Monthly Archive: October 2016

10/15/16
Morning update:
Starting the morning off in every direction.. Thank the Lord for peace. Grace is playing ball at the state tournament in Hanceville. Cole is headed to Camp Comer with the scouts. Carrow and I are headed to the pediatric ER in Huntsville for Kayleigh to have a CT scan this morning to help find out why her symptoms are escalating. Pray with us that this is something simple, like the functionality of the shunt and can be addressed quickly and is not progression of the tumor. Grace and Cole are not fully aware of what’s going on with Kayleigh at the moment and we would like for them to enjoy there activities today.

Pray Big Prayers right now because we know Our God is Bigger!
Tim💜💜

Hi Friends,

I really wasn’t sure where to start tonight but as I typed the date I realized it’s our anniversary. The 13th of any month will never be the same. The 13th is when we became a member of the DIPG family. Five months now, that’s how long our sweet girl has been at war. She is such a fighter and I am so proud to be her mother. Her attitude is bright and her heart is filled with joy. I fear there may be a day that her decreasing abilities may steal her joy, but for today that is not the case so I will choose to be thankful.

Kayleigh had a day about the same as yesterday. The stomach did fairly well but the headaches still broke through. I have seen no improvement in any other areas but as I told my 7th grade Sunday School class this week, any day I get to tuck Kayleigh in at night is a good day. So, thank you Jesus for a good day!

Thank you for lifting us all up in prayer these past 24 hours. I wish I could say I had bounced back to my self but I’m still battling. I sent this text to my brother Calloway tonight – it pretty much sums up where I am right now.

“I’ve been struggling a little bit. Not with praying but with hearing what God is saying back. The fear that keeps slipping in as I watch Kayleigh just keeps sidetracking me. All I hear in my head is sad things. Even when I work to push it away I can still hear it. I just don’t know how to make it go away. It doesn’t change that I believe God has a plan. And it doesn’t change my trusting God. Even if He doesn’t answer my prayers as I want I still know His plan is perfect. So why can’t I get rid of this crappy white noise in my head that is just feeding fear?
I don’t expect you to have the answer. I just don’t have anyone to ask”

One of the most wonderful things about my brother is that he just listens. He doesn’t try to make up an answer. He doesn’t try to “fix” me. He just helps me carry the load. So I post this tonight, not for anyone to answer the question, but so that our prayer warriors will know how to pray. And, so that each of you can see that God uses broken people. That you don’t have to have everything together in order to be used by God. You just have to set down your pride. Stop being stubborn. Stop trying to be good enough to make a difference. Stop trying to get yourself cleaned up before turning to Jesus. Just turn to Jesus, he will take care of the rest.

But then it was brought to my attention this week that some of you that follow us may want this peace that we have but not know how to get there. So, below my signature are the basics of the 4 Spiritual Laws – principles that have made all the difference in my life. Please know, following Jesus is not an easy endeavor – but it is by far the most meaningful thing in my life. Without our faith, this journey would be so bleak, dark, and impossible. Our hope and peace come from our relationship with Christ. It is my prayer that if you do not know Him that you would choose to find Him.

Until tomorrow,
‘Carrow💜

The 4 Spiritual Laws

Principle 1:
God loves you and offers a wonderful plan for your life.

John 3:16
“God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish, but have eternal life.”

John 10:10
[Christ speaking] “I came that they might have life, and might have it abundantly” [that it might be full and meaningful].

Principle 2:
All of us sin and our sin has separated us from God.

Romans 3:23
“All have sinned and fall short of the glory of God.”

We were created to have fellowship with God; but, because of our stubborn self-will, we chose to go our own independent way, and fellowship with God was broken. This self-will, characterized by an attitude of active rebellion or passive indifference, is evidence of what the Bible calls sin.

Romans 6:23
“The wages of sin is death” [spiritual separation from God].

Principle 3:
Jesus Christ is God’s only provision for our sin. Through Him we can know and experience God’s love and plan for our life.
He Died in Our Place – Romans 5:8
“God demonstrates His own love toward us, in that while we were yet sinners, Christ died for us.”

He Rose From the Dead – 1 Cor 15:3-6
“Christ died for our sins…He was buried…He was raised on the third day, according to the Scriptures…He appeared to Peter, then to the twelve. After that He appeared to more than five hundred…”

Principle 4:
We must individually receive Jesus Christ as Savior and Lord; then we can know and experience God’s love and plan for our lives.

We Must Receive Christ – John 1:12
“As many as received Him, to them He gave the right to become children of God, even to those who believe in His name.”

We Receive Christ Through Faith – Ephesians 2:8-9
“By grace you have been saved through faith; and that not of yourselves, it is the gift of God; not as a result of works, that no one should boast”

We Receive Christ by Personal Invitation – Revelation 3:20
[Christ speaking] “Behold, I stand at the door and knock; if any one hears My voice and opens the door, I will come in to him.”

Receiving Christ involves turning to God from self (repentance) and trusting Christ to come into our lives to forgive our sins and to make us what He wants us to be. Just to agree intellectually that Jesus Christ is the Son of God and that He died on the cross for your sins is not enough. Nor is it enough to have an emotional experience. You receive Jesus Christ by faith, as an act of the will.

Brother love

Quiet moments – times to treasure

Hello Friends,

Kayleigh has had a slightly better day. Her stomach did hurt a bit, but not until late in the afternoon. Which means she had a pretty good morning, and that was wonderful. She’s had a good attitude all day as well which makes her fun too. Sadly, she did have headaches pop up twice today. A little worse than yesterday and lingering. Those rattle me more than everything else.

If you’ve followed our journey for a while you may remember me posting that I believe that the Lord is going to spare Kayleigh. I am thankful for the peace God grants me as I pray each day for healing this side of heaven. Yet, days like today rattle my resolve. Not because anything particularly terrible has taken place, but because I can see Kayleigh slipping a little each day – in all areas.

She can no longer walk or stand alone. She needs assistance to use the restroom. She has begun to get choked on water. She is losing hearing capabilities. Her speech is slurred. And as all of those are becoming more and more apparent, my heart breaks a little more. This is my precious baby – a piece of my heart walking around outside my body. Watching her decline and having no recourse with which to make anything better has to be the most difficult thing I have faced in my life.

This is when I wish I knew what God’s plan was. What’s coming around the bend sure would be nice to know. Yet, that isn’t how God works. It’s not my job to know, it’s my job to follow and obey. And to pray – always pray. And while I am so thankful God gives me peace sometimes it’s hard to cling to the hope of healing when things look bleak.

Tonight sweet friends, this mom needs your prayers as well as Kayleigh. I’m tired and a little weepy. Thankful for each treasured moment I have yet praying for so many more. Tim is sick on top of everything else so that adds a little to the strain. We know God is at the helm, and none of this surprises Him. We also know that when you all activate your prayer chains we see God work in wonderful ways.

Until tomorrow,
‘Carrow💜

October 10, 2016

Thank you, Lord, for another day!

Kayleigh has had another fairly good day. She had a small hiccup this morning – she woke up in a good mood but absolutely starving. We are still extremely cautious about her diet and generally try to eat small meals a little more often through the day. But this morning, she could not eat enough to be satisfied. My guess is that we are seeing the effects of the steroid increase – yuck. As she continued to eat through the morning a stomach ache hit. Even though we were careful I think it was just too much at once. Poor baby was in tears, upset she had done it to herself, and still hungry at the same time! Talk about a mess. I finally convinced her to take a nap, and thankfully when she woke up the ache had passed and she was in better shape. She made it the rest of the day without too much discomfort, so I’m marking this day up as a win!

While we are finally making progress on the belly issues her balance and motor skills, especially on the right side, are still deteriorating. Not only are the fine motor skills nonexistent, but gross motor skills are getting worse. She has to use her left hand to make her right arm do anything. Her right leg, even with the brace, struggles to hold her up and walking alone is not possible. Even the right side of her face is beginning to droop. As I type that I realize just how terrible it sounds, and yet here I sit, still at peace. Not that it is ok. Not that I’m not looking for anything we can try. More like completely calm, focused on my mission. No panic. No worry about “what if.” Just complete certainty that God is in control and that He is going to direct our paths to where we need to be.

So often on this journey it comes to mind just how drastically God has changed me in the last few months. Not that I was a terrible person to start with but I had plenty of things I needed to work. Many of them I was aware of but more often than not I was too busy running kids around and working full time to really think about making any changes. More like passing thoughts and quickly worded prayers. Yet now, as I have truly begun to learn what it means to walk with Christ, to live by faith, to trust Him to guide my steps even when I cannot even see the next step, I see changes. My temper, which has been known to be quite unpleasant, very rarely raises its head. Certainly not at all like it has in the past. My patience has grown. My spirit is at peace – not worried about anything. I honestly don’t recognize this person, but I must say, I like her better. I know my family likes her better. But I know me, I’m going to have to work hard to make sure she stays around. Of course, I get the feeling that God is going to continue to give me plenty of opportunities to practice.

I’ve been a Christian for more than 30 years and learned much in that time. I get the feeling that all those years God was pouring my foundation and building my house – making sure it was solid so I could withstand a serious storm. I owe my parents a huge debt of gratitude for always putting Jesus first in our home. And as I sit here, being thankful, I can’t help but examine my life and think about what Tim and I are instilling in our children. Are we building the same foundation for them? Are we teaching them to trust? To pray? To believe? To have faith beyond a shadow of a doubt? Looking at our world now, you can tell these generations are going to need deep roots to withstand what is coming. To be able to hold fast to the truth and to respond to hate with love.

Funny, I had planned to leave a super short post tonight. Something close to “we’re alive, I’ll write more tomorrow” just because I was tired. Yet once I picked up my phone to write you got a 5 page essay instead!

Please continue to pray for healing this side of heaven, for Kayleigh’s stomach to stay on the right track, headaches to stay away, steroids to be weaned down with out worsening side effects, balance to return, and strength to return to her right side.

Verses for tonight

Proverbs 22:6
Direct your children onto the right path, and when they are older, they will not leave it.

Deuteronomy 6:5-9
5 And you must love the Lord your God with all your heart, all your soul, and all your strength. 6 And you must commit yourselves wholeheartedly to these commands that I am giving you today. 7 Repeat them again and again to your children. Talk about them when you are at home and when you are on the road, when you are going to bed and when you are getting up. 8 Tie them to your hands and wear them on your forehead as reminders. 9 Write them on the doorposts of your house and on your gates.

Ephesians 6:4
Fathers, do not provoke your children to anger by the way you treat them. Rather, bring them up with the discipline and instruction that comes from the Lord.

Children are our most treasured blessings. If you have them, don’t take a single moment for granted.

Until tomorrow,
‘Carrow 💜

Pictures of our blessings 💜💜💜
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Hello Facebook Friends,

I am thrilled to report a good day! Part of me hesitates to even mention it because I want to make sure it’s really true and not a fluke. But, both yesterday and today we have been extremely careful about what we let Kayleigh eat and it has paid off. Nearly two days without serious stomach issues!

She isn’t thrilled about her food options right now so my big hurdle this week is going to be finding things that she can eat and that taste good. It’s so hard for me to say no to her these days but I am standing firm on food. If it’s something that I know will upset her stomach I will not let her have it, no matter how much she begs!

Since we had such a long day yesterday and Kayleigh was exhausted, Tim and the girls stayed home from church this morning. Thankfully, rest seemed to be exactly what she needed and by lunch she was ready to get out of the house. We met my brothers, their families, and my parents at the pumpkin patch. We did quite a few fun things but it was all a struggle for KB. She couldn’t climb the ladders, swing, or jump and that made my little fighter sad. Even more than the stomach aches, this kind of sad hurt my heart for her. She asked me what was wrong with her… why couldn’t she run and play any more? All I could do was remind her that there was nothing wrong with her, it’s just this stupid tumor. This blasted cancer is stealing mobility from Kayleigh each day and I hate it.

Thankfully, she got to end her day on a high note. Mr. Andy and Ms. Jada came by the house to visit. Mr. Andy is the amazing guy that set out to ride from the AL/TN state line all the way down to Gulf Shores on his bike… In just 3 days!!! That was one seriously audacious plan. Sweet Ms. Jada was with him the whole way, making sure he stayed safe. Kayleigh was tired after the pumpkin patch but she was so excited Mr. Andy was coming and he certainly did not disappoint. The visit alone brought a smile to her face but when she opened her precious gifts, wow, the super watt Kayleigh smile was back.

Many people ask me how we know Andy, and guess what? We don’t. Or didn’t until tonight. He is another amazing, special person God has touched and used to bless us on this journey. I cannot even begin to keep track of the way God continues to use our prayer warriors to bless us. Even at the pumpkin patch today – over an hour from home – we had many families stop us and let us know that they are praying for us and our sweet girl.

God is so good and we are so incredibly thankful. Please continue to pray with us for complete healing this side of heaven, for the headaches to stay away, and for us to be able to keep the tummy on the right track (no matter how hard it is).

Deuteronomy 7:9
Understand, therefore, that the Lord your God is indeed God. He is the faithful God who keeps his covenant for a thousand generations and lavishes his unfailing love on those who love him and obey his commands.

He certainly is a faithful God!

Until tomorrow,
‘Carrow 💜

Uncle Kelly helping us get lost in the corn maze 

Big Sis and Cousin Mal

The whole crew minus Cole – he was hanging with Daddy Mac & Mama Mac

This swing was great!

Digging into the big goodie bag 

Purple & Butterflies on everything – so perfectly Kayleigh

Opening a special little box

The stunned look from receiving REAL big girl jewelry!

This is her making sure Inknow that this is HER pretty sparkles and that she is not sharing with me. That’s ok pretty girl, I wouldn’t share either 💜