Merry Christmas

Merry Christmas!!!

we are enjoying spending family time w/one another. we are working at the home but brooke is over for Christmas eve and Christmas day! there is nothing like being together, no matter how short it is!

have a wonderful holiday!!

laughter

she cracks me up!!!

rough road

sorry for the lack of updating. i was a bit discouraged Thanksgiving and haven't felt like writing much.
Brooke did not do very well Thanksgiving Day. after 30 minutes of being here i was almost ready to take her back to her group home. we were on duty at the cottage so it was a bit hard to manage both worlds. she settled down for just a tiny bit but into the night we had to take her back to TLT so they could get her behaviors controlled.
it was hard and we were not able to take any pictures of the visit.
we had hoped to take her to Memphis next week for Christmas but have decided it wouldn't be the best idea.
we will be working on Christmas and do hope Brooke can come to the cottage for a few days in a row; however, she will not spend the night.

if you could remember her in your prayers as brooke continues to transition with new surroundings and people. pray also for her staff as they daily work w/her and all the children. they are amazing people!

soon...

and very soon, brooke will be joining us for a Thanksgiving meal.

it'll be the first time she'll be spending the night at the cottage...it'll be so sweet to have her here with us.

i'll be putting up some pictures later.

very thankful to be near her and my family this year!

some days...

are harder than others. tonight brooke cannot escape my mind and i miss her being in the same house with me. i'm grateful for the care she is getting and her improvement; however, the grief still remains at times.

just having one of those nights i guess.

another thing that has not escaped my mind is a story in the Bible. the story is of the woman that had a hemorrhage for many years and she reached out to touch the cloak of Jesus and she was healed. I love this story! what i've thought of is the fact that she pressed thru the crowd. i can just see her moving her arms like a swimmer doing brush strokes...digging thru the crowd to get to Jesus or get to Him enough to touch the hem of His garment. i love the idea of "pressing thru". i guess this is where i'm at spiritually...pressing thru to touch, get near, embrace, lean heavily on, clasp, and hold onto Him.

i'm mindless without Him.

small changes

boy, i haven't posted anything in a while....we have been very busy at the cottage and our laptop broke. bummer!

about a 1 1/2 ago brooke was put on some medication to help with her behaviors. as of a couple of weeks ago she completely came off these meds. brooke's behaviors have changed quite a bit. last saturday she was suppose to come to the cottage for dinner. i was encouraged NOT to get her, she was having a hard day.

this past week we were on break. she spent part of the afternoon and had dinner with us. it was good to have her in our home for a short time. as a friend says to me "i take what i can get".

yesterday she got a well needed haircut.
she will spend Thanksgiving with us next week and i hope she'll be able to spend then night.

I'm grateful this year that we live so close to one another. i love you brookie!

running

i love this picture....brooke's shadow looks like a cross and it appears as if she was running to it. i love the irony of it all!

i'm running to the cross with you brooke. thank you for your gentle reminders.

together

lately i have really been longing to see some special friends. grieving if you will because we live so far from one another. i love what paul says in Philippians 1:7 "i long to see you with the affection of Christ Jesus".

tonight i was reading amy carmichael's "Edges of His Ways". this is what i read:

2 thess. 2:1, "our gathering together with Him."

We may be separated now, we may see little of some whom we want to see often. there are many partings in life; never once are we promised the joy of long continuance together here, but "our gathering together unto Him" is a certain joy. everyday as it passes brings us nearer that day when we shall gather together unto Him. if it can be such joy to be together here, what will it be to be gathered There?

I enjoy reading things from amy! i love my friends and i love my family! i can't wait to be gathered up with Him. and when i am gathered with Him with brooke i'm wondering what her first words to me will be...futhermore, i'm wondering what her first words to Jesus will be!

what a moment....wouldn't you like to be there?

missing you

i miss you brooke...

you'll get to spend the night with me soon!

raising my white flag

What a journey my daughter has brought me on. Boy, little did I know. Little does she know how she helped me find the one thing that was needed the most—Jesus. Brooke is not only my daughter but a gifted teacher. She has taught me many things in her short lifetime about myself. Some I have wanted to learn, and some I have fought with clinched fists. In the process of it all, she has been God’s special instrument in my life to ultimately teach me how to wave that little white flag up in the air. And when I put myself in that selfish position of control again, I know that with just one look in her innocent eyes God will remind me—remember to surrender.

a good cry!

Brooke has had Ci Ci as a teacher pretty much ever since she has been at TLT. brooke recently moved to another classroom in her school. i asked about how she was adapting to the new move...knowing any move is aways a trigger for anxiety. one of her direct staff told me she hollered out, "Ci Ci, where are you Ci Ci?" amazing to me and others that know brooke. from what i hear brooke never once said Ci Ci's name in the classroom.


thanks ci ci for your dedication to brooke and the rest of your classroom.

remembering

Little by Little (cont.)...

Early 2008 I got a chance to go to visit my sister, Cherie’, in Colorado. I was amazed at the pine trees and how much snow they can hold. My sister later told me that softwood trees such as pine and evergreen can bend under the intense weight of the snow. However, hickory and oak trees can break in the storms. “God knows how much we can handle.” I have heard it said over and over in the course of my life. However, living it is another thing.


Like an elephant remembers, I too cannot help but remember all that Jesus has carried me through. I remember how God has rescued me from death. I remember the lives of others I so badly messed up. I remember the big, the little, and the profound. I remember the bondage I kept myself in, and I remember the liberty of letting go. I remember the laughter and the tears. I remember the ones that prayed me through the most difficult moments, moments I choose to forget. I remember the God who saved that pitiful teenage girl of myself, so longing for love. I remember when she received that love. I remember the pain, grief, sorrow, and suffering. But oh man, I also remember the moment of being fully alive and awake while still living with my present suffering.

a new beginning

Little by Little (cont.)...

Coming back home from the hospital was like entering a war zone in a land of giants. I had been in such a safe place that the real world was almost too much for me. However, I had my husband and a couple of close friends that stood beside me and held me accountable.
Brooke was adjusting okay to the new facility. At the time we could see her each weekend. We visited her when we could, which was almost every weekend. After the 45-day trial period, Bill and I had to make another difficult decision about whether or not to put her in permanent placement again. In August 2007, we made the decision to move her. She moved into her new room decorated with butterflies. The visits changed; we could only see her or get her for home visits once a month. This was quite an adjustment for our whole family. The boys know she is gone and miss her. And as far as Bill and I go, we treasure each moment we have with her until we see her again. Each time I leave Brooke, I hug her and say, “Brooke, Jesus has got you, baby.” With those words I walk away (each time trusting God).
I continued to struggle with my own life. Battling daily with my medication addiction, I seemed to mess up everything and everyone I loved. The giants of the past and present were winning every war and not only did I feel defeated, I looked defeated. Trying to do things on my own was a hard and a very lonely road. I failed to give to God what He had wanted all along--me.
However, it was through my aloneness that I finally came to the end of myself.
One, ordinary day, I desperately reached out for Jesus’ cloak for healing. He responded back with forgiveness, abounding grace, mercy, unending love, and healing. (Matthew 9.20). How selfish I was to think I could have lived my life without Him in complete authority. It finally took my surrendering to His authority to bring me much more than freedom—it gave me life. It gave me the chance to breathe again. I was sick for a long time, but now I know what it is like to be well and alive. In his book, Recovering From the Losses of Life, Norman Wright says, “Trying to control your life imprisons you to need to be in control. Trusting in His control leads to a life of freedom rather than a life of bondage.” I found this to be so true. God delivered me from any form of medication and any desire for it! According to Dr. Henry Cloud in Changes That Heal, “He has always been a releaser of the captive.” (Psalms 56.13; 2 Timothy 4.17-18). Hallelujah! What a Savior!
I admit, I do not understand all my circumstances. If I did understand them all, would I not be God? I am aware that Brooke may never come home to live and that my situation may never change. However, I do know that my situation has strengthened my faith in Jesus Christ. It is because of Him I can move on and will move on.

possible

this past weekend we had got a special privilege to go deep sea fishing with our 8 girls, our boys, and about 100 other kids in the southeast region children's homes.

early saturday morning we headed 25 miles out to sea (yes, i'm still feeling a bit sea-sick). we caught about 150 fish. i felt like Paul on a missionary journey. it was great. not only did we catch fish, but we taught/showed our girls and children we had never met how to "feel" the bite and reel in their enormous fish (some being almost as big as them).

on our easy ride into shore still several miles out, i was enjoying the wind in my face with one of my girls when to my surprise we saw a butterfly flapping his little wings over the gulf. it was just an amazing sight. i did not have my camera to capture it so this picture will have to do. in seeing this little guy i was in thought all the way back to the dock.

i've had some pretty tough weeks lately but this little guy gave me some hope. he seemed not to struggle on the outside and he seemed like he had not a care in the world being 25 miles away from something to land on. he just kept on flapping his wings...hoping he would get somewhere. pretty impressive to me. sometimes God gives me a tiny picture to hold on to.....and out of nowhere this little guy showed up to remind me that, "all things are possible with God".

i'll be holding on to this truth today!

hard

the past week has been difficult. i have no words today.

brooke has been sick the past couple of days. i will see her on sunday.

Little by Little, (cont)

The stress and anxiety of getting Brooke well had taken the better part of me. After April 2007, things for myself had gotten worse, although I never did see it. I was too selfish in my addiction of over-medication to see anything differently. Depression had influenced my whole world, and I literally wanted to just end it all. My hope had faded in a fog, dreams shattered into dust, and my faith was challenged.
In June 2007 Brooke’s behaviors had gotten worse again, and we had to put her into a hospital in Birmingham. Walking out, leaving her in that confinement tore at my soul. I mourned for her.
It was later that week that she was put into Glenwood, a facility for autistic children, for a 45-day trial period. This put me over the edge as I saw Brooke differently than I had ever seen her. She seemed so sad.
I woke up soon after that transfer and told Bill he needed to put me into a hospital too. I needed help. After I got in, I wanted to get out. My physical health was weak, and I was low in many minerals. After being accustomed to having as many pills as I wanted, not having any more made me physically sick.



Journal Entry in hospital:
Lord some things are just too numerous for me now, and You know that. Give to me what I can stand until I can be fruitful again. I know I have put so much time and emotion on Brooke that it is destroying my own life by self-medication and selfishness. I know I need to trust you little by little. Really that is all I can do right now. It does not dismiss the pain, and it does not dismiss the loss. I need Lord to release the responsibility into your hands because contentment is a matter of accepting what you have for me. Help me to have Your thoughts--to have a correct thinking pattern than what I have had for many years. I confess that I have fought against what You have given me. Grant me the courage to be a servant. Oh God, I long to be faithful to You. I accept my assigned role as a gift. Teach me to “cease striving and know You as God,” little by little.

1 Timothy 6:15 “…God…is the blessed controller of all things, the king over all kings, and the master of all masters.”


God, do not let my pain be wasted.

encouragement

One day, one of Brooke’s therapists came in to work. I told her, “It has been a roller coaster ride today.” She looked at me and said, “But the roller coaster will stop.” It always does stop. Maybe not in my lifetime, but our Savior will come. There is going to be a day when my dreams will come true, when my hopes will embrace me, when my earnest desires will suddenly be fulfilled, and there is going to be a day when Brooke will truly be embraced by her groom, her beloved, my beloved Jesus Christ. Until then I am encouraged by this scripture in 2 Corinthians 4:16-18:

"Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of Glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal."

Now who wants to miss that roller coaster ride?
===============

i have to pause in my story to encourage you! i hope that you will not miss the ride Jesus desires to take you on. i hope by any means it is not like mine. however, i do hope it results in a relationship with Him. He loves you and offers us more than we could ever imagine. Believe in Him today...and get on that roller coaster!

you will not regret it...

roller coaster ride

The thrill of a roller coaster excites me. At sixteen I got my first job at an amusement park. I remember riding the coaster and getting off just to get back on again because it was so much fun. It did not matter how long the line was either. I wanted that thrill, that rush, and excitement.
Although I was glad Brooke came home, it was a roller coaster ride that I wanted to get off. I screamed as I headed toward a downward spiral. I felt the excitement of a new experience. I laughed out loud with a big silly grin over the smallest things. I clinched tightly to the head bar that had secured me in. I wanted to close my eyes and pray for God to remove this from me and to make it stop. The moment Brooke walked back into our home, she became both the teacher and the experiment as we started the Bio-Medical treatment. We became the student as we watched her, learning from everything she did or did not do. From her medication to supplements to fixing two different types of meals three times a day, it was always up and down.
The whole family, including the therapists, had good days and bad days. The adjustments never really subsided. We, too, never knew what kind of day Brooke was going to have. Sometimes the stress level in the home was so intense all we could do was get in the car and drive around trying to make everyone happy. Do not get me wrong; there were days that were so peaceful. Brooke was learning new words, her therapy was going well, and her social skills were improving. However, our situation was so unpredictable. I was unpredictable. I was on an emotional roller coaster ride. Adding to that, I broke my wrist in April 2007, and the easy access to pain medication deepened my addiction.

one year home

Little by Little (cont.)...

"Excited yet nervous, we brought her home in March 2006 to start a new treatment called Bio-Medical. What a reunion it was! We maintained everything she did at the LT and stuck with her program at school and home. The adjustment was hard on everyone. It took quite some time to get in a routine. Someone always had to be watching Brooke. Bill and I traded out to ease the stress.
Bio-Medical treatment is the process of pulling heavy metals from the brain, known as chelation. It includes a regimen of vitamins and minerals and a very specific diet excluding all wheat and dairy products. The treatment can be very hard on the organs; especially the kidneys and liver, so periodic checks had to be made to avoid damage.
A general side effect of chelation is recurring headaches. Brooke, of course, cannot tell us when or where she is hurting, so her pain would often be displayed in her behaviors. Tell-tale signs would reveal the stress it seemed to be bringing on her body, like an overall heavy appearance. The dark circles underneath her eyes were another indicator. It is a very difficult thing as a parent to know that the one thing that may be helping your hurting child the most is also the thing that seems to be adding to her pain.
It did not stop there. The diet was also a part of Brooke’s treatment. It was a gluten and casein free diet, which meant all wheat and dairy products had to go. Yes! This made it a real challenge to cook even the simplest meal. Supplements were also a part her diet. These included vitamins, minerals, enzymes and probiotics—and a lot of them. Getting Brooke to take the supplements, and on schedule, proved to be a challenge topped only by that of preparing meals that were appetizing enough for her to eat.
We then had to start her behavior program at home. We had gotten some therapists from a local company to come to our home. I had the opportunity to choose the therapists, so I started asking around. I found three friends to help us out. Even though it was a huge help, there was no privacy in our home anymore. At the Children’s Home I had become accustomed to our house being a revolving door, and that is how it became in our house again. The strain of finances for the Bio-Medical treatment and the stress of Brooke being back home was making things worse for me. I began secretly over-medicating again and constantly crying because of my anxiety and depression. I became emotionally unstable, yearning for rescue."

(picture was taken last week)

my Controller

Little by Little will continue later.

i cannot believe it is october already! this time, years ago, brooke went into TLT placement for the very first time! i do remember that moment like it was yesterday...brooke was a 7 yr old little girl. now, she still is in TLT in a different city. what makes it a bit easier is now we live in the same city.


i've been reading, hearing, seeking, considering how much God is the blessed controller of all. i cannot begin to explain how peaceful that verse brings to me. some people may use the word, control, a bit flippantly. but, in regarding to brooke, and basically everything I am, I cannot be any more serious. i'm hopeless and helpless without His control. everyday i see more and more just how much i'm in need of Him...and especially regarding Brooke. i keep having to re-learn this lesson.


what's a bit funny to me is brooke doesn't seem to have a care in the world. oh, she may care about what she'll eat for breakfast (biss-cuit), or maybe if she'll have to work on school stuff, but she doesn't have to deal with life's stress like you and i do. she just seems to go about her day depending on others to help her (bath her, dress her, get her from place to place, fix her food). she is NOT in control. she can't be. she doesn't know how. i mean, really. ultimately, she has to rely on someone to control the environment she lives in. i'm a bit in awe of that. i think you get where i'm going. once again brooke, you are my teacher.

"He must become greater, and i must become less"

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.

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.

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'!!

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!

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.

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"

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")

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.

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.

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.

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!

family photo

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/

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.)

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.

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!

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.

fairHOPE

i love this picture of brooke.

i sure wonder what she is thinking as she overlooks the fairhope bay.

this picture cracks me up! she was so giggly...

nothing like a daddy hug

no one can sit w/brooke like this for long periods of time

except for ethan and josiah. if i were only smaller!

ethan sure loves his sister.

nothin' like a brookie-cookie kiss. you never know

what to expect.

peace!

we had a great time at the fairhope pier.

her leg is doing good w/o the help of the "hot" boot she wore.

she is in school daily now and so that is taking some adjustments. Sunday night my parents will be here so brooke will come to the cottage for a bit to visit.

i love you brooke!

Jesus has got you!

a new day

the boot is officially off and her leg is healed "100%", her doctor said at her appointment today! this is a new day for all of us, especially brooke. brooke, you are my trooper! i love you more than you know.

her doctor appointment w/her rett's doctor went well. we were told it is likely brooke will not go into stage 4. this was good news. we go back in one year. thanks for her staff for a crazy day on the road, in the office, and at chick-fi-la.

she will come to the cottage tomorrow for abit of july 4th celebration.

(those are my clothes she is wearing!)

crazy...

i cannot believe i'm buying clothes for brooke--that fit me!

we go to b/ham friday for her Rett's appointment. july 3rd...just maybe she'll be w/o her boot on her leg. we will see. i'll show recent photos soon.

all smiles

i love this picture! (taken about 1 month ago)

life...

...has been a bit crazy, sorry for the lack of updates. i hope to get better at this! brooke has had an allergic reaction to something this past week. underneath her eyes were really red and dry looking. she is doing better. it was a bit strange. her leg is still healing. she has an appointment on June 18. I hope the boot can come off...we will see. (i'm ready for her to go to the beach w/us!). I'll be updating new photos soon. she got her hair cut today and i'll be visiting her today!
she also has an appointment w/rett's doc in birmingham later this month. i'll be driving up w/her staff.

growing up

this picture was taken years ago in Memphis when we were at the children's home. as a friend of mine and I were talking...i found this picture to be a bit ironic. The road she is sitting on reminds me of the journey she is on, up hill, windy, down hill, rough, smooth...
she's growing up and we will continue to walk down every road with her. I love you brook"e".

at the cottage