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!!!