Christmas Break

Christmas Break

We've recently moved to a nearby town and have been too busy for any fun. Grace hasn't had the opportunity to spend any time with friends. Yesterday we thought she had an appointment with her muscle doctors. We drove the hour and a half to discover that the doctor's office had changed the appointment and we didn't get the news. Could have had a fit, raise blood pressure and ruined everyone's day, also could have waited for them to work her into their day, but that could have meant a 5-6 hour wait . Instead we decided to update the doctor's info to be sure they have the new address and phone number and took off site seeing. 

Zach n Grace 

We ended up in Old Sacramento. Kind of an old gold rush town, it's a huge tourist trap with plenty of unique shops to spend Christmas money. It was much better than a long doctor's visit. Grace had her best friend along and it gave them time to catch up with each other.

Happy top 5

Well, as promised the top five ways to make a wheelchair driving Grace happy.

1. Don’t be afraid to hug her, Grace has decided there are two type of huggers in the world. Those that are afraid she might break and give hugs she can’t feel, or make the attempt to hug her but actually end up with their arms around her chair. And secondly, the big huggers. Those are the people that actually give a good old bear hug, these hugs last at least 30 seconds and make her feel that if they could, the hugger would pick her up and spin her around. She appreciates most hugs, but the old bear hugs are the best. She’s frail but she won’t break.

2. Sit by her when you talk with her. It’s always nice when Grace meets someone that just has a seat across from her and starts talking. Can’t be much to a conversation that you carry on with someone’s crotch, and taking a seat next to her is nice too, but her neck and back are fused so she seems extremely rude by not turning to make eye contact.

3. Talk to her as if she’s her age. She may be petite, but by all means she’s able to have a intelligent conversation as well as any other seventeen year old ( I know a lot of people don’t think any 17 yr old can, but just sit with one sometime, they’re quite fun).

4. Don’t exactly know how to explain this without just saying it. Hit her once in a while! You know most teens give each other a smack on the arm now and then. Grace is like any other kid, she needs that type of interaction. Anyone that actually knows her probably wants to belt her one now and then anyway. She’s witty and can get over on the best of us.
5. Probably the biggest compliment you can pay Grace is to be close enough to her to actually forget her medical conditions, when someone says they forget she’s in a wheelchair it makes her day. It’s hard sometimes to see past a chair, they’re still unusual for most people to see, and they sometimes are big and cumbersome. That chair is such a blessing, without it she would be bedridden, have absolutely no independence, but it’s not what defines Grace. She is so much more because of all she’s been through, yet those experiences aren’t all she is. She really is just like the rest of us. She’s loving, emotional, grumpy, and probably one of the funniest people I’ve ever met.

If you don’t know Grace you’re missing out. But she’s not the only kid that’s been through too much in their life. Don’t be afraid to get to know someone that is different. Doesn’t matter what makes them different, there’s a real person in there, a person that needs to be loved just like you do. Sometimes a smile and a bear hug can mean way more than you know.

Graces's first semester of her senior year is finished!! We moved this last weekend so she managed to get her work early and is done. She's signed up to take a class at the community college next semester. She is so excited to start there. Just a few more months until she graduates. Am so proud of her.

Senior

Senior pictures seem to be so much more relaxed than they were in the dark ages of my youth. No studio with a fake tree these days. We went to a nearby little town that has an old covered bridge for Grace's pics. Here are a few of our favorites.

How to Tick Her Off

Have you ever been around someone with a special ability and been uncomfortable? Not quite sure of how to act? I think we all have. These are Grace’s top 5 things that people do to tick her off in the area of being in a wheelchair. I’m not saying that everyone in her position feels this way, but some may apply to others.






1.Don’t speak directly to the person with the disability……….don’t know how often this happens to Grace. For some reason when people see a child in a wheelchair they automatically think they have both physical and mental disabilities. She has been completely ignored by waiters, sales people, teachers ( that don’t know her yet) even her own doctors and some family members. Of all people she is not one to ignore. She has been yakking for most of her life. She may not have been able to crawl or walk on time, but she could talk way too early.



2.Stop directly in front of them….. Now I know this can’t always be helped, in a crowd especially, Grace usually doesn’t follow too closely, well in part because the view of most hind ends isn’t all that attractive. She also is in a power chair not a car with breaks. If you stop quickly she’s going to goose you! Her chair doesn’t have breaks it just loses power when she lets off the joystick.



3. Talk about her as if she can’t hear you……. Now of course this goes for people with any ability. But for some reason ( see #1 above) hearing is also an ability people don’t seem to think Grace has. Seriously, if she’s close she can hear you. She knows she’s in a wheelchair so you announcing “hey look that girl’s in a wheelchair!!” isn’t usually news to her. She went to a concert last summer and someone even asked her friend that was with her to tell Grace to move out of their way………all I can say is I’m sure Grace’s chair didn’t stop quickly if that girl walked in front of her .



4. Assume they’re sweet. Now I would think Grace looks sweet, but she’s not always what people expect. She’s not rude, but she has a very quick wit and will surprise you. Thankfully she doesn’t say everything she thinks, but honestly, people in chairs are just like everyone else. Some are sweet, mean, funny etc..



5. Don’t forget them. This year Grace is in a leadership class. They plan outings, school dances etc. Now I know most people don’t deal with special abilities, but when one is in your group, remember they’re there. Someone in the class found a very nice venue for this year’s prom. Only thing was there was no way Grace would be able to attend. There were no ramps, or elevators. They were even considering having the dinner on a second floor that had no access. It wasn’t intentional and it was a really cool place, but they forgot that everyone can’t use stairs. She knows the entire world doesn’t have to change for her abilities, but it’s nice when someone remembers.



Ok I’m not going to be negative forever: stay tuned for the 5 things that make Grace the happiest when someone deals with her condition.

A Mom's Pain

Pain




Just read a blog from a frustrated, end of her rope mom who has found out her daughter has to endure back surgery to correct scoliosis. This mom is feeling the pain of loving someone in need and probably the greater pain of helplessness.

Made me think back a few years to the days of feeling that same pain. Grace has been through too much in her 17 years. Those that know her well, would tell you she has an incredible spirit and always manages to persevere.

As her mom I’m not sure which events in her life have been the toughest. She was only five the first time she had a stay in an intensive care unit. She had a simple surgery and couldn’t breathe on her own after. She spent about 4 weeks there. Her worst stay was at the age of 9. She had pneumonia and due to circumstances that are too lengthy to write in this post ended flying to another hospital, had a code blue, needed a tracheotomy, and finally returned home after about 11 weeks. She had a couple short over night stays that were uneventful ( if a stay can be considered that). Her last stay was scheduled, something that almost made it harder to endure. She was about 12, and was having the same back surgery that the woman from the other blog’s daughter will have. It was, for Grace, a short stay about 5 days. I think that long walk to the surgery room was the hardest walk I’d endured. As her parents we knew the risks of a long surgery, those risks are compounded by her muscle condition. Grace has never been a fool, she also knew the risks. She had even given me instructions as to what to do with her doll that she cherished since her first birthday. Even though she was 12 and the doll seemed to be tossed aside, it was her treasure and wanted it to go to her best friend if she didn’t need it again.

Sitting in the waiting area through surgery was unbearable, there were people coming and going, laughing and talking. We just sat there in a daze. Close to the same daze we’d been in at other times in our lives with Grace. But in those times there always seemed to be decisions to make, questions to ask, people to call. This was different. We knew it would be a long surgery, we were told to expect 8 hours, it turned into 10. I must say that when the attendant said that there was a call for us, it turned out to be was a relief, something to look forward to. A nurse from the surgery room was calling with updates. Grace was doing fine, things were going well. We got calls every few hours and I could only continue to pray and of course think back to Grace’s question to the doctor when he said it would be 8 hours. She wanted to know what he would do if her had to use the bathroom.

Of course Grace’s surgery went perfectly, it was a hard recovery because it’s such a huge procedure. I can only say to anyone feeling that pain of frustration and helplessness that it was worth it. Knowing that if I had to fix my child, there would be no hope. I have a strong faith and feel that Grace was never in my hands anyway. She has not always had the best doctors, but in her greatest times of need she has had the best. I thank God daily for her and try to be the best parent I can. I fail daily, but manage to keep going. I feel for this other mom. The pain is hard. I’ve cried writing this just remembering. Just remember, it’s been worth it.

Regular ol' Kid

Regular Ol’ Kid




As I posted before Grace changed schools this year. I thought it was a bit crazy, this being her senior year. I must say what a great change it has been for her. Around the time she switched school she also lost her best friend from the last few years. I’m sure those of us that are a bit older can remember how crazy teen relationships can be. She was able to reconnect with an old friend at this new school and even though she only attends school one day a week, she has made plenty of new friends.

Yesterday was a powder puff football game and dance after. Since she is in the leadership class she is involved with these events and is required to attend.

She took her friend Zach with her for moral support. It wasn’t really needed, since she was welcomed by quite a few kids at school. But it was a good opportunity for him to meet her friends.

Anyway the whole point of my long windedness ( is that a real word?) is to say how nice it was for Grace to just be a regular teen. She was invited to a movie after the school events and just had an all around good evening. Being with Zach always lifts her spirits, but I think feeling that her new friends liked him and that they were included in a non school outing also made her day. It’s always tough to be the new kid, and I wish it weren’t a fact, but being the new and only kid at the school in a wheelchair makes it even scarier. It’s nice for her to feel part of a group and I must say as a mom that sees everything. It’s nice to see her just be a regular ol’ kid

Too Skinny?

Too Skinny?

Over the years Grace has worked hard to gain weight. Although that sounds heavenly, I admit I think it's harder for her to gain than it is for me to loose. 

Looking back at photos I can see why doctors always commented about her weight, there was even talk of putting a feeding tube in her at one point. But, always being a smart cookie she started counting calories when she was nine and started stuffing 1600 calories in her petite little frame. She had to be the only kid encouraged to eat McDonalds food. A couple of years ago the nutritionist that she was seeing took a look at her and then at her chart and decided that although on paper she sounds much too thin, in person she's just thin and not dangerously skinny. She was told that she could always gain some more weight, just not lose any.

Last week Grace went to the kindergarten class to work and was told she was skinny by a cute little guy. He was very interested in her, as was most of the class. It's a wildly fun class of twice as many boys as girls. Always a good mixture. After telling all about her unique self and spending a few hours in the class it was time for the little ones to go home. This same little guy told Grace that skinny people make him nervous! When she asked him why, he told her that being skinny is just weird. Then he smiled at her and met his mom at the door. 

She is going to just love this class, they're spunky just like her skinny self.  

From Frightened Freshmen to Sassy Seniors

Frightened Freshman to Sassy Seniors

It's amazing to me just how much Grace has changed through out her high school career. I remember how scared she was that first day of freshman year. It didn't take her long until she felt like she owned the campus. She almost felt like a freshman again this year, changing schools is always difficult, but thankfully she has much more confedence that she did four years ago. She finally made it to her first onsite class last Monday, she's in the leadership class and loves it.



Seniors

She only knew one student when she started this new school, but it's a young lady that she has known since grammer school. She and Taylor were unstoppable as freshman and now that they're together again at the same school it's nice to see how much they've matured. They've both been through trials the last few years, but seem to be growing into young women that have the drive to get where they want in life.



Cute Freshman



Whats with the Hip thing?

It's been a while since I've gotten to drag my soapbox out and complain, so I'm giving you fair warning. And if you're a hip gal I apologize.

I have come to notice something that I just don't understand. Whenever I see a picture of a group of  teen girls ok ok, even of  grown women, whoever is on the outside end of the picture almost always has her hand perched on their hip. Doesn't matter what the photo is in reference to, prom, first day of school, football games, first car, oh heck even first hangover! There is always some girl with her hip sticking out and her paw plopped right on top.
How bout changing it up? Maybe hide your arm behind your back? Maybe put a guy on the end of the group and have him do the hip pose. That would get a few people wondering what's going on.
So, I know this isn't much to complain about and whenever I see a photo without the hand to hip shot I kind of wonder if the poor gal didn't get the memo that requires the new pose. To be honest it's probably just that there's NO hiding my hips and would be appalled to even consider drawing more attention to them. So, next time you're on facebook, or get a chance to browse through a high school yearbook, look closer and you'll know just what I mean.
Have a great day as i'm off to drag my soapbox to it's dusty corner :)

BIG CHANGES

BIG CHANGES

This is Grace's senior year seems that it went by quickly. She has made some big changes this year. Instead of the traditional high school she had been attending, she asked if she could change schools. She is now going to go to a local charter school.

She will take a couple of online classes, take a couple of courses independently and go to the campus a couple afternoons a week. This will help when she's having pain issues and if my health takes a dive. Last year was a tough one for her with school attendance.

She already has a good friend that attends this new school, who has taken her around to meet some others, Grace is so excited to start fresh, she will of course miss some old friends, some she's had since preschool. Those that love her will always be there for he and they'll still see each other. She will have a much lighter schedule but still have the opportunity to do all the fun things, such as prom and senior trip.

Will see how things progress for her, she doesn't get to start school until we have a couple more meetings to discuss her unique abilities.

More to come! 

Hey Everyone
I had no idea it's been months since I've posted anything. I had been ill, basically did nothing for 4 months. Grace finished her junior year. Since I was ill she didn't make it to school much and was pretty much teaching herself. It lowered her grades a bit but not too bad. I am waiting to see if I will need surgery. Will know more in September. School starts again in about 4 weeks. I'm thinking that's just wayyyyyy too soon.
I will try to blog more often, the biggest problem has to do with living too far in the country to have anything more than a dial up connection. A few months ago google updated their blogging site and I can no longer blog from home. I'll have to take the laptop other places to catch up. Thanks for still being there. Updates coming soon.

Sick and Detention

It's been a while since I've posted. I have been sick again. But seeing as I'm up to the computer I must be feeling better. At least well enough to be grumpy. Which leads me to the "detention" section of this post.
Grace and I haven't been able to attend classes with me being ill, so it's kind of crazy trying to keep up from home. Our plan is to try a couple of 1/2 days this week. Haven't been to school, but thanks to facebook we can keep up on some of the scuttlebutt from school. Today I ran across someone's complaint about serving detention. This kid was complaining that it was boring, and they did nothing but sit and text. I'm so sorry, where in the rules of how to keep kids entertained does it say detention is supposed to be anything but boring? And they got to use their phones? That's crazy! Detention is supposed to be in place to maybe teach a little lesson to not do whatever you did to get a detention in the first place. That's like saying  I went to jail and there was nothing to do but sit and wait till my time was up. Guess they expect a movie or stand up comic? But in this person's defense they did say that they didn't even do anything to deserve the detention. Bet that kid is the first to use that excuse.
I warned ya I'm grumpy!!!

pretty, wheelchair and oreos

So, I'm feeling much better, almost back to old myself. We tried school this week, only made 3 1/2 days because of wheelchair repairs and a funeral. But after 3 weeks away that's a start. Surprisingly Grace isn't too far behind. Has some tests to make up, some reading to finish and that's about it. She didn't miss any huge projects.
Not sure if you remember, but she works in a kindergarten class, and those little ones probably gave up on her ever returning. On the day she went back we had the appointment for the wheelchair repair, so instead of driving in the opposite direction to attend 1/2 a class at the high school, she just spent the extra time in the k class. As we got to the school the kindergartners were lining up to return to their class after recess. They were sssssooooooo excited to see Grace !! They call her Miss Gracie, and I think they were all yelling "Miss Gracie's back!!!"  She worked with them in their writing journals and several wrote about her. I think her favorite was written by a little guy who wrote. " I love Miss Gracie, because she's pretty, rides a wheelchair and loves oreos."  Nothing like a little kindergarten love to make you glad you're back at it again !!

When Moms Sick

Home Again!!!



partners in crime



Poor Grace, She finally seemed to be caught up and getting back to attending school on a better basis when Mom got sick. I have been out of commission for a few weeks, still on the mend, but feeling a bit better.

When your mom goes to school with you, takes your notes,  and is your scribe, you're kind of up a creek without a paddle!

My husband has been home the past week, but not much schoolwork got done. I think one study guide for history might be finished. There isn't much aside from reading that Grace can manage on her own. She can still write for herself, if she can get up to the table just right and get the paper positioned perfectly. If she needs to look at a book or notes while she writes everything has to be repositioned.

I think the worse part of this is probably social. The main reason that we attend school instead of homeschooling is because Grace is a social butterfly. She gets along well with most everyone, likes to give a few teachers a rough time and in return they give it right back to her. She mostly has missed her best friend, Kayla. There are some weeks they're inseparable. When school is out for a long weekend or break they're usually together. Kayla was here when I first got sick, but not since. Thankfully my husband has taken Grace a couple of times to visit with Kayla, but it's just not the same. Praying for a speedier recovery for me, plenty of energy for all that schoolwork, and best friend time for Grace.

caught up? Hope SO

Haven't updated in a while, I think Grace is finally caught up in all her classes. It's crazy we went on vacation and she was supposed to have been given all her class work before we left, but of course there's more to school than the homework. She had a few chemistry tests to make up. Of course her most difficult class would be the one she had such a hard time catching up in. Almost feels like the vacation was more work than not having one at all. That is until I remember how relaxing it was.
I'm so thankful to the woman that gave us the week in her time share. We hadn't had a full week away from home since Grace was turned 10 and we went on her Make-A-Wish trip. need to save up for another good vacation, no need for them to only be when someone gives us one.

Runty

OK this has nothing to do with school, but I just have to share. When Grace was about 6 she spent a month in ICU at Shriner's hospital. When we came home our landlord told us that some friends of his had kittens and he thought Grace needed a kitty. I know a lot of landlords don't even allow pets but ours is the best when it comes to pets if we found an elephant he'd be OK with it living here. Anyway I'll get back to the cat. We took her to the people's property and into the barn where their cat had a litter of adorable kittens. Grace was immediately in love with the runt of the litter. I took one look at this little kitten and just knew he wouldn't survive the weekend and chose a second kitten as the back-up. This little Runty ( yes silly name but it stuck)  wasn't very healthy as he was 1/2 the size of the others and didn't even seem developed right. Anyway Runty lived and became a big healthy cat. He was the king of the house. So there we were with 2 cats for years.
Jump foreword about 10 years and we still have the cats. But for some reason Runty started taking little breaks from us, it started as just a couple of days then a week or two. He must have found a second home as he always came home fat and sassy. Well, about a year ago Runty didn't come home we kept looking for him and  calling for him, but no Runty he was definitely gone. After about 6 months I took Grace to the shelter and she picked out a cute little orange cat that has been her baby ever since. The new cat even rides around on the armrest of her wheelchair he just loves her.
Last night I saw a shadow on our front porch, I knew our female cat ( Runty's sister) wasn't outside and the new cat is an indoor cat. I was a little concerned that someone was on our porch and snuck to the window and peeked out. I didn't see anyone so I pulled back the curtain more and there he was, Runty!!! After a year he came home again. He's not really fat this time, and has a sore on one foot, but there he was home again. He walked in, meowed a "hello" and went straight to the food dish. He loved on all of us, my sister lives next door and when I called to tell her she even came over to see him. It amazes me that after all this time he came back. I don't know if he has another home or what happened. The new cat isn't too happy about Runty being here, but they'll work things out. And Grace? She is so happy to have Runty home again. Never would have believed he'd return but so happy he did.

Craziness

Gonna have to drag over my soap box again.........this school year the winter break was a late one. It was from a couple of days before Christmas till Jan 9th. Seems this has just messed up some teachers' schedules. They have one less week to teach required material before the big review time for state testing. I think it's crazy that those state tests have become so important. I realize it all comes down to the mighty dollar. the schools with the best scores will have more people interested in having their children attend those schools which means more money for cash strapped schools blah blah blah.
Don't know when school became something other than teaching. Everyone feels pressure to "perform" better than the year before. Pressure on teachers and administrators just trickles down to students. Then the teaching is almost gone. It's come down to memorizing. Not actual learning why something happens the way it does, or making any sense out of what they're doing. Not fair to the students or the teachers. I'm sure they'd rather skip the entire waste of time testing and reviews as much as the students.
Ok, I'm done ranting.........well until the state testing begins. That's a whole other craziness in itself!

Lover's Lane

Warning: This is all about a rant from Grace.......
Yesterday on the drive home, Grace was a "bit" grumpy. She has decided that there needs to be a special area for high school couples to bid each other farewell. Apparently she's sick and tired of having to either wait for the lovers to finish their "business" or shove people aside with her chair to get to her classes.
She said something to the effect of.......... 'it's not like these boys are leaving after each class to be sent of to war! NO! you'll see him again in 45 minutes! Besides you will be texting him before he even walks in late to his next class, because it's always the guys that have to hang outside the girls' room for that last lingering kiss.'
I think she may be onto something here. If only Grace ruled the world we'd all be put in our places and everything would be perfect :)

Home Again

Home from our time at the coast. Still have schoolwork to finish, books to read, movie to watch papers to write yikes!!!!
Thought I'd share a few pics and then crack the whip  HA! we'll do homework tomorrow.


Grace & Kayla at the lighthouse




The girls checking out the aquarium





Loved the jellies  we could just sit and watch them for hours



Wow thats a ton of work!!

Last spring one of the long term substitute teachers at Grace's school, very generously offered our family a vacation at the ocean using her time-share facility. When she called to reserve the handicap accessible room she was shocked to discover that the earliest available time was this January. So we are ready for a vacation. It's been 7 years since we've been able to have one.
Grace's BFF gets to join us as the room has 2 bedrooms. The girls are on independent study for 2 weeks and they sure have a ton of work to do! Their plan was to do as much as they could ahead of time, but they didn't get their assignments until Friday afternoon.
Kayla (BFF) came over today and they've been fast at the homework. I think they finished history except for movie notes on a movie we don't have yet. Kayla has a math class and is getting that out of the way. in English they have several stories to read, some grammar work to do and a paper to write!
Have no idea what chemistry has in store for them as the teacher posts his assignments online, but his site is down until Tuesday. Guess they'll be doing chem as they listen to the waves, could be worse.
Now for all my work, it takes a great deal of planning to take someone with special equipment on vacation. You have to have every tube, wire canister  and connector with you, along with backups in case something breaks, you also have to take chargers for the equipment. Thankfully, Grace is a great planner and always makes our lists for trips. She's very thorough, and almost never forgets anything. Plus there's all the regular changes of clothes for us all, school books, computers, ipads, phones, chargers etc. So glad we don't have medication to worry about.
I'm not sure how we'll fit all this in our van!!! But it's a nice problem to figure out. Updates when we return. 

How Does She Keep Up?

UGGGHHh.........almost time to return for the second have of this school year. It is hard to return after a long break. The good thing is that finals and benchmarks are finished. Grades should be out anytime ( OK maybe the grades part isn't always the good thing).
Heard an interesting comment from Grace's English teacher before the break. If the students had 90% in the class they could use a finals pass to skip the final. When he was passing out the review packet for the final test, Grace asked if it was going to be graded, did they have to take one if they were using their finals pass. When he asked who in the class wasn't taking the final it was only Grace.
He was amazed that someone that misses so many days of school is able to keep up and get a good grade. Said he'd never met anyone that could do it. Usually grades and attendance go together.
I've been thinking about his comments and granted English is Grace's best subject, I think her ability to keep up with her classes relies on several factors.
First, she has to be on top of her assignments, as soon as she comes back to school after an absence, she finds out what she has missed and prioritizes what she has to start on first.
Second, she has teachers that don't mind a student popping in after school or after class to ask a quick question. I think most teachers are there for their students and want to see them succeed.
Lastly, I think this is just "normal" for Grace. She's had a trach since 4th grade, she's missed a great deal of school since having back surgery in 7th grade. She had been on independent study a few times in middle school, but this isn't unusual for her. She is bright, and hard on herself. There have been a couple of classes she had to drop because of absences, but on the whole she's done fairly well. Having a medical condition that takes you out of the  'norm' doesn't have to mean you can't find your own norm and be successful. I guess I should remind her how proud of her I am.

What I did

Thought I'd show what I did with all those inchies from 2011. I was given a gift in a random candle box that seemed too nice to toss. I painted it my favorite color and just glued the the inchies on. I plan on using it to keep 2012 inchies in as I complete them. I have decided to try another year, but will post on my craft blog ..... www.tipistinkerings@blogspot.com