Monthly Archive: November 2016

Today is the 6 month anniversary of Kayleigh’s diagnosis and time is growing shorter by the minute. Kayleigh is sleeping nearly all the time, only waking if she is in distress. Her O2 level is dropping more and we have started her on oxygen to help keep her comfortable. We don’t know the time God will call her home but we know it is coming closer.

So tonight we are holding our girl in the quiet of our home. I’m so thankful for our wonderful hospice nurses. Becki is staying with us just to make sure we can keep Kayleigh comfortable. Even in this state she’s a fighter. Her heart beats strong, she still says mom, she reaches for my hand and holds on tight.

Reflecting on these past 6 months that could easily be the worst of our lives, I cannot help but be humbled by all of our blessings. God has been SO good. He has guided our every step, given us an amazing support system, gathered an army of prayer warriors, made Tim and I better parents, strengthened our marriage… the list goes on and on.

So yes, our hearts are heavy. We love this child so very much. But we know God loves her even more and that His plan for her is perfect.

Tonight as you cover our family in prayer would you please pray for Kayleigh to be comfortable? For her heart to be peaceful and her transition from our arms to Jesus’ to be gentle. Pray for Tim and I as we weather grief every parent fears and no one wants to face. Pray that we will be good parents to Grace and Cole helping them to not just survive but flourish in this storm. And finally, pray God’s protection over Grace and Cole in every matter.

2 Corinthians 5:6-8
6 So we are always confident, even though we know that as long as we live in these bodies we are not at home with the Lord. 7 For we live by believing and not by seeing. 8 Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord.

Until tomorrow,
‘Carrow💜

Thank you to my sweet friend Heather Mitchell for taking this phone snapshot and making it a treasure.

Just us girls

Daddy photo bomb

Thank you Jesus for another day. Even as each day gets harder I am so thankful for each minute we have with our precious Kayleigh. She has continued to sleep nearly all day. She has very brief moments where she stirs and may even try to say something. But she falls quickly back to sleep.

Her deep sleeping was a blessing for me today. Since she was resting so well I was able to go to the softball field and watch Grace play for a little bit. And not just any tournament, but a Kayleigh fundraiser. It was wonderful. What made it even more special was the team Grace played on. Our town is blessed with some very talented young ladies, and while they are all good friends most of them play travel ball with different teams. But not today. Today those precious girls and their families came together to play as Hartselle. They never had a practice together, they just showed up this morning to play. And play they did. I can’t remember the last time I saw so much fun. The girls had a blast , and wow were they good. It was so good to get to be a part of that today.

Of course I couldn’t stay gone forever, Kayleigh started asking for me just before I arrived home. That’s another “thank you Jesus” for perfect timing. While Kayleigh struggles to communicate many things she can still say “mom” clearly and that does my heart a world of good.

Unfortunately, not long after I was home Kayleigh started struggling. Her oxygen level is falling and her breathing is much more rapid than it has been, as well as very shallow. She started stiffening her legs or arms and arching her back. Her hand was in constant motion and she was in an overall fretful state. I could tell she was trying to say something but couldn’t get it out – so I started asking questions. Does your head hurt? No. Does your stomach hurt? No. Are you ok? No. Are you afraid? Yes.

I don’t know exactly what she is afraid of. It may be that she can’t speak. It may be that I was gone. It may be that she is realizing that her body is dying. I don’t know what it was but oh how it hurt my heart. So I just started talking to her. Praying over her out loud. Trying to think of every possible fear and combat that fear with hope, prayer, and God’s word. Thankfully, Kayleigh eventually calmed.

Being human is a difficult thing. Kayleigh’s distress brought me to my knees quickly. Even once the storm passed for her I found myself lost in my own storm. Grief and fear. Kayleigh suffering, Kayleigh afraid – those are my fears and oh how it tore out my heart. I’ve spent hours tonight battling my human desires to doubt and worry. Doubt and worry have no place here. I know in the days to come I will have to battle these waves of grief more and more, but I know my God is good. As I sat and read His word I found rest. As I listened to music it brought me comfort. And the perfect devotion at the right moment helped me shake lose and grab hold of His peace again.

Learning to rest in the Lord is hard. But that is my choice. I am going to rest in Him and continue to trust that He knows what is best for all of us. And in all of that He grants me peace.

Psalm 91:1-2
91 Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. 2 This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him.

Until tomorrow,
‘Carrow💜

Sleeping Beauty

A great day with my Grace

I didn’t know this pic was being taken but it is one of my favorites now 💜

Happy Veteran’s Day, and thank you to each of you who have served in our military. You are appreciated.

I have little change to report today but unfortunately it is not good change. Kayleigh continues to decline. She was not alert today at all. Her few moments awake were a little disoriented and zoned out. She ate even less jello today and has no desire for liquids at all. We are now measuring Kayleigh’s remaining time with us in days. Only God knows how many days.

I find myself continuing to pray, asking for a miracle. Even as Kayleigh’s situation becomes more and more dire I know that God is still able. Hope is still inside me. It’s a difficult to even picture a future without a Kayleigh, but I know that no matter how God chooses to answer my prayers, I will continue to trust Him.

Thank you for continuing to pray with us. Even when I become weary I know that the saints around the words are battling for us and that makes a difference. Please forgive my very abbreviated post. I am so very tired tonight.

Joshua 1:9
9 This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”

Until tomorrow,
‘Carrow💜

Thank you God for another day. Our sweet girl is still with us. She is much the same as yesterday. She continues to spend most of her time sleeping. Thankfully, medicine continues to keep her comfortable.

Sometimes it’s difficult. The sitting. The watching. The waiting. Difficult because I want to prolong every single minute but I worry about Kayleigh being in any discomfort. I worry as she is able to communicate less that I will miss something and she will be in pain and I won’t know it. And at the same time I do not want to use too much because I want those lucid moments even though they are few and far between. It’s quite a fine line to walk.

I am continually thankful for our amazing medical team. From our St. Jude family to our wonderful hospice care family – we are well taken care of. I know we have explored every avenue possible and available at this time. It’s just so hard to be able to do nothing but watch. It is a helpless feeling that cannot be described. I do know we couldn’t do this each day without our faith. Our faith continues to give us hope each day. It gives us peace and comfort.

Thank you all so very much for continuing to pray for our family.

Philippians 4:6-7
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.

Proverbs 3:5-6
5 Trust in the Lord with all your heart; do not depend on your own understanding. 6 Seek his will in all you do, and he will show you which path to take.

Until tomorrow,
‘Carrow💜

Oh how my heart is hurting tonight. Kayleigh is still with us but continues to decline too quickly. She has slept nearly all day. Her food and water intake has decreased drastically and she lost nearly all ability to communicate. She isn’t able to speak and isn’t really able to even nod any more. We have increased her anxiety medicine to help with the jerking and constant restlessness. That has helped and she seems more peaceful. My concern now is that she cannot tell me when she is in pain. So we just have to use our best judgement as to whether or not she needs pain medicine.

She is still able to hold on to me. As I wrap her in my arms she will squeeze my arm or pat me. Oh how I treasure those moments. I spend my time whispering prayers asking for comfort, peace and mercy. Telling her that I love her. Letting her know that it is ok to go with Jesus when He comes for her. Stroking her soft cheeks knowing that my time to be able to do so grows short. I’m trying to store up those feelings, those memories so I won’t forget. But my heart is breaking tonight because I know with time her memory will fade. I’ll forget how it feels to hold her. I’ll forget what it feels like to touch her. I’m so thankful for the pictures and videos I have to remind me.

As I sit and pray tonight all I can ask for is that the Holy Spirit will intercede on my behalf. I simply to not have the words to express this magnitude of grief. I am SO thankful for every moment with this baby. Even with all this hurt I would not trade a moment. And while my grief is deep my hope and faith are deeper. I trust my Heavenly Father. That doesn’t mean it removes my pain, it just helps me see it in a different light. Never did God promise me that this road would be easy. Actually He warned that the road would be hard – it’s just that the reward is worth it.

Because of my hope in Christ I know this separation from my baby will be only temporary. We have eternity to be together. And while the time I still have in front of me on earth may seem long (God willing) it’s really only a drop in and ocean of eternity. So tonight I weep. I weep because my mother’s heart is still breaking. My beloved daughter is drifting from me and I can do nothing to stop it. But I know God is with me. He will not leave me. He will not make me walk this alone. He will carry my burden as long as I am willing to let him.

I know there has been much hate in the world today. The election has brought out the worst in many. Tonight I would ask that you lay all of that aside for a bit. Hold your children a little longer. Take a moment to be thankful for your health. Take a step back and choose to be thankful for the blessings in your life. One thing I have discover on this journey is that every day has its blessings. Even our worst days still have good if we make the choice to look for it.

Psalm 34:18
18 The Lord is close to the brokenhearted; he rescues those whose spirits are crushed.

Psalm 55:22
22 Give your burdens to the Lord, and he will take care of you. He will not permit the godly to slip and fall.

1 Peter 5:7
7 Give all your worries and cares to God, for he cares about you.

Until tomorrow,
‘Carrow 💜