQro1zB8wGsa7GxElQTkEcVGQFb3czqB4JxBcdX1zAkkWnrFlFCQelIqvgZYc4h2bMXgg6EcY-4znSpZAXDtLjPkvKg0fsNdLbbSEGVZBCzwjBPSzmzDB2psj4/s320/grampa.jpg" style="cursor: move;" width="320" /></a></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">This is my grandfather. I took this picture before I turned 10 years old. It still sits on my dresser today.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Today is the 12th anniversary of his death from prostate cancer. </div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div class="separator" style="clear: both; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcjbLhT3RVOb53C-OcLOngPIaxAnRmBQTbx5cNadSJvdjHlsWoy5rglg43Nu4aGq4zDpp5UDpgX_4vFMim35WK_mm59ZT8A6KXPopI3feLgXb-FIt37dvDztF8KP425KxZPA4E1FhQwGs/s1600/ad.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcjbLhT3RVOb53C-OcLOngPIaxAnRmBQTbx5cNadSJvdjHlsWoy5rglg43Nu4aGq4zDpp5UDpgX_4vFMim35WK_mm59ZT8A6KXPopI3feLgXb-FIt37dvDztF8KP425KxZPA4E1FhQwGs/s320/ad.jpg" style="cursor: move;" width="127" /></a></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">This is what I saw in the paper today.<br />
<br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Once I picked up the pieces of my broken heart, this is what I wrote</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Dear [Name removed for privacy reasons, however it is available on the website listed in the ad]</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">As the granddaughter of a wonderful man who lost his 4 year battle with prostate cancer on this date in 1999, I was extremely disappointed to find the "There's No Excuse for Dying of Prostate Cancer" ad in the Friday Edition of my local newspaper. I fail to understand why the Motorcycle Ride for Dad- which I had previously thought to be a wonderful organization, a flash of leather and chrome and "Dad power" amid a sea of pink ribbons- would feel the need to trigger guilt and regret in the minds of prostate cancer sufferers and their families on this weekend of all weekends, considering that Father's Day is Sunday, June 19.<br />
<br />
No excuse for dying of prostate cancer? That's called victim blaming. Is my grandfather to blame for the fact that he was already in his seventies when his prostate cancer was discovered? Is he to blame for the shame he endured while wearing a catheter and leg bag for four years, the discomfort and infection? Is he to blame for the illness that his palliative radiation brought on as they struggled to get the cancer under control enough to allow him to live his final days free of pain? This very treatment stole the remaining strength the cancer had not eroded and landed him in a hospital bed in uncontrollable agony from bone metastases during his last June, a month that every Dad and Grandfather deserves to look forward to with anticipation of crayoned cards and new ties and socks. Well, my grandfather's last Father's Day card was slipped into his casket by my 5 year old sister, his last socks and tie were purchased for him to wear in his casket... and your ad wants to send the message that this was his fault? Well, there's no excuse for forgetting either. There's no excuse for forgetting that behind every Dad that the Motorcycle Ride is for or has ever been for there stands a family fighting for their hero, or, all too often, grieving the loss of him, and we continue to grieve that loss long after their pain has ended.<br />
<br />
I believe I understand the message that you wanted to send with this campaign: That screening and early detection save lives. But words are powerful things, something which I would hope the National Communications Manager for the Motorcycle Ride for Dad would understand. I believe you knew that ad would get read this weekend as thousands of Dads across Canada scoured the paper to rehash Game 7 of the Stanley Cup Finals, for better or for worse. And maybe it caught the attention of some of them- Maybe some of them will get screened now, or will come out to their local portion of the Ride. But it also caught the attention of at least one grieving granddaughter, adding a pang of guilt as I sift through many years of beautiful memories of the only man in the world I would have ever gotten on a motorcycle for, and a man who would have been very pleased to see the Bruins take the cup.<br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">With a broken heart,<br />
<br />
Rolladyke<br />
<br />
<br />
I'll be interested to see what response, if any, I receive, but I really felt like I had to send it.</div>Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com2tag:blogger.com,1999:blog-3805384778958515462.post-60434451617228084302011-05-11T23:08:00.000-02:302011-05-13T17:51:00.883-02:30Hey, YouYeah. You. Let me tell you something about Blogging. It's a snapshot. And it's a Godsend. It helps get out the words that are screaming in your head- That maybe you can't say to anyone else, not even the people who love you most in the world. Maybe they're angry words, maybe they're sad words, maybe they're deliriously happy words. Maybe they're something you wish someone had said to you. You can click "Publish Post" and put those words out there and leave them in Cyberspace and get back to living your life.<br />
<br />
And sometimes, when you put them out there, something magical happens. Sometimes people crawl out of the woodwork of this big thing we call the Internet and they say "Me too" or "I'm listening" or "Have you tried...?" and there's a wonderful thrill of connection and you feel like those raw, painful words, or those silly giddy words, poured out in a moment, mean something to someone else.<br />
<br />
Comment, by all means. Challenge, educate, enlighten. But be respectful.<br />
<br />
Blogging is a brief moment in someone's life, not a 24/7 live feed. Don't use blogs to judge. If you don't like what you've read, then I'm sure there's a big red x in the corner of your browser just like there is in mine.<br />
<br />
"Authenticity" of blogs? Well, okay, but you better be ready to let someone judge the "authenticity" of your painstakingly posed photographs.<br />
<br />
((This is not to say that people are not hurt when a blog they have come to read and believe in is revealed to be wholly false, such as about a person who never existed))<br />
<br />
There are plenty of pieces- good and bad and mundane- of my life that do not make it to this blog. I am more than what you see here. And I choose to believe that the people behind the blogs I read are more than what they show me.<br />
<br />
I'm doing my best, and I choose to believe that about the authors of the blogs I read, too. If you don't, if you can't, then maybe you should stop reading blogs. I know you should definitely stop reading mine.Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com4tag:blogger.com,1999:blog-3805384778958515462.post-25882146844120352022011-05-01T18:23:00.001-02:302011-05-02T15:29:31.053-02:30A Child From Holland Part 3: Border Strip Search<i>First, a note on this series. When FosterAbba encouraged me to turn A Child From Holland into a blog series I had no idea where I would continue to find material. As it turns out, everywhere.<br />
<br />
I also want to acknowledge that this series does have a particular slant, focusing as it does on the differences in citizenship between Holland and Italy. This is only one piece of my own story, let alone the stories of other children from my country. It`s just this is what is coming to the forefront to be blogged about.</i><br />
<br />
<b>Border Strip Search</b><br />
<b><br />
</b><br />
Occasionally I browse Hopeful Parents, searching for further answers to my continuing citizenship dilemma. My own mother has never talked about her feelings about my experience, so the parents who blog there amaze me with their words...actually, now that I think about it, my mother`s difficulty with expressing how it was to raise a child from Holland may have had something to do with why I found many of my beloved "Blogger Folks." But that's another post entirely.<br />
<br />
<a href="http://kidneysandeyes.com/">Julia Roberts</a>'s <a href="http://www.hopefulparents.org/blog/2011/4/25/bodies-of-their-own.html">Bodies of their Own</a> was the inspiration behind this installment of "A Child From Holland." I, too, was a child who was often required to disrobe for medical professionals. My earliest physiotherapy sessions were conducted in a diaper only, doctors examinations were semi-annual at least, and these were doctors who, unlike my family doctor who would only look at the throat that hurt or the ear that ached, wanted to see all of me.<br />
<br />
I don't remember having a problem with it, or with having an army of people change my clothes. My mother changed me, my grandmother changed me, occasionally even my grandfather changed me before I went to school. He even usually did so with a cheerful exclamation of "Let's skin the bunny!" (Perhaps that's a Newfoundlandism.) When I *did* go to school there were paraprofessionals who took over the job of putting on my coat, taking off my winter boots, changing them for my braces and shoes, even changing me when I had accidents. It was a set of the same four parapros, usually, but there were occasionally substitutes, and I don't recall refusing to change- or even thinking of refusing to change- for any of them.<br />
<br />
I had been taught, of course, that my "bathing suit area" was private, and that any touch that made me feel uncomfortable was a bad touch. I had been read all the right books, like <a href="http://www.stopchildabuse.ca/silver-horse.htm">The Secret of the Silver Horse</a> and <a href="http://umanitoba.ca/cm/cmarchive/vol16no5/revtomdoesntvisit.html">Tom Doesn't Visit Us Anymore</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=therambofroll-20&l=btl&camp=213689&creative=392969&o=1&a=0889611173" style="border: none !important; margin: 0px !important; padding: 0px !important;" width="1" />. But somehow I knew that medical things were different, that medical touches were to be borne even if they were uncomfortable, that the stitches had to come out or the catheter had to go in, or the stretch had to be held until the count of ten, and I could scream and make it difficult or I could giggle helplessly and it would be over faster.<br />
<br />
I didn't realize that some people- people with that magical Italian citizenship- could say no to their doctors- until one day I saw my specialist on the other side of the border.<br />
<br />
It was the summer I was eleven, and I had had major surgery on my femurs and hamstrings and hip flexors. I was being very closely followed, every week or so, I think, and I was in a day treatment program. One particular week there wasn't space for me to be seen in Cerebral Palsy clinic, so I was seen in a general Orthopedic Clinic alongside Italian children who had had the bad luck to break bones in the summertime. I was alone, under direction to return to the Recreation Therapy room when I was finished, but the girl on the other side of the curtain was Italian, so she had her mother with her. I still remember that she had surgery for her knee, and she was refusing to take off her jeans so Dr. James could look at where the healing surgical sites were.<br />
<br />
I remember thinking that jeans were never supposed to be worn to an orthopedic appointment and feeling a bit superior in that knowledge.<br />
<br />
Her mother asked her a second time to take her jeans off, and the girl on the other side of the curtain still refused, Dr. James asked very nicely and explained that he needed to make sure everything looked okay and she still refused. Surely now, thought my little, medically-conditioned brain, someone would *make* her take the pants off, say that they were very sorry but some things had to be done, but it didn't happen. The next thing I knew, Dr. James was outside the curtain, in the little tunnel between her curtain and mine, taking notes on his little handheld tape recorder,<br />
<br />
"Patient ambulating well, but due to intense modesty I was unable to fully examine her."<br />
<br />
I know now that that girl's medical appointment was private, but at the time I didn't know much about medical confidentiality. We all had our therapy in a big gym and it was common for older kids to encourage younger kids or for peers to cheer each other on or pressure each other into compliance, so when Dr. James came around my curtain, I demanded,<br />
<br />
"How come she didn't have to take her pants off! If I wouldn't take my pants off you'd laugh at me and get someone in here to do it!"<br />
<br />
Bless Dr. James, he sat down on the examining table with me and admitted that he probably would laugh if I refused to take my pants off and that he probably would call someone in to do it, but he knew I wouldn't refuse to take my pants off because I was working so hard to get better. Eleven year old Rolladyke was satisfied with this answer.<br />
<br />
Now, at twenty five, I still don't know what the real answer is for parents on either side of the border, let alone children. We need to teach children, regardless of nationality, to respect and own their bodies, but we also need to instill that it's important to be honest and open with the professionals that help them, and that part of that honesty means taking off clothes when appropriate and showing the right body parts, like teeth to the dentist and eyes to the eye doctor. But what I will probably never forget is the difference between that girl from Italy and me.Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com3tag:blogger.com,1999:blog-3805384778958515462.post-9386803703682176152011-04-26T23:33:00.000-02:302011-04-26T23:33:30.707-02:30A Child From Holland, Part 2: Getting Something Out Of It.<i>I had no intention of making a series of A Child from Holland posts, but<a href="http://thefinalmaze.blogspot.com/"> Foster Abba</a> asked me an important question- "Then what happened?"- and I realized I had more to say. So here we go. As in other posts, all names that are not mine are pseudonyms.</i><br />
<i><br />
</i><br />
This is something that's been brewing in the back of my mind for a few days... friendship and love... I went to a small, denominational school until I was 13. There were social pros and cons to that- I had most of the same people in my classes from Kindergarten on up, so they knew me and my walker and my Holland wooden shoes and crazy walking. They knew other things too, though, like how I had bathroom accidents and sometimes got extra "attention" in the classroom from a paraprofessional, which, as we all entered the general insanity of adolescence, just gave the kind of kids who collect ammunition new and different weapons to use against me. I'm not saying I was their only target, I was different, a sickly member of the herd worth turning on, but intellectually I was their peer, and I was supposed to "just" have CP.- Unlike the English Language Learner who was another tortured member of the class I *knew* what they were saying and doing to me, and unlike the student who had the mysterious diagnosis of "Behavioural" I didn't melt down and run from the classroom to escape. (There were days I wished I could.)<br />
<br />
All of that is just to say that changing schools at 13 was good for me. I met new people and reinvented myself a little...including buying 5 identical pairs of pants so no one would ever know if I had to change in the middle of the day. And it worked for awhile..until one day, at 14, I was taken aside by my paraprofessional.<br />
<br />
"Who walked you to class yesterday, Ashley?"<br />
<br />
"Um...Annie." Annie had become a very close friend the year before, and our madcap, giggling dashes to class were commonplace, her pushing my wheelchair through the throng while I balanced a precarious tower of books and binders on my lap- hers and mine, usually 6 or 7 books in total and the corresponding binders. It had seemed a good system- my Individual Student Support Plan (my province's name for an IEP) termed it "Self Directed Peer Support." My paraprofessional was still available, but usually we left her in our wake, planning lunch or the upcoming weekend as I peered for obstacles around the teetering pile of books.<br />
<br />
"Well, that won't be happening anymore." <br />
<br />
"Why?" I looked around- Annie hadn't arrived in the classroom yet, and, already prone to anxiety, I began to think the worst.<br />
<br />
"Her mother called the school yesterday and demanded to know why it was Annie's responsibility to push your chair. I have to do it now, I'm sorry. I'll see you at 9." She slipped out, a nice enough woman who I liked okay, just as Annie found her way in and took the desk next to mine.<br />
<br />
"You could've told me!" I burst out.<br />
<br />
"I didn't know." Annie promised, looking right at me. "Mom took me to the doctor yesterday and he asked about my screwy thumb." Annie's thumb had been broken years before and had healed strangely. It didn't hurt her, but the doctors were trying some strange things with bracing that made no sense to either of us. "He said it still isn't straightening, and asked me if there was anything strenuous I was doing. I said no, but Mom started freaking out about my pushing your chair. The doctor said it probably made no difference, but she told me today she'd called the school, I'm so sorry."<br />
<br />
--<br />
<br />
Little did I know this was essentially the end of Annie and me. Her mother had decided, plain and simple, that I was a burden. That her daughter wasn't "getting anything" out of our friendship and was being taken advantage of. As a result, Annie was no longer allowed to visit my home on the weekends or to talk on the phone. She kept assuring me- and I believe she meant it- that I had done nothing wrong, but no teenage girls' friendship can flourish without girls nights and telephone conversations...and our days of giggling in the madness of the halls were over- Once again I was picked up by my adult parapro 5 minutes before each class ended and deposited in the next one. Annie tried to accompany us, but it wasn't allowed. I was "the different one" again...<br />
<br />
My first love's mother also had this problem. We were fine for awhile, but then it didn't matter what either of us said, there was "inequality" and "deserving better" and we drifted apart.<br />
<br />
Now, I have<a href="http://chock-full-o-immodesty.blogspot.com/"> Immodest-Lady</a>...and her mother has been the most blatant of all...but gifted with maturity and romantic love, she's fought back, refusing to believe it, reassuring her mother (and me) of all the wonderful things I do for her and for our household, even though they might not be as visible as her helping me with some caregiving tasks...<br />
<br />
But all of this leaves me wondering- Do the mothers of neurotypical "Italian" children view all friendships with such scrutiny? Do they teach their children that friendship isn't a give and take, but is, instead, an opportunity for advancement? I hope not.<br />
<br />
I wish I could take the three mothers in the above stories- Annie's Mom, First Love's Mom, and Immodest Mom, and ask them, if they were mothers of Holland children instead, wouldn't they want cross-border friendships for their children? Wouldn't they spend nights begging The Powers that they believe in for just one person to *see* their child?Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com2tag:blogger.com,1999:blog-3805384778958515462.post-79307748924924292292011-04-10T19:42:00.000-02:302011-04-10T19:42:44.618-02:30On Being From Holland<div style="background-color: transparent;"><span id="internal-source-marker_0.7876521733123809" style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">This post is meant to be sort of an expanded version of the comment I left over </span><a href="http://thefinalmaze.blogspot.com/2011/04/screw-holland-i-wanted-to-go-to-tahiti.html"><span style="background-color: transparent; color: #000099; font-family: Arial; font-size: 11pt; font-style: normal; font-weight: normal; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">here</span></a><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> at the Final Maze. I am a kid from Holland. I know that my Mom was very young when I was born, and I know that she wanted me very much, but I also know she expected me to be Italian, and there's been a grieving process around that. </span></div><br />
<span class="Apple-style-span" style="font-family: Arial; font-size: 15px; white-space: pre-wrap;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial; font-size: 15px; white-space: pre-wrap;">See, babies, even brain damaged babies, are little bundles of potential, and the pediatrician who diagnosed me was floored by the fact that at 14 months old I was speaking and interacting, so when Mom asked for pamphlets or books on kids with CP she was told she couldn't have any- "because all of those are going to be about kids way worse than she will be." So Mom was kind of led to believe that though I was born in Holland I'd soon have a passport to Italy. And therapy, at least at first, looked like it was going to be that passport. Early physical and occupational therapy happens 3 times a week, and I had therapists who were well used to sobbing babies and didn't let that stop them from pushing me to do what they wanted me to do.</span><br />
<br />
<div style="background-color: transparent;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span><br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">At three years old I had my first surgery, a muscle release to unbend my knobby knees and loosen my heelcords to stop my toe walking, and voila! All of a sudden my ticket to Italy seemed to be within reach: All I had to do was learn to walk! (One of the joys of being from Holland is being old enough to remember your mother's jubilant sobbing as you take your first steps) </span><br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">But...maybe it was the wooden shoes... I still swayed like a ship in a gale and still fell. Often. It seemed to be enough for the people around me, though, and if I had never gone to school I might have lived my whole life in happy, funny-walking Holland.<br class="kix-line-break" /><br class="kix-line-break" />I did turn five, though, and I did go to school, and I realised for the first time that most other people were from Italy. They didn’t know the words that were so commonplace in my world like “physio” and “walker” and “gait training” and what was more, they had *done* things that we did not do in Holland like cross the street alone and climb snowbanks and make it to the bathroom on time *all* the time. Italy started to look like a *very* cool place. Still, I comforted myself that there were cool things about Holland too, horseback riding lessons and games of Critter in the Candy among them, and...I hadn’t seen any *adults* in Holland, so surely we all must move to Italy at some magical age. I remember thinking that that age was eleven the summer I couldn’t get enough of the Full House tie in books. Stephanie Tanner could take a shower and mow the lawn. I didn’t have a lawn to mow, and didn’t care to, but a shower...<br class="kix-line-break" /><br class="kix-line-break" />I turned eleven, and twelve, and sixteen, and still walked in a wild, crazy swaying pattern and crashed to the floor on a regular basis, and more and more I looked over the border into Italy and saw the kids I went to school with doing all their Italian things. It was hard to stare for too long, though, so I’d look around Holland... but most people I knew there didn’t venture to the border. I felt like I was in exile, not a citizen of either Italy or Holland. </span></div>Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com2tag:blogger.com,1999:blog-3805384778958515462.post-90204589806798412792011-03-16T13:18:00.000-02:302011-03-16T13:18:58.379-02:30Looking at the world from the wreckage of what was supposed to be my life.**Not a shiny happy post. I'm sorry**<br />
<br />
Have been struggling with what to say lately. I just don't know. I started this blog absolutely sure I would go into psychology, wanting to read the blogs of parents "in the trenches" and offer what support I could. I still want to do that...the support part. But I couldn't hack it in university, and I moved out of my mother's house, and my mother's marriage disintegrated and things are so much better....except I don't have my education, am struggling to manage with just barely enough money, am drowning drowning drowning and waiting for a break...<br />
<br />
Physio twice weekly... so tired...don't want to leave the house anymore than that...<br />
<br />
I never knew it was possible to be so happy with some things and so lost with others.<br />
<br />
I don't know what to say anymore. I don't know if there's anything even worth saying.Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com3tag:blogger.com,1999:blog-3805384778958515462.post-52848993326398918802011-01-06T17:38:00.000-03:302011-01-06T17:38:53.031-03:30Last Surgery Post- Contains Xray image<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMPrzuqz5REAwGzBnEHPhPePUg6diSm2Iw9OFEKrPWT36wCsEkdUX8UyjqTZsN5T5d1FEpoh9EUye3AW5clG0FO_FEIKgdYrXYBXZrqPRFmc8wE3EMYYmKAPHw-dpRZBBkiXZz5eDbyzrr/s1600/ASHLEY1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMPrzuqz5REAwGzBnEHPhPePUg6diSm2Iw9OFEKrPWT36wCsEkdUX8UyjqTZsN5T5d1FEpoh9EUye3AW5clG0FO_FEIKgdYrXYBXZrqPRFmc8wE3EMYYmKAPHw-dpRZBBkiXZz5eDbyzrr/s320/ASHLEY1.JPG" width="192" /></a></div><br />
<br />
<br />
<br />
This is what all the fuss has been about.Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com1tag:blogger.com,1999:blog-3805384778958515462.post-57549693596849019772010-12-26T20:08:00.003-03:302010-12-26T20:21:46.754-03:30The Real Santa Claus- Possible tissue warningHi, all- I hope you've had happy and peaceful holidays so far.<br />
<br />
Mine were a little different than normal, but still very nice, but this is not a post about my loot from Santa or exactly how much junk food is in the house at present. Instead, this is a true story that was shared with me by Lady's cousin Chip who is a NICU nurse, as we spent time with their family on Christmas Day.<br />
<br />
<div style="text-align: center;">***</div>"I saw the real Santa Claus last night," she said to me, and I smiled patiently, thinking she was teasing.<br />
<br />
"Oh yeah?"<br />
<br />
"No, I really did. He's been the Santa for the Downtown Christmas Parade and for the Children's Hospital for the last 30 years."<br />
<br />
"That's commitment," I remarked. "He must be a really nice man."<br />
<br />
"You have no idea. He comes into the hospital every year the week before Christmas and visits every single child. Every ward, every floor, from Pediatric Oncology to my tiny sick babies. He takes a picture with each one, and comes back on Christmas eve to deliver the developed pictures to every little boy and girl, or Mom, who's still there. The kids who get out get them mailed to them."<br />
<br />
"Was he by last night?"<br />
<br />
"Yes- He went to every single bed space and incubator. There was a little girl there about 5 years old who we had let in because it was Christmas Eve. We told her Mom he was coming and she said the little girl was kind of afraid of Santa but she hoped he could get some nice pictures of the little girl because she wouldn't sit on the lap of the Santa at the mall. Her baby boy was really sick too, so she liked the idea of having their picture taken together by our Santa."<br />
<br />
I was well hooked on the story by this time and I asked,<br />
<br />
"How did she react to our Santa?"<br />
<br />
"Well, she heard his bells coming down the hall and she ran to peek out every minute or so, and come back to tell her Mommy 'Mommy, Mommy he's coming!' When he came in, he doesn't come in like most Santas with the big "Ho Ho Ho!" He's very meek and mild because most of our kids are so sick, so she sidled up to him and he showed her a book he had made about 15 years ago that shows the plane he uses when there's no snow, and the special entrance he uses to get into the hospital."<br />
<br />
"That's amazing," I could feel myself smiling. "Did she sit up in his lap?"<br />
<br />
"She sure did! Her Mom was so happy she was snapping away with her own camera trying to capture it. Then Santa asked her what she wanted for Christmas, but she only said that she wanted him to see her brother because he was really sick."<br />
<br />
"Did Santa go over to the incubator?"<br />
<br />
"Yup- He's got the poses down to a science. If the baby can be taken out he'll take them up in his arms or just cradle them. If they can't come out of the isolette, he'll peer in at them, it's so sweet."<br />
<br />
"What a beautiful story...what did the little girl do then?"<br />
<br />
"She was really proud of the baby, and Santa's daughter happens to be our pediatric cardiologist who makes her rounds with him. Santa carries a bear on his mailbag every year and he chooses one child in the hospital to give it to. He tried to give it to the little girl, but she wouldn't take it at first because she was afraid he might be lonely for it."<br />
<br />
"I can't believe there are still people like that in the world," I said, feeling the need to track down some tissues rather quickly.<br />
<br />
"Tell me about it." Chip answered. "His daughter just looked at him with such admiration- I mean everyone looks at their Dad with admiration- but this was just *awe* at what a good person he was."<br />
<br />
"It must be a calling."<br />
<br />
"It must be. Do you know what else he did last night?" Chip's eyes began to fill as she brought it up.<br />
<br />
"There can't be more..."<br />
<br />
"Yeah, there is. We have one baby who we've had for months, and whose parents don't come to visit him. Santa asked why he was all alone. We explained that he didn't get visitors- no one would have known any better if he had just passed that baby by or had just leaned in over the incubator for a quick picture- but Santa asked for a rocking chair instead. He took that baby boy out, with his ventilator tubes, and rocked him to sleep. Everybody cried."<br />
<br />
"I bet they did!" I could barely get the words out. "I guess you really did see the Real Santa Claus last night."Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com4tag:blogger.com,1999:blog-3805384778958515462.post-70081430948428787192010-12-01T16:04:00.002-03:302010-12-01T16:25:46.748-03:30Taking a Break From Surgery Posts to Answer a Question<b>This post published about 4 times before I was ready. I'm sorry if its shown up in your reader multiple times</b><br />
<br />
Hi, my name is Ashley and I have food and sensory issues...<br />
<br />
<i>Hi, Ashley</i><br />
<i><br />
</i><br />
CP is a mixed bag of gifts and troubles. Sensory Integration Disorder is one of the... not so nice parts about it. I have sensory needs that directly impact my life. One of the biggest issues I have is around food- I have an almost phobic reaction when presented with and expected to eat "new" foods. (For those of you who are coming to Orlando, no worries. People can eat whatever they want around me)<br />
<br />
The other piece to my food puzzle is anxiety. CP affected my swallowing fairly significantly when I was a baby, so people were *very* anxious while feeding me. I picked up on that, and became anxious about food in response.<br />
<br />
I was giving some ideas on another blog as to how someone's kiddo with sensory issues might be able to eat a wider variety of healthy foods, and promised to post about my own strategies. Here they are, in no particular order.<br />
<ul><li>Relax, relax, relax: Make mealtimes and food as easy as possible. Do not bribe or punish for refusing or trying new foods. Praise, even just for having something new on the plate, however, is good</li>
<li>Supplement: Until the kiddo is able to eat a wide variety of foods, use pediasure and or vitamins to make sure nutritional needs are being met. (This helps a lot with relaxing) You may need to have bloodtests done, especially for B12. I was severely lacking in B12, and I choose to supplement through monthly injections</li>
<li>Offer, offer offer: While giving your kiddo what they are able to eat, don't be afraid to offer what you might be eating. Do this in a no-pressure way. Your kiddo might surprise you and say yes one of these days</li>
<li>Positive Peer Pressure: Have your child watch others eat- People they look up to or respect. Lunch dates with older siblings or heroes is a great idea. Give your child things they are comfortable eating, but offer what the other person is eating too. This can also help with a really embarrassing issue that can come up: Not knowing *how* to eat a certain food because you've never eaten it before. Example- How do you eat pizza? How do you pick up a chicken wing? Sometimes "monkey see monkey do" is less scary than asking</li>
</ul><div>Finally, this is my method for trying a new food. It might take several "offerings" but it works for me.</div><div><br />
</div><div><ul><li>Get used to the smell of the food. Maybe even sniff it. </li>
<li>Poke it with one finger (you would be surprised how hard this can be!)</li>
<li>"Play" in it with the proper utensil- How does it feel on the spoon or fork or chopstick?</li>
<li>Put it in your mouth- Have a napkin nearby. How does it feel on your tongue? If you need to spit it out, that's okay.</li>
</ul><div>If all of these steps yield positive results I can usually add the food to my "I can eat it" list.<br />
<br />
Happy Eating!<br />
<br />
</div></div>Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com8tag:blogger.com,1999:blog-3805384778958515462.post-43272735982873883522010-11-26T15:12:00.000-03:302010-11-26T15:12:14.362-03:30So...very tired... but hot pinkHealing is hard work. Usually I catch a nap in the middle of the day and head to bed early. But I had an appointment with Dr. Rock yesterday. Everything looks good- My foot is, in his words, straight as an arrow. I'm going to be in cast for quite a while, though, so once the stitches and staples were out I decided to pick a colour. I think you'll agree it's very Rolladyke<div><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoMRpatNBjFKtB02qEKNJTov85syAnxka7UdaSSYhTJ53SiKhPbDh4A9L9sWs9GQemx_sZ-6-BMU3-kxfZfCf8qn8-9uRZlqY4ZSdyGSPBzfRyEeKT_-j2X8UJDy5ieCPMrTW16XzqjjKI/s1600/Hot+Pink+Cast.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoMRpatNBjFKtB02qEKNJTov85syAnxka7UdaSSYhTJ53SiKhPbDh4A9L9sWs9GQemx_sZ-6-BMU3-kxfZfCf8qn8-9uRZlqY4ZSdyGSPBzfRyEeKT_-j2X8UJDy5ieCPMrTW16XzqjjKI/s320/Hot+Pink+Cast.jpg" width="320" /></a></div><div><br />
</div>Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com2tag:blogger.com,1999:blog-3805384778958515462.post-87569025445900127282010-11-19T10:43:00.000-03:302010-11-19T10:43:01.621-03:30Surgery 2010- Day 1- Part 1- Checking it Twice, and Off to SleepLady and I arrived at the hospital at 6 AM Newfoundland time with my suitcase. I didn't see the point in getting dressed just to have to get undressed again, so I went in fuzzy blue bunny pyjamas, because that's how I roll.<br />
<br />
We made our way to the Day Surgery unit, even though I was having nothing resembling day surgery. I didn't have to wait long before being called back to a room that had 6 or 7 curtained cubicles with stretchers. My nurse introduced herself as Wendy and asked when I had eaten last, to be sure I had fasted from food at 12 midnight and clear fluids from 4 AM as requested at pre-op the previous day. When I told her I had, she gave my my usual morning meds for acid reflux, plus an *a*t*i*v*a*n for pre-surgery anxiety, which I had in spades.<br />
<br />
I honestly think that with 8 other surgeries under my belt before this one, I can have some pretty serious trauma responses to hospital smells and procedures. I tried to remember that breathing is essential to living as I put on a gown and little booties. It was also a little nervewracking to have to correct the nurse a few times as she said "You're having a right foot triple arthrodesis right?"<br />
<br />
"No no, left! Please don't have the surgeon open the right foot, that's already done!"<br />
<br />
Had a few quick teary moments as I realised just how *close* I was to putting myself in the hands of the new, unfamiliar Adult healthcare system. I had complete, multidisciplinary CP care until I was 19.<br />
<br />
They took me from Lady at about 7:30 AM and brought me in further. I was on a line of gurneys and people kept making sure my name was Ashley and that I was having a triple arthrodesis. (I was getting tired of it until someone asked me if my name was Kelly, and if I was having surgery on my stomach. Then I made sure I answered as clearly as possible- Every time.)<br />
<br />
Finally, Dr. Rock's intern Dr. K came to see me and I *begged* him to initial the proper foot. He obliged. In big letters. Then I met with Dr. Bird, the resident from Anasthesia and her boss, Dr.Nibble. <br />
<br />
(I'm loving the pseudonyms here!)<br />
<br />
I have a history of hallucinations and breathing difficulty with heavy doses of IV m*o*r*p*h*e*n*e, so we chatted about that, and agreed to use general anasthesia, but also to place an epidural and deliver a "numbing" medication, similar to what you receive at the dentist, that would bathe the nerves of my spinal cord and numb most of the initial post-surgery pain. This would also require placement of a urinary catheter, but I was fine with that.<br />
<br />
Part of my Cerebral Palsy gives me serious spasticity in my left hand. It's good for typing, but not much else. My right hand does everything for me. Therefore, I asked Dr. Nibble to avoid putting the IV in my right hand at all costs, as I wouldn't even be able to feed myself if it was out of commission. He agreed. However, when I made it into the OR itself, he found that even with a shot of "freezing" medicine he couldn't get a large enough needle into the vein in my left arm or hand to sustain me after surgery, and that the right hand didn't look much better.<br />
<br />
I had two choices; I could have Dr. Nibble put me out with the small needle he managed to get into my arm and then he could place a "central line" in my neck, straight into my jugular vein, but if I was unconscious he couldn't administer the epidural for pain control, thus putting myself at risk for lung problems and a psychological condition known as ICU psychosis. Or, I could stay awake for the central line, he would talk me through every step, and then I could have more anti-anxiety meds by IV before the epidural was put in.<br />
<br />
That a*t*i*v*a*n must have been good stuff, because I agreed to the central line while awake as long as he would talk to me and someone else would hold my hand. The nurses working that day were ex-pediatric nurses, so they were very experienced hand holders. Dr. Nibble seemed relieved, and told me that was a really good idea.<br />
<br />
He froze the area on the right side of my neck with an injection he warned me would sting (it did) and then, while I looked to the left, draped my face in sterile pads. The nurse who held my hand also held up the drapes from over my eyes so I could see *her*, just not Dr. Nibble. After the freezing, he found my jugular vein with ultrasound, and then passed a guide wire into it. This was kind of weird- Lots of pressure, and a metalic taste in my mouth. He had to do a little bit of fiddling to get the wire exactly where he wanted it to go- Then he slid a hollow rubber catheter over it, and pulled the wire back out. Some tape, and two stitches in the already numb skin of my neck, a clear plastic dressing, and I was the proud owner of a central line.<br />
<br />
I don't remember much of *exactly* what was said that day, but I do remember my hand holding nurse exclaiming,<br />
<br />
"God, Josh," calling Dr. Nibble by his first name. "Don't let her see you, you're *filthy*- Can someone change Josh's scrubs please!" I went off into gales of giggles at this- They had tried so hard to keep my anxiety low, but I am enough of a medical geek to have known the only thing Dr. Nibble could have been "filthy" with was my own blood- Jugular vein is under a nice bit of pressure, and he had been digging in there with wire and needles and catheters oh my. He admitted it when I asked, then pulled up a sedative into a syringe.<br />
<br />
"Nice big drink for you before the epidural." He promised. "You've earned it!"<br />
<br />
I did feel a bit floaty after that, but I remember being turned onto my side for the epidural, and then a feeling of tremendous pressure in my spine. I think I whimpered a bit, because Dt. Nibble remarked, "You *would* be difficult to get an epidural in, too. Is the pressure going straight down your back? To your tail bone?"<br />
<br />
"No... Left leg."<br />
<br />
"That's not right, we''ll try again." A brief rest, then more pressure.<br />
<br />
"Straight down this time." I said- And then I don't remember anything else until after surgery.Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com0tag:blogger.com,1999:blog-3805384778958515462.post-5798912772191052112010-11-17T19:30:00.000-03:302010-11-17T19:30:48.785-03:30Here's to the next 100!I'm home! I didn't have the stamina for blog checking via Blackberry or laptop, nor for DVD watching, as I had hoped.<br />
<br />
Trying to recap surgery-week in my own mind before I do some posts.Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com3tag:blogger.com,1999:blog-3805384778958515462.post-10130020500290794022010-11-10T05:00:00.000-03:302010-11-10T05:00:48.958-03:30100th Post!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn7fOe5KUL1VgWxXyeODEL2aVQZyUMBD9qa53kzmHspgMdYvYCPIa66z7KKS0mIWsU2PUS87-hQvm0qE6Yiu9X7zuo4qpOtST_9fKIUyKq4gOW_eQ3biqrXVYZKyhFMBW2qq18zoOrt94O/s1600/Foot+Cake.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn7fOe5KUL1VgWxXyeODEL2aVQZyUMBD9qa53kzmHspgMdYvYCPIa66z7KKS0mIWsU2PUS87-hQvm0qE6Yiu9X7zuo4qpOtST_9fKIUyKq4gOW_eQ3biqrXVYZKyhFMBW2qq18zoOrt94O/s320/Foot+Cake.jpg" width="320" /></a></div><br />
<br />
I'm off to the hospital *very* shortly, but I couldn't resist showing off yet another of <a href="http://chock-full-o-immodesty.blogspot.com/?zx=1efbf5ba744f2617">Lady</a>'s fabulous cakes. She has a knack for ordering just the right message on the cake that will make me smile.<br />
<br />
For anyone who missed it, her last cake is<a href="http://rolladyke-rambles.blogspot.com/2010/08/two-posts-in-day-but-i-had-to-share.html"> here</a>.Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com2tag:blogger.com,1999:blog-3805384778958515462.post-62251822058779887562010-11-09T23:09:00.000-03:302010-11-09T23:09:00.789-03:30Made it through pre-op!7 hours and counting. I made it through pre-op testing today and had a good talk with Anesthesia. Now I spend one last night home in my own bed before heading to the hospital tomorrow morning at 5 AM EST. Surgery is at 6:30 AM, EST, if anyone is inclined to send good vibes or prayers during that time.<br />
<br />
I will definitely be able to Tweet from hospital, and I've added the feed to the side of the blog. (Username @Rolladyke)<br />
<br />
See you all on the flip side!Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com0tag:blogger.com,1999:blog-3805384778958515462.post-51383780410807125782010-11-01T14:08:00.002-02:302010-11-01T21:13:36.068-02:30And now...EDITEDTo see if a heart can actually rip in two.<br />
<br />
Any prayers appreciated.<br />
<br />
************************************************************************************<br />
<br />
Hearts are resilient, and so are we.<br />
<br />
Caregiver burnout- Is there anything more insidious? After all, if you *love* the person, isn't that enough to fill the well?<br />
<br />
Not always. But it is enough to make you sit back, take a look, take a breath, ask for help.<br />
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We're breathing.Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com4tag:blogger.com,1999:blog-3805384778958515462.post-90761311700910168032010-10-21T12:18:00.000-02:302010-10-21T12:18:35.240-02:30Surgery HousekeepingOkay. So. Here's the scoop, as I know it.<br />
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Surgery is November 10, and I won't officially enter the hospital until that date. It's been so long since I've been in overnight that I actually do not know whether or not I can expect WiFi or not. It's possible that the hospital has its own, and its also possible that my university WiFi will work, as the hospital is technically on campus. I estimate staying anywhere from 3 days to a week, and I don't want to be out of touch all that time.<br />
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If I get the Blackberry back in working order before I go in, I'll be able to read blogs and maybe post to this one. If I don't, I'll be taking Lady's text-but-not-web enabled phone and updating via twitter. I'll put my feed on the side here, too, so those who don't Twitter (I don't, not frequently) can also check up if they are so inclined...Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com1tag:blogger.com,1999:blog-3805384778958515462.post-40759350636215068162010-10-19T10:58:00.003-02:302010-10-19T11:12:16.795-02:30I almost don't believe it- EDITEDBut I appear to have a surgery date.<br />
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October 27<br />
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Edit: I was right to not believe it. November 10thAshleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com0tag:blogger.com,1999:blog-3805384778958515462.post-35293578240080962832010-10-12T19:13:00.000-02:302010-10-12T19:13:48.152-02:30Just DwellThis is a strangely difficult post for me to write, and I'll advise you to skip it if you do not want to hear about my faith. (I wouldn't blame you. Up until a few weeks ago I didn't want to hear about it, either.)<br />
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I was raised Roman Catholic and went to a Roman Catholic school until 1997. (Until 1997, Denominational education was the norm in Newfoundland) Culturally, I would say the closest I would describe myself as is "Newfoundland Irish Catholic...but lapsed." When I have said on your blogs that I am praying for you or your family, I truly am. I am begging something for peace for you, or for for a certain outcome. I'm putting my whole heart into it, I promise.<br />
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But I've thought- for a variety of reasons- that religion wasn't something I could...access. Something I didn't have a right to. Because I am gay, because I have had past life regressions, because I sense things and know things.<br />
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I envied people of faith- especially people of faith who could be good to me with all those things stacked against me.<br />
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And then last weekend I went to a wedding. The secret agents mentioned in a <a href="http://rolladyke-rambles.blogspot.com/2009/09/well-at-least-its-bloggable.html">previous post</a> were taking the plunge and getting married. They are two of the most loving, giving people I know, and their faith is very important to them.<br />
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We arrived in time for the weekly "kinship" group- a small group of people getting together for fellowship and community and prayer. Their pastor is young and energetic, the father of children, a husband- And he knows what an IEP is, intimately. I loved it. I felt myself opening up to him, and to the couple we were staying with, also disabled, and also in ministry, about the "God moments" I've been experiencing or witness to in the last few weeks or months.<br />
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<a href="http://creatingmyownlittlenirvana.blogspot.com/">Sweet Keri and her trip to Russia</a><br />
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<a href="http://hishandshisfeettoday.blogspot.com/">The family at His Hands His Feet and their sweet Selah's lasting legacy</a><br />
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And all of you- my "Blogger Mamas" who are there when I need someone to talk to, who give me perspective with your joys and struggles, who welcome me...<br />
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"God's everywhere." I said many times that night. "And I just don't know what to do with it... I'm not... I don't... I'm not that kind of person."<br />
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"Just dwell." I was told.<br />
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So I am. And it feels good.Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com4tag:blogger.com,1999:blog-3805384778958515462.post-48951761482687397382010-10-09T18:53:00.000-02:302010-10-09T18:53:44.393-02:30Posting about everything but what I want to post aboutI've got a post in the works about how I have a whole new relationship with God and Faith after this week, but I'm finding it really hard to write about, almost like I'm tongue tied. Hang in there, I'll get it out somehow. Also, feel free to skip it, if that's not where you are. It wasn't where I was until this weekend...<br />
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In other news, they still haven't scheduled my surgery yet. I see the doctor on Oct 12, so if you'd like to send prayers or good thoughts towards a quick date and a good outcome, I'd really appreciate that.<br />
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I've also been bitten by the scrapbooking bug, and have a very happy cat now that I'm home from a quick trip to Ottawa for a wedding.<br />
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Also, I'm going to ORLANDO! For those of you I'll see there- It will be so nice to meet you in person!Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com4tag:blogger.com,1999:blog-3805384778958515462.post-35232905656509348392010-09-22T22:54:00.002-02:302010-09-22T22:54:48.525-02:30If you are watching the news, and know where I am...I'm okay! Hurricane Igor hit hard, though! If you are waiting for PayPal from me, it will be a day or so, but I haven't forgotten you, internet is spotty here as is power, but I'm hoping tomorrow will be a calmer day.Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com3tag:blogger.com,1999:blog-3805384778958515462.post-33639659675612683362010-09-16T09:14:00.000-02:302010-09-16T09:14:52.357-02:30Paperwork and conclusions<span class="Apple-style-span" style="font-family: Arial; font-size: small;"><span class="Apple-style-span" style="font-size: 13px;">Dealing with paperwork this morning. Yes indeed, I am still disabled, I would be bothered were I not. Yes indeed I would still like to receive the handy dandy financial support that allows me to keep living in my lovely apartment and keeps Mackers in kitty food. I will only accept these services until I no longer need them; then I will happily pay taxes </span></span><span class="Apple-style-span" style="font-family: Arial; font-size: 13px;">to ensure that other people can also benefit.<br />
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Changing billing addresses- my paratransit bills should not be showing up at Lady's mom's house, that just makes things weird. (Also, I think it costs more in manpower, postage and ink to send someone a bill for 6.75, but what do I know)<br />
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I am not going back to school this fall, I am instead figuring out health and documentation and surgery to reapply for funding in January. Next appointment with the surgeon is Oct. 12. I'm really going to push hard to get things scheduled, if they aren't by then. </span><br />
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</span><br />
<span class="Apple-style-span" style="font-family: Arial; font-size: 13px;">Lady is in school, and thriving, and maybe will post on <a href="http://chock-full-o-immodesty.blogspot.com/?zx=5db1ecfe117073f1">her blog</a> soon to tell you all about it.<br />
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I'm trying out a role as a Girl Guide leader this fall, so good wishes are appreciated. I'm excited about it right now, and we'll see what it brings.</span><br />
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</span><br />
<span class="Apple-style-span" style="font-family: Arial; font-size: 13px;">I'm saving change in a bottle to go to <a href="http://www.watchingthewaters.com/2010/09/orlando-excitement.html">Orlando</a>.<br />
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I'm also standing in a wedding in two weeks and don't have a dress yet- Breathe in and out, it'll happen.</span><br />
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</span><br />
<span class="Apple-style-span" style="font-family: Arial; font-size: 13px;">Think that's most of it for now, except for the fact that they sent a bedbug sniffing dog in here the other day as a "spot check" and I think Spot was more interested in Mackers than he was in anything of the bug persuasion.<br />
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There's nothing terribly exciting in this blog post, but that's the state of things right now.<br />
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Ta for now,<br />
<br />
Ashley</span><br />
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</span></span></div>Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com2tag:blogger.com,1999:blog-3805384778958515462.post-62533534933945836472010-08-10T02:06:00.001-02:302010-08-10T02:12:10.936-02:30Bath Lift: Success!So in<a href="http://rolladyke-rambles.blogspot.com/2010/05/amazing-amazing-amazing-ot-visit.html"> this</a> post, I said that the OT was providing me with many yummy things.<br />
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In the past week, two of these have come in. One is my walker, which looks an awful lot like <a href="http://www.kayeproducts.com/images/w5c_265h.gif">this</a>.<br />
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Walking is painful and energy consuming for me, so I don't choose to do it often. However, I sometimes get the urge. I put on more weight than I was comfortable with when I broke<a href="http://rolladyke-rambles.blogspot.com/2010/03/further-foot-info-especially-for-linda.html"> my foot</a> in December, and this metal monster is helping me get active and hopefully get some of it back off. I still have to be really careful and not push myself, because foot is heading for surgery soon and still has some pretty major wonky structure, but it's something!<br />
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However, today the thing that I was perhaps the most excited about showed up: My bath lift.<br />
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Seriously, where have these things been all my life? They even sell them on Amazon! See?<br />
<br />
<a href="http://www.amazon.com/Minivator-Bath-Bliss-311-Lift/dp/B0028LEFT6?ie=UTF8&tag=therambofroll-20&link_code=btl&camp=213689&creative=392969" target="_blank">Minivator Bath Bliss 311 Lift</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=therambofroll-20&l=btl&camp=213689&creative=392969&o=1&a=B0028LEFT6" style="border: none !important; margin: 0px !important; padding: 0px !important;" width="1" /><br />
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However, mine is not sold on Amazon, and is called the <a href="http://www.zentech-bath-lifts.co.uk/Orca_Bath_Lift.html">Aquatec Orca</a>. Had my first bath in it tonight and it was *bliss*- Sheer bliss.<br />
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Now, to get some new wheels under my butt, once the walker has made it a bit smaller, and I'll be set for more awesomeness.Ashleyhttp://www.blogger.com/profile/06458006179630112049noreply@blogger.com4