Saturday, July 18, 2015

shower time


There are rare moments in life when you hear the Lord whispering in your ear. Yesterday, was one of those sweet encounters and almost visually speaking.

Yesterday I decided to get Brooke for a visit at the Children’s Home. It was so hot outside I knew we would be spending most of the day inside allowing the kids to play games, puzzles, or just watch a good movie.  When I picked her up from school it looked as if she had had a rough, hot morning.  I knew a good shower was on our agenda.  After we all had lunch I told Brooke, “Let’s go take a shower.” She walked into the bathroom to get ready. For those who are unware Brooke cannot shower herself.  She does know some self-help skills and shower time is one we are working on.  I wash her thoroughly, shampoo and condition her hair, shave her legs, then I allow her time to just let the water fall on her.

After I got her all clean I sat her down while I started gathering her garments, one by one, to put them on her. (I think you get the idea). I had noticed while I bathed her that she had many sores/bruises so I knew I wanted to put some ointment on her to help them heal. I grabbed my Neosporin and one by one started applying them on her arms, legs, ankles, and wrist. Then, it happened…..as if Jesus was standing in our small bathroom whispering over my shoulder to Brooke and to myself. His voice was so clear as He said to me, “This is exactly what I do for you, Dani.”

Tears whelped up in my eyes as I re-thought the whole process of bathing her and caring for her needs. In such an intimate and personal way Jesus meets us where we are and cleanses us.  We are so helpless and without His touch we cannot be clean, we cannot be healed, we are incapable of doing it ourselves.  He not only leaves us there cleansed, but He comes closer and applies His touch to heal our deepest sores/hurts/scars, those visible and invisible.   

I left that bathroom different than I entered. It was a beautiful picture of His loving-kindness and in the most vulnerable and intimate way.

He says to us in Jeremiah 31 to expect love and more love…and yesterday was no exception. He is the balm of Gilead and He has promises us that He will heal us and He is mighty to save. (Jeremiah 17:14)

Thank you Brooke for being so vulnerable and for being His instrument once again.

Thursday, May 15, 2014

blessed are those...

The Lord has given me a great promise (see 'jubilee' post) that Brooke will one day be back home with us. as a mother, I yearn for that day! this morning when I woke my heart was heavy for this promise. I have learned to be content in my present circumstance (Phil 4:11). however, there are some days the tears flow and the longing awakens something within me. today, was no doubt....one of those days.

I love the unique gift of friendships! The Lord knows what we need and when we need it. when a friend prays for you on your behalf when words can't seem to escape your mind....there have been those times when friends reach the throne of God to help in the time of need. The Lord has special ways to comfort our weary hearts.

coupled with that, it's sweet when complete strangers approach you too. this afternoon a lady at SAMs asked me what my necklace said. I said "a mother knows the words that her child cannot say". after I told her that my daughter had autism, she said.... "I'm gonna pray for you, because that's what it is about, that's how we do things."

I smiled and told her thank you. I was so thankful that thru our small conversation The Lord comforted my heart.

Blessed are those who mourn, for they WILL be comforted. Matthew 5:4

are you weary and mourning today? He is faithful in His love and will comfort you in due time.

Sunday, October 27, 2013

caterpillars and butterflies

I have 2 tattoos on each of my wrist. one, ebed (Hebrew for slave to Christ), and second, a butterfly (in flight). my butterfly tattoo, created by a local artist, was engraved in my wrist for Brooke.

someone recently asked me what they both meant and I love sharing the stories of each of them. I shared with her that after the butterfly tattoo was done weeks later I realized that in the engraving was a capital "B". I thought that it was super cool that the artist designed it that way and without her knowledge of my daughter. several more week later a dear friend of mine called me after looking thru a James Avery Craftsmen magazine and told me that I needed to look immediately at the necklace called "Mother's Love". I was blown away that the same symbol in the necklace was also in my butterfly tattoo. in telling my story to my friend, I told her I had no idea of either symbols in the tattoo...but that the reason I chose a butterfly was because of her name. Brooke's middle name is Renee', which means "born again". [Born again can be recognized as the symbol of a caterpillar turning into a butterfly]. my new friend quickly said, "I didn't think you were going here with that story. Do you know how you say "caterpillar" in Latin"? ummm, well, no. she then told me, "brookum", actual translation, "bruchum".

I was blown away as I think my jaw hit the floor. Who knew when we named brooke, almost 17 years ago that her name would have such a powerful meaning. a caterpillar changing into a beautiful butterfly. proves to say that there's really a lot in a name...

I've always thought that when she get to Heaven the Lord will give her a new name. I can only imagine what that "new" name might be. For now, she's learning how to fly.

Saturday, March 30, 2013

running for a reason

i consider myself to be pretty athletic gal. when i was younger i ran track. 50 yard dash and so on. i was an ok runner, but i loved to run. i played basketball in elementary and then a bit in high school. then i played softball. i was a catcher for our team. now, at 42, i feel myself getting up from a fast pitch and throwing it down the straight line to second base, in an attempt for an easy out, and my knees hurt. ha!

after you have children you wonder what sport will they play. when i had brooke, it crossed my mind she would be a runner. after all, she had bill's legs. now, i know she will never run (like you and me). she has other traits that i find courageous and that i could never do...so im ok, now, that she will never run.

i'm blessed to know certain people in my life. some i've never met, or will meet...but have had the unique experience to find them thru this crazy computer. it's not that they aren't real, but just the opposite...they are very real and raw and vulnerable people. amy courts is one of those. amy is an artist. she writes/sings...and with her music she has brought me into the presence of God. rare.

a few weeks ago, via facebook, she sent me a PM that stated this:

"you may or may not know this, but i've joined a group here on FB called "i run for Michael"...we pair runners and athletes with special needs people who can't or don't or won't be able to run like we do...and we run for them. for us runners, it just gives us something bigger to run for...it gives us a person. anyway, we are working on pairing up some more runners but we need more kiddos! I immediately thought of you and your incredible kids who have autism."

wow! was my immediate thought. i went to the site and found runners or walkers or others that were doing cross country and that were running/doing for a purpose, for a person that could never run. incredible! i told amy, "yes! find brooke a runner."

within hours we had a match. Brooke's runner is a lady named Yvonne. Again, its funny how the Lord knows just who to send in your life. Her story is one of strength, courage, grief, and passion.

i just had to express this story. it's one of selflessness and gratitude. it's one of strength and dying to self. it's one of honoring another.

and, personally, as a mother of one that can't run...i'm humbly grateful.

it's more than a gesture to me.
it gives life.
it gives hope.
it offers a chance to feel the wind in your hair and have a fresh breath of air in your lungs.

Tuesday, March 05, 2013

sweet 16/march 6

Brooke,

God has continued to grow you into His masterpiece...and what masterpiece you are. I love how, with every stroke He formed and made you. You are His...and I'm thankful He gave me you. 
In these past 16 years you have taught me some valuable lessons. You exhibit strength, beauty, loving kindness, patience, dependency in your creator, joy, peace, and HOPE. 

[with just glance in your eyes you give me energy and strength. holding your hand I sense your passion. watching you sleep I see your at peace. seeing tears in your eyes i know your struggle will one day end.]

you simply amaze me! 
I'm a better woman because of you. 
I love you brookie!
happy 16th birthday to my sweet girl!

momma. 

Saturday, October 27, 2012

the move

as of a few weeks ago, Brooke has been a resident at TLT for 4 years now. in the past four years she has grown into a beautiful, courageous, determined, brave, strong, and lovely lady. 
this past week, Brooke moved, but just into another group home. the move is going to be good for her. her school opened up a new home to accept 2 new girls. so, Brooke now has new roommates. I've already met one of them. I'm excited for her and her family!

however, you know me, I'm a thinker. for 4 years Brooke has lived with 2 of the greatest ladies. even though I told Brooke she was moving I knew she wouldn't understand it fully until the move occurred. it just made me think though, what if I moved away from someone I was used to seeing everyday for 4 years. (grant it, they will continue to see one another at school/some weekends). I know that that would make me sad. brooke is not one to express emotions much, so I tend to forget, emotionally speaking, what all she goes thru in a day, what she thinks about, who she misses, and all the other stuff girls go thru. 
tonight, as I left Brooke I leaned in and told her like I do every night I see her, "Brooke, Jesus has got you." after I said it, I said out loud again,  "Brooke, Jesus does reeeeaally got you." 

He holds her tears in His bottle, prays for her when she cannot udder a word, walks with her, sings over her, embraces/speaks to her while she sleeps, and provides for her needs without her even knowing them. 

I don't know if Brooke misses her little friends, I know I sure would. but, what I do know is.... Jesus does have her and He quickly desires to fill the void. 

at that moment, The Lord spoke to me and reminded me of that simple truth. 

Wednesday, June 13, 2012

peace on every side

this past saturday we took brooke back to the group home. it was raining so badly when i drove her to the house. after caring for her while at the hospital and at home my heart only grew stronger and sweeter for brooke. i dreaded the day. the rain outside became the condition of my heart.

after getting her in the house, she went to her room, turned around, and began walking towards the door to go outside. i can't tell you how many times we redirected this so she would settle in on the couch or in her room. i pulled out books or movies to help her settle down, but she was began bitting herself and became verbally  upset saying, "i wanna be with mommy," or, "i wanna see mommy." needless to say, this only made the rain pour harder within my spirit. after signing information and sharing details, i walked out in the pouring rain not caring whether or not my clothes were drenched.

i got in my car and began praying for peace for her. i remembered a passage of scripture in II Chronicles 20:30 "the Lord gave them peace on all sides." i prayed that passage over her and drove away. thankfully we had plans to hang with friends for the day, so, once i got home we left. my heart was heavy throughout the day, but the Lord sustained me.

on sunday, i went to see brooke again at the group home. it was still raining in our area, but it was much more of a sprinkle. when i walked into the door brooke saw me, grabbed my hand, and walked me to the door yet again. i died inside. i wanted just to leave with her, but i knew she needed time to adjust and i needed time too. earlier that day at church, we had heard such an encouraging message about, "be still and know that I am God." he talked about the the word, "still" actually meaning in the Hebrew the idea of your hands being by your side. in the sermon he also mentioned the very passage i had prayed over her in II Chronicles 20. i was amazed, but at the same time i left assured that God indeed would give her "peace on every side." thinking on the message, i left the group home once again but this time...with a peace of mind and my hands by my side....knowing that He was God and He was at work.

Brooke has done really well during her recovery and she continues to improve behaviorally. We have heard she has little to no behaviors throughout her day. was it that she was hurting so badly before her surgery that she was displaying bad behavior as a way to communicate? who knows, really. i do know we are in good place with her, and that....gives me peace on every side.

thank you for your constant prayers and love. i once heard, "rich is the one who has a praying friend." Brooke is very rich!

Saturday, June 02, 2012

update

Brooke got her staples out on Thursday. she did really well sitting there watching her favorite show. afterwards we treated her to a slushy.  apparently, the staples were very bothersome to her because she isn't so insistent on scratching her back.  Brooke has been off pain meds now for 3 days and seems to be ok with no pain. she's been very active, going on walks and pacing in the hallway. bill and I took her to fairhope the other day. she enjoyed the ride and the walk.  she finally slept longer than 4 hours last night. after going to bed around 8 last night so did I. we both slept til 3:00. she drifted a bit after that, but nothing to be excited about. her behaviors started picking up and I believe it kept her up and me.  we are still tackling her behaviors (slapping face). what a beast this is. this behavior is more bothersome for me than any other she has had because it targets the face.  Monday, she'll start going to school for a couple of hours to get her back in the swing of things. June 9, saturday, we will take her back to her group home. this will be a tough day.. prolly more for me than her. all in all, she is a trooper, a tough cookie and an amazing little lady. Thank you all for those that have been praying for us. thank you for the wonderful meals and sweet treats. all have been such perfect timing and a gift from God. 

Tuesday, May 29, 2012

long day

our day started at 3:00am. Brooke woke up and didn't go back to sleep. she has been very restless and agitated.  come 7:00a.m. I was feeling the effects of just 3 hours of sleep. I knew several friends had been praying, and knowing I needed the encouragement to finish the day and finish well I called on them for help. by 1:00p.m. brooke was less frustrated. however, just over an hour a go... she has been extremely upset! I gave her some loritab thinking she was in back pain. she's very aggressive and verbally upset (yelling). she still has not slept since 3am.. and neither have we.  i just hurt for her...wanting her to be comfortable, at ease, and especially I want her to sleep. she has been thru a lot in the last week but I'm confident the Lord is listening..and in His timing will make all well. 

Monday, May 28, 2012

whatever it takes

recovery with brooke continues to be a constant struggle. between her behaviors hitting her face and her wanting to get to her back (partially because of a rash due to the self-adhesive dressing) it is a constant redirection, or holding her arm temporarily. today,  for example, after waking up at 5am, bill and I were laying in the bed with her consoling her, holding her hands until she drifted off to rest again. she ate some breakfast which consisted of fruit, yogurt, and a slice of pizza. she kept wanting to touch and scratch her back and hit her face. it was challenging. we gave her a shower to make her feel better then, the LT staff came at 10;30 and stayed til 1:00. during this time, I got her lunch together, did laundry, and sat in my hammock for a bit. our afternoon was a bit more in tense for she got more unsettled, so we gave her some medication to calm her down. I made her dinner, she ate well but behaviors have increased again this evening,  I cannot lie, at times, it is extremely stressful and I wonder if we made the right choice of going thru with surgery. you question everything at times like this.  on a brighter note.. she is by my side and I desire to do everything to help her get thru this...and I will do whatever it takes. 

Sunday, May 27, 2012

collapse

every now and again I see how helpless brooke is without someone with her at all times. a few years ago our whole family, including brooke, went to Nashville. while visiting, we went to Opryland Hotel. the hotel is my moms favorite, so we enjoyed walking around seeing shops and enjoying each others company. we decided to take the elevator up to another floor and before you know it Brooke had gotten in the elevator and the doors shut!  within seconds my mind raced to what could've happened when the doors opened again on another floor without us.  she wouldn't know where she was. she wouldn't be able to say who she was with or how to find her family. and at the time, she would not have been able to say her name to those trying to help her. helpless. however, we quickly pushed the button and the doors opened before it speed off to another floor. I remember grabbing her, holding her, telling her it was "ok." not only is Brooke helpless, but so am I. today a dear friend said something to me that reminded me of my helplessness. the phrase she said was, "collapse in His arms." being the thinker that I am I looked up the word "collapse." Webster puts it this way, "to fall abruptly, to break down completely,  to cave or fall in, to fall helpless." I couldn't help but see myself, or those that know Christ, fall helplessly in His arms..almost like i was fainting.  I love the idea that Jesus is my all and all. I love the fact that when I fall helpless or when I'm wondering helplessly as Brooke does...that He is there without any hesitation. and, in doing so there's no need for me to speak or utter a sound...He knows.  its then He grabs me, holds me, and tells me, "you are ok."

Saturday, May 26, 2012

thank you

Brooke has done so much better being at home. we are thankful/grateful that some of her support staff are helping out daily. her school, the learning tree, are coming over twice a day for a few hours to sit and help her. someone needs to be watching Brooke, even while sleeping because she still is exhibiting behaviors (hitting face) and wanting to scratch her back. speaking of which, Brooke has developed a rash on her back, either by the adhesive or iodine. it really is irritating to her. yesterday, after putting some cream on her back she hollered out, "thank you!" it was so appropriate and it made me smile and laugh:) I bought some new dressing for her back, so hopefully, coupled w the anti-itch cream she will be doing better.   she slept so well last night. it was the best sleep she has had since Monday. rest can do a lot of good, I've heard:) she woke up briefly, lifted herself up, got out of bed and went to the bathroom. I was shocked! she is still asleep:) today, we will do more waking and sitting, plus, the doctor said she can take a shower!! she's been scratching her head so much...I know she'll feel tons better afterwards.  I didn't really tell you much about the actual surgery. dr. nimits said he was able to correct 80% of her curve with the placement of 2 rods. she did not have to have any blood transfusion.  that was huge! she lost a bit, but they were able to save hers. all in all, the surgery went really, really well! I'm so thankful for skilled surgeons and nurses.  I'm so content caring for my girl. she is the brightest spot in my life and I love her dearly. Im so thankful for the Nelson's, the M's, and Rene and Patrick for taking care of our job responsibilities at the ABCH so we can be with Brooke during her recovery. I love you all. 

Friday, May 25, 2012

home

it's funny to me that the day surgery was originally set is the day we came home. it sure is good to be home.  these past couple days have been a journey. yesterday Brooke went to a room. we were suppose to stay there til Saturday or Sunday; but, don't tell Brooke she'll change it on you. last night she couldn't rest. her behaviors (from being in a different place) were making things very challenging. since we could not use wrist restraints her face, her arms, my arms, hands, and the nurses were getting a beating. it got better once she went to sleep but come "vital rounds" at 2:00am she got heavily upset. this in turn got me upset at the circumstances because she just doesn't understand. by 3:00 she was still going strong. after trying everything to get her comfortable I asked for some pain meds for her. at 4:00 she is still upset and gets another round of medication. by 5:30 I am mentally, physically exhausted. I asked the nurses for a transfer back to ICU. knowing her hands would be restrained and she wouldn't be harmful to herself, most importantly, and to others. they told me it couldn't happen. she was stable enough to be on a regular floor. however, they would get in touch with my doctor and ask for a transfer.  long story short...brookes doctor said "you are free to go! she is medically stable enough to leave."  wow.  we basically pulled everything together and got our orders to leave.  the ride home was good. Brooke walked right in and laid in the bed. her words, "it's ok." (theres much more to share, but later... now we rest)  thanks for your prayers! 

Thursday, May 24, 2012

walking day

Brooke had a good day yesterday. with help of a physical therapist she was able to sit on the side of the bed, take 2 steps, and sit in a chair for 30 minutes. we had hardly any behavior problems with her yesterday. go Brooke! she has continued to say, "it's okay" throughout her day; however, yesterday she formed a sentence of "I wanna go". I love those random sentences that are just too far in-between.  yesterday afternoon she took a few bites of solid food. even last night she had a little bit of food.  last night seemed hard for her. she was moaning a great deal so they gave her extra medicine to ease the pain. she didn't sleep really well last night.  this morning they removed the draining tube from her back which made her pain increase. they gave her extra medication. bill was here last night and early this morning.. he told me as we switched out that she kept asking for me. that's just precious.  today is a big day. she'll start walking today. I can't wait. sorta like your one year old learning to walk-for-the-first time-can't-wait. after she walks she'll go into a regular room.  pray that the Lord gives brooke understanding, peace on every side and that we have little to no behaviors as we transition to another floor.  thank you!!

Wednesday, May 23, 2012

today's goal

today Brooke is doing really well. I think her fear from yesterday has escaped her and she is much more at ease. however, today's plan is to get Brooke sitting up in the bed and possibly taking a couple steps to sit in chair, so this may disturb her some. the PT will come sometime today and encourage this movement.  her doctor wants her to stay in ICU again tonight. then to a regular room some time tomorrow. she will be the hospital, more than likely, til saturday. thank you for your continued prayers.