As much as we have entered a new journey medically, financially, emotionally, and physically… I seem to have turned the tide on this spiritual journey. After a good while of feeling completely drained and feeling like hope was gone something inside me today just smiles. Its reassurance in knowing that there are still doors to open and new tests or treatments to try. I truly believe that eventually Ky will level out and will get to have that “normal” life. I am starting to see glimpses of it and it is so much sweeter than I ever imagined.
Through out this journey many people have told me to hold to the passage in
Yet I find myself oddly drawn to book of Hebrews more than anything…
I have always been a fan of the King James Version of the Bible. I was schooled in a private Christian School where the KJV version was the only version that we were to “study” from for our Theology classes etc. So I have always been accustomed to reading from it. But when I got to this passage I thought to myself… I wonder how other versions have translated this… here is what I found:
“NOW FAITH is the assurance (the confirmation, [a]the title deed) of the things [we] hope for, being the proof of things [we] do not see and the conviction of their reality [faith perceiving as real fact what is not revealed to the senses].” – Amplified Bible
“Now faith is the (A)assurance of things (B)hoped for, the conviction of (C)things not seen.” New American Standard
and then I came to this:
“Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see.” – New Living Translation
WOW. I realized all of the sudden. This “sixth sense” that I seem to get… about just KNOWING things even when people cannot SEE them in Kyleigh. It is not some super power or great knowledge and inference. Its simple faith. Of all the things that have happened in the past two years the one thing that I have NEVER felt is SCARED. There has been ONE moment of Ky’s entire life that I was truly scared that she would loose her fight. During her open heart surgery when the nurse came running out just minutes after and update and said that they could not get her off bypass because she had a muscle mass and that they had had to reopen and restart a new leg of surgery.
Other than that one time it has never really occurred to me that she might die. I have never really thought of all the horrible outcomes that could happen. There are so many things that could go wrong… but some part of me just knows that this is NOT our fate. And while it may also not be in the cards for Kyleigh to be miraculously healed, I am ok with it. I am ok with this fight as long as she is not hurting and miserable. As long as someday we will be BETTER. I am ok and we will continue on.
Faith, Hope and Love… but the greatest of these is love. I know that for all we have been through and for all that we have ahead. This journey has given me the ability to LOVE every person. Not for what they have done, or said, or where they have been or WHO they are. But to LOVE in SPITE of these things. I am so amazed by the person I am becoming and no matter what happens I am thankful for this journey. I am willing to continue because I know that it can only HELP my baby girl feel better. I will fight as long and as hard as I need to. I have said I would give ANYTHING to have her feel better and as much as it hurts I know that I am being asked to give up some things that I have worked VERY hard for. I am ok with that. It hurts my ego a bit but does my heart good to know that I am a woman of my word and I WILL DO WHATEVER IT TAKES.
So… send some hugs and prayers that my ego is not too badly bruised and that I am able to move on with a happy heart and grateful soul.
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Sending out lots of hugs and prayers- you guys are finally on the road to “somewhere” and I pray that the next few rounds of testing will show you some answers.
She is just too darn cute-her hair will be in ponytails soon enough!
Love you guys!
Lots of Hugs and Love!!! You always Inspire me and both you and Troy are so very special!! The good Lord knew what he was doing to give Ky you as her parents.. XOXO, M
Amber I’m glad to see that your spirit is refreshed from last’s weeks period of hopelessness.
I love this verse in Hebrews too- and I will be praying you understand it more and more as time goes by.
I know Ky has her bad days (so does Eithene) but you know, she still looks like a well-loved happy child and you can see it in the pics. I think you are doing great.
Jessica
http://www.caringbridge.org/visit/eithenerosehilliard
SO glad to hear that you are feeling much more hopeful!! That is wonderful to hear. You and Troy are wonderful parents and I have no doubt that you will make it through all this.
(((BIG HUGS)))
Yay for hope!
I gotta give mad props to Troy, too, for being the one who – from what you said – seemed to have faith and hope all along in “this motility guy.”
Looks to me like when you two are both each following your parental-sixth-sense, well, you’re force to be reckoned with. And a force I am certain will make the “normal” life happen for Princess Ky.
I know it’s oddly good news you’ve had, but I’m oddly, ridiculously happy for you.
So glad you found your hope again. Just remeber it is always there, just sometimes it gets burried, really deep, but there ARE better times ahead for your family and for Ky. Still praying for you to continue to be strong and that this motility guy can finally give you some much needed answers. ((((HUGS)))
I’m so glad you’re feeling better today and are able to see the Lord working in your lives.
During the tough times (and when you’re the parents of sick children those seem to come all too often), my husband and I cling to Psalm 61:2b “…when my heart is overwhelmed, lead me to the rock that is higher than I.”
Continuing to pray for all of you.
{hug} I love the New Living Translation of that verse. I think of you all often, and pray for you as well. Even though I’m quiet in most of it, and don’t post often. Know I visit and pray.