New Tattoo

Ms Grace got a tattoo covered up today. It's helping her close an ugly chapter of this year. The old tattoo and reminder of why she got it is gone.  Here's the new happy tattoo. Happy healing Grace. You're my hero!!❤

Imma Girl

 How would you describe yourself to someone that had never seen you? Probably your gender, hair color, age, body type? What do you first notice about a person when you see them?
Grace recently went to a birthday party of her friend Anna. She hadn't been to any functions there or met her family before. As Anna was introducing Grace to her grandmother, the grandma said something close to " Oh I've met your friend before." This was a surprise to both Anna and Grace. Then Anna figured it out, "Grandma, was it a boy.?"  Yes it was a boy her grandma had been thinking of, Anna has another friend that uses a wheelchair that had actually met her Grandmother before. Poor Grace all she could say was '"I'm a girl." It was an awkward moment, Grandma felt silly gave Grace a hug and we've all had a good laugh about it since. We've decided that Anna ruined the perfect opportunity to tell Grandma that her friend had a quick sex change and was now Grace. ( I think grandma and Grace will probably become fast friends after this meeting ).
Anyway, I've been wondering how often we see people in a different light than who they actually are. We're no different than Anna's grandma. Obviously when you see a person with a wheelchair or crutches, any medical equipment, you notice it because it's not our "norm". 
But, how often is that all we see? Grace usually has a rather unique style that surprises people, they don't expect a girl ( or is it a boy? sorry Grace I couldn't resist) in a wheelchair,to dress like such a rocker, or have wildly colored hair. Don't know why being in a chair should determine your style or your personality for that matter. Think about it, you either expect a "sweet, gee the world is great, I'm so thankful for my wheelchair"  attitude. Or a " just back from the war, I'm now bitter about being in a wheelchair" attitude. Honestly, wheelchair users are just like everyone else; good, bad, sweet, mean. 
Next time you see a person with a difference, do your best to look past the difference. There's more to the person sitting in that chair than you know. 
(P.S. Happy Birthday Anna, I can't wait to meet your Grandma)

Pain is a Pain

Pain

Pain, I know it exists for a reason, just wish it were easier to control. Grace has chronic, constant pain. She has for a few years. Her doctor is determined to figure out the cause and wants to cure the problem. That's exactly what Grace wants, but in the long time it's taking to figure out the mystery she's still in pain. Some days are worse than others, some days she stays in bed. Pain is frustrating.

One of the biggest problems with pain is controlling it, narcotics are really the only thing that seems to dull the pain enough for Grace to function on her worse days. Of course we all know the dangers of prolonged narcotic usage. Again, frustrating.

Another aspect to pain is the lie. The lie the person in pain has to live. They still have work, school, walking to the mailbox, just getting up out of bed. They have to paint on a smile and go about their business as if they're perfectly fine. Now I know no one actually wants to tell the world " Hey!! Today is a crap day!!" but it also has to be hard to pretend that everything is just fine. Most people would never guess that Grace is in pain, when she has mentioned to some people that she's hurting they've said she should go to a doctor. Really? That's a genuine idea, she's never considered. She's been going for at least three years complaining to them about her pain, she's had to wait months for bone scans that didn't show the doctor the area that she wanted to see. She's also waited six months to get into some doctor's offices. And waited to find out she's been refused an appointment with a pain specialist. It's not as if the doctor is just going to know what the problem is and have a quick fix. Pain is frustrating.

None of us know when another is hurting. We need to cut other some slack. There aren't always answers, but possibly a smile could make a painful day better.

Staring

Stop Staring   

stare [ster]

v 

1.  look fixedly: to look directly at somebody or something for a long time without moving the eyes away, usually as a result of curiosity or surprise, or to express rudeness or defiance  

2.    to look wide open with shock, fear, or amazement (refers to eyes)  

3.  be obvious: to be obvious or blatant 

The answer was staring at you all the time; you just couldn't see it.

Just don't understand why people must stare. I can understand a look, a concern, even a little curiosity when it comes to seeing a person with differences, but a rude stare is just too much.

Grace had one of these days not too long ago. While waiting at the DMV a young man was walking with his baby girl to keep her entertained/happy. He must have walked by us 5 or 6 times. Each time he stared at Grace. It wasn't a discrete look but a rude, obvious stare. It took all I had in me to not yell at him to stop. I just wanted to explain that Grace could just as easily be his little girl in a wheelchair, honestly nobody knows what is in their children's future. At that stage there was no clue that Grace would have so many medical issues to endure.

After leaving the DMV we decided to go to lunch. As Grace was rolling down the sidewalk a woman drove by and stared at Grace, she almost ran the stop sign at the corner she was so taken by her.

This infuriated my daughter who started to yell something unpleasant to the woman. I told her to stop and then had  an unhappy teen with me.

Once we were in the restaurant a little boy about 10 stared at Grace, he even turned his chair a little as we went by him so he could get a better look. 

This was it for Grace, she shut down and didn't want lunch. Trying to be empathetic I finally leaned over and whispered that some days too much staring is just too much. That's all it took, my tougher than nails girl broke down. We went to the restroom to wash her face and help her calm down as my husband got our meals boxed up and paid for them. Grace had just had too much and she was mad at me for not letting her yell at the woman in the car.

Now I know each of those people weren't trying to hurt Grace's feelings, and I understand that you don't see many young people in a wheelchair, especially in a small city without medical facilities that cater to special cases, but honestly stop staring! Teach your children to be polite and smile at someone they see differently.She's an intelligent young woman, she wants to be treated as everyone else. Not started at, she's not a sideshow. If curious then ask her why she's in a chair, ask what her trach tube is, she'll explain it and you'll be blessed by seeing how much fun and helpful she actually is. I would probably be too weak to leave the house as much as she does. Normally nothing holds her back, she goes where ever she wants and bravely gets right in the middle of everything. We raised her to see that she's just like everyone else, she just happens to use a chair. But she's not 8 any more and those ideals are hard for her to accept now.

She had her day of anger and a little 'why me' pity party once we got home. 

The next day we had to finish some shopping that we didn't do on the previous "stare day". Grace decided if people wanted to look at her then she'd give them something to look at; She wanted a faux hawk. Not just any fauxhawk, but one with wild spikes and bangs. I did what I could as I'm not a a hairdresser and have no patience for it. She loved it and herself again. My tough girl was back again, and looked the part. And in case you wonder yes she got stared at, it bothered her and she told someone to stop, but I reminded her she did have fabulous hair to stare at.  

Happy Graduation !!!

She did it! Grace has graduated from high school.  

After all she has been through through-out her school career, we are so proud of her.

Let's see she has spent approximately 20 weeks in the hospital, had pneumonia 5 times, one medi-flight trip, seven surgeries, and way too many absences to count. If anyone could come up with an excuse to not finish on time or quit it could have been Grace. She stuck with it, taught herself most of some semesters and made it to the end. Would like to thank her teachers, friends, family, and medical staff that have helped her through this journey. Without all the love and prayers I know she would not be here to enjoy this accomplishment. It's been rough at times, but worth it all. God Bless. 

It happens so fast

Grace will graduate HS in a month. It really is true that it happens in a blink of an eye. I hear so many parents complain and feel sadness at their children growing so quickly.
I think having a child with medical issues gives me a slightly different perspective. I can't say I don't miss those days of mud pies and swing sets. But those were also times of realizing our daughter had some issues. They were terrifying days of being misdiagnosed and the unknown was always around the corner. I think back to Grace's first serious brush with near death. She was so tiny and helpless, only six years old,thankfully God hid info in a previous muscle biopsy that when relooked at provided a few answers.
I remember Grace as an eight year old sitting on a huge horse. She loved riding and it provided needed therapy for her body. I wasn't sad that she was growing it meant she was living!
Before I knew it she was at her eighth grade graduation dance. It was a huge milestone for her. She had endured so much. Another brush with death, about ten weeks in ICU, a tracheostomy, and horrible back surgery in seventh grade. But she was living. She was strong willed and happy.
I just don't feel as sad as some parents. I know they're proud and happy for their children as I am also. Just not sad, but thankful for everyday Grace is living. Not all days are great but getting older means she's fighting, she's overcome more than anyone else I know. I'm thankful she's grown and yes, she's living!!

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.

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