Thursday, July 22, 2010

Please don't forget...

To all my friends out in blog land. Please don't forget to pray for our family. I am still here but my heart has not been able to pound out the words to fill a page. I am still struggling and am needing all the sincere prayers that I can get. Pray for wisdom and strength and God's merciful guidance and comfort. Thank you to my dear friends who have reached out to me with words of encouragement, you don't know how much it means to know that friends are out there.

Sunday, July 11, 2010

Prayers, please...

Forgive my absence, lately. Have been dealing with some serious personal issues and really struggling. If you all have some time to lift me up in your prayers please do. Having a really hard time, right now.

Saturday, July 3, 2010

Happy July 4th...What this "country" means to me...

I know I have said this before but I feel compelled, tonight, to wax poetically about our tiny town we live in. Our town is small...well...small isn't really the word. We don't have a stop light and only a couple of stop signs in the town limits. Let's just say, you could miss it if you blinked, it is also very rural. But our town has a host of "mis" conceptions attached to it. It is not "known" outside of the community as an accepting place but it is really a "mis" conception.

Tonight was our town's Independence Day Celebration. All the churches get out and set up tents and provide games, inflatables, food, drinks, snow cones, face painting...all for free! The street fills up around 5 or 6 with children, pets, families, strollers and everyone brings chairs to watch the fireworks at dark.

This year we took Faith, my sister and her oldest boy. The community is so close knit, everyone knows everyone. Even people I don't know...know me! Now this is the part that brings tears of joy down my face tonight, as I remember this magical evening. We decided to be brave and surprise everyone by bringing Faith's walker and let her walk the street. It was her first coming out party "walking" ever. Most of the people she knows have never seen her walk. She came tramping down the street and in moments we had a host of fans, followers and admirers trailing behind us...photographing, cheering her on, clapping for her!

Perfect strangers came up to talk to her and encourage her. This is a friend of ours who is mostly deaf who adores Faith and was kind enough to decorate Faith's cheek with...
( Gamecocks Rule...that's for you, Carl!)

It is hard to explain to people who aren't from here or people who don't have special needs kids how isolated it can make you feel when you have a sick child. But this community.....
has welcomed her into it's fold.

This little girl is not a girl scout but she does know Faith through girl scouts. Ever since she met Faith she has gone out of her way to reach out to Faith. She is a rec cheerleader and every time I see her she comes running up to me and asks if I have decided to let Faith be a cheerleader this fall. She never misses a chance to ask me! She came running up to us and the first thing out of her mouth...."Can Faith be a cheerleader this fall? Have you decided?"
SO CUTE! She made Faith two bead bracelets and decorated her wheelchair with carefully chosen stickers.

This is my favorite shot of the evening. These girls LOVE her...really LOVE is not the word! When they saw her walking they were yelling and cheering and telling everyone! We saw lots of people we knew who had never seen her walk who were awestruck. We met about 15 new people from surrounding communities who had to come meet Faith and she charmed them all, blowing kisses, calling out to them as they passed by. When she got overheated and we needed a place to let her rest and get cooled down...women from the Methodist church gave up their spots in front of a fan to let her recover.
Her stamina was INCREDIBLE ....the longest she had ever walked. I would say maybe an hour! Up and down the street...up and down...waiving at her fans and marching along watching all the people. When she saw someone she knew she would say..."Awwwww" and point and head straight that way. Men, women, children, dogs all were fair game.
See what I mean...this lady we did not even know brought her puppy for Faith to see and the first thing she did was reach out and hug and kiss the puppy.

She was so happy and I could never begin to describe how my heart was swollen with PRIDE!

She didn't make it to the fireworks, Carl had to take her home but I got a mom's night out and stayed with my sister to watch them. They were beautiful but as I watched the evening grow dark and the lights grow dim...fireworks starting.... I turned to look at all the people lying in the grass, on the street....all gazing at the sky...I was thinking...MAN, forget the fireworks! Look at these amazing people! Look how they have accepted my daughter! What an amazing community we are so lucky to live in! Although it is is full of heart and kindness! I have never been one to have attention drawn towards me but I tell you I walked straight down the middle of the street like the Queen of England, proud! It's so hard to explain without being here, being there to witness this tiny girl "OWNING" her community! I just don't have the words to describe it. Tears of happiness to know that she has a HOME in our town, she belongs, she is accepted, she is LOVED, she is encouraged, she is cherished. "
That is the what INDEPENDENCE means to me!


Friday, July 2, 2010

First month down...

Well, we are officially into our second month of homeschooling. I am not going to go into great detail because....well...we would be here all night! Faith has 21 days in so we are on track (we have to log 180 days by June 1, 2011). My goal is to have at least 40 by the time regular school starts which is Aug 16, so I think we are good. I have been doing a lot of trial and error things, trying to figure out the best way to present things to her. Of course, the simpler the better with her. I have been kind of making unit studies on the letter A with different A letter words each week...Apple, Alligator, get the point. We will spend the week reading books about each object, watching some educational movies and working with the real things doing counting or exploration (except the alligator, you know!) We have been playing a game with each object where I cut out a paper version of the object with the letter A on it and color it then go around the house and hide it. Then I ask Faith to find it. She has so much fun with this game and has become pretty darn good at finding it even when I try to hide it well. When she finds it I say the objects name and the sound A makes, then ask her to say the sound. We often play it for an hour or more!
I figure if I can get her to be able to identify (by pointing) the first three letters of the alphabet by Christmas that's a reasonable goal. I have been learning a lot myself about time management. I have always been pretty good at it, actually prided myself on it as a manager for years! But this is a different ballgame...therapy, doctors, driving, researching and preparing lessons, caring for her, getting her fed, dressed and medicated, cleaning, making dinner, record keeping. that all? I have learned that we will not be able to do our school year following a typical school year schedule there are just too many commitments (for Faith) that we can't give up. So I have learned to get up early and spend an hour or two first thing, then off to therapy then book it home and spend as much time as we can before dinner. The majority of Faith's education is still daily living and self help so we get to count therapy and also when we work on standing, eating and dressing...all that counts for parts of our school day.
So this is really just a recap of things we have both been learning in the last month. My real big issue is in SC we have to teach writing. Now Faith is just barely where she can hold a large crayon and scribble some marks on a page, so that is giving me a real fit. I know we have to start with the basics like lines and circles but she isn't even near that. I feel very unprepared...wait unsure how to do this right. I need to talk to our Association leader about what counts to see if working on her Ipad may count or what I need to do.
Faith seems to be enjoying most everything we do, mostly I think she thrives on focused attention by me...always has. She has passed 160 books in our first month and we are working on compiling a review of our A words in a "A book" with pages she colors of each of her topics.

Thursday, July 1, 2010

I NEVER thought I would see this day...

Well, OK I lie. I did think that I would see this day but it has been MANY years since I believed it would REALLY happen!

Today, Faith stood up on her own for the first time with ABSOLUTELY NO assistance! It really is a miracle after all these years it's so hard to hope for things that seem so unattainable! Since her first "getting to stand" with just a tiny bit of assistance she has had spurts of attempts again and again but them slacking off and not trying for days ( I think from fear after a few falls). After that day I felt sure it really WAS going to happen. This week she has been trying everyday after finally figuring out that she could hold on to the couch. She can consistently get her right leg into kneel now with very little effort.

Today, she was working for almost an hour, trying so hard over and over again. I was providing a little support on her left (weaker) side when she got up to keep her from losing her balance. I reached out and took my hands away just for a second to grab the camera and before I knew it....
She was UP! She wobbled and pitched and then leaned forward over the edge of the couch to catch her balance and stayed up! I couldn't believe it!
She only did it once but she kept trying....she just kept losing her balance and falling backwards. Once she fell backwards and missed the coffee table by about an inch and after a few tears she was right back up trying again. As of about 2pm today she can now get to kneel about 50% of the time without holding on!
My GIRL, I am so proud of you. Words are not enough to explain how much joy and surprise you bring to my heart! I love you the way you are but I love you more for your determination and persistence!