For once, I felt as if nothing was wrong and no troubles to stress. We laid comfortably together, enjoying the closeness as a Father and his little girl should feel every single night. I've never gotten the chance to be so close and I may never get that chance again until we meet again in heaven someday. She is my precious sweetheart and it will be so hard to let her go when that day soon comes."
We are not sure if Kayleigh's traumatic and unforeseen circumstance is the cause to her new found issues. She is no longer tense with constricted muscles, but she seems to be breathing heavier and cries out silent cries of agitation. The doctors tell us she feels no pain as this section of the brain controls no emotions, but when she is awake, her uncomfortable condition seems to tell us otherwise. She doesn't hold our fingers anymore and retracts her hands and feet at the slightest touch.
This is so uncomfortable to see and our emotions become at ease when our nurse gives her some sedatives to let her rest. We are all fearful of Kayleigh continuing to act this way as we were told this is how most people with this brain condition will act unless they're asleep. No parent should ever have to see their child like this and I lift my hands in prayer to those who do.
Aimee and I have plans to bring Kayleigh home to her precious room, we so anxiously prepared her for, so she can live out the remainder days of her life. We want Allyson and Brandon to spend some time with their sister, which they were unfortunately not able to do since August of last year due to RSV season at the hospital. We are not sure when that will be due to her lack of feeding abilities, but we only pray the Lord will bless us with our wishes.
Many of you asked if Kayleigh's organs can be donated and this is something we wish we could do, but with the major organs having so many issues, it is not possible. There are options to donate some minor things, but that could only be done before Kayleigh passes and we would rather have her with us at home during her remaining time.
I learned today that God has given us a gift of love and no matter what or when our decisions may be, it will be filled with love. We don't want to regret any decisions we have to make, so we want to be 100% sure we are doing what we feel is right on this inside. No one can tell us what is right or wrong, only God can fill our hearts, making the perfect decision for our daughter when it is purely made out of love. Kayleigh will always be remarkable, whether she is with us here on earth or not. But, we do know that heaven shares no pain and Kayleigh will be made new again.
Someone very special to me told me something today that has touched my heart so deeply that I want to share with all of you. I want you to look closely at the photo above where my hand is holding Kayleigh's. Do you see God's hand holding mine? I do.
I would like to praise God for my parents who walked for us this morning in the March of Dimes walk in Charlotte. We wish we could have been there with you guys, but just know we will walk every year for here on out and for those who can will be more than welcome to join us. Here are some photos of them with Kayleigh the other day and this morning, during their walk in Kayleigh's name. Thank you two and we love you so very much! Also, thanks to all of those out there who also walked in Kayleigh's name. We really appreciate it.
God Bless,
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