Author Archive: 'Carrow McClendon

About 'Carrow McClendon

Kayleigh is a bright, fun, beautiful, 7 year old, little girl that was diagnosed with DIPG on May 11, 2016. This site is to share her journey and prayer requests.

November 1, 2016

And just like that we turn the page to a new month. Goodness where does the time go? Of course, time is a relative term around our house these days. I feel like I am living in a time vacuum, or maybe it’s a bubble. A very fragile bubble that has the potential to pop at any moment. But for now, inside this bubble, there is an air of peace. A beautiful calm. Where days and time have little meaning, we simply seek to treasure every moment.

We cannot thank you enough for your prayers for peace. We can literally feel them. Kayleigh’s continues physical decline was apparent the moment she woke this morning. She has nearly lost ability to speak all together. She tries to tell us things but it is so garbled that we cannot make it out. She has been much sleepier today, her appetite is declining, drinking is beginning to choke her, and her breathing is sowing down even more. Yet rather than feeling fear, panic or concern we feel steady, calm and at peace. Even Kayleigh, facing scary changes, still has an air of peace.

I continue to ask the Lord for healing, but my Spirit is content with “Thy will be done.” So today was filed with holding Kayleigh close, a few brief family visitors, love, hugs, snuggles and kisses. Oh how much joy I get from having her in my arms.

Tonight I ask your prayers over the rest of our family as well. Grace is battling bronchitis and Cole still has the fatty tissue on his neck that needs to be removed. And both of them are trying very hard to soldier on everyday like everything is ok. Much of my prayers today were for them. Protection of their hearts and minds.

Philippians 4:6-9
6 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 7 Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus. 8 And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. 9 Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.

Until tomorrow,
‘Carrow💜

Even kitty needed to give Kayleigh some loving todayimage

Good thing we have a big bedimage

Aunt Lik, Liki & Nora – precious timeimage

Daddy & Mommy snugglesimage

October 31, 2016

Hello friends, I hope you all have had a pleasant evening of kids in cute costumes and handing out candy. Kayleigh has been looking forward to dressing up for weeks. Ever since she came up with the idea of all the cousins being the Scooby Doo Crew. I am so thankful we did the church Trunk or Treat last week because she was not up to participating tonight.

Unfortunately, Kayleigh had a very rough day today. She woke with a terrible headache that would persist all day. Even regular doses of high powered pain medicine would not keep it away. Along with the headache comes vomiting and sleepiness. She battled like a champion, without complaint, all day.

We invited our church small group over to help hand out candy and let the kids trick or treat. They were great to keep people off the front porch so Max wouldn’t go bananas and Kayleigh could keep resting. Our sweet girl was able to say hello and good bye but she was a little groggy and her speech became more and more difficult to understand the more tired she became. But even with all of that, any time someone asked how she was she always answered “good.”

Even after a hard day I can still say thank you Lord for your goodness and mercy. Kayleigh’s breathing is better tonight and her color is better than it has been. I had a sweet friend come sit quietly and pray with me today, just what I needed – water for my weary soul. I was reminded as we prayed today that God is bigger than this diagnosis. For the last few days I have wrestled from grief, to anguish, to surrender, to peace. I have reached a place where I know if God chooses to call Kayleigh home, that it will be because He intends to use her death as a means to draw others to His side. Oh that any of us could say we have the same legacy. And while my spirit is at peace with that, today I remembered that I promised I would continue to pray for healing for as long as Kayleigh has breath.

Guess what? Kayleigh still has breath. God is still God. And while I am willing to let go of her to fulfill His plan in her life – I am not giving up. I am praying that she is my Isaac. That God will find me willing – that He will stay his hand and spare her life. And if He is so good to do that we will gladly offer a sacrifice of praise and thanksgiving for as long as we have breath. So prayer warriors, I ask you to hit your knees. I ask for you to pray with an expectant heart for a miracle only God can do. I ask you to pray for remarkable. Remarkable, unexplainable, miraculous healing.

And no matter how God chooses to answers our prayers, we will CHOOSE to bless His name. Because His ways are better than ours and we trust Him completely.

Hebrews 13:14-15
14 For this world is not our permanent home; we are looking forward to a home yet to come. 15 Therefore, let us offer through Jesus a continual sacrifice of praise to God, proclaiming our allegiance to his name.

Ephesians 3:20-21
20 Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. 21 Glory to him in the church and in Christ Jesus through all generations forever and ever! Amen.

Until tomorrow,
‘Carrow💜

 

October 30, 2016

In these past few weeks some days are hard, some are ok, some are terrible, and sometimes you have days like today – days that are beautiful 💜.

Kayleigh has been steadily declining each day over the last week. Friday night we were preparing to say good bye at any moment. Grief was palatable at our house – almost like you could breathe it in the air. Saturday morning we breathes a sigh of relief because she was still with us. Still groggy, but here. Today she was even a little better. Her color looks good, swelling has decreased, even her breathing is a little better. Speech is still hard to understand sometimes, especially if she is tired, but overall she is a little better. What a joy it is to be able to say that.

Of course medically there is no way for there to be improvement. We can only attribute this beautiful day as a gift from the Lord. So as we go to sleep tonight I am saying thank you. I have no idea what tomorrow will hold and that is ok, because I trust my heavenly Father completely. I was praying this evening asking for direction – because frankly, I don’t know what to pray. My heart screams for earthly healing because I want Kayleigh with me. Yet, at the same time, I know heavenly healing is actually far superior. No more pain of any kind. No heartache, no grief… Heaven is the ultimate goal. So what do I pray for? What is God’s will for Kayleigh? The answer is I still don’t know. At least not the specifics – and that is ok. My prayer now is truly, “Thy will be done”. I will have joy no matter how God answers.

After my prayer time I read a devotion and the verse was 2 Corinthians 12:9

9 Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.

And there you go. God’s grace is all I need. Today, tomorrow, and every day in the future. I’ve never really understood this verse until now. I see God’s power every day show up in my weakness. I certainly couldn’t walk this road without Him. I couldn’t look in Kayleigh’s fading face and find joy any other way. I pray each of you reading this are able to stop for just a moment and let it soak in that His grace is sufficient for all your needs.

Until tomorrow,
‘Carrow💜

 

October 29, 2016

Hello Friends,

Today has been a quiet, beautiful day. I am writing you from Kayleigh’s side. God has not called her home yet and we are continuing to treasure the moments. The Lord woke us this morning to the most beautiful gift. Kayleigh – alert! Her eyes were clear. Her speech was strong. We were able to understand her easily. It was glorious. Our perfect little window of clarity lasted for 15 gorgeous minutes. As far as gifts go, that was perfect. After those few minutes she began slipping again.

It was a quick slide this morning, back to where she was yesterday. She is still with us but is often hazy. She’s groggy and tired but she fights sleep tooth and nail. It’s almost like she knows it’s possible she will go to sleep and not wake up. Last night as she was drifting off to sleep she told me “I’m not ready to go…” I don’t know if that was her complete thought or if she was telling me something else. But the Lord is graciously taking care of Kayleigh. She didn’t go anywhere last night, she’s still here.

The other thing she has been continuing to say quite clearly for the last few weeks is “when can I get my ears pierced?” Ha! Even in death she is my spunky little girl. I kept thinking she would forget, that the disease would erase that from her mind… um, no. She hasn’t forgotten that and has asked every day for the last two weeks. This week I had a precious friend ask if there was anything Kayleigh wanted – and she meant anything. Disney World in the front yard was one of the options. So I thought on that for a few days and as Kayleigh continued to asked consistently I finally told her of Kayleigh’s wish yesterday. Today the fairy and friend showed up, and Princess Kayleigh has her sparkly earrings. I can now say we have officially granted Kayleigh’s every earthly request. Thank you Lord for answering every need.

Things like that seems so small, but to me it is God tying the final ribbons on this beautiful, elaborate, priceless gift. You see, God is making sure that I have no regrets. That I can’t look back at any point and say “I wish I had…” All these little things are the final touches – perfecting my memories of Kayleigh here with me. Oh how I don’t want her to go, but oh how thankful I am that I serve a God that cares for me. That knows how badly I am hurting and is meeting me where I am. Answering needs I didn’t know I had.

Tonight as she valiantly fought sleep she said two clear things, “please don’t leave me,” which was an easy promise to make, I will not leave this precious baby. She is my treasure, my heart, my children are God’s most precious gift to me – no, I won’t be leaving Kayleigh. And “can I stay with you forever?” Oh my yes. Precious girl, you can stay with me forever. How can I explain to her that she will never leave me? Even if she leaves this earth she will be with me forever. She is a part of me. So I just said yes. Yes, sweet baby, you can stay with me forever.

I know God is preparing Kayleigh’s heart to go home to be with Him. I know he is preparing ours too. My prayer continues to be for peace, comfort, and no fear for All of us. I’m praying that Jesus will make himself known to Kayleigh so that she is happy to see him. I’m praying for Grace and Cole as they experience this transition, that they will see God’s beautiful love, mercy and grace on display. How our family handles this is going to be a large part of their spiritual foundation which will be what they build their lives and walks with Christ on. Our prayer is that we are helping them build sound foundations. Kayleigh will have all the joys of heaven – Grace and Cole will have to mourn and continue to live in a fallen world. Please Lord, help us point our children to you.

As always, we appreciate all of your love prayers and support. Thank you for your messages, calls and support. They are coming in so fast that we are not able to respond to them all just yet. Yet I know when I do open those messages they will be at the right moment when I need them most. So please, don’t be offended if we can’t respond right away. Just know that we value your love and support very much.

Thank you al for helping us carry this burden
Galatians 6:2
2 Share each other’s burdens, and in this way obey the law of Christ.

Here is our hope…
Psalm 121
1 I look up to the mountains— does my help come from there? 2 My help comes from the Lord, who made heaven and earth! 3 He will not let you stumble; the one who watches over you will not slumber. 4 Indeed, he who watches over Israel never slumbers or sleeps. 5 The Lord himself watches over you! The Lord stands beside you as your protective shade. 6 The sun will not harm you by day, nor the moon at night. 7 The Lord keeps you from all harm and watches over your life. 8 The Lord keeps watch over you as you come and go, both now and forever.

Until tomorrow,
‘Carrow💜

Precious family timeimage

Cousin therapyimage

Cousin therapy part 2image

Getting her eats piercedimage

Why yes, they do sparkle!image

Kisses from sissyimage

The three amigos, all in Kayleigh’s bedimage

Brither love (and guard dog Max)image

October 28, 2016

Thank you friends for your amazing response for Kayleigh’s project. You all are amazing. Just seeing how far and wide her story has gone does my heart good. Seeing God at work – somehow that helps.

Kayleigh is continuing to decline rapidly. Far more rapidly than we are prepared for. Wednesday we were chatting and going out, tonight we prepare for God to take her home. Oh how my heart breaks. I love this child. She is a piece of my heart living outside of my body and I want nothing more than my precious girl to leap off of this bed and ask us why we are all crying. Yet I don’t think that is the Lord’s plan for us. Oh how I would love to be wrong about that – but no matter how God chooses to heal Kayleigh – we know His plan is perfect and we trust Him completely.

Would you please storm heaven for Kayleigh again? This time my prayer is for complete peace. For her to feel safe, loved and protected. I pray that she is able to see Jesus and have great joy about going to heaven. I pray for no fear, only joy.

And for us who are left behind – we are so very broken. Knowing that God is good and in control doesn’t lessen the grief but it does help us hold on to joy. So tonight I write to you from this hospital bed, hiding my precious girl for a little bit longer. Please continue to hold us up in prayer, we need you now more than we ever have.

Romans 8:
26 And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. 27 And the Father who knows all hearts knows what the Spirit is saying, for the Spirit pleads for us believers in harmony with God’s own will. 28 And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

Until tomorrow,
‘Carrow💜

And yes, that is a Christmas tree – Kayleigh asked for one tonight so Daddy pulled it out of the attic immediately.

Cherishing every momentimage

Kayleigh had a special ornament for Graceimage

And one for Coleimage

Merry Thankful Halloween from the McClendon’simage