Good evening everyone,
It has been a quiet day at our house. Kayleigh slept most of the day and when she is awake we can tell she is beginning to slip more. It’s so difficult to wrap my mind around. When she sleeps she looks so beautiful, so peaceful, so at ease. Yet when she wakes she struggles and seems to be filled with restless energy. Her wakeful times are fewer and she is less alert. Often times the only way we know she isn’t actually sleeping is by the restless, perpetual motion of her left hand.
Ever since she was tiny she has had a special lovey, she calls “Big Bunny.” Big Bunny is always with us. She has tattered strings that Kayleigh mindlessly pulls to calm herself. Even as Kayleigh has declined and lost the use of the right hand she simply started pulling Bunny with her left hand. I told Tim when we were in the hospital last, and Kayleigh wouldn’t stop pulling the strings, we would know when things got bad because that would be the last thing to go. Today, for the first time, I saw her struggling to pull the strings.
Through pure grit and determination I watched her all day reposition Bunny, trying to get a better grip. Her fine motor skills are failing so the movements were big and clumsy, but she never stopped trying. She has so much heart, so much fight, so much more than I ever expected from my fairy princess.
As she sleeps more she is eating less. She is also battling congestion, especially when she sleeps for long periods at night. Her hearing is fading quickly and her cognitive speed is slowing down. Thankfully, her mind is still with us. It’s actually quite sharp, it just takes a little longer for her to process and respond.
So for now we continue to thank God for each additional day. Each day that she is comfortable, not in pain, and over all peaceful. We continue to soak up the minutes. I hold her every minute I can and tell her I love her over and over. Filling her life with as much love as I possibly can. I have no idea what God’s plan is for our girl. I don’t know the days or the hours that have been allotted to her, so I am striving to be content in each moment. Taking nothing for granted.
On that note, I hope all of you that were legal and able made your way to the poles today to cast your vote. No matter who you vote for or what your views are, the right to vote is a privilege. One that many men and women have given their lives to preserve. A privilege not to be taken for granted. I even managed to sneak out of the house long enough to cast my ballot as Kayleigh napped this afternoon.
Our prayer requests tonight are simple – for Kayleigh’s continued comfort and peace, and for God’s perfect healing in His time and in His way. We will never stop praying and believing
Matthew 18:1
1 One day Jesus told his disciples a story to show that they should always pray and never give up.
Colossians 4:2
2 Devote yourselves to prayer with an alert mind and a thankful heart.
1 Thessalonians 5:16-18
16 Always be joyful. 17 Never stop praying. 18 Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.
Until tomorrow,
‘Carrow💜
When Kayleigh’s hand becomes frustrated or too restless I replace Bunny’s strings with this little cross. It’s beautiful to watch her hold on to that which matters most.
