I genuinely look forward each week to writing these posts. I love the interaction with the readers, and I also enjoy perusing others’ blogs to see what they are saying – I would have to say I love the whole experience! So thank you to those who read, those who respond, and to those who so graciously welcome me into their blog space!
Today, I truly want to introduce you to a friend of mine. I have asked Joy if it would be all right to introduce her, and to share a letter she recently wrote to those with whom she corresponds. I am delighted that she has given me the okay, as I think you will be encouraged and inspired by getting to know her a bit, and by reading a letter she wrote recently about an experience she had in the Emergency Room………
Joy and I have known each other for many years, having met her and her son, Kekoa, shortly after Kekoa was born with severe Cerebral Palsy, Microcephaly, and C Protein Deficiency. He is now around 27 years old, and lives in Hawaii, where he has lived his entire life with his mom. Kekoa has never walked, or even crawled, but he has been all over the world. He has never spoken a word, but his life speaks volumes. He currently spends his days either at home amidst a flurry of activity centered around his care, or at the hospital fighting one more infection and dealing with the issues of a 27 year old body slowly failing. (People with his severity of CP don’t usually live past 17 – a testimony to the many times God has intervened, and to the excellent care he has received over the years from his mom, dad and step mom, and many caregivers.) Yet, through all of this, Joy and Kekoa exhibit a type of life and joy that draw others to them like a moth to a flame. Their joy and stability do not come from their own inner abilities, as they are both exhausted. Nor does it come from their outside surroundings, as they live in a humble home, kept busy with nurses, aids, and a constant flurry of medications, IV’s, suctioning, and care around the clock. Joy would tell you without missing a beat that their joy and stability comes only from their relationship with Jesus Christ.
When Kekoa is feeling well, which isn’t as often these days, you can hear his contagious laughter clear down the hall! He loves “Wheel of Fortune” and hearing his Mamma or a caregiver read Bible Stories to him. He loves it when his dad and step mom care for him because his dad loves to play the guitar for his son. He will quiet down and listen intently if you pray for him, and his Mamma calls him “angel seeing boy”, because he will sometimes look intently up at the ceiling and suddenly break out in a huge grin, filling the room once again with laughter. He used to love wheelchair rides down the block, and car rides, but his condition is such that he can no longer sit, and most often his rides are now in an ambulance.
Joy, amidst as much time at the hospital now as at home, can often be seen at the hospital chapel, praying for a myriad of others close to her heart, or getting a quick bite to eat at the nearby Burger King, inviting a local homeless person to enjoy a lunch as well, while she tells them about Jesus, the lover of her soul. She isn’t preaching, she knows through experience that Jesus is real, and that he intervenes in the affairs of his children daily. If you had a moment, she could share story after story of God’s intervention on their behalf over the years. If you had the opportunity, the story of Kekoa’s recent all expense paid trip on a medical transport plane to LA to get a better assessment on his ability to feed would be a good story to hear; or the recent act of their local Congresswoman that gave Kekoa the right to obtain the $10,000.00 TPN food he needs to live would be another story worth hearing. Or maybe the medical bed that cost thousands of dollars that Medicare decided they needed to pay for several years ago, so that he wouldn’t get bed sores, would be another amazing story to hear. Everyone who knows them, knows that these are just acts of love and grace from a heavenly Father who knows what his boy needs.
Recently, while at the Emergency Room one more time, Joy had the privilege of an experience that I would love for her to tell you herself. The following is the letter she wrote to those she writes regularly in order to keep them posted on Kekoa’s care. So without further delay, here is Joy’s letter:
Dear Ohana and Friends, [Ohana is “family” in Hawaiian]
The fire-retardant, polyester cubicle curtained in the Straub ER are green with bamboo print. They are meant to ensure privacy and to a certain extent, they do. But often times, as we wait for x-rays and blood tests, we become “ER librarians” taking in and categorizing the medical history and personal pain of those just feet away, whose faces remain unseen. Sometimes we hear funny family conversations, mini sitcoms with canned laughter. But more so, we hear stories of misery and literal cries of pain that the mesh curtains cannot hide and that is when one must make a decision, to care or to ignore. Last night, this was the scene. A homeless woman in pain and “fear of dying alone” came in next to us. The stench was so severe, I was repulsed. I wanted to cover my nose and eventually did ask for a mask. Preoccupied with Kekoa, she took up no room in my heart. I was exhausted and had my own hip pain to handle as I had just been told earlier that morning that I likely have a herniated disk. We had just been home for three days and since I last wrote, Kekoa had been hospitalized two more times. Justifying my apathy wasn’t difficult. But then, as I heard the soothing words of the lab tech and gentle words of the nurse as they tended to her wounds and finally, a kind doctor discuss with her the possible need for surgery, I closed my eyes and asked God to enlarge my heart, to help and comfort her. And you know what, she did seem to be comforted by all the care she was receiving and as for me, God gave me grace and another chance. About 1:00 a.m., as Kekoa was being ushered to a room on the 6th floor, this dear, important lady was being rolled out of the elevator from radiology. She stared at us and as I looked into her weathered face and beautiful eyes, I said, “I’m praying for you.” Her response was radiant and said “thank you.” The stench was replaced by a breeze and I immediately lost a few pounds of exhaustion.
Being a follower of Jesus and not caring for others in the midst of personal pain seems absurd. I often ask Abba to give me a glimpse of what He is doing on this mighty journey. One thing I am seeing is that He is more concerned with transforming me than changing my circumstances. As you pray for Kekoa’s infections and dislocated hip pain, please pray that I do not walk in the footsteps of the absurd.
One more thing, I want to thank all of you for praying for a caregiver and for the TPN situation. We have two huge praises to report! God has sent our dear friend Ryan Rij, who is taking a gap year in-between high school and college to help Kekoa and me. She has been here three weeks and is a bright light in our home, full of fun and godly wisdom. And, she loves poke!!! [Poke is a dish using a certain type of fish] Also, thanks to the efforts of Congresswoman Tulsi Gabbard’s office, Kekoa’s TPN has been approved by Medicaire! Yes, Kekoa went to Congress! A very special thanks to Jay King! You caring heart speaks loudly.
We covet your prayers and send love,
Joy and Kekoa
“If a man shuts his ears to the cry of the poor, he too will cry out and not be answered.” Proverbs 21:13
“Let each of you look not only to his own interests, but also to the interests of others.” Phil 2:4
Thank you for taking the time today to read this amazing story about two of my heroes and the God who sees and hears and cares for his children. Should you have a story of God’s care, I would love to hear it. Blessings!