Why? Why? Why?

First off I have to explain that turning 18 unleashed a wild thing in our house. Grace has changed her look so much some people don't recognize her. Even when she's the only person in a wheelchair in the room. She went from very long black hair to very short blonde. Not only the hair is different. She is loving piercings and has added a few new holes in her head ( that was my Papa's description of piercings when I was a teen).
Ok that said, Thursday Grace finally visited the kindergarten class that she helped in last semester. She had quit because I had surgery coming up at the beginning of this semester. Now these kindergarten students know Grace, they used to see her once a week. But she came home with a list if questions that she was asked. I'm sure I'll forget a few but here goes ....
Why is your hair short?
Why is your hair that color?
How did your hair get that color?
Why do you have needles in your lips?
Do boys put needles in their lips?
Why do you have a bracelet on your neck?
Why do you have a buckle?
Who does your buckle?
Why do you have little feet?
Why do you wear bracelets?
Who put on your bracelet?
Why haven't you been here?
Why did your mom get sick?
What kind of sick is she?
How did she get sick?
Who puts on your glasses?
When are you bringing your spider to school?
What does that button do?
Are you wearing a wig?
Can I pull your hair? I think it's a wig.
Whew I'm tired just thinking about all the never ending questions. Now for the kicker. She was only there about 2 hours, most of the questions were asked by two little cuties and they were also getting work done during all this!! I think she was missed and enjoyed herself more than she remembered :)

Thankful

Thankful

I must say that after looking back at some posts from the beginning of this blog I really do have so much to be thankful for. I had my surgery (hysterectomy) last week and am feeling better than I have in years! It's amazing to me how quickly I felt better. 

I also am thankful that it's spring break right now and I get some time to recuperate without thinking of when to help Grace with typing her schoolwork.

I am most thankful right now for Grace's school that she switched to for this year. She has one class online and we home-school a class. The other class is an independent reading that Grace never has trouble doing. She's always been an avid reader.So nice not to worry about how long I have to be taking things easy, not able to drive or lift Grace. Her new school is more than willing to work with her without me having to do all the work to arrange for assignments from all her teachers. Another thing I am thankful for is the opportunity to watch Grace grow. I've been attending school with her since 4th grade, she has had times that she's felt like she owns the world and other times she's wanted to crawl under a rock ( sometimes both in the same day). She is looking toward the future and so ready to be finished with high school and some of the petty games people play. 

It'll only be a couple months until she graduates and moves on to bigger and better things. Am trying to decide if my blog with be finished. I will probably always have some part, even if small, in helping Grace through her education and life choices. We'll see where her decisions take her. For now I'm thankful for her and pray for greater things in her future.

Awarded

So proud of Grace. Her school nominated her for an award in their district to honor her for being a success in spite of the hurdles she's come up against. She not only got the district award but also the county award. I woke up feeling horrible on the morning of the award breakfast and missed it. Broke my heart. One of the perks of going to school with Grace has been always being able to be there for these events. Helped me remember what it's like for those patents whose jobs don't allow for these privileges. Thankfully Graces dad had asked to come in late and my sister was also attending the breakfast. Here's a pic of Grace with her dad,teachers, principal,board members and superintendent of schools My sister was the photographer so of course shes missing in the photo. So proud of you Mz G!!!!

Changes yet again

Grace will be graduating in just a few months. Just when we seem to have everything on a good schedule something unexpected cones up. I am having a hysterectomy in a month and will be out if commission for a bit. This means Grace won't be able to attend her on campus or community service classes. Thankfully she already had enough credits and didn't need those classes to graduate. Part if the reason she switched to this charter school was because I was having the same health issue last year and she missed most of her last semester at school. She basically self taught on independent study. Good thing she's a self motivator. Not much more to report at this time. This seems like an uneventful year for a senior year of high school. But considering the type of events Grace has had in the years past. We're ok with uneventful.

Happy Birthday !!

There have been times in the past that we weren't sure Grace would get to this day, it's not something we really spoke out loud often, but those thoughts have lurked in the back of our minds at times such as watching her be put into a helicopter to fly to a better hospital, or as she's being wheeled into a surgery room for 10 hours. But here she is, now an 18 year old young adult.
She and I were talking a while back about how much she misses getting birthday cards in the mail. It seems that Facebook and texting have taken the fun out of getting real mail. As a surprise I asked some fb friends to send her cards to surprise her for her bug 18. She started getting cards and they just kept coming, one day she got 20!!!! When I told her what was going on she lived it. What a simple, easy way to help Grace know she is loved. She received 61 cards by her birthday! Thanks to all that helped!

No Holidays Off

Just wanted to remind people that those that work in the medical/hospital industry work everyday of the year.
Grace has been at a hospital on New Year's Eve and day and also on Good Friday and Easter. There are always doctors, nurses, techs, housekeeping, nutrition staff and I'm sure many others that I'm unaware of working. Some days there may be a lighter staff than others but the quality of care doesn't show it just wanted to send a big thank you to those professionals that save lives while the rest if us are home enjoying our families or out partying it up. Thanks again!!

Happy New Year??

This was a New Years Eve to remember. I should have known it would be a doozie when Grace woke up and said she didn't feel well and was going to cancel having friends come over. By 4:00 we were in a local emergency room, Grace couldn't swallow anything. She felt like there was something blocking her throat. After a few hours it was decided she should spend the night for observation and more fluids and pain meds via an IV. Wasn't really what we wanted but could see the necessity, within an hour we were told that since Grace isn't 18 yet and used a ventilator at night; she would have to be moved to the children's hospital that she's been to for past illnesses. By 1:00 am we were in an ambulance for the hour plus drive.
She was given some pain meds and she was drinking and eating again by noon. Still in pain and had a terribly sore throat we were sent on our way by 4:00. Home again and thankful to be in our own beds for some much needed rest

A Happy New Year ?? Of course, we're all home where we belong and Mz G is on the mend again.
P.S. never did figure out what caused the painfully swollen throat or inability to swallow Still waiting on test results.

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.