If you are wondering, "How can I have this kind of faith?" We would love to hear from you. You can message us on here, facebook or email. I am attaching the link to Kayli's final video so she can tell you herself. https://www.youtube.com/watch?v=oGyCR5hHAa8&index=3&list=PLnq_Owq85c8Jm-0WXAkPeHe1EjwhrKIwc
Greetings to you all from Northeast Ohio. Spring is slow in springing this year...we will probably jump right into the heat of summer from the damp, chilly days we are having now. Ohio keeps you on your toes as you never know what to expect day to day. Life is much the same really. Each day looks a little different and can change by the minute. I thought I would take some time to update you all on how we have been doing since Kayli left us to be with her Savior. It has been hard. Period. We have always been a close family and always will be. One of our members isn't here with us anymore...and it hurts. It is hard to describe to you what the separation feels like unless you have experienced it for yourself. For those of you who have walked this mile we are on...my heart aches for you and the deep loss you will always feel. I am so very sorry for the grief that you experience by burying your child. It is a pain of the heart like no other. For those of you who haven't experienced it...I hope that you never do. I will try to help you understand a little better what it may feel like, yet you can't possibly know the weight of it without it happening to you. It feels like a thousand little things that you want so very much, yet you can't have. It feels like standing on your tippy toes to reach that item in the cupboard that you absolutely have to have, yet it is always out of your reach. It feels like the end of a brilliant story line where you are expecting the "happily ever after" and then the plot twists leaving you feeling broken and wanting it to change. It feels like nearing the end of a puzzle and finding that one of the central pieces is missing and will never be recovered...it just will never look right without it. It feels like a balloon that once was inflated and full of air with a slow leak now and you just can't locate the hole, but you know it is there. It feels. Grief is such a difficult season to go through. The pain is so real and invisible at the same time. You can't put a band aid on it, take medicine to cure it( although some try to dull the pain with it), you can't make it go away on a certain timetable, and you never know when it is going to surface and make that moment difficult for you and those around you. A friend of ours pointed out that we are sort of the "elephant in the room". It's true and we know it. Grief and sadness make people uncomfortable. They want to say or do something so that you don't hurt. They maybe avoid you for fear of either saying the wrong thing or not knowing what to say at all. Grief is pain and it is hard to watch people you love suffer. We know. We have watched one of our most precious gifts suffer and die. It hurts and it isn't fun. But, it is necessary to go through the pain when you love someone. It is alright for us to hurt right now. Don't be afraid to approach us. You won't make us sad...we already are. Will it always feel like this? Probably not. Will it always hurt? To some degree...yes. The grief will change as time goes by. Right now it is fresh and raw and our hearts and minds are learning what our day to day looks like without Kayli here. Some days are laughter and silly remembrances and others are just longing for the old normal. Some day a scab will form and then a scar. We will never not think about our daughter. We will never not be sad that we didn't get to walk through more of this life with her. She is forever a part of us. However, this isn't all there is. We know that this separation is only temporary and because Christ paid the price for our sin on the cross, we have the promise of eternity together in Heaven. This makes all the difference. It doesn't mean that we are without hope right now because we mourn for our loss. Quite the opposite. Think about your children, your loved one...that person in your life who means so much to you. What if God decided that today was there last day? He holds the number of all our days. You didn't get the the choice for them to stay or go...it is totally out of your hands. Would you not be anguished that you could no longer see them, touch them, talk, text or just see them at your convenience?? It could be a reality for you. It is for so many people including our family. People don't belong to other people. They are a gift to us by a loving God. I was reminded recently of what our response should be when we receive a gift. You don't just take the present and go on your merry way (at least you shouldn't). No, you should take the gift, open it and thank the gifter for giving it just to you. Thanksgiving. I am so thankful to God for the gift of my loved ones. I am especially thankful that He made me a Mom to 4 amazing kids and gave me a wonderful husband of almost 25 years. Do I own them? I sort of feel like I do, yet I know deep down that I don't. They are on loan to me and I need to appreciate and love on them while they are with me. By doing this, I am thanking the Gifter everyday. I am thankful even now, during my tears, for the 2 children that have gone home to Heaven ahead of me. Joshua was with me for 20 minutes and Kayli for 21 years. My life was changed and blessed because of their short lives. I will never be the same and God knew that I needed them specifically to teach me things that I couldn't learn any other way. I choose to see that blessing as my heart aches. I still have Caleb and Luke here with me. I am so thankful to be able to pour into their lives and leave my mark on their hearts. You will leave a mark on the people He has entrusted to you. If it isn't what you want it to be....make those changes now and don't squander the days. God is good and makes no mistakes. I know where all my children are. Kayli and Joshua aren't "lost"...they have relocated for now. I (and Michael and the boys) all have this great hope by making Christ Lord of our life and our Savior. Heaven isn't some prize that everyone automatically receives at the end of their life. You have to make a choice to receive it. No amount of good works, dollars in your bank account, being a good person, etc...will change God's plan for those who receive Heaven when they die. He has made the way now. You choose it now. You don't know when that time will come for you. Kayli had the benefit of knowing that her death was approaching...many do not. She was ready...are you? I am attaching the link to a song that represents Kayli's life and our family's faith so very well. We thank you all for your continued prayers for our family during these days. https://www.youtube.com/watch?v=1TKAN-nAsu8
If you are wondering, "How can I have this kind of faith?" We would love to hear from you. You can message us on here, facebook or email. I am attaching the link to Kayli's final video so she can tell you herself. https://www.youtube.com/watch?v=oGyCR5hHAa8&index=3&list=PLnq_Owq85c8Jm-0WXAkPeHe1EjwhrKIwc
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Today marks four months since Kayli went home to Heaven. Four months since I have looked in her eyes, gave her a hug, seen her smile or heard her laugh. Four months. As the awareness of her absence is heightened on days like today...the size of the crater left is tough to get around. Yet, I do it in each moment. As I have aged, I have realized that life is a series of moments. I am so thankful for all the moments that I have tucked away in my heart. 21 years with Kayli to be savored for my lifetime. It somehow feels not enough and overflowing at the same time. Crazy I know. Yet, of all the moments shared with my daughter, one of our very favorite things to do was have "coffee time". Coffee time was a time to sit, have a cup of joe and plunge deep into each others lives. It was going beyond the surface and loving big on one another. It was precious. Kayli taught me so much about pursuing other people. She learned the art of loving with abandon and having the hard conversations to make you a better version of yourself. She lived her 21 years well. Was she perfect?? NO!! Did she make mistakes?? More than she would like to remember. But, she knew that you are not defined by your mistakes when Christ is Lord of your life. She knew forgiveness. She extended that to others. You can't give to other people what you do not have yourself. You can't love fiercely if you don't know a limitless love. You can't forgive others when they wrong you if you haven't experienced perfect forgiveness in your life. You can't pursue someone's heart if you haven't know the pursuit of Christ. This list could go on. Kayli knew Christ and this was shown in how she poured into others. Coffee time. Today I have my coffee alone. Tears flow as I remember how wonderful it was to have had those days with my precious girl . In her good-bye video to me, she says, "And if there is coffee in Heaven...we will have coffee time together". I can't wait baby girl...i really can't wait. So I challenge you to start a "coffee time" in your life. Even if you'are not a coffee drinker...it doesn't matter. Put down the phone, the ipad, ipod, laptop, game system...whatever steals your attention from those in your life. Turn it off. Sit down with someone important to you and pour into them. Don't squander your relationships waiting for a better time or when this or that happens. You don't know how today will play out and you may never get that opportunity again. Coffee time. Give God your best and leave the results up to Him. I am praying for you.
At Kayli's celebration of life service, this testimony was given during the sharing time "When I think of Kayli, I always think of Mary Poppins. Which may seem like a weird association, but if you know anything about Mary Poppins, she was practically perfect in every way. And if Kayli heard me say that she would gag!" This brought many chuckles from the full auditorium of friends and family. I know that would indeed have been Kayli's response. She knew better than anyone that she wasn't perfect. Kayli was who she was because of the great work the LORD JESUS CHRIST had done in her life. Kayli accepted what the Lord had done for her on the cross at a young age. But the huge change in Kayli's life happened about a year after her fourth relapse. To quote Kayli's own words from her "Live Like You're Dying" video, "Two years ago when I relapsed for the fourth time. My doctor told me that I had less than a year to live. Okay, I was like 18 and I was like 'that's crazy! Eighteen year olds don't die…that's like for people that are 70 or 80... I was freaking out about all the stuff that was going on. I was very me focused. Like, what can everyone do for me? Boohoo, I'm the one going through this, I'm the one that is going to die. Let me just curl up in my bed and cry for myself. That year in February, which wasn't long after the doctor told me that I had a few weeks to a few months to live, on my 19th birthday, which should have been a joyous occasion…I cried most of the day because I thought this is the last birthday I will ever have here on earth. And I did not enjoy it all. I was crying for myself; having a pity party. Now 2 years later, by God's will I'm still here and I recently celebrated my 21st birthday and I had a great time! I didn't think about it like there was finality to it, that this is my last birthday. Although it might be, none of us really know when we are going to die. People say you should "live like you're dying" and for awhile I did the whole feel sorry thing... But I decided I really did want to live like I was dying, because I am and I was. For the last two years I have been able to live that way. I've been able to live in God's will..." (Testimony video recorded on 2.27.15) It is the natural response to always think good of those who have passed away. And there is nothing wrong with that...if we keep it in perspective. The risk is that we will start thinking that "if Kayli was good enough to go to Heaven, than I can achieve that same goodness." And that is not the case. Kayli would want us all to know that she wasn't perfect and she was a sinner in need of God's grace just like the rest of us. Take some time to look at your own life. Are you living like you're dying? The most important thing for us each to think about is, "Where will I spend eternity when my time on this earth is over?" Will I spend it in Heaven with the Lord Jesus Christ and see Kayli again? Or will I spend it in the eternal prison for sinners…hell? If you honestly look at your own life and heart, have you kept God's law? Not sure what God's law included? Let's look at a few of them...Thou shalt not lie, thou shalt not steal, thou shalt not make for yourself an idol. Now when you hear the last one you may think, "I'm good on that one. I have never bowed down to a little statue." But have you ever made anything more important than God? That is an idol of the heart. Those are just three of the Ten Commandments (God's law). If you are REALLY honest with yourself...can you say you have never broken one of those? Now you may say, "But I feel bad about what I did and have asked forgiveness." Think about it this way, suppose we go to a court of law here in the USA. Let's say you have committed a crime and are standing in front of the judge. Would the judge just say, "I'm really glad you feel bad for what you have done. Go ahead and walk away without any punishment." Would that ever happen? No way! Not if they are a good judge. Someone has to pay the fine or take the jail time. It is the same with God's law. Someone has to take our punishment for breaking it. You ready for the good news? Jesus, God's son, came over 2,000 years ago and died an awful death on the cross to cover our sins. Jesus was a sinless man and died to pay the penalty for the sins of the world...but there's a catch. We have to accept it. Let's go back to the court room for a moment. You are standing before the judge...you have been convicted of the crime. You aren't able to pay the fine, so that means you are headed to prison. Right before you are led off to prison, someone you don't know walks in the court room door and says, "I will pay their fine." Wow! Would that be a shocker or what? Now is the judge going to let that person pay your fine if you don't accept the offer? No way! It is your crime-your punishment- your fine. You have to choose to accept it. It is the same with punishment for breaking God's law. Jesus is ready to pay our fine, but we have to choose to accept His gift. The Bible says "that if you confess with your mouth Jesus as Lord, and believe in your heart that God raised Him from the dead, you will be saved; for with the heart a person believes, resulting in righteousness, and with the mouth he confesses, resulting in salvation." Kayli made goodbye videos and in each one she pleaded with all of you to make this decision! She wants to see you ALL again!!
If you would like to watch the full version of Kayli's Live Like You're Dying Video click on the link below:
https://www.youtube.com/watch?v=6yqaPZc4Yj0 ❤ Journal Entry from January 21, 2016 ❤ Wow! Tonight I am really missing my sis. I'm not even sure why it hit me tonight. Usually there is some kind of trigger, but tonight out of the blue, I just really wanted to make a trip to Akron Children's to see my sis. On most days it is still very hard to believe that my sis isn't here on earth anymore. It feels like any day now, I will be able to make the trip to Akron Children's or walk across the yard to visit Kayli on a break from the church office. It feels like I just have a cold and can't go visit because of the risk of passing germs to her. It feels like she is just away at college and any day now she will home for a break. Now I know these aren't true and each day, each event makes it sink in more...my sis at heart is living with Jesus. ❤ Journal Entry from February 20, 2016 ❤ Today as I stood at my kitchen sink doing the dishes, my eye couldn't help but drift to the picture sitting on the window sill. The picture is one of Kayli and I from a year ago. I had printed the picture and made Kayli and I matching frames that proclaimed the words "Sisters at Heart." This picture and frame found its home on my kitchen window sill almost immediately after we moved into our apartment last November. I would often see that picture and it would remind me to pray for Kayli or send her a quick text. Now it serves as a reminder that Kayli is gone and that can bring an empty ache, when I think how I won't see her again here on earth. But then I have to give myself a shake and remember, Kayli is LIVING with Jesus!!! There is NO WAY she would want to be back here in her cancer filled body. On these hard days I need to stop and think "Who else may be having a hard day? What can I do to brighten it?" The Lord has taught me so much about loving people through hard times over the years. Quite a few of those lessons came through Kayli's life. No beating around the bush...loving people during hard times is tough. Whether hard times mean a relationship conflict, health problems, jr. high hormones, life changes, a death, or you fill in the blank. There are so many tough things that we each encounter and we need someone to come alongside and encourage us. Just this week a friend texted me and said I was on her heart and that she was praying for me. That meant so much!! It doesn't take much sometimes to lift someone up. We each need to train ourselves to be on the lookout for those around us who might be hurting. They are EVERYWHERE! Now, I am not saying that I do this perfectly. I have my days when I want to curl up in my bed and feel sorry for myself. But that ISN'T what the Lord wants us to do. He wants us to look for ways to serve and love on others. And guess what? You (as the giver) are blessed as well. I have learned that the best thing for me to do when I'm having a hard time is to love on someone else. It doesn't have to be anything huge, but it helps put things into perspective. Now I hesitate to start making a list, because like I already said, I don't do this perfectly. But I know I always need ideas of how to love on other people. Here are some ideas to get your creative juices flowing: ❤ Pray for people and let them know they were on your mind. ❤ If you see an item that reminds you of a friend or family member, pick it up and surprise them with an "I love you gift." ❤ Randomly send a text or email to a friend with a fun memory or picture. ❤ Know that a friend is in the hospital? Check the hospital website to see if they do eCards. ( A lot of children's hospitals do this.) You go on the website fill out the form and the hospital volunteers will print off the card and deliver it to the patient's room. Sending a joke or funny story is always a good option to make them smile. A verse from God's word is always good to include. ❤ Offer to babysit for a young family FOR FREE so mom and dad can have a date night! ❤ Be creative...Pintrest has hundreds of cute ideas!! (See pictures below for some other ideas) ❤ Do you have some exciting news to share? Make sure to include a friend or family member who is going through hard times. Let them be excited with you. ❤ Surprise a friend at work or home with a coffee, smoothie, shake or another treat they like. ❤ Make it a point to look around when you walk into church. Who is sitting by themselves with no one to talk to? Go over and talk to them. Make them feel loved and included. ❤ Invite a family from church over for a meal. ❤ Bake cookies and take them to an elderly person who can't get out very much...and stay to visit for 30 minutes or so. ❤ Remember a friend's birthday with a card or small gift. ❤ Be a listening ear when a friend or family member just needs to talk. ❤ Love on people like they are NORMAL and not just because they are going through a hard time. I know Kayli liked to talk about random things. She didn't always want to talk about her cancer or how she was feeling. We would talk about "What Not to Wear" or "Say Yes to the Dress," her newest nail polish or things happening at church. Now this is a fine balance; you don't want to ignore the hard stuff if they want to talk, but there are ways to open the door for discussion without forcing the subject. I hope this list gives you a start, but look for your own ways to love on people. Make it your own! Kayli's Sis at Heart, Joy Gift Ideas:Gifts I have either given or received Joy (Miller) Steiner & Kayli first met when the Hostetler family visited the Orrville Grace Brethren Church when Kayli was one and Joy was six. The Millers and the Hostetlers hit it off rather quickly and in later years the kids began referring to each other as the "Millstetlers. Joy says, "I thank the Lord for Kayli and the friendship He gave us!! And even though I have cried buckets of tears over the past 14 years, I wouldn't trade the moments we shared for anything!"
“This little light of mine, I’m gonna let it shine.” We all have heard or know this song quite well. I have heard my children sing…really, scream those words over and over. When I was reflecting on the impact Kayli’s life has made on me, I began repeating those words to the classic children’s Bible song. Kayli had such a bright light for Christ, it was impossible not to see it. Her disease may have taken her dreams and physical abilities, but it couldn’t dim her light. She definitely didn’t hide it under a bushel. No! She let it shine. Through her VERY long and courageous battle, she and her family graciously shared her journey with all of us. Not for attention or pity, but to show how the Lord was holding them every step of the way. I can’t even begin to tell you all the ways that Kayli has inspired me. A friend and I went and visited Kayli a few months back. Being women, we love to talk and before we knew it we had been there five hours. We laughed, cried…well I cried, Kayli painted her nails and we all just enjoyed our sweet time together. She never once complained about her circumstances and gave all the glory to God. She helped me realize life is precious. The little moments pass by quickly but make the best memories. Kayli taught me what choosing joy in your pain looks like. That the Lord can use you no matter where or who you are. We just have to open our hearts and allow him to work in us. Kayli shined her light for Christ to more people in her hospital bed than I, able bodied, have done. Talk about putting things into perspective. Through her death, I think it’s so important to draw close with our Sovereign God. The Lord is close to the broken hearted and saves the crushed in spirit (Psalm 34:18). God is truly never more near than when His children are suffering. In Isaiah 41:10, the Lord says do not fear, for I am your God. I will strengthen you and help you. Our hearts ache at the loss of a truly amazing and beautiful daughter, granddaughter, sister, niece and friend. Let’s keep her light shining. Allow yours to shine. Imagine those who could be led from the darkness and open their hearts to Christ. Kayli loved my daughter Addison and I have taken Kaylie’s beautiful testimony as a model for her of what a woman of Christ looks like. In the meantime, I encourage you to walk whatever path you may be on, not in the dark but with the light of Christ! Hi everyone – Jennie (the best friend) here. For those of you that have gotten to know Kayli through her blog and on her CaringBridge site, you’ll know that her motto, “Finish well” motivated every action, every step she took.
It is both my sorrowful and joyful privilege to inform you that she did, indeed, finish well. The Lord called my dear friend home and into His arms on Sunday, December 13th at 4:55am. She was prayed and sung into her Father’s arms by her mother and father. She finished well in every sense of the word. Her life on earth, although she was still human and still made mistakes, was one of purpose and intentionality – she strove each day to love on those around her – the people she knew and was close to, as well as ministering to and loving those she had never met. Kayli said once that “the only thing you can take to heaven with you is people….and I like to pack a lot”. I’ve read the comments on her CaringBridge and the words of support and condolences on her parents Facebook pages, and it is evident that she’s had an enormous impact on this planet. She allowed God to use her, and he will continue to use her legacy for His glory. She also finished well in her preparations to care for those closest to her. Many of her wishes for her burial (which took place on Tuesday with her family in attendance) and her celebration of life service (which is Saturday, December 19th at 11am at Orrville Grace Brethren Church in Orrville) were written out – she wanted to ready as many things as she could so that her passing would be easier for the ones she was leaving behind. She also recorded video messages for various people like each member in her family, her extended family, and even recorded a video for those who will be in attendance at her celebration of life service tomorrow. After the burial on Tuesday, we were able to watch her video for her extended family – how wonderful it was to see her smiling face and hear her voice! She was "ever Kayli" – moments of seriousness and moments of silliness – leading to a combination of tears and laughter from those watching. How comforting these videos will be to her family and friends in the coming days, weeks, months, and years; as we continue to feel the loss of her presence. And although it makes my heart so joyful to see the impact she had on others and to have the knowledge that she is in heaven – fully healed and restored, able to do all the things that were taken from her by cancer – there is still an indescribable emptiness in my heart, and in the hearts of her family members. Losing someone is never easy, and I have never lost someone this close to me before. The grief comes and goes in waves….and that is okay. It’s all part of the grieving process (so I’ve been told). But I (and I know her family, too) am so grateful that God is there to brave those waves that crash around us and seem to suck the air and life right out of us, that He holds us tightly in His arms always. He gives us more than we can handle, but promises to be the strength that we need to go on, to continue living, to rejoice for the peace and comfort that Kayli is now experiencing, and to live with the future in mind – a future where we will be reunited with Kayli and will never be separated from her again. But not all people have this kind of hope. We do not have this hope without our faith. Many times during this week, I have grieved for those who are grieving without hope – without that blessed reassurance that there is something beyond the grave. That our death is not where our lives end, but instead, is where we truly begin to live. I would beg of you, as Kayli pleaded (and continues to plead): look to Jesus. Search the Scriptures and know Him for yourself. Run to the One who laid down His life for you – He is purpose and meaning. In Him, you will find fulfillment. In Him, you won’t find constant happiness (a feeling based on circumstances), but you WILL find joy and peace. He will give those to you, to strengthen you in the times of heartache and despair. The same arms of God that now hold Kayli tightly are the same arms that will hold you forever and never let you be separated from Him….if only you let Him. Please….let Him. I can’t wait to see the look on Kayli’s face as she greets those she impacted at the gates of Heaven, surrounded by angels and those who have gone before, and says with a smile on her face “Welcome home! I’m so glad you’re here – we’ve been waiting for you!” If you would like to join us for Kayli’s Celebration of Life Service, please come – and wear something bright and cheerful to joyfully remember her legacy here on earth! This service will take place tomorrow (Saturday the 19th) at 11am at Orrville Grace Brethren Church in Orrville. For more information, and to view Kayli's obituary, click on the link: http://www.aublefuneralhome.com/obituaries/Kayli-Hostetler/ A little while ago, Kayli asked if I would like to write a guest blog post on what it’s like to be the best friend of someone with a chronic and terminal illness, specifically cancer. Being Kayli’s best friend has been the hardest and most wonderful privilege I’ve ever had. Honestly. Knowing Kayli is one of the things I am most thankful for in this world. But knowing her and seeing her go through these times of sickness and uncertainty has been one of the hardest things, too. This sounds somewhat cliché, but if I had to go back and choose to do it all again, to be her best friend through so much, I would absolutely choose her as my kindred spirit every single time. Due to being at college, I don’t see everything her mom sees (whose blog post you can read), but I do see some of that when I’m able to come home for weekends and on break. I usually see her at home or in the hospital, although recently it’s been only in the hospital. I know that for as much as she loves and appreciates her nurses, she wants to be at home with her family and Baxter. I treasure every opportunity I’m able to see her, but I miss the days when we used to hang out at her house, eating ice cream and binge-watching Psych or some other TV show while snuggling with Baxter. I see her level of sheer exhaustion, but her determined effort to stay awake during my visit. She would hate to have slept through an opportunity to see and talk to someone she loves and makes an effort every single time, although her pain is always strongly present and each visit wears her out. I used to see her sit up and prop herself up in her bed, but now I see her grimace in pain as she tries to scoot herself up on the pillow and as nurses have to help her sit up. I see how she makes the most of her time: not worrying about drama or those that would like to cause drama, but loving and spending time with those who have stuck with her, who will always be there for her. I see how it hurts her when people she used to be close to, use to rely and count on, pull away. I’ve seen how it hurts her when I have been that person who pulls away. But I’ve seen her forgive and love and cherish people like no one else I know. She truly makes every minute count. She loves fiercely and fully, not holding anything back. We talk and laugh at each visit, remembering all the crazy fun stories and adventures we’ve had over the last decade or so. She always asks about my life and prays for me when I’m struggling with something. She is Kayli as I’ve always known her. Though her body has been weakened greatly, she is still the same person she always was. In fact, all of the wonderful things about her have been strengthened by what she’s been through: grace-giving, loving, thoughtful, selflessness. We’ve had some sobering talks about the future, but have always come back to the theme of kindred spirits, a phrase we’ve borrowed from the Anne of Green Gables books. She is in every way, shape, and form, my one and only kindred spirit. Nothing will ever change or take that away. I love her as if she were my own sister (and she in many ways is), so even just thinking about something happening to her brings me nearly to tears. Sometimes it’s hard to entrust something/someone you love so much into the hands of God, because while He will always do what’s best, He may not do what you want. But I’m reassured that above anything that I could have planned for Kayli, He has a plan that is perfect, good, and for her good. Some days it’s hard to think that, but most days, it is a truth that I cling to and depend on. Kayli, thank you for being my best friend and my kindred spirit all these years. You are truly the epitome of a “Diana Barry” type character – loyal and loving and kind – a perfect contrast to my stubborn “Anne Shirley” self. I love you more than I can say and I am so thankful that God made us best friends. You have been the steady and faithful in a life of change and uncertainty. Thank you for all that you have invested in my life. I am a better person today because of the influence that you have had on me. It has been such a privilege to do life beside you for all these years and for the years to come, for “True friends are always together in spirit”. I love you! Hi everyone...it's Kayli's mom. For some time, Kayli and I had talked about me writing a guest post on her blog about giving you a glimpse of her life through my eyes. Today is that day. I am Kayli's caretaker 24/7 and I have the privilege of seeing the beauty, the pain and all measures in between. Today I want to let you see what I see. I see her need help with almost everything. Her independence is gone. She needs me to help her sit up, stand, walk and lay down again. She grimaces in pain as I support her back to help her sit. Her eyes, dark underneath from the constant battering of her cancer, look into my face with gratitude. I hug her and kiss her forehead. We stay like this for a minute. We savor the moment of love. Then she stands. Her back doesn't support her and her legs are weak and don't always work like they need to. If her hips are out of place we just use the wheel chair. The effort is great. The exertion of moving makes her breathe heavily and heart race. She feels overdone from the simplest of maneuvers. She smiles at me and apologizes for it being hard. I assure her that we have all the time we need and we can just take our time. We get her settled again and comfortable and then the process repeats the next time she needs to use the bathroom or get up. It isn't easy anymore. Nothing is. I give her medications by mouth multiple times per day. She can swallow a dozen pills at one time without batting an eyelash. In between these, she requires multiple injections through her PICC line. I come in, administer her medications, and hope that she will be more comfortable for a little while. She never complains to me...she thanks me. She looks at me with love and sorrow all mixed together. Love for all I am to her and my faithfulness in standing by her through every trial. Sorrow for all she feels she is preventing me from doing. Silly girl. I am loving and doing because that is what a mom does. The love and protection you have for your child isn't based on sunshine and easy days. It is based on them being a piece of you with a depth of love that only the Father could explain the intricacies of. As unnatural as our situation is, the care I give is as natural as breathing. She is my daughter and so I express love to her through walking this mile in every hard moment. Some of these moments come when you least expect it. Sometimes we talk about mundane things. Sometimes we talk about dying. Sometimes we just hold each other and cry for the next 50 years that she won't have. But then, the tears stop and we talk about what we do have. We have today. We have an amazing family unit. We have life in America with everything we could ever need. We have enough. Some days I watch her interact with her brothers and love the way they are together. She will watch shows with Luke or talk legos. She is trying to speak love to him in his language. She and Caleb talk like close friends. They also do a Bible study together which is great for both of them. Of course, she loves spending time with Daddy as well. He is reading a book aloud to her right now. He does a hundred things to help her and make her life sweeter. I am writing this from my perspective, but that doesn't mean that we don't all do many things for her. I am just giving you a glimpse through my perspective. We do it all as a team! I also see the hurt in her eyes and the tears well up when friends fail to reach out to her. She knows that they have moved on without her and it breaks her heart. She has decided to let them go. She doesn't want them to be involved in her life out of pity or obligation. She is still Kayli. So, she presses on. She isn't able to go anywhere except for the hospital. It is extremely difficult on her, but necessary. She is well loved by the staff and as they do all sorts of hard things on her, she chats with them. She doesn't talk about her unless answering questions. She wants to know about them, their families and challenges they are facing. She loves them for who they are.The journey is hard, but she is making the most of it. When they talk about the worsening of her condition, she always mentions that she is thankful for the two additional years that she has been granted that most kids never see. She is very accepting of where she is. She knows that her body is failing. She is worried about us when she goes. She told her doctors that we are really going to need them. They have assured her that they will be there for us and make sure we are doing okay. The truth is she loves us so much that she doesn't want to cause us pain. I tell her that when she dies, there will be a chasm so deep that will never fully heal. I assure her that we will put one foot in front of the other and face each day. I also remind her that with Christ in our lives that good bye is never just that...it just a "see you later". For me, I don't want to walk through this part of the journey. I want to keep my only daughter close to me and care for her and do a thousand little things that make up a lifetime. But, I know that this cannot be. I know that her life's work isn't defined by my parameters. Tears are streaming down my face as I am vulnerable and share my heart on this post. But, my hope is great. God promises to wipe every tear. He knows the pain of losing your child. He knows the sorrow so great in your heart that words can't adequately express it. He knows. We didn't sign up for this or feel happiness because we are in the biggest challenge she will ever face. Our joy comes in knowing that this life isn't all there is. When God takes her home, I know that she will have affected many. I know that her suffering was for something bigger and more important than herself. I know that He used her to show proof of His unfailing love. I know that she will truly have finished well.
There are so many wonderful things in this life, and while sometimes it's so easy to overshadow the good with all the bad, ugly and sad. Today though I want to focus on the positive. I am blessed with a family who loves on me constantly and who challenge me to be better. The puffy white clouds in the blue, blue sky are such a beautiful thing to see out my window. The fact that I live in a free country and also one of the most advanced countries in the world is such a great thing. People come from all over the world to get cancer (and other medical) treatment and I am blessed to live mere hours from the top medical facilities in the world is amazing. The fact that I can own a Bible - actually a number of them - and worship God freely. That I have a cozy bed to sleep in and a warm little dog that cuddles up beside me while I rest. The fact that I'm here well over two years since the doctors thought I would be is something I'm so grateful for. I am amazed sometimes at the way people show their love and concern for me. That God sent His only Son to this earth to die for me and forgive my sins. Wow. There are so many more things that are wonderful in this world and even more that I am grateful for. The old Louis Armstrong song "What a Wonderful World" made me think of all the great things we take for granted on a daily basis. What are you thankful for? What little things in life do you constantly take for granted. Focus on the positive for a few minutes, friends. I know you will be glad that you did.
Hello dear friends... I try to complain very little and keep the truly hard stuff to myself and my family. While many people post rants and groan about the monotony of every day life on social media, I choose not to (for the most part). I choose to focus on the positive and make that the display that people see about me at a glance. There's enough negative charges out there, we need some positive ones to try to balance the equation, am I right? So those of you who are my friends on social media and also the people I see in person would (hopefully) say that I try to have a positive attitude and rarely complain about the hard things in my life, I can put on a strong happy, face easily (almost too easily sometimes) and because of this many of you are under the false impression that things aren't so tough and so when I ask for prayer pain or other things, people wrongly think that this is something new, out of the ordinary. But just because I don't complain, doesn't mean that I don't hurt. The amount of physical discomfort I am in every day is astronomical. The pain in my bones is excruciating, rightly so due to the significant amount of cancer in my bones, it feels like there is someone inside my bones pushing to get out at any cost. I am on pain medication and that helps some, but I still have significant pain everyday. The cancer is all throughout my bones and it makes things like walking and sitting very painful. I stay in my bed most of the time simply because that is the most comfortable place for me to be. I am nauseous a good part of the time also like hurry-I-need-a-bucket sick. It makes it hard to eat because I know what will follow, but I do anyways and I also have medication for this but again it doesn't take it all away. Due to the neurological nature of my cancer GanglioNEUROblastoma, I also experience jerking and weird sensory hallucinations (ie. bugs crawling on my skin, feeling like there's something wet on me, etc.) and again while I take medicine for these things it doesn't take it all away. I also have lost a lot of my freedom to do things for myself that you take for granted. Do you need someone to help you bathe? To get dressed? To help you walk? To help you do your hair? To help you sit up? While I do need help with all of these things and more I have the most wonderful, the most committed, the most loving caretaker one could ask for, she's my closest friend and I am privileged to call her my mom. She takes care of me 24/7 and she NEVER complains or makes me feel like a burden and she does it with such joy. I am so thankful for her because I know without her I would have to be in a care facility. She is my main caretaker. but my dad and brothers certainly do many things to help me as well. I am blessed. Having this disease has affected me not only physically but also emotionally. Soon after I relapsed, there were many people who offered to help and who visited and who contacted me and my family on a regular basis. But after a few months, those people have slowly dropped out of my life, one by one and returned to their lives and have forgotten about me and my family's struggle which is just as hard now, if not harder, than when we first began this journey. Do I expect people to completely drop their lives and sit by my side and hold my hand 24/7? No I don't. But I would appreciate a text or a short visit or help for my family to take care of me. There have been a select few of you who have kept reaching out and helping me and my family. The majority though, have walked away from me. They don't say a reason but they leave and no longer contact me. People have failed to treat me the same and I understand that it might be hard to be around me and see me sick, I don't know if it forces them to contemplate their own mortality or if they think that cancer is contagious (FYI it's not. I promise.) or if it's just not fun to be around me anymore or what. None of these people have given me a reason, they just left. I have lost at least 75% of my friends. What I would like to say to those people is this: Imagine you were me for a minute. Imagine being in bed all day because you're too tired to do anything else, imagine going from getting numerous texts from friends a day to usually not even getting a single text. Imagine only getting to see a friend every couple of months when those same people would hang out with you frequently. Imagine that the only place you go is the hospital once a week and the nurses are closer to you than your friends you used to take for granted. And the few friends that talk to you on occasion never want to share their life or ask you about yours. I want to hear about your life because frankly, mine is kind of boring, unless you want to hear about the new flooring at the hospital. I am the same Kayli on the inside as I always was. So what changed? And finally to those select few of you that are faithful in coming to visit or contact me, you have no idea how much it means to me. And to my mom, dad, Caleb and Luke; thank you for going through this journey with me because I know it's just as hard on you guys as it is on me. So there's my complaining. I hope maybe it encourages you to reach out to someone who's a shut-in or who isn't able to do much. Even if it's hard, Jesus is always there to give you the strength you need.
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AuthorCancer Fighter. Jesus Lover. Family&Friends. Blessed. Archives
December 2022
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