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.

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