a bit helpless

brooke spent the night with us on thursday. we had a wonderful time! i love being in her company. she has a way of brightening my day with just a look in my eyes. i could watch her all day. she makes me laugh, cry, wonder, and seek.
i told bill the other day i love helping her. i miss blow drying her hair, making her bed, getting her dressed, make her meals. there is something about helping someone that is helpless. just this week i've had a moment like that w/God. I have felt a bit helpless and desired nothing more than to crawl up in His lap. like i desire to help brooke, i know God desires to help me when i'm in need. He amazes me...and brooke amazes me. thank you Lord, for giving her to me...for showing me just how much we are in need of You.

hair time

brooke did very well getting her hair trimmed. she has come along way with this! i found a salon near our house geared just for kids...toys, suckers, and flatscreen tv's. the stylist was great w/brooke. we will be coming back. thanks LT staff and Gail for your help and patience.

here we go...

the emotions of brooke's accident will embrace

us as we seek wisdom. God, we need your strength

and wisdom to make the right decisions.

rett visit report

in june i posted that we went to her rett appointment...in july i got her report and wanted to share a bit of what dr. percy wrote:

"she continues to have minimal features of rett syndrome but does have stereotypies in the form of hand wringing, washing, and some finger rubbing and finger knitting movements. she has very purposeful hand use and ambulation. she continues to have aggressive behavior and is on medication. she was alert and interactive and does give reasonably prolonged eye contact. she is quite capable physically and at times has behavioral outbursts with hitting of others and when frustrated may even bite herself. she says a number of words and phrases, much of which is in response to others, but she occasionally comes out with self-generated speech. she does have some persistence of drooling, particularly with food in her mouth. overall i found brooke to be more interactive and in general i was able to examine her the best that i have yet been able to do so. I do believe that her current living arrangements has had a very positive effect on her overall behavior and performance."

there are many "new" things going on w/rett research! this could effect brooke in a big way!
www.rettsyndrome.org

diagnosis

as i mentioned, brooke has been running fever since yesterday. her direct staff took her to the doctor today and said she has the flu. pray for quick recovery for her and those that work w/her.

i did see her today before she went to the doctor. she was laying in her bed...you could tell she was not well. it makes me sad that i cannot be with her when she is sick...in fear that i may spread it to the cottage. i know, however, she is in good hands. thank you LT for taking care of her.

chicken noodle soup to the rescue!

wish i could be with you brooke. i love you.

recent days

brooke's been running fever today. i hope she's not coming down with something too bad. she has a doctor's appointment tomorrow because she may be having an allergic reaction. she has had a strange reaction underneath her eyes a few times...just wanting to get to the bottom of it all.
bill went over last night and dropped off some clothes from my closest and some new clothes i picked up for her. yesterday she didn't have the best of days.
i'm hoping she can come to the cottage on friday. i miss her face. i love you brooke!

this gave me chills

recently i asked a close friend how autism has affected her life. with her permission this is what she said:

"Autism has taught me to be thankful for the little things in life. Autism has taught me that the world is hateful to those who are different; people stare and judge. Autism has taught me how to believe in myself; if these children can overcome their battles, who am I to complain. Autism has brought me close to many amazing people. Autism has taught me the struggles of parents who just want their children to have a happy life. Autism has taught me God's will is to teach others through people with disabilities. I am who I am today because of Autism...it is my life, my passion, and my desire to give these children EVERYTHING I am able to give. I will love those children who have no family, I will take a hit or bite if it means the child learns to communicate, I will wipe poop and urine if it means a child is clean and dignified, I will love them all no matter what the circumstances. If my love for them is so powerful I can only imagine God's love for me."

now that is a powerful statement!

moments with dad

growing up

brooke is so fun! she runs around the room, wants to play chase, and jumps on her bed to catch her. i snagged this shot when she jumped on the bed.

the jeans fit just great!

jeans

today it's time to shop for some jeans at Old Navy for Brooke. it's kinda funny to be shopping for her it's like shopping for me only i don't get to wear her clothes. oh well, old navy has jeans on sale this weekend and she is in need.

we are enjoying the last "full" day of our break today. I'll see brooke later this afternoon to give her the jeans (and hope they fit).

later in the week i hope brooke can come to the cottage to eat dinner w/us.

i miss you baby! see you soon.

our moment

these shots were taken by a dear friend, lonna. you'll see her in the picture at the end. lonna and i met about 8 years ago at a youth conference in st. louis in the midst of about 10,000 people. we've been talking since then thur email and such. just recently, she was driving thru and stopped in. great to see her after all these years! lonna has a great eye for photography and i love her work! i introduced her to brooke and she took some random shots that i will cherish forever. thanks lonna for capturing moments w/brooke that are priceless to me!

hide and seek

summer life

a passion of mine is writing and i have had "little" to no time to do just that this summer. the children's home life has kept me very busy, but i'm turning back to blog/passion!

just saw brooke last night! she was running thru the house very happy. my thoughts are: they told her that i was coming over and she couldn't help herself get excited. it was a sweet visit. my friend, lonna, was coming thru town and stayed w/us...she met brooke. good timing too!

i'm in love w/that little girl of mine. i miss her little self in my own house.