Wednesday, September 30, 2009

my help comes


(continuation from previous post)
The LT was good for Brooke. They were able to potty train her. She had someone with her at all times. They had individual education plans, behavioral plans, and even house plans to teach her to put her plate in the sink, her clothes in the laundry basket and to do other small household chores. They also went on outings like to the movies or to pick up something from Wal-Mart and, of course, going to the park. We would get to see her on the weekends. Sometimes we all went or just one of us. Mostly, I went because Bill had responsibilities with the church. It never got easier leaving her. And even after taking her back to the LT from a weekend visit, it was hard coming back to the non-chattering home. It made me more depressed as I washed her sheets and clothes that were left behind.

I know what it is like to experience loss. I know what it is like for your heart to be so burdened with hurt. I know fear, failure, and fatigue. I know what it is like to live without your 7-year-old child and entrust her to the care of someone that you do not even know. I know what it is like to live in the frustration, the “I do not know!” and chaos. I know what it is like to rejoice in the smallest victories that others call mundane. I know what it is like to have continuous thoughts of physically dying because waking up seems more like a death sentence than an enjoyment.


Through all of this, God did give me a passage in Psalms to cling to for strength and comfort. I say it was my Brooke passage. Now I say it is for both of us:

Psalms 121
I WILL lift up my eyes to the mountains; from whence shall my help come? My help comes from the LORD, Who made heaven and earth. He will not allow your foot to slip; He who keeps you will not slumber. Behold, He who keeps Israel will neither slumber nor sleep. The LORD is your keeper; The LORD is your shade on your right hand. The sun will not smite you by day, or the moon by night. The LORD will protect you from all evil; He will keep your soul. The LORD will guard your going out and your coming in from this time forth and forever.

Tuesday, September 29, 2009

why

is brooke in a faciltiy?
(i've been adding some of my book, "Little by Little" in the blog recently to express why we are where we are).

I started very basic steps with her to get her to verbalize. I got a cup of her favorite juice and filled it so that she could only get one sip. I gave it to her repeating the word “juice.” I did this over and over again. After a few days of trying and trying, I gave Brooke the cup saying “juice”—I got nothing. Then I held the cup out for her to grab, and with a gentle and quiet voice Brooke said “juice.” I was ecstatic! I called my friend on the phone and told her what had happened. She gave me a list of other words and other small phrases. It started out slow, but I saw progress when she began to repeat a few words when prompted.

Espe (a dear friend), mentioned to me the possibility of starting a program for Brooke. This would mean using some therapists and a consultant who lived closer to us. Brooke not only needed help with verbal skills, she also needed help with other basic skills. Espe taught me everything I ever wanted to know about autism. It took me a long time to find a consultant. Consultants design therapy programs for the client to teach what to work on and in what order. Eventually I found one who was three hours away. God sent two therapists to me, too. They did not know anything about how to teach Brooke, so I showed them what I knew. They took off with it—with lots of questions. We had an extra room in our house, so we made a miniature classroom for teaching her. Every moment, whether she was getting dressed, getting on the bus, eating at home, getting a shower, and even getting ready for bed, was “therapy time.” We had many days to make up, and every moment was precious time to us. Brooke did gain some skills, but she still had a long way to go. Each skill she learned was a victory; it is the little things in life I live by—even still to this day.
One year of therapy had ended, and the progress was minimal. Our consultant encouraged us to look at facilities for placement. What! Are you crazy? Me, place my seven-year-old little girl in a facility? All this work we had done, all the small victories that were won, and all the little things that were big just did not seem to be enough. At the age of seven, Brooke still had the mind of an eighteen-month-old baby. I knew in the back of my mind she needed help, especially behaviorally. Her behaviors had gotten so bad: banging her head, hitting the T.V., pulling pictures off the walls, eating objects that were harmful, and hitting her brothers as they walked by her.
One night, Josiah, our middle son, got up at 2:00 am. He had wet his bed and was crying out, “Brooke hit me, Mommy!” I assured him he was okay and showed him that Brooke was asleep in her bed. I knew then that this was not just about Brooke but about our whole family.
On October 1, 2004, we took her to The Learning Tree, a facility for autistic children, two hours away.

Journal Entry to Brooke, October 2004:
Today was the hardest day of my life. Leaving you at the Learning Tree was more difficult than I ever imagined. Before daddy and I left we knelt down beside you as you looked at family pictures from a photo album I made you and we just prayed over you for protection and thriving to learn. You have two roommates in your house. I miss you more than you will ever know. My heart literally aches for you and I have cried for over 50 miles thinking about what you are doing.

As we left Brooke that day, depression set in.

Monday, September 28, 2009

missing you

i'm having one of those days where i just want brooke home with us. we are on break from the children's home and there is just one person missing in our house....you, brookie.
Happy Birthday, Cherie'!!

Saturday, September 26, 2009

brookie cookie song

molly (a therapist that worked with brooke) made up this song up for brooke. we sing it to brooke all the time and she loves it! thanks molly....good times!

video

Friday, September 25, 2009

jesus loves me

every since brooke was born i have always sang Jesus loves me to her. she can be running thru the house and bouncing off the wall, or even having a 'hard' time at the doctors office...but when i sing "Jesus loves Brooke" she stops in her tracks and stares at me.
i remember like it was yesterday when she had her accident and was in the hospital i sang that song to her. it's a moment i think she and i will only understand.

tonight brooke spent part of the afternoon w/us. i started singing, of course, and as i did i sang "Jesus loves Brooke this i know...." i paused after "loves"... and she said "brooke". we sang i don't know how many rounds of that song and everytime she chimmed in and said "brooke!" precious....just precious.


everyday i fall more in love with my daughter. she is my hero!


Brooke, Jesus does love you. He said, "let the children come unto Me." there's no doubt He's got you baby. I'm almost positive you have a way of singing that song to yourself when i'm not there.

Thursday, September 24, 2009

hand over mouth


Journal Entry to Brooke, September 19, 2001:
"Today I’m hurting. This past March you were diagnosed w/autism and now they just told us you have Rett’s syndrome. I know you cannot tell us what you want and that hurts me. You cannot even talk but babble like a baby. I know you want to say so much, but we just don’t understand you. Hopefully it will come in time. I will wait for you, Brooke. I will wait."

Just remembering what it was like takes the breath out of me. We knew Brooke needed more than what she was getting, so we considered other options. Working at the Children’s Home was taking us away from the one thing that was needed. God moved us to Alabama, and Bill started working as an Associate Pastor/Youth Minister at a Baptist church close to Huntsville. The change was good for us. God gave us some dear and precious friends as we served at the church, and as we served and ministered, they took it upon themselves to minister to us as well (Hebrews 6:10).

Shortly after we moved, I went on a retreat. The speaker spoke from Job. On the last day she spoke of Job remembering his past and the gloriousness of it. Job 29:7-16 states:

"When I went to the gate of the city and took my seat in the public square, the young men saw me and stepped aside and the old men rose to their feet; the chief men refrained from speaking and covered their mouths with their hands; the voices of the nobles were hushed, and their tongues stuck to the roof of their mouths. Whoever heard me spoke well of me, and those who saw me commended me, because I rescued the poor who cried for help, and the fatherless who had none to assist him. The man who was dying blessed me; I made the widow's heart sing. I put on righteousness as my clothing; justice was my robe and my turban. I was eyes to the blind and feet to the lame. I was a father to the needy; I took up the case of the stranger. I broke the fangs of the wicked and snatched the victims from their teeth."

The speaker kept on reading and talking, but I could not stop thinking about verse 9, “and covered their mouths with their hands.” I thought to myself, what a unique verse…I have never read this before. As we neared the end of the day and the end of the book of Job, God spoke to me about His sovereignty. After God spoke to Job of His nature and His mighty power, I was as stunned as Job was. Job says to God, “I am insignificant, what can I reply to You? I lay my hand over my mouth.” I sat in the chair and felt as if I could not breathe or move. I knew that God was quietly breathing His fresh words of sovereignty into the recesses of my mind and ears. Romans 11:33-36 became such a source of comfort to me:

"Oh, the depth of the riches both of the wisdom and knowledge of God! How unsearchable are His judgments and unfathomable His ways! For WHO HAS KNOWN THE MIND OF THE LORD, OR WHO BECAME HIS COUNSELOR? Or WHO HAS FIRST GIVEN TO HIM THAT IT MIGHT BE PAID BACK TO HIM AGAIN? For from Him and through Him and to Him are all things. To Him be the glory forever. Amen."

He had given me Brooke for a reason. What reason, I did not understand yet. I got home from the retreat tired and absorbed in the teaching of the last two days. Brooke walked into the room where I was sitting; she backed up to me and sat in my lap. These moments we called “Brooke moments”—they were rare, and if you moved or talked it was possible she would get up. Needless to say, I was very still. She turned her head, looked at me, and looked away. Then she did the same thing: turned her head, looked in my eyes, and looked away. Last, she turned her head, looked at me, starred into my eyes, and gently lifted her hand up towards my face and put her little hand over my mouth. I melted in wonder, knowing that God had used that moment to tell me: “Dani, there is no reason to be mad at Me. I’m Sovereign, and I do not make one single mistake.” After that day I have never questioned God’s sovereignty regarding Brooke, and Brooke has never put her hand over my mouth again.

================

taken from "Little by Little"

Tuesday, September 22, 2009

beginning: elephants and africa


I love elephants! Even though you cannot cuddle with them, play tag with them, or sleep with them—and in spite of the fact that I have never had the opportunity to touch one, ride one, or even give one a peanut--I love them. The reason for this could be the connection they create in me to Africa. I love Africa! This continent amazes me. The stories I have heard—whether from missionaries, the television or the radio—have echoed my heart’s cry. There are certain countries that I would love to go to but have never had the opportunity, and Africa, by far, ranks number one.
In 1991 God called me into full-time Christian service. He used this verse to speak to me:


For none of us lives to himself alone and none of us dies to himself alone. If we live, we live to the Lord; and if we die, we die to the Lord. So, whether we live or die, we belong to the Lord. (Romans 14:7-8)

I just knew one day I would be able to go to Africa, spend my life there, and as I still say today, “die there.” My husband Bill was called into full-time Christian service after we married in 1995. I had my bags packed and ready to go. God, however, had His own plans for our lives already packed up.


I had been working as an artist for several years in Memphis, Tennessee, where I grew up. Working with 30 artists can easily make you seem a little unusual, and my co-workers sometimes referred to me as goofy and a mysterious person. God shook up my world, though, when He revealed to me that my occupation as an artist would be my ministry, my “Africa.” I did not like that very much until three people accepted Christ. I took the opportunity to show the Jesus film, and those around me sensed that I was there not only because of my artistic ability but also because of my relationship with Jesus Christ. We had our first child, Brooke, while I worked there, but I soon realized that I wanted to be home with her. So, I left my job to pursue a full-time career as a mom.


My next “Africa” mission fell quickly in our laps as we became house parents at the Tennessee Baptist Children’s Home. Bill and I sold our home and spent the next three years working hands-on with troubled teenage girls. The position was extremely challenging. I began to see the girls at the Children’s Home as another extension of my “Africa” vision. Our second child, Josiah, was born while we were at the Children’s Home. Two children and up to eight girls to feed, nurture, and love...kept us on our toes.


In the middle of our constant busyness, we started noticing some changes in Brooke around the age of two. She began losing her language, and she stopped making eye contact with us.
I remember it like it was yesterday, the day of her diagnosis. The paperwork, penned right there in black and white “mild mental retardation with autistic features.” I was at a complete loss of words. Occupational and speech therapists became regular visitors in our home in an effort to retrain Brooke’s mind. But in my eyes, it just never seemed to happen. Slowly, Brooke became the mysterious one in our family.


In a very real way, she became a reflection of the greater mystery of God. Deut 29.29 says, “The secret things belong to the Lord God.…” Brooke, my new “Africa,” had become my greatest fear, and my silent cry. I soon forgot all about the elephants that made me smile.


(taken from my book "Little by Little")

Saturday, September 19, 2009

great value


oswald chambers wrote: "satan does not tempt us just to make us do wrong things-he tempts us to make us lose what God has put into us through regeneration, namely, the possibility of being of value to God."


i have to admit, i struggle with knowing i am valued by God and, yes, satan does tempt me in this area. thinking on this just this morning, i thought of brooke. i wondered if brooke has this problem as others "watch" her or "talk" about her when she is out in public. deep down though i know she's a pretty secure little lady!


she knows the One who made her, loves her, and calls her by name.

brooke, yet again you have taught me a big lesson today on being valued. i love you!

new school

brooke is in a new school building. The Learning Tree purchased a new building that is just minutes from our home. yesterday i went to see her at the school just to let her have the connection of me and the school/her and the school. i couldn't stay long, but knowing it only took me 5 minutes (yes, lonna, for you) to get there....nice! [thanks to all the teachers/aides you guys rock! and the supervisor, your not too bad, either!]

this month has already brought many changes with all of us. i'm ready for the thrill ride of emotions to come to an end. however, i know there are many turns and loops to come.

sad i can't see you this weekend, brooke. i hope your mosquito bites are gone.

Tuesday, September 15, 2009

towards malta

spent most of the day in acts 27.
"keep up your courage, dani, for I believe God, that it will turn out exactly as i have been told...then the soldiers cut away the ropes of the ships boat, and let it fall away. paul was encouraging them all to take some food...for this is for your preservation; and having said this, he took break and gave thanks to God...they began to lighten the ship by throwing out the wheat into the sea."

this passage holds alot of truth to me for the situation i am currently in with brooke. i am at a place of making decisions that are filled w/grief that feels very much like a shipwreck. however, i was encouraged by what God laid on my heart today. i've struggled recently w/my belief as mentioned in the gospels, "Lord, i believe, help my unbelief." (this is not referring to salvation). I need only to listen to the voice of the Lord. there are many voices around me, but only His voice matters the most. i noticed in this passage it wasn't until after paul encouraged them to eat for their preservation (safety, protection) that they began realize their need to lighten their load. for me personally, God was telling me: "dani, drink/eat of Me, this is for your protection (brooke's protection) and I WILL LIGHTEN YOUR LOAD, you can't." we hold on so long, so often thinking our way is better, but it's just the opposite. how many times do i need to learn this, God? the soldiers were quick to thank God and i too am quick to thank God for continuing to deliver me from this shipwreck.
i love the next chapter v. 1 "and when they had been brought safely through, then we found out that the island was called Malta."(Malta means rest). I and others are being brought safely through this storm and i know in the end there will be rest/peace on every side.

Psalms 107. 28-30 "they cried to the Lord in their trouble, and HE (not me) BROUGHT THEM OUT of their distresses. He caused the storm to be still, so that the waves of the sea were hushed. then they were glad because they were quiet; so He guided them to their desired haven"

headed toward Malta.



Sunday, September 13, 2009

unexpected

my unexpected visit with brooke tonight was unexpected indeed. she had just gotten out of the shower so i asked to dry her hair. (take advantage of this moms! they leave home way to soon.) i love drying her hair. this was an unexpected little gift.
right before i left, her direct care staff told me she had been a bit upset today. (possibly because of the rain). then she added, i think she really must be missing you because she keeps looking at her photo albums. tears.

Friday, September 11, 2009

best friends

brooke came to the cottage today. it was like the good ole' days...brooke watched t.v. and i folded clothes. she has found a new interest in shows with spongebob. i have friends tell me that spongebob is autistic...whatever the connection, she enjoys him. today the show was on "best friends". after watching her watch the show i wondered if she had a best friend. i remember when i was her age. my best friend and i would write notes back and forth to each other, spend the nite at each others home, go to movies, and talk on the phone.
brooke has a little roomate at her group home...i've heard how they run and jump on each other's beds, watch tv together, and go to the park to feed the ducks. i'm grateful she has a friend to spend her time w/, someone who takes punches from her sometimes, someone who listens to the crying, frustrations, and laugher.

best friends are hard to come by, the faithful few, and dependable in good and bad times. God has a way of sending just the right friends our way and He uses them in our lives to represent Himself to us. He is our closest friend, extremely faithul, dependable in good/bad and He has written notes to us and urges us know Him.

Brooke, you are never alone, He is your best friend!

Sunday, September 06, 2009

butterflies and brooke


For those that are new to my blogspot i wanted to share what and why i have chosen to share my experiences w/you. I created butterflies and brooke in 2006. First is to share brooke's victories, struggles, and request as i as a mother see things from her point of view if one can do that. Second, i chose to be completely honest w/my struggles as a mom of an autistic daughter....what God is teaching thru her, what God is teaching me outside of our situation, and to rattle off things that are on my mind. In turn....it's sorta been like a journal for me personally....a raw expression to God that allows others to view my relationship w/brooke and God on the front page.I'm grateful to God that i can share my heart outloud and hopefully encourage others as we all struggle w/something of some kind. for those that view this on facebook my blog is: http://www.butterfliesandbrooke.blogspot.com/

Saturday, September 05, 2009

watching with Jesus

we are walking thru a journey with brooke i never intended to begin. for reasons of my own i will not share the details. this morning i woke up with some comforting words from the Lord and it was this:

stay here and keep watch with Me. matthew 26.38
our Lord is trying to introduce us to the identification with Himself thru a particular "gethsemane" experience of our own. but if we refuse to go, saying, "no, Lord, i can't see the meaning of this, and besides it is very painful."

i can't think about what i may lose but what i'm gaining and that is a more intimate relationship with God. i don't understand any of this, but i am responsible for what i do w/what has been given to me even though it is painful. i do choose to stay here and watch. thankfully as matthew 26. 38 says i don't watch alone. i watch with Jesus.

(in this passage Jesus is speaking to his disciples. thankfully i'm surrounded by other believers that are watching too. thanks, jw.)

Friday, September 04, 2009

family photos


i always love when brooke comes to the cottage for a short visit. it all happened yesterday! my sister and her family and my mom and dad where here all for a family photo. i'll be posting pictures when they get to me. it's always humorous to see how pictures are done w/families...ours far more! with our family every one gets put in place with the words "look only at the camera, whatever you do, look only at the camera!". in the background you'll see bill running and chasing brooke around the yard until finally he positions brooke at her "spot". this happens about 10-15 times to make sure brooke is looking at the camera...or like yesterday, to see if bill and brooke even made it in the picture at all. oh, the joys of family photos!

in the end, everyone is smiling.

Wednesday, September 02, 2009

given much

as most of you know my husband and i are houseparents. we care for 7 girls right now who need a place to live for a variety of reasons. i kinda think it is a bit ironic that i'm being a care-taker for girls when someone else is a care-taker for brooke (different reasons of course). yes, there are some days that this fact is hard for me to swallow especially when 1/2 of the girls i care for are brooke's age right now. i look at them sometimes as the girls play w/josiah and ethan (our boys) and wonder what if autism never would have "hit" our home. somedays, well most days, i hate autism.
we, as her parents, have been given a wonderful gift thru autism, so i can't really hate it that much...we've been given new ways to see things, patience, unconditional love, persistence, the gift of others, passion, the little things, wisdom, gentle smiles and soft hugs, a look into her eyes that dare you to dream and hope, and an extreme responsibility to speak on her behalf when she cannot do it herself. brooke, you will always have me and your daddy....and you will always have 2 little guys that will bend over backwards for you and you don't even have to say the word!

rett book

recently i received the rett manual and boy it's amazing complete! if you know anyone with rett syndrome please get this book. www.rettsyndrome.org to find out more information. i will add the beginning is a bit depressing but getting past that i find it extremely helpful.

this week my mom/dad and my sisters family will get to see brooke! it'll be a fun reunion.

God...you are very aware of our situation w/brooke. Come and speak truth. We need a word from You!