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Thank you Jesus for a wonderful, ordinary, Thursday!

We don’t have too many ordinary days any more. We have exciting days, emotional days, scary days, crazy days, but not ordinary days – and ordinary is beautiful! It was still quite busy, but it was with normal things. Kayleigh went school supply shopping and played at school with my mom. Cole and I had a lunch date – just because we could. We picked up the house, watch TV, and I had the chance to take Grace to softball practice. Something I’ve missed since May. I really made no headway on my mile long “to do” list but in the long run, that doesn’t really matter. The memories are what matters. You will never have another today, and God has not promised you tomorrow. Do not waste the time you have been gifted by worrying about what might happen in the future – that just ruins today!

I also had some wonderful time alone with both of the older kids. It was great to have a little one-on-one time to love on them and encourage them. Time to remind them and reinforce that God is good and His timing is perfect. To remind them that we are not called to worry. Just because we don’t have the answers doesn’t mean that God doesn’t. He knows exactly what is going on and we just have to trust Him and have faith.

Hebrews 11:1
Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see.

Tonight I leave you with this verse about faith. Too often we get moving too fast and get caught up in what we can see and touch. We place limits on what we think God can do, putting him in a box and pushing Him to a corner of our minds because we don’t think we need Him for the every day things. Then, when a crisis comes we try to fix the problem ourselves but when we can’t and we reach the end of our own ability we go scrambling to find that box we’ve tucked away as our last resort.

BUT, if you want to have faith like that which is described above – faith that “gives us assurance about things we cannot see,” then you can’t put God in a box. You’ve got to leave Him out in the open – on the front porch, not the closet. He needs to be entwined in every little detail of your life not so He can tell you what you are doing wrong, but so He can be there to guide you. If you can learn to trust God in the little things, when the big things come your foundation will be solid and you will not be moved.

And if you already find yourself in the middle of the storm and you feel like you can’t get your footing, just keep praying. For starters, make sure You have a relationship with Jesus, that is the most important part. And then start praying and watching. Pray for the big things but pray for the small things as well. And don’t ever think something is too small to bother God with, He wants us to talk to him. I can remember praying one morning for matching socks! And then, just watch as God begins to answer the small things. Each answered prayer strengthens your faith. It’s a process and God can’t be rushed. But if you choose to be faithful I can promise you will see things that you never imagined.

Until tomorrow,
‘Carrow💜

And yes, God gave me matching socks that morning – because He cares about what I care about – and that morning matching socks were a REALLY big deal.

Morning Max snuggles

Checkng in on our superintendent, Dr. Wilson.

The ladies at the central office has on their Kayleigh shirts!

The support in out town is amazing!

Happy Wednesday friends!

I am thrilled to report another wonderful day here at the McClendon house. Kayleigh has felt good and been busy all day. She’s been to the movies, played with Grace, Cole and our wonderful Natalie, and played with cousins. As I type this post she is valiantly fighting sleep next to me. She says she can help me write tonight’s post – anything to keep from actually going to sleep she’s quite the little con artist!

So, I asked her what I needed to write… She says to tell you all two things:
1.) She had a great time celebrating birthdays with her cousins tonight
2.) Don’t forget God parted the river

And that my friends is all, but it certainly is plenty. At least it’s plenty for me to talk about! You see, our pastor preached about that river not too long ago and Kayleigh’s words brought the lesson back to mind. So often we talk about God parting the Red Sea, we overlook sometimes that he parted the Jordan River for Joshua. If you have a minute go read Joshua chapters 3 & 4, they are not long. Then come back and read my thoughts…

As I reread the story tonight I see a picture of God’s perfect timing for the Israelites and for Joshua. I see God’s might displayed – stopping a river that is rushing at flood stage and sending people across on dry ground. Dry land… Sometimes we miss that detail. Not just the water stopped but the ground wasn’t mushy or hard to cross. It was dry. And then I see God’s wisdom being passed down to us through the remembrance stones. Once across the river God instructed a stone be brought from the river, one for each tribe of Israel, and set as a memorial. So no one would forget what was done at that spot and so future generations would ask what those stones meant and it would be an opportunity for them to be told about God’s miracles and faithfulness.

As I reflect on what that means in my life I just have to stop for a moment. Yes, DIPG is like looking at a river that is rushing at flood stage. If I try to cross that river under my own ability I will surely be swept away and drown. For me alone, it looks hopeless. But for me with God, it looks like another opportunity to set forth stones of remembrance.

Nearly every day I hear “I don’t know how you do it” – but really, the answer is so simple. We aren’t doing it, God is. God doesn’t look at Kayleigh’s diagnosis and wring His hands. He knew this was a part of our story from the foundation of the world. He also knows how the story ends, He’s personally crafted every detail. And this Almighty God sees fit to grant me peace when I pray for Kayleigh’s healing this side of heaven. So yes, you read my posts and yes, I really believe what I am writing. I’m not covering up internal angst, I am at complete peace. I believe the same God that stopped the rushing river is going to stop the DIPG in my baby. I believe He has a path set for us to walk across dry land – I have no idea what that path looks like or how long it is, but I know it is already set and I know as long as I trust Him I will have sure footing. And I believe when we get to the end of this river crossing God is going to help me set up stones of remembrance so that when anyone sees them they will ask and be told of God’s amazing greatness and miracles.

I am looking forward to the miracles God has in store for Kayleigh and the rest of us – both big and small. I know there will still be hurdles and obstacles but I also know God has everything under control. It’s just my job to be faithful.

Joshua 4:21-24
21 Then Joshua said to the Israelites, “In the future your children will ask, ‘What do these stones mean?’ 22 Then you can tell them, ‘This is where the Israelites crossed the Jordan on dry ground.’ 23 For the Lord your God dried up the river right before your eyes, and he kept it dry until you were all across, just as he did at the Red Sea when he dried it up until we had all crossed over. 24 He did this so all the nations of the earth might know that the Lord’s hand is powerful, and so you might fear the Lord your God forever.”

Kayleigh has finally drifted off to sleep but I think she did a vey nice job with tonight’s post. If you see her let her know you liked her message about God parting the river. She thinks she isn’t really doing anything, that she is just a kid, I keep telling her that by just being herself and letting me write about her, she is making a difference.

Until tomorrow,
‘Carrow💜

Hanging out with our awesome Natalie!

Movies

Sweet sisters

Thank you Jesus for another day…

Today is the first day the Kayleigh has truly seemed like herself since before we disembarked the cruise ship. We know her healing is a process but it certainly is nice to see progress. She even felt good enough to stay with our wonderful sitter so Tim and I could run errands. It was so nice for us to just be together and actually be able to talk freely!

Kayleigh still has some lingering symptoms, particularly balance issues and some involuntary muscle contractions in her arms and face. We hope that as she heals and we maintain the steroid dose that these things will calm down and return to normal. We still very much want to get her off the steroids, but for now, managing the swelling to control the symptoms is a higher priority. Hopefully, by the time we get back to St. Jude, she will be much more stable and we can begin to wean again.

Our week at home is moving by swiftly. My “to do” list is still quite long but I am praying the Lord will help me get all of the important things in order before we leave for St. Jude this Sunday. As the scans near we are also trying to prepare of stage 2 of Kayleigh’s treatment. The hard part is we really won’t have a direction until we see the scans, so right now we are trying to prepare for multiple scenarios.

We believe that we are beginning to see the Lord pointing a certain direction but of course it is the path that seems to have the most obstacles. The good news is we know that if this is God’s plan for Kayleigh then He already has a plan for us to leap every hurdle. We are also praying that if this is not the right path that God will make that clear as well.

So for now here are our prayer requests…
1.) Complete healing this side of heaven!
2.) Symptoms to subside, balance to return and cranial nerves to relax back to normal.
3.) Clear direction for the path to phase 2 and God to clear a path through all obstacles.
4.) Organization of all the Homefront details so the children are ready to start school and our home is in order.

Thank you for continuing to cover us in prayer. We count on each of you more than you can possibly know to help is carry this load. Because of our prayer warriors this load is not too heavy to bear. We love you and are thankful for you.

Galatians 6:2
Share each other’s burdens, and in this way obey the law of Christ.

Until tomorrow,
‘Carrow 💜

Precious big brother

Treasures from a good friend (Cole has treasures too, he just wasn’t feeling picture time)

checking out our school with awesome Miss Amanda!

Happy Monday!

We have had a wonderful day, thank you Jesus for your never ending blessings. Kayleigh had a doctors appointment this morning. We truly love St. Jude and the affiliate office in Huntsville is just an extension of the fabulous care Kayleigh has been receiving all along. The nurses, techs, doctors, child life specialists, and administrative staff are amazingly supportive and so very kind.

It was reassuring today to have Kayleigh checked out thoroughly and for Tim and I to ask some very direct questions. It was even better to get straight answers in return. We know that no one truly knows exactly what is going on inside her head, but having them share their expertise helped calm many of our concerns. It also helped us form a plan to best help Kayleigh manage her symptoms, which as a parent in this situation, is very helpful. Our visit today was quite lengthy but well worth it – we all left feeling better!

Thank you for your continued prayers. Our prayer is that the current symptoms are being brought on by inflammation and swelling from radiation therapy and not any type of progression. And of course, healing this side of heaven!

Until tomorrow,
‘Carrow 💜

Check out this enormous trophy Coach Jojo brought Kayleigh!

Good Morning!

I fell asleep with Kayleigh last night and didn’t get our day into words. What a joy it is to just curl up wth her! Our Sunday was lovely. It was the first day since Kayleigh’s breakdown that we have gone the whole day with no tears. Little by little she is asking her questions and God is graciously giving me answers every time.

Here are some of her precious questions…

KB: Mommy, I’m not afraid of dying any more, but what if I die and Jesus forgets me?
Me: Baby, Jesus doesn’t forget anything he is perfect. He remembers everything and loves you – very much.
KB – not looking convinced
Me: He also has a very special book. It’s called The Lambs Book of Life, once you accept Jesus into your heart Jesus writes your name in His book and it can never be erased.
That did it, knowing Jesus has a record of her calmed the fear.

KB: sometimes I do bad things, what if Jesus stops liking me?
Me: the bible tells us that Jesus never stops liking us, He loves us always.
John 3:16 says For God so loved the world, that’s Kayleigh… For God so loved Kayleigh that he sent his only son, that if she believes in him she will have eternal life.
KB: but sometimes I do bad things
Me: the bible also tells us that nothing can take us out of God’s hand… Not height or depth, not good things or bad things, once we are in His hand we are there for good.

KB: what if you get to heaven before me?
Me: then I will wait for you.
KB: what if I get there before you?
Me: then you wait for me.

How the Lord allows me to hear her heart and answer is amazing. How I am able to keep myself composed and not be a sobbing mess is also amazing. Yet each time she comes to me with a gut wrenching question, God is good to give me peace and bless me with words. With each question we are able to use the bible to squelch fear. With each fear that we squelch, Kayleigh becomes more sure of herself. Like anything, it is a process. And not one I can rush.

This was the passage in one of my devotions today…

Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way (James 1:2-4 MSG).

So don’t try to get out of anything prematurely… Ugh. As we pray diligently for Kayleigh’s healing this side of heaven, God is gracious to continue to grant me peace that He is going to grant our request. Yet as we walk each day I am seeing that He also has a beautiful and intricate plan in place for Kayleigh. While my prayer is for miraculous and immediate healing I must continue to be faithful in the waiting, not trying to get out of this prematurely. God is at work here. In me, in Kayleigh, in our family, in all of you.

So, I will continue to pray for complete healing, this side of heaven, to be completed in His perfect time. I will still be praying for the time to come quickly, but I will be content that God is in control. No matter what the symptoms look like, no matter what the doctors say, no matter what the devil tries to throw in our way, God is good. He is on his throne. He is in control. I trust Him. The end.

These are the verses I was referencing when talking with Kayleigh. I paraphrased them to be kid friendly, but the teaching is still there. Thank you Jesus that your word never returns void.

Revelation 3:5
All who are victorious will be clothed in white. I will never erase their names from the Book of Life, but I will announce before my Father and his angels that they are mine

Romans 8:38-39
38 And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. 39 No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.

Until tomorrow (or tonight),
‘Carrow 💜