This place is a circus...

I may have mentioned a few months ago that Faith was asked to be a representative child in the Hejaz Shriner's Circus, this year. We got the call, tonight, from the wheelchair team confirming the date, March 27 at 3pm. I am excited for her because I think she will love the animals and we get front row tickets! She has never been to a circus before so it will be an experience! Our family will be brought up on stage and be part of the circus! Last year some of the kids got to ride some of the animals. Amazing, right! They are also giving us $20 in spending money for food and gifts! I put in a word with the gentleman who signed us up, asking him to commandeer some extra tickets for Faith's girl scout troop to go. We'll see what happens but he seemed pretty sure that he could get some for us! The other big thing is I have been asked to write an article telling about Faith's life and how Shriner's has helped her. I am excited but slightly nervous. I feel compelled to tell her story but a writer, I am not. So I have to start now! I really hope that our troop will be able to accompany us, I think it would be great for the children to see and hear some of the struggles Faith has overcome in her short life not to mention, have a little fun too!

Girl Scouts gone WILD.....

Another cold evening selling cookies on the side of the road....

But tonight, the girls got a funny idea to wear the cookie boxes...

Faith had to have one too and I thought it was appropriate that hers was a Thanks A Lot....

It was bitterly cold outside with a stiff wind but it didn't dampen the spirits of the girls. They made up a game for Faith to play. She would take one of the kid's hands and jerk them around and the girl would spin around in circles away from her. To say it was funny to Faith, is a mild understatement! She was laughing hysterically! One of the girls came up to me and said "Mrs. Candace, I love Faith's laugh. It is contagious!"

Actually the box idea was great because we had a big increase in cars stopping when they were out there dancing on the side of the road. Some of the girls really got into it and were shaking their hips and running into each other! It was a riot!

Clearly, Faith thought so too! She got a little windburned on her cheeks but she didn't care!

She got right in with the box idea. When I went to take it off she signed more, so I handed her the box and she put her head in the box, like she wanted to do it again!

Then some of the kids figured out that the boxes blocked the wind so they started wearing them on their heads. We looked out onto the highway and people were videoing the kids, with their cell phones! Truly it was stupendous! Probably one of the greatest promotions of girl scout cookies EVER!

I know I say this every week but...GOOD GRIEF I love those girls! They are SOOOOOO good to her and she loves them all so much. She is always hugging them and kissing them and they don't even care that she drools all over them!

I think I need to become a National Spokeswoman for Girl Scouts....

I NEED A SIGN.....

I have something exciting to report......

WE are going out!

On a real date!

I haven't talked a lot about this issue here on my blog but I thought it was a good time to bring it up. Any of you with special kids out there knows that it is difficult, to say the least, to go out and leave the kids behind. For me, it is down right painful. Really painful is not even the word. I have such a hard time dealing with leaving Faith that we have only done it maybe 4 or 5 times.......EVER!

Ever....you say....yes EVER! In six years! It is so hard for me.....I would rather do anything than leave her behind. I feel like it is such a big responsibility to ask someone to watch Faith, she is so high maintenance and with her seizures, most people are....well.....intimidated. Not to mention, that I feel incredibly guilty if I leave her, like if something happened I could NEVER live with myself, if I wasn't there for her. You can only write down so many "what if's...." for a babysitter!

Carl is not nearly so bad as me. He thinks we should be able to leave her with various relatives including grandparents. HE HAS NO IDEA! LOL!

I know I am really BAD. I know I should be able to leave her for a few hours but it is almost physically painful for me to do it. I worry, I sweat, I make up crazy things that might happen, I feel guilty, I cry, I just can't handle it!

BUT I am going to go, this time! Really there's no backing out! Carl's sister agreed to take on our girl for an evening so we can go see....

TRAIN!

Only my favorite band in the world! They are coming to Greenville two days after our twelfth anniversary and this is my anniversary present! I am excited, I am thrilled, I am ecstatic, I am on cloud nine! I am also very nervous and feeling quite guilty! BUT I can't change my mind...the tickets are non refundable!

So wish us luck! I am starting my list of "what if's", today. Carl's sister has sat for us two other times, so she has a small idea of what to expect.

So here we go....

Play therapy....

I took a page from Dr. Boucher's suggestion on her blog titled...
Messy Therapy

So we got a container of Chocolate Cool Whip and let Faith have at it! I chose the chocolate because she responds well to stronger flavors. Needless to say, it was a MESS! But she had a blast!

We got out spoons and NUK brushes and bowls....
I loved seeing her put the spoons and cool whip in her mouth...

She thought it was the funniest thing ever, making a BIG mess all over the table and floor and chair and herself....

She pretended to color with her hands and with her utensils....

Then she got the NUK brush stuck in her mouth and couldn't figure out where it went...

She also did some throwing (not my favorite part!) leaving me a bigger mess on the floor to clean up....She seemed to like the feeling of the cool whip because when she had obliterated a pile of it she would sign "more" for another pile....

Then she decided to make it a full body mess and lie down in it....see arms, hair, face, clothes....

All in all totally worth the $.50 for the cool whip....but I sure wish I could find someone willing to clean up the mess!

Anomalies....

Throughout Faith's six years this word has surfaced, periodically.

Anomalies....

A hard word to hear.

When she was born it was some kind of anomaly with her blood clotting.

When she was 6 months old an anomaly with her skull formation.When she was three an anomaly with her kidneys and so on and so on.

This morning I got a call from the genetics lab in our area informing me of an appointment that we were currently missing, at the time of the call. (Apparently they sent the appointment notice to our old address....the one we haven't lived at for 3 years!)

So I raced down to the appointment after Faith's first therapy, this morning.

They had not seen Faith since she was 9 months old, so there was a lot to catch up on. I ran down the list of new diagnosis over the last 5 years.

They examined her and took more blood telling me that there were several new genetic tests that they wanted to run, that had come out in the last year. OK.

Then came the discussion about anomalies.

About how even though she suffered a stroke/series of strokes at birth because she had a blood clot in her brain, she still has all these weird other diagnosis that don't usually come with just a CP diagnosis. Things that often look like genetic abnormalities or possibly abnormalities that began in utero even before her stroke.

A very foggy and agonizingly painful topic for me. I have said before that I think that most doctors make generalized assumptions about Faith but aren't really sure what is going on with her or what to do for her. I get a lot of broad brushstrokes when it comes to this kid. Things like "some kids like her just continue to have seizures despite "our best efforts"

or

"WE think that her tumor might not be a tumor but a "brain damage scar" from the insult she had at birth." (interesting....since this "scar" continues to grow after six years...didn't know scars did that and neither did our pediatrician!)

or

"we don't know why she had this blood clot. She tested positive for protein c and s deficiency at birth but now all of our tests show no sign of that!"

She IS an anomaly...

They want to present her case to their genetics panel to get another "consensus" and to try to see if anyone else has any ideas about why she is the way she is.

So here we are again more doctors wanting to run more tests to find more anomalies with her.

It is frustrating when you think after all these years you know everything about your child but as is often the case with Faith, you can be wrong.

Faith's first...

Yesterday was a big deal for our little girl.

Her friend from Girl Scouts (a third grader, mind you) came home to play with her, last night. She had her first friend over! Now some of you may be shocked but Faith does have family friends over and family kids over but this was her first....outside friend!

A friend that she made, on her own, who does not have to be nice to her because she is family or a close family friend...

This is the same little girl whose daddy made the beautiful horse for Faith's birthday. The same little girl who is so possessive over Faith. She has been begging for weeks to come home with Faith and we finally worked out a time, after their cookie sale last night. It was good because she was only able to stay for about an hour and fifteen minutes since Faith had to go to bed. It was just enough time for them to get to play but not for Faith to get overwhelmed or worn out. They read together, played kitchen, played in her room on her bed and ate girl scout cookies (Lemonades, if you were wondering...) together. It was the cutest thing ever!

When it came time to leave, her little friend said "I'm gonna ask my momma if I can spend the night with Faith one night"
Yes, friends, I was bawling my eyes out by then...

She got to see Faith get her night time medicines thru her feeding tube, get dressed for bed and have her diaper changed and she didn't bat an eye! Acted like it was nothing at all!

Then today at our second booth sale she came running up to Faith and hugged her and said " I wanna come home with Faith today!"

Ok everybody, you can all pull out your hankies and have a good cry, now....

Adventures in Cookie Sales....

Cookies....
Cookies....

Cookies....

Did I mention.....

Cookies....Two days after we received our cookies for Girl Scouts I AM SICK OF COOKIES....

I spent about 5 hours passing them out, yesterday and then the troop had their first booth sale tonight- 2 1/2 YEARS....Oh, I mean hours....he he he.

Just a trip to daddy's work, where Faith is followed around by "paparazzi" took almost three hours! She sold over 150 boxes just at his office and I am pretty sure we have broken 250 by now. Faith had so much fun racing around the side of the road, being pushed by all her little friends. It was the first nice day in a very long time, the weather was almost perfect. The children doctored up Faith wheelchair with posters and paraded her up and down the side of the road. They performed cheers, did pyramids, carried each other around on their backs. It was so cute!
They included Faith in selling the cookies...she passed out boxes and collected money. But mostly she just got pushed around. After about an hour or so she started to wear down and by the two hour mark she was ready to go home. I leave you all with pictures from our first adventure, tonight, and promises of an exciting next post. A first for our rock star girl scout....wait and see!

Discovery...

I thought this sign was an appropriate explanation for life with a kiddo like Faith.....
A trip to the museum is ~NEVER JUST~ a trip to the museum...

Yesterday Carl had the day off to go to a doctor's appointment with us. Perfect time for a trip to the new Children's Museum . We had been wanting to go for several months but weekends are too busy for Faith. We had a blast! It had all kinds of interactive, hands on, tactile things to play with. A race car area, a space shuttle, a grocery store with tiny little carts (Faith's biggest weakness! She loves shopping carts!) and all kinds of groceries on the shelves that would actually scan.

They had a garage band room with all kinds of instruments, a sound area with Blue Man Group themed sound toys and all kinds of crazy lights. There was a little farmhouse with little everything for smaller kids- like animals, things to pick like flowers and vegetables, a little kitchen. They even had a cow that you could milk~ but Faith was afraid of it~! Lots of things that she could get her hands into.
GREAT THERAPY...
She worked on picking things up...
standing....
reaching....
activating things with buttons...

pushing and selecting items for her shopping cart...
driving....
brushing....
Hey,it's not everyone else's normal but it's our own version.....

Snow...

This is what I saw when I came home on Friday....

Remember what I said about snow in South Carolina a few weeks ago? Hah, very funny, Mother Nature. I do not appreciate your wishy washy ways....50 degrees one day but snow the next?
Not to mention that thanks to you, my poor husband had to drive home in your foul weather and put his truck in a huge ditch. He had to crawl out the window to get out and stand out in all your white wickedness waiting for someone to rescue him!
Don't worry too much, folks...
He's OK and we got the truck out this afternoon. It still drives but the alignment is wrecked and we are hoping the axle is not bent.

Needless to say, Gandy thought it was all fun and games...

I did not get out in this mess, once I got home Friday. Did I mention that I hate snow? Carl had cabin fever after about 6 hours in the house but where could he go? His truck was on a 45 degree angle!

I did get some beautiful shots of the trees, as the sun was coming over the house. I thought this one looked like a stained glass window...

OK, so maybe I jinxed us by hanging this flag a few weeks ago. Note to self....Throw this flag in the trash!

When I did venture outside just to have a look see, I saw the neighbor's horses eating the snow off the branches of the bushes...

Thankfully dear ole' Mother Nature did not punish us too long, by evening Saturday most of the snow was gone but there was still ice on some of the roads this afternoon. Goodbye snow, hope to see you........NEVER!

Where does the time go?

Here are some pictures of my sweet girl during the last three years.....

Faith and her cousin share a moment at a cool playground in Brevard NC..

Faith and my littlest sis, recovering from a long day at the beach...

I have this picture blown up in black and white, in our bathroom.
We call this her praying picture...

Folly Beach, SC 2007...She looks so carefree and joyful.

Every year we take Faith to the Botanical Gardens to have her spring pictures made.

When Carl and I got married, I had my bridal pictures made at this very spot. It is a family tradition that we do on the week of our wedding anniversary in March...

She looks so little to me, here. I just can't believe where all the time has gone...

This was at our old house when she was barely three. This was one of her favorite modes of transportation when she was smaller and couldn't get around. My little sis would drag her all over the house by that yellow string. And that string is still on that laundry basket, today! I look at these pictures and just can't believe how quickly time has gone by.
I sure do love that little girl....