The Real Santa Claus- Possible tissue warning

Hi, all- I hope you've had happy and peaceful holidays so far.

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.

***

"I saw the real Santa Claus last night," she said to me, and I smiled patiently, thinking she was teasing.

"Oh yeah?"

"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."

"That's commitment," I remarked. "He must be a really nice man."

"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."

"Was he by last night?"

"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."

I was well hooked on the story by this time and I asked,

"How did she react to our Santa?"

"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."

"That's amazing," I could feel myself smiling. "Did she sit up in his lap?"

"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."

"Did Santa go over to the incubator?"

"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."

"What a beautiful story...what did the little girl do then?"

"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."

"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.

"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."

"It must be a calling."

"It must be. Do you know what else he did last night?" Chip's eyes began to fill as she brought it up.

"There can't be more..."

"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."

"I bet they did!" I could barely get the words out. "I guess you really did see the Real Santa Claus last night."

Taking a Break From Surgery Posts to Answer a Question

This post published about 4 times before I was ready. I'm sorry if its shown up in your reader multiple times

Hi, my name is Ashley and I have food and sensory issues...

Hi, Ashley


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)

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.

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.

• 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
• 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
• 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
• 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

Finally, this is my method for trying a new food. It might take several "offerings" but it works for me.

• Get used to the smell of the food. Maybe even sniff it. 
• Poke it with one finger (you would be surprised how hard this can be!)
• "Play" in it with the proper utensil- How does it feel on the spoon or fork or chopstick?
• 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.

If all of these steps yield positive results I can usually add the food to my "I can eat it" list.

Happy Eating!

So...very tired... but hot pink

Healing 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

Surgery 2010- Day 1- Part 1- Checking it Twice, and Off to Sleep

Lady  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.

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.

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?"

"No no, left! Please don't have the surgeon open the right foot, that's already done!"

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.

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.)

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.

(I'm loving the pseudonyms here!)

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.

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.

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.

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.

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.

I don't remember much of *exactly* what was said that day, but I do remember my hand holding nurse exclaiming,

"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.

"Nice big drink for you before the epidural." He promised. "You've earned it!"

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?"

"No... Left leg."

"That's not right, we''ll try again."  A brief rest, then more pressure.

"Straight down this time." I said- And then I don't remember anything else until after surgery.

Here'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.

Trying to recap surgery-week in my own mind before I do some posts.

100th Post!

I'm off to the hospital *very* shortly, but I couldn't resist showing off yet another of Lady's fabulous cakes. She has a knack for ordering just the right message on the cake that will make me smile.

For anyone who missed it, her last cake is here.

Made 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.

I will definitely be able to Tweet from hospital, and I've added the feed to the side of the blog. (Username @Rolladyke)

See you all on the flip side!

And now...EDITED

To see if a heart can actually rip in two.

Any prayers appreciated.

************************************************************************************

Hearts are resilient, and so are we.

Caregiver burnout- Is there anything more insidious? After all, if you *love* the person, isn't that enough to fill the well?

Not always. But it is enough to make you sit back, take a look, take a breath, ask for help.

We're breathing.

Surgery Housekeeping

Okay. So. Here's the scoop, as I know it.

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.

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...

I almost don't believe it- EDITED

But I appear to have a surgery date.

October 27

Edit: I was right to not believe it. November 10th

Just Dwell

This 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.)

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.

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.

I envied people of faith- especially people of faith who could be good to me with all those things stacked against me.

And then last weekend I went to a wedding. The secret agents mentioned in a previous post 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.

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.

Sweet Keri and her trip to Russia

The family at His Hands His Feet and their sweet Selah's lasting legacy

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...

"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."

"Just dwell." I was told.

So I am. And it feels good.

Posting about everything but what I want to post about

I'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...

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.

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.

Also, I'm going to ORLANDO! For those of you I'll see there- It will be so nice to meet you in person!

If 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.

Paperwork and conclusions

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 to ensure that other people can also benefit.

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)

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. 


Lady is in school, and thriving, and maybe will post on her blog soon to tell you all about it.

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.


I'm saving change in a bottle to go to Orlando.

I'm also standing in a wedding in two weeks and don't have a dress yet- Breathe in and out, it'll happen.


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.

There's nothing terribly exciting in this blog post, but that's the state of things right now.

Ta for now,

Ashley

Bath Lift: Success!

So in this post, I said that the OT was providing me with many yummy things.

In the past week, two of these have come in. One is my walker, which looks an awful lot like this.

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 my foot 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!

However, today the thing that I was perhaps the most excited about showed up: My bath lift.

Seriously, where have these things been all my life? They even sell them on Amazon! See?

Minivator Bath Bliss 311 Lift

However, mine is not sold on Amazon, and is called the Aquatec Orca. Had my first bath in it tonight and it was *bliss*- Sheer bliss.

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.

Things I Never Thought I'd Say

....while browsing a cousin's FB pics.

"There's my [bio] Father, traumatizing some random baby [on Facebook]. No, I don't know whose."

Two Posts in a Day! But I had to share this cake...

In reference to the video in my last post, Lady went out after a dreary start to the day and purchased:

Okay, so it's 5 30 AM and I can't sleep.

I know there are serious things going on for many of you, so consider this little infusion of cute on me:

Family Funnies

So I was in the line at a very famous "mart" today with my Mom. I had borrowed one of their courtesy chairs so I was below Mom as we waited.

Suddenly, in a tone of horror, she demanded, "Is that *something in your hair*?"

"Yes, Mom." I said, very quietly. "Grey."

I do not have, but I do have

I do not have a job.

I do not have my health, right now.

But I do have love. I'm rich in love. Love from Lady, love from Mackers, love from my blogger folks...

And that's what really matters.

Job Interviews and Audiobooks

(Full disclosure: I have joined the Amazon Associate's Program, but I promise to only link to books I have read, and have enjoyed, when I would have already posted about them. If anyone has a problem with that, drop me a line at ashley writer at gmail dot com, and I'll be happy to no longer participate. You all come first!)

So I'm still waiting on surgery.... Which led to the rash decision to tempt fate and apply for a 6 month internship with The Learning Disabilities Association of Newfoundland and Labrador.

I'm not intending to *not* have surgery, I'll push it to January if I get the job, if not I'll keep on waiting, waiting waiting.

I have experience in all the areas listed in the job ad, but I felt like I was rambly in the interview. One of the criteria is that you had to be a person with a disability to recieve the grant funding, and while I do, I do not have a learning disability, so if someone else with the same credentials, or who maybe wasn't so rambly who also has a learning disability should be hired instead of me.

I'm hoping.

Am also having a hard time reading these days- the clingfilm burn out seems to have put over my mind is still there. But I'm digging Shut Up, I'm Talking: And Other Diplomacy Lessons I Learned in the Israeli Government--A Memoir, so much that it has me giggling out loud, and also listening to Angela's Ashes: A Memoir, and after that, I have Tis Unabridged: A Memoir, ready to go.

That's about all I have here at Chez Rolladyke.

Until next time!

Love

Me

Not the 100th post, and not 100 things.

So I was hoping that my 100th post would be my surgery date, because I'm a little bit nerdy like that, but I'm still waiting and my blogging fingers are itchy. Also, I didn't realise that Blogger counts "drafts" among your number of posts, so after some cleaning up, this is actually post 84.

Either way, I got the idea to do a 100 Things post...

So, without further ado, for my I thought it wa my 100th post, 100 things about me that you may or may not know already.

1. I was raised by my bioMom, but she did have an offer from one of her older brothers to take me and raise me as his own child. I would have been raised in a 2 parent household as a devout Roman Catholic. I sometimes wonder what that would have been like.

2. I did go to a Catholic school from grades K-7 because all schools in Newfoundland were denominational until 1999. I don't necessarily think this would have been a bad trend to continue.

3. I was always told about my disablity in age-appropriate language from the time I was 2. I think this has had a huge impact on me.

4. I believe in God, and energy, and reciprocity, and light, and love, and things unseen. I don't know what that makes me.

5. I have seen demons.

6. I love to sing, but I don't think I'm any good.

7. I love to write fiction, but I don't think I'm any good at that either.

8. I may not be able to finish university, now or ever.

9. I'm starting to think that's okay. Not necessarily desirable, but not world ending either.

10. I met the love of my life in a comic book shop

11. I drink tea. Good tea.

12. The person who was most surprised that I was a lesbian was probably me.

13. After 13 years, I still think the surgical scars from my most complex operation are really ugly

14 I don't like the colour purple. Never did.

15. I tend to catch on to trends late, and stop liking things like TV shows if they become too popular.

16. I had a lot of pets when I was little, but my bio father always gave them away.

17. It pleases me to no small end that Mackers is *my* cat and that no one will be giving him away.

18. The pet thing is only one of the many reasons I am still violently angry at my bio dad.

19. I completely switched sides in the recent divorce when I found out more information. It makes me feel like a turncoat, deep down.

20. My sister is my full biological sibling, but we don't get along.

21. I'm really excited to see who she'll become when she stops trying to fit into a mold.

22. My best friend (aside from the incredible Lady) lives in GA. And always has. I met her online.

23. My grandmother helps me pay bills.

24. I *hate* being on government funding

25 I don't know what to be when I grow up

26. I think this is because I missed out on a lot of kid experiences

27. I really really want to be able to buy toys for younger kids, and play with them myself.

28. It irks me that if one of you posted this about your radlings I'd tell you to go ahead and buy the toys!

29. I do not have any problem going to Build a Bear, however

30. I am entirely too pleased to have inherited the family Wii. My "share" of the divorce, I guess.

31. I'm saving change in an empty two litre Coke bottle

32. I'm actually trying to cut down on my Coke consumption

33. Some weeks it works, some weeks it doesn't. I try not to let it make me crazy.

34. I'm having more trouble coming up with things than I thought I would.

...So I'm going to toss this open for comments, questions, and rotten fruit. What else do inquiring minds want to know?

Surgical Holding Pattern

Waiting. Im not very good at it, but it's what I've been doing since my last post.

Although the fabulous Dr Rock put me on the "kind of urgent" list for the fixing of the ankle which now has decided to go even *more* sideways, it hasn't yet come to pass, which means I can not search for a summer job, or even buy shoes.

How am I passing the time? Plastic canvas crafts, playing with the fantastic Mr. Mackers, blog reading...

Keep hanging in there, folks, you're fabulous.

XOXO

Ashley

Blogging about Blogging

First of all- I'm creeping up there on 100 posts! I'll have to think about something fun to do for post 100. (This is post 98)

Second of all, I set some gears in motion yesterday for surgery on my foot, mentioned here, here, here, and here in chronological order. Looks like it will be soon, but not a lot has panned out on the job front right now, and my surgeon is great, so I have to believe that this is the right time.

*Given* that surgery will be soon (this is my 7th or 8th, so there's not so much a fear of the unknown as the fear of the "Oh, not this again...") and given that my last serious surgery was in 2000 (last surgery of any sort was in 2006) I have a tool at my disposal this time that I didn't before: Blogging!!

Is anyone interested in me blogging through this? Is anyone *opposed* to me blogging through this? No gory pictures, I promise. In fact, no pictures at all of me in hospital, I don't want them, and neither do you.

I never intended to become a "medblogger" per se, but writing is amazing therapy... It's not worth losing my readers, though!

On Children's Programming

Disclaimer: I am not a Mom. Unless we count Mackers.

But honestly, the downturn in children's TV since *I* was small kind of freaks me out. When I was a kid, you could pretty well turn on Family Channel with no worries about what you might see. You might see

Katie and Orbie

Maya the Bee

or Madeline, or an assortment of classic Disney.

On Friday nights there was the incredible lineup of TGIF, which when I was a kid, consisted of Boy Meets World, Family Matters, Full House, Step By Step, and Sabrina the Teenage Witch.

I remember these shows tackling some tough issues: Fitting in, dating, step-families, even child abuse and eating disorders (Thanks, Full House!)

I do not remember any of these characters saying *anything* of the likes of the snarky, irritable, constantly hormonal "tweens" such as Hannah Bratana (I think Corey used that term first?) or Zach and Cody or the blended famly on Life With Derek....

I couldn't sleep last night, so Lady and I were flicking through channels. Family's broadcast day currently opens with my classic favourite, Katie and Orbie. Before it, there was one of the "tween" shows listed above. As we listened to the dialogue, I turned to Lady and said,

"This is why all the kids sound like this!!"

Now, I know that's not the *only* reason, but it made me think.

Amazing, Amazing, Amazing OT Visit!!

I have the best OT in the entire world. Personable, Irish, incredibly sensible.

I'm getting a bath lift on trial, so I can actually *soak in the bathtub* again, people... This may be slightly more exciting than Tiruba Tuba's towel bar...! Maybe!

I'm getting the kind of walker I had as a little kid, seen here. (Yeah, clunky, but the most stable thing I ever walked in, and I'm going to start walking for *me* again, just like my friend Corey!)

And, new chair, because whoever measured and fit my first one was clearly asleep at the wheel, and walking is going to become my thing I do for me- It's not practical for me to walk everywhere.

But aside from all the snazzy stuff that will be coming in to my home, and probaly even more important... I felt listened to and appreciated and supported. That's what all of us want from our special needs professionals!

Random Funnies

So I'm feeling much better after that second ER run, currently relaxing in front of the TV with Mackers and America's Funniest Home Videos, which got me thinking about kid logic, and some of the funny things little folks do. I did my own share of funny things, but there's one incident in particular that I can recall with absolute clarity. I even remember the "kid logic" behind this one, and I thought I would blog it for posterity.

I was perhaps seven, and had a porcelain tea set. My Mom was away from home this particular evening so I was in the care of a babysitter. The babysitter was unfamiliar, so I was content to stay in my room with my tea set and books and my dolls.

I called out to the babysitter to ask if I could have some water for my pretend tea, and was told no, water would make a mess because I could spill it. This made sense to Little Me. Water, after all, was wet, so I looked around my room for an alternative.

Suddenly, I had it. Baby Powder! It was sitting right on top of my dresser, I could pour it, and it wasn't wet!

Turns out, it *was* still messy... Luckily, Mom was too busy laughing to be upset, when she did come home.

No deep thoughts today, folks.


Keep hanging in there

Ashley

On homemade magic bags and shots

First of all this is my magic bag, hand made by my fabulous other half.

Isn't it pretty?

Second of all, this pain won't quit! Another run to ER about 24 hours ago, this one ending with a firm suggestion to call my neurosurgeon (Like I hadn't thought of that already!) It's much worse than last year, and I was sobbing between double doses of P*er*co*cet. I don't like being on meds that strong, Sam I am. I like it even worse when they don't work.

So anyway, chat with the doc, again, have my neurological function checked, again, and this time get a scrip for muscle relaxants on top of the Perc and a shot of m*o*r*p*h*i*n*e.

That seemed to break the cycle, and after coming home and sleeping for 8 hours, topping up with another perc as directed, and sleeping some more, I felt well enough to get up and get a shower.

So here's to meds that work... at least a little better.

I am so glad I don't have to worry about the cost of my health care!

PS: Honest nurses are great. When Paulette the RN came back with my shot, she said, "Okay, I have your medication here. It's a needle, it's morph, and it stings like a bugger. Once it kicks in, it's good. You won't mind."

She was right. On all counts.

A Day in the Life

Corey, over at Watching the Waters, asked what a day in the life was like.... I keep waiting to have an interesting day :P

Am in a lot of pain right now from a bulging disc at S 5 L1 which is known as sciatica. I'm sure all of you probably knew that anyway. Sciatica plus Cerebral Palsy is no fun. I've been dealing with it off and on since Fall 2008, and when it flares it flares *badly*. All of this is just meant to say that I took a spin to the local ER the other day because I had outgrown my pain control regimen and am now on something different that has me a little loopy.

So there's not much on the go in the life here, so I thought I would do a day in the life of Mackers instead.

Wake up, jump on Dad, (Lady) make all kinds of noise so Dad knows I'm hungry. I bite Dad's shins and follow him upstairs so he can fill my bowl with Crunchy food for cats and make sure my fountain for cats is full. Cats drink filtered water in this house. Then I eat and drink, and get bored, so I check my window for birds and bicycles before making more noise so my people will get up.

Mom might need a shower, and I have to supervise if she needs one. I go in the bathroom and meow at the tub and check it all out. I stay on her shower chair until the water starts- Then it is too wet for cats. Then I chase the people upstairs for the day. Dad might give Mom her medicine- Mom has a big ow right now- and Mom might lie down. I might lie down with Mom, but I also might check my window a lot and sleep in my cardboard box. I do not *need* to sleep in a cardboard box, I just like to pretend.

If Mom gets up to go in the bathroom I need to follow her, and if Dad goes downstairs I need to follow him because he might be doing something for cats.

It's very hard to be me, you know. No wonder I need so many naps.

Revisiting an Oldie but a Goodie

So some of you may remember this post, which was a brief foray into my other passion, writing. I love to write fiction, and some tell me that I do it well, but the important thing is I love it, so I would probably do it forever for free.

I came across this article today, which some of you may enjoy reading, which revisits my point. It's very important for kids- especially "different" kids- to find mirrors of themselves in literature, but it's also *hard* for our different kids.

Just food for thought. I'm doing fine, kitty is big and handome and that's really all I have to say. Big hugs.

Ashley

Okay...so...Corey said....

That I don't blog enough. So blog I will...

Hair – growing

Your Mother – young

Your Father – absent

Fav Food – french fries, and it shows...Oh well

Dream Last Night – Don't remember

Fav Drink – Organic Irish breakfast tea

What room are you in? – friend's living room

Hobby – blog

Fear – abandonment

Where were you last night? – home

Something that you aren’t – graceful

Muffins – Oatmeal

Wish List Item – job

Where you grew up – St. John's NL

What you are wearing –sweats

Your Pet – one cat, the infamous Mackers

Friends – as family

Something you’re not wearing – shoes

Fav Store – Walmart. Seriously. For the student on a dime?

Fav Color – pink

Last time you laughed – today

Your Best Friend – Tayley

Best Place you go over and over – Blockbuster Video

Person who you email regularly – blogger folks

Fav Place to Eat – Ches' Fish and Chips- Newfoundland exclusive :)

Now I tag…

Tuba

Tayley

Linda

And anyone else who wants to play


As for my future blogging- Tell me.

What do inquiring minds want to know?

Further foot info, especially for Linda B. but also for anyone else who might be interested.

I fixed my blog colours so that links will show up in green now. There are a few links on the last post to explain some of the medical-ese, but visual aids can be fun too!

Basically, the triple fusion I talked about would salvage my left foot. The doctor would go in and place screws and plates in the three major joints. Sounds drastic, and it is, but I had one done 10 years ago on the right side and its holding up great.

Why does my foot need to be salvaged? Well, the CP has twisted the bones and muscles in my foot (and elsewhere) all out of shape, so my foot, in repose, looks a little something like this :)

It looks painful, and it kind of is, especially when walking and especially since the break

In other, foot related news,

I realised I didn't update anyone on the specialist visit I alluded to in this post.

Thank all things holy, I saw someone competent. I had a triple ankle fusion on the right foot, not the one I broke, back in early 2000. I was on the cusp between the recommended procedures, one for adults and one for children, so my pedes surgeon asked an adult surgeon to assist him. That surgeon, lets call him Dr. Rock, happened to be the one I saw in February.

He came in and said, "Your name looks familiar." I told him he had done my first fusion and he grinned, asking if I wanted a matching set. I told him I wasn't completely closed to the idea, but that no one seemed to be able to make up their mind whether or not I had broken the left foot, and although I could walk, it was extremely painful.

He furrowed his brow and got Lady to take off my shoe and sock. Looking only, he said. "What do you think happened to your foot?"

"Avulsion fracture." I said readily, having done some research since the brush off in December.

"So it hurts here?" He asked, putting out one finger and finding the *exact* place where pain was at its worst.

"Exactly!" I said, relieved.

"Let me look at your X-rays," he said. "Avulsion fractures are common in CP."

(Keeping in mind that the X-rays he's referring to are the same ones everyone else has been looking at)

He came back in shaking his head in disbelief. "Yes," he said. "That's broken. It's on the side, so having it out of cast hasn't been detrimental to its healing... just painful for you. I'm so sorry."

I assured him that I didn't blame *him*, not in the least. We discussed casting it again, but decided against it for now. We will be looking to do a fusion in late May, early June so that I can heal properly and this won't happen again.

Frick, frick , frick... Breathing in and out, because it seems to be the only thing I can do right, lately.

So okay. Big brain dump in the post the other day, and I really, really bigtime appreciate all the loves. But right now I'm kinda mad and need a safe place to jump up and down (figuratively, I mean, having never actually jumped up and down in my 24 years on the planet.)

I work with a fantastic, yet underfunded, organization. I do presentations for them. I occasionally get a stipend for doing said presentations. It's brilliant.

A week or so ago I went to meet with a second organization about doing a presentation tacked on to, or perhaps in to, their Paralympic events. So I was given two evening slots, told that they'd do some of the promotion for me, and that I was to do some on my own.

Now, I *did* do some on my own, but I've also had the world coming down about my freaking ears. So I thought "Okay, I'll just go with organization #2s kids, it'll be grand, and get my foot in the door with them."

Not *once* did someone from Org. 2. check in with me to see how things were going or to tell me that registration for my first talk (tonight) was going *infintessimally* slow. (I don't even know if that's spelled right, but it looks...kind of right.

As they were handling, on their end, registration for this event, I feel that someone could have at least dropped me an e-mail, though I admit that I could have done the same.

Just now, I called to be all responsible and get a headcount.

I've got 1 person. 1. Maybe.

I acknowledge that I didn't have a whole lot of success in promoting this, but I also got no help or contact. And Org 2 was the one I was hoping to work for full time in the very near future!

There's got to be a break in these clouds somewhere. There's just got to be....

I'm having a hard time being nice to myself right now

Long talk with my (favourite) professor yesterday, and we decided that a "strategic withdrawl" from this semester, and from academia in general, is a good thing right now. I just can't do it. I'm smart (I swear) but my brain is covered in some kind of clingfilm. I just... I can't absorb academics right now.

I bombed at Public Speaking class- and that's, essentially, what I *do* for a living, and what I *want* to do for a living, so there went *that* class before I turned myself altogether, and then this month-long stint of hiding in the house, hiding from everything, and I just can't come back from that right now- I could promise to, but I wouldn't be able to follow through.

So now I'm sitting back and looking at my options- I've applied for some jobs, I'm using my networks. I might even be able to work in disability advocacy, which is where my heart is right now. I won't lose the apartment, that's secure, and I just... I need some time to find myself. I haven't told my Mom, or anyone, yet really, except Lady.

That's so hard. I wish I could explain to you how smart I used to be. When I was little, school was a *breeze*- I was literally smarter, by 4 or 5 grade levels than everyone else . Whatever was going on at home, abuse, the fighting, the locked doors and the days when Mom would come in and take me in her arms, holding me tighter than I needed to hold her, ever, and tell me that *everyone* was having a day off from school today and we'd curl up in the big bed because my bio dad had hurt her worse that day than she could hide with make up and a smile. All of that didn't matter- once I was in my desk, I was in *the zone* and I was top of the class, every year, for 13 years.

First two years of university were easy too, but I was *so* young. I was 18 years old with no real idea of who I was in the world, or what I wanted to be.

And now, now I'm just going through the motions and the anxiety is crushing and those last 10 courses seem like a long, tortuous road that I'm never going to find the end of, and right now I just can't.

But everyone else expects me to be *so* smart.

And it's just not enough anymore.

Snazzy things

March is still tough, but I think it's tough on everyone!

Thanks to the incomparable Lady for my very girlie blog makeover- I *love* pink!

Mackers has his own album on Facebook now so I'm hoping the link works here!

March is kicking my butt

But it's only so long, right?

What a difference a year makes- Or, it's my birthday and I'll cry if I want to

It's my birthday, and I am 24. This time last year, I blogged here about my Mom and my Nan and some of the odds that were stacked against me as a tiny kid who, thankfully, did not become a RADish kid, but could have.

Of course, to find this post, I scrolled back through my blog- WHAT a year it's been, from vacations and build a bears to failures and divorces and a new apartment. Sobering.

But this wasn't meant to be a downer post, I'm just... thinking. But the past year has brought joys too- Lady and I are living together. Mackers is here with us, and wanted, and growing like *crazy* (Big snip next week, don't tell him) There's just something about birthdays, I guess, that makes you look behind you and ahead of you.

As promised, some Mackers pictures

Big as he is, we still spend a lot of time like this


















This is Mack now. He is much bigger, and believes this box to be his. The dropcloth from painting shelves? Also his.

Academic Expungement and Mothers Out Law

I know I've been quiet on the blog front lately. Mea culpa.

Have started another term at school, occasionally to my crushing dread, but I'm working on it. Only two courses with my favourite professor, who is retiring in April, and that's it.

Was speaking with the advisor for students with disabilities today and she noted that my transcript has a lot of.....blips (read: craters, with zeros) and that she thought I would be able to get most of them wiped, given the events of the last couple of years. I don't know if I can do that. I don't know if I am worth that. I'll work on it.

Unrelated, but related to the title, Lady's Mom mentioned wanting to drop by this weekend. Both of us had the same, resounding "EWWWWWWWWWWWWWWWWWWW" reaction. My mom? When my Mom drops by she brings KFC and chats for a bit. Lady's Mom will spend the visit prowling through the house critisizing how we've got things laid out and whether we have healthy groceries in the cabinets. Not interested, thank you very much.

Well, that's it for now.

A.

PS: I will provide new Mackers pictures, and soon :) He's getting big, getting his big boy teeth now, too!

More Newfoundlanders step forward for Haiti

With everyone's mind still on the crisis in Haiti, I really hope that my bloggy-friends will pass this link around. A local artist has done a painting called "Kisses for Haiti" and is donating all proceeds from her ebay action to Doctors Without Borders/MSF for Haiti Relief.

I don't expect any of you to *buy* the painting just because of what it's for, I know money is tight, but it might catch someone's fancy- one of your other readers, someone with a connection to Newfoundland, anything.

For those of you who might not get the reference, the candy in the picture is called a "Purity Kiss"- It's a Newfoundland specific candy that tastes like molasses or other flavours.

News story

Ebay Link

I am so proud to live here

The crisis in Haiti is on most people's minds here in the Blogosphere. I am proud to call the Mama of quite a few Hatian Sensations, the fabulous Corey Waters, among my virtual friends.

I live in a small Canadian province, one that had a reputation for *many* years as being a "Have-Not" province.

Well, I'm proud to be living in this province today! Our premier announced today that our province was donating one million dollars to the Haiti relief effort!

Thank you so much for the support!

Things are looking brighter now and I have no doubt that it's due in part to the positive thoughts I got, and am getting, from all of you.

Lady posted here *warning: Some frustrated-venty language* about something I'm sure you're all familiar with: Caregiver burnout. Some other stuff in her blog may not be to your taste (or maybe it is, I've no idea) but I know she appreciates all of you and would love any recharging tips you could sling her way from dealing with your own tough kiddos.

Gratefully

Ashley

Prayers for Peace and Strength please

All I can say right now.

Lovingly

Ashley