Hi there 🙂
It’s been a long 2 years for Olivia and I!
Tomorrow she will be having a Tracheal Resection surgery to finally have the trach removed.
Her trachea was damaged at the Abbott Northwestern ICU by a young doctor who used too big of a tube.
Join me in my prayers for the damage to be less than expected, perfection in the surgery and a quick recovery time.
We’ll talk later - thank you
Xo
Kelly
https://www.instagram.com/reel/DRPw9n_iRh7/?igsh=dHduMWw1dTlyZzQz
Happy New Year! 2024! I hope this message finds you well.
A singular puzzle piece. This has been on my mind since the last time I shared my heart with you.
Or perhaps, a grouping of pieces arranged in different, colorful configurations. I'm sure you are familiar with the symbolism of the puzzle piece within many different autism communities or amongst individuals who belong on the Autism Spectrum. It's recognizable.
Two decades have come and gone as I've searched for the missing piece (or pieces) to help Olivia. It's been a lonely journey, never really feeling like we both have had much significance in our hopes and (unrealistic?) expectations.
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During this hospital stay, that word, "significance" has dominated my thinking. What is true significance? What is it that we all truly want (need?)? I realized that the lack I'm feeling is wondering if we are significant to God, that He sees us.....cares for us in our suffering. If I base it on my feelings, it certainly hasn't felt like He has. Listening for a Voice that has been silent for years. Or, so I thought.
Hearing His voice has to be a choice.
I've been reclusive lately, both physically and spiritually. Running from any or all "assignments" I partly hear because my heart can't bare further failure. Going deep is amazing unless you aren't prepared for the possible detours...or further detours. Finding missing puzzle pieces require the search. You know, like when you are searching for your child's favorite puzzle piece lost in your house somewhere.
What tends to happen? You give up. Even though you try and try to visualize where you last saw it, only to realize that it is certainly a lost cause. Years go by, your child has grown up and that old puzzle with the missing piece, you donate it, mentioning on the box - "just one missing piece, please still enjoy". You move on. You forget about how much it bothered you to actually visualize where that missing piece only to never find it. But then it happens. You clean out closets, like a deep clean, and there it is.
What helped me visualize my rededication to Olivia's missing pieces and God's job for me? In 2022, during the Covid situation, a sweet lady at the local Nothing Bundt Cake, with her cute little black mask with painted on red lips and pearly white teeth. She looked up at me and said, "You are just beautiful today. Are you Irish?" Shocked by how adorable she was, I laughed for the first time in a while. She looked down at my online order and looked up with what I could only imagine a big smile behind the oversized mask and started singing to me.
She sang, "Kelly Kelly Kelly, K-E-L-L-Y". You know, the song from the hit TV show Cheers. The song from Woody to Kelly, the love of his life.
Unexpectately, my eyes filled with tears, knowing deep down that she was prompted by my patient Lord to sing a song of acknowledgment, if not significance to my musically castrated heart. Who would have guessed that?
Back in the 90's people would sing that section of the "Kelly Song" to me all the time, I haven't heard it for years.
When I walked out of the store, I wiped my tears and instantly felt the need to google this infamous song. To hear the rest of HIS message to me, the God who has been waiting. Waiting for me to finally let go, to finally let Him back in, to pick up my cross and assignment, regardless of the outcome. I found myself remembering and appreciating those bible stories of people and their faith waxing and waning through years of their individual trials as they attempted to walk by faith when the "sight" was looking dim. Abraham, Sarah, David, Moses, Hannah, Joseph, Gideon & Job to name a few.
Here it is, if you haven't heard it before:
As I listened, I knew immediately this was a love song to me .....and not from Woody, but from my Father in heaven, you know, the one I've been running from like a spoiled brat.
Listen in:
"Kelly, my darling, you are my sunshine. When we are together, I feel fine."
"Your smile is so lovely, your hair is so clean (ha), you make me feel like the whole world is mine." (understatement)!!!!
"Kelly, Kelly, Kelly, Kelly Kelly K-E-L-L-Y. Why because you're Kelly Kelly Kelly Kelly Kelly Kelly Kelly of MINE."
"Mine, Mine, Mine, Mine, Mine Mine Mine Mine Mine Mine....MINE."
If you watched the short video, you probably heard the response from the actress Kelly:
"Woody, that was beautiful." "You really liked it?" said Woody.
"I liked it more than anything", said Kelly.
"Thanks", replied Woody.
"SO.........where's my gift"? Kelly said while looking around the room, looking like a spoiled brat.
I can't help to think there was a message here for me.
That message can only be that He is my gift. His love, His patience, Him not giving up on me, Him showering my soul with the only gift that matters. That I am His and He misses me. He misses our time. He misses me crying out to Him for strength, for guidance, for healing for my girl.
He wanted to guide me to the ragged pieces that were stolen, not lost, from the puzzle box. Only He can make them suddenly appear in that deep cleaned closet of my soul, after the giving up was given up. Only He can lead me to the treasure trove of knowledge that for some reason was only destined to appear 24 years later.
So, here's to the New Year, to New Beginnings, to New Wisdom, to New Knowledge & finally New Possibilites for Olivia and her one and only life here on earth. How could I ever give up when I have the Almighty leading me on and calling me His sunshine!
xo
Kelly
"
Happy New Year!
2022 is Olivia’s year! We’ve learned so much and so hopeful for her healing journey this year! We are so excited to step into the new wisdom and understanding to the root of her health challenges.
Join me in my prayers that this year is going to be bright, full of miracles and wonders.
God is for us, not against us. He’s for Olivia and wants to see her healthy and whole❤️
Long time no see❤️
This little fable popped into my head the other day. I was thinking....To some it may look as though I've cried wolf on this journey with Olivia. As I pondered this comparison, I realized that I've done it many times throughout the years. It's gone something like this:
"I think I know what happened."
"I know this drug will help her."
"I know the Ketogenic Diet will stop them."
"I know this intervention is what she needs."
"I know that I know that I know, that this will help her."
And so on, and so forth. Year after year after year.......after year.
It was just so odd. Completely normal little girl - out of the blue starts having shaking sessions.
The boy in the popular fable was a trickster, he was seeking attention, and felt he only got it when his life was in peril. After being tricked many times, his family and friends began to question him, retreating from his cries to his very detriment - for when the wolf was real, his cries landed on deaf ears.
The shaking sessions ushered in an unwanted life of peril for Olivia, and I've been her voice. Her voice was silenced. I'm not a trickster, I'm not seeking attention. I'm not a liar. I'm a Momma set on a difficult journey, holding onto all sorts of hope for my beautiful girl. My cries are far different. I'm crying out FOR her, from a lonely, isolated place where believing seems to be a false flag. "Believing" cries that now sadly rest on deaf ears because there hasn't been any substance. I get it. I would question it too. For some odd reason, I've felt like I'm supposed to share her story with you. Some days I feel like saying "Hey you....do you want to follow this crooked path?" Only to find myself cowering in the corner with the blinds drawn shut, the very next day.
I've had a difficult time since the hospital stay from hell three long years ago. It was the ultimate trigger for a downward spiral for both Olivia and I.
Just being real.
Don't get me wrong. Olivia has recovered to 90% of her baseline pre-hospital status - all except the walking. I count my blessings everyday that she defied the post hospital prognosis. She can lift her head. She can eat (no feeding tube). She can sit on the floor by herself. Everything, but the walking. For me, I've dug myself out of that self-pity pit. I've moved from anger, resentment, bitterness, doubt & unbelief. Some of you may have been around during this and I'm sorry if you were caught in the crossfire. I've repented my screams that "He's not coming through for me, He's not coming through for her". Everything, but her complete healing. The healing I've dreamed of for 20 years that seems to consistently go off course to a crooked kind of scenario that takes months, if not years to recover from.
There is a theme in my dreams that have been happening for 20 years - that theme is loss. Last night's dream was no different. I had a clinic appointment and went in to check-in. The receptionist told me that my appointment was actually the next day, but she said I could wait. While waiting, I decided to use the restroom and was instructed it was just down the hall. As I started walking, the hall became longer and longer until at one point I walked through a ballroom where people young and old were dancing. I became tired and worried about getting back to my appointment. When I finally returned, the clinic was closed and I had to try again tomorrow.
My dreamworld mirrored my existence. I was always searching. Always studying, researching. Going down long halls of information while watching all my friends & family living their lives, dancing to the melody of life in a giant ballroom. As they enjoyed their toddler, I was searching. While their children moved through the school system, I was distracted by the distance of my walk, only to find out I was always early, never on time. Fighting an overwhelming feeling that I had lost Olivia and could never make it right, never get her back and feeling a weight of responsibility that is so emotionally crushing that, at one point in 2018, as I took her damaged body and soul home after that last hospital stay, I became so lost I did not know how to even find the hallway back.
Distraction became my friend as I watch her lay on her back, unable to even lift her head.
It was too much.
Feeling betrayed by my journey, I distracted myself with other things. Distraction from the pain. Distraction from the betrayal of a 3 month hospital stay, or was it a different kind of betrayal? I'm still processing that one. I threw myself into a new passion ----- my passion with photography that I never pursued because I was stuck in the hallway.
Then, 2020 hit and we were all stuck in the hallway with new fears, coupled with more loss and more deceptions. Olivia's therapist mentioned this revolutionary thought..... 2020 actually carried with it a possibility of seeing life with actual 20/20 - looking back on things with a clearer image - because we all know that looking back often renders the vision of our mistakes or missteps done in the heat of the moment, or simply due to the lack of knowledge we possessed at that time. This was Truth for me. I could never help her because I never knew how the injury damaged her, and I wasn't alone. Not one doctor I took her to knew what was happening to her.
I was a willing vessel to lose that ignorance, but as I've found out recently I was always before my time.
A friend shared her husband's view of me - Tenacious.
Tenacious -
Tenacious people move past the criticism and judgement. They have a goal. That's it. God obviously knew what He was doing when he created me. That definition reminds me of a favorite quote by Theodore Roosevelt:
“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”
What I've come to realize is that I was never meant to be in the ballroom. I'm meant for the arena. I've stumbled. My face is marred by dust, sweat and blood. I've strived valiantly. I've erred. I've come up short again and again. I've spent my time on a worthy cause, and I'm praying that someday, I will triumph and be used as God's instrument to heal my beautiful girl. You see, the ballroom isn't suited for the race designed for me. Ballrooms lack the stairs needed to strengthen my endurance. My tenacity. Tenacity produces perseverance, perseverance produces faith. Or as James 1:3 says, "because you know that the testing of your faith produces perseverance", or Romans 5:3 "Not only so, but we also glory in our sufferings because we know that suffering produces perseverance". Tenacity. Endurance. Perseverance. Which comes first? The suffering seems to be the catalyst and is defined by our individual "race" or "run". The race we can't quit. This verse has been lingering in my mind for several months, especially the "everything that hinders and the sin that so easily entangles" part.
Hebrews 12:1 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us.
Throwing off the sin that so easily entangles. This is a word for the wise, for the wolf criers. I'll never mislead with my cries. For me, the cries indicated the building of my faith, a sort of call for prayers for my vision....my believing. My cries are the seeking of that smooth path to emerge. Cries to submit my voice to my voiceless daughter only to restore her voice. Maybe reimagining crying wolf in the first place. I promise, I'll never fool you.
Thank you for being patient with me over the last year or two, as I've been cowering in the corner. I do feel covered in prayer for the first time in a long time, so Olivia must be on someone's mind. God's Timing is perfect, but those waiting in the hallway are not❤️
Hi ;)
Long time no see.
Obviously, I took a much needed hiatus, but now I'm back. I missed you.
22.
My Baby Girl is 22 today and I am a mess of emotions.
Just being real.
Leaning into this very important verse:
For....I....KNOW the PLANS I HAVE FOR YOU
Plans to PROSPER YOU
Not to harm you
Plans to GIVE YOU HOPE & A FUTURE.
It's been a hard week for Olivia. Not sure why.
Praying for a better day tomorrow.
Thank you for joining me❤️
xo
Kelly
