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.