Defining Ourselves

How do you define yourself?

Tough question?

When I was young and carefree, I defined myself as an animal rights activist, nature freak!

I was a vegetarian, volunteered to smuggle animals out of the shelter whose times were up, moved dead animals out of the road, etc. etc. etc.!

When I got married and started a career, I defined myself as a working woman bent on trampling over the confines put up by men. I worked harder, came in earlier and generally overshadowed all my male (and female) counterparts.

Now, as seasons have come and gone, I find myself defined by much different standards than the world is used to.

I am defined as a mother, not just a mother, but a mother of a SPECIAL child.

This would be my definition!

I know alot of other moms in our boats don't define themselves as any different than other moms..... But I do.

I DO BECAUSE I AM!

I have seen my child on death's door (more than once)

I have requested sugeries that we knew would be painful but nessessary

I have wept bitterly that my child cannot say M-O-M

I have changed diapers for five years on a child who should be off to kindergarden

I have dosed up more ml.'s of antiepileptic meds than anyone should ever have to

I have cleaned up vommit so many times, it's like a perfume on me now

I have had meltdowns in the pharmacy drivethru b/c her seizure meds were wrong again!

I have snapped at little kids, who ask what's wrong with her

I have broken the rule about not letting your kids sleep in your bed

I have become SUPER _ _ _ _ _(you fill in the blanks) to protect her

A prowling, stalking, ferocious LIONESS!

I have even worried about how many days she has on this earth!

I have fretted and worried and prayed and cried..

I have been CHANGED by this mighty wave.

I am MOM but I am MOM to a SPECIAL GIFT that not everyone has been blessed with!

Sometimes it feels like a curse or punishment but then I see her do something that most parents take for granted and I snicker to myself...

"Most parents don't even notice that stuff, and we get to party everday over the little things!"

AND I AM HER MOM!!!

I can live with that!

Reaching Out!

So, today, Faith had an appointment at the dermatologist. We got there at about 2 pm, half hr before her appt. The waiting room was FULL, about 40 people! We waited for over an hr and 40 mins. for a less than 10 min. appt.! I digress, anyway, we met this really sweet older lady, sitting next to us. She was probably in her 70's. Now, you can get a mixed bag with elderly folks, some are really nice and accepting, others not so much! I guess a product of the generation they grew up in. This lady was super sweet, she spoke directly to Faith and interacted with her for over an hr. She kept talking about how smart and quick to learn, Faith was. (Who IS this person and where has she been for the last 5 yrs) Now Faith can be slow to warm up to people, she plays shy, sometimes. But this time she reached out for the woman and offered her prized poodle toy! She showed off by hugging the toy and making it dance for the woman. She pointed to the different body parts when asked and responded to questions that she was asked. The lady asked about school, now this can be tricky b/c some people are supportive and some (again) not so much! I explained about the SC waiver and homeschooling next yr. She was so positive! She thought it was a great idea and then told me that she had a niece who was profound and was in school and how unhappy her family was with her situation. She just thought it was great that Faith was going to be taught at home! WOW! A room full of people and I just happen to sit next to such a nice lady! Faith was so smitten with her that when we finally checked out, the lady was checking out too and Faith waved to her and called out to her for attention! She said to Faith " I will always remember you!" I wanted to cry! It was so nice to not be judged and for Faith to make a friend on her own! It was great. Thank you, God, for this special woman.

Bele Chere, follow up.

Today was our annual trip to Bele Cher (see previous post) in Asheville NC. We got there early and before too many people were there. We actually found a FREE handicap parking space near everything! We had alot of fun watching the AirDogs jumping and even saw a black st. poodle give it a try. Once Faith saw that dog, she thought it was Gandalf and we had to go meet the dog. It was so cute, a bunch of people with their dogs brought them over for Faith to get to see. We were so excited to find this girl who was selling this line of t shirts that say "Carolina Girls are sweeter than the tea". Now Carl, my hubby, is a sweet tea afficiando! So we had to get one for her! Pink and OH SO SWEET! She was so proud of her shirt! The girl who owned the booth even took Faith's picture to use for her advertising!
Then, this is the coolest thing, they had a massage therapy practice offering free massages, so I asked if they would do Faith. So they did! We were lucky to get the lady and she was AWESOME! She came right over to Faith and introduced herself and Faith reached out for her!! SHOCKED, we were! We got Faith on the massage chair and within a minute she was more relaxed than I can ever remember! She just smiled and smiled and would turn and grin at the woman. Then the woman said " That is the reason I came out here today, was to meet Faith and do this for her!" I just about cried!
Then we found a family who was doing a percussion program for toddlers and Faith got to participate. She got to hold these hollow plastic tubes and bang them together. She was going right along with the beat of the other people! SO CUTE!
We did have a bad experience with the children's area rides. They wouldn't let Carl take her down the inflated slide. We even went to the owner of the rides but it got ugly and Carl ended up throwing the ticket at the man and releasing some inapropriate things to him. We were very upset and we left after that.
All in all, we did have a good time. The weather was very cool, which is unheard of this time of year!

PS. Faith lost her second tooth, yesterday afternoon!
I am going to give a shameless plug to Cosmic Groove- The massage therapy group
www.thecosmicgroove.com
Also to Sweet Tea clothing company- www.sweetteaclothing.com
Thanks for your kindness to our daughter!

Faith's bed

Amy,

You made me think about Faith's new bed as I was reading some of your old posts about adapted equipment, so I decided to post this! PS> See all the ladybug stuff, LOL!

So these pics were taken a few months ago, when we first built the bed. Anyway, we built this cool bed for Faith b/c she was outgrowing her crib. (Yes, she was still in the crib at 5+ years!) We didn't trust side rails and we wanted something that would be a permanant fix. So I had found this super cute twin post bed, yrs before Faith was born, at the flea mkt for $25. I had always wanted to use it for my baby sis' but never did. It was just collecting dust under the spare bed. So we put our heads together and enlisted my cousin's hubby for help to build it. We used laminated wood to make stacked sides that would drop down w/ heavy duty door hinges and slide locks on the posts. The bed started out weighing about 100lbs or so and now weighs prob. 400lbs! It's not going anywhere, I told my hubby that we would have to burn it down if we ever moved! We made taller ends, also, so she isn't going anywhere. So now she has a SAFE bed for as long as she is here in this house. We call it her BIG GIRL bed, and she is so proud of it. I didn't think she would know what that meant but she apparantly does! Including the cost of buying a new mattress and bedsprings it was about 250 bucks, not including the 25 for the original bed. We were very proud!

Bele Chere

I am so excited for this weekend to finally be here! Every year, during the last full weekend in July, Asheville NC hosts the annual Bele Chere festival! We go every year. It is one of the south's largest festivals and is totally free to get in! It takes over downtown for three days and they say over 300,000 people come out. They have bands playing(which are free, too!), Ultimate Air Dogs dock jumping, tons of arts and crafts for sale, street vendors and fun stuff for the kids! It is one of our favorite festivals,ever. Last year, we took my cousin and her family for their first time, and we got to see the dogs jumping after balls into a huge pool. It was so much fun, Faith just loved seeing all the different dogs. We always try to get up early and drive up, it's about a 1 1/2 hr drive for us, so we try to get there before the crush of the crowd and the heat of the afternoon. Asheville is such a cool city anyway, it is home all kinds of funky, unusual characters and stores. One of my favs is Mast General Store, an old time store with barrels of candy, funky clothing and neat shoes. Another one is Chevron Bead store, they have every kind of cool bead you could imagine. It's great to have something to look foward to! I am attaching a link to the Bele Chere webpage, if you are curious about it. It's great!
http://www.belecherefestival.com/

Congnitive Testing

Today, was Faith's first round of actual testing at the Dev. Behavioral Peds. She was working with a young lady, who is finishing up her residency, next month. The girl was very good with Faith, I was worried that Faith wouldn't do well b/c it was a new person and all. Faith played appropriately with the toys given to her. She responded, in her own way, to requests, questions and even showed off some of her ASL w/o being asked to. The girl was VERY impressed with Faith, commenting that the biggest worry we are going to have with Faith is underestimating what she can do! We were extatic! She said that Faith demonstrated high levels of curiosity, high threshold for frustration and an easy going nature! She made alot of observations that even I hadn't noticed before. She said that she was clearly more cognitively developed than we had thought. She also said that she was very patient and was trying very hard to do things "just" right. Like, she had a bear and a spoon and a cup. The girl "stirred" the spoon in the cup and pretended to feed the bear, then gave the spoon to Faith. Faith got the bear in her lap, then she tried to put the spoon in the cup but it fell over, so she dropped the spoon and spent several minutes trying to get the cup back upright and in the same spot. Finally, she got it right and "fed" the bear. She told us that it was a very good sign that she is observant and persistant! Carl and I were on cloud 9! We walked out of there with the biggest smiles you have ever seen! It was such an uplifting visit, compared to our usual "bad news" visits! She said that Faith was very facinating and she though she could come up with alot of good suggestions for us with homeschooling! SOOOOOO HAPPY!!:)