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.
31 Comments
ERIca
9/12/2015 06:08:49 pm
Dear Kayli, we love you and all that you stand for in your courage, faith, and determination to survive. You never ever give up and many will follow your lead. Much love, many prayers and eternal gratitude. It feels like yesterday I was standing next to you in your white dress at the Ed Bear Gala with my little Gia. Love you BEAUTIFUL Lady!!!
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9/12/2015 06:15:17 pm
Tears are streaming down my face too. I love you all dearly and pray for your comfort. I don't want you to go through this. But you are going through it with grace and faith. Love you!
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9/12/2015 06:18:11 pm
Kayli, Judy, Michael, Caleb and Luke,
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Jenni Lee Lutz
9/12/2015 06:23:41 pm
Sending all of our love! I wish I was still there to give you a hug! We love you guys!
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Kate Foster (Tumia)
9/12/2015 06:24:36 pm
Mom... I don't even have words.... But I love you all so much! Kayli has changed my life forever and she is a hero to me in every sense of the word. I LOVE YOU GUYS
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Dad
9/12/2015 06:36:08 pm
Life can certainly be hard. I am so glad our Lord has put us together as a family! I could not imagine anyone else I would rather be going through all of this with. This includes all of our family and friends and even people we have never met who reach out to us in their own way to support and encourage us. Thanks to all of you :)
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Shawn
9/12/2015 06:38:24 pm
You paint a beautiful yet heartbreaking picture of God's unfailing love with skin on. I wish all of you were in a better place. May God continue to bless all of you through His overflowing love and Grace. Thanks for sharing Julie!
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Amy Taylor
9/12/2015 06:48:49 pm
Kayli is such a strong woman. You and Kayli have touched my heart. My prayers each day for Kayli and your family. I lift you and your family up in prayer each day. Reading this entry from you shows that is what a mother does for her child. I just love you and your family.
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Carrie Raber
9/12/2015 06:57:17 pm
Beautifully written. Although I cannot even begin to imagine what it is like to be in your shoes, I do know what it is like to love a daughter. Kayli, know that your mom would rather be with you than anywhere else. It does not seem like a job or an obligation to love you- it is the most natural thing in the world.
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Shanley Fair
9/12/2015 07:04:50 pm
Beautiful post. I respect your faith and example like you'll never know. Thank you for being so real and helping me to know God more through your lives. Hopefully our prayers help to sustain you through this time.
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Mary lowe
9/12/2015 07:16:40 pm
My tears are non stop. I believe that everything happens for a reason. GOD has a plan. It's hard to understand at times. Your fight and determination proves to me there always Hope never give up! We wish we didn't live so far away! We miss you all dearly and are thought of daily. Judy I have to say you are turley amazing yourself. The courage as a mother to go through this. Love you
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Barb
9/12/2015 07:17:34 pm
Judy, You help me to see just how difficult your life is. Thank you for showing me the truth. My heart is breaking for you and Kayli and Michael and the boys too. Lord, please bless Kayli as she gets close to going to heaven. You are a treasure Kayli and my tears flow for you today. Judy I love you for all you show me of God's love! My heart is with you all and I will continue to pray for peace! Much love to such a blessed family!
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Anne Bradley
9/12/2015 07:46:53 pm
Kayli, I don't know where to start. I am so sorry for your pain and that bad things happen to good people. I have heard nothing but good things about you from Sam Lowe and Mary Lowe, and probably others but they come to mind first. Keep your faith, it will help you. Your brothers are so lucky to have someone as strong as you in their lives. As for your mom, I have no words that will make her feel better about what your going through. I see the posts on Facebook and cry, I have a 3 year old daughter Kyleigh, and noone wants what you have or can imagine what your mom is going through. I known I'm sorry only goes so far, but I am sorry you have to endour this. Hope you have some days with less pain and more fun coming to you....even if that means just sitting at home with loved ones and not being in pain, being able to forget for 5 seconds what you are going through. Love always, Facebook follower, Annie Bradley
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Monica
9/12/2015 09:42:36 pm
I wish I had words to make all this better, but I don't. All I can say is that we love you all, and somehow it will be ok. I can say that with authority because we have walked this path. Life is precious and sometimes terribly short, but it is beautiful nonetheless, and I know we will all see each other again. Love to you all.
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Billie Najimian
9/12/2015 10:06:40 pm
Kayli you are such a brave beautiful woman. If I could I would take some of your pain from you. As a Hospice nurse I know intimately the battle you are facing. It is not an easy path to walk but you have God right beside you all the way. Your family loves you dearly and uphold you through it all. Emotions are running high and all around you are effected, but Kayli you have been submitted his an example. Your church family loves and supports you. I love you aND pray for you.
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Vickie
9/12/2015 10:10:58 pm
Kayli is the strongest and mosf beautiful soul inside and out i have ever met! I am so envious of your entire families love, strength, closeness and faith! You are all an inspiration of what everyone should strive to be! Love you all😀
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Jolene
9/12/2015 10:11:56 pm
Lots of tears streaming down my face! I am so grateful for the Hope we have in Jesus. Kayli, you are a awesome testimony of what Jesus can do. In the worst of all situations, you praise Him there. You are a beautiful young lady!!!! Love you guys and lots of continued prayers.
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Uncle D
9/12/2015 10:25:41 pm
Kayli:
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Kim Shoup
9/12/2015 10:29:02 pm
The path that all of you walk is not an easy one, but yet it's been done so gracefully. I am so thankful for you Kayli. I don't think you will ever know the lives you have touched. You have inspired me to become a better Christian women and learn how to not take the small things for granted. I pray for all of you daily! I realize my words can't take away the pain, hopefully, they can send some sort of comfort in such a challenging time. We love you all dearly.
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Jenny
9/12/2015 11:04:50 pm
Amazing- grace, love, hope, family, tears, peace, joy, patience, commitment. Prayers are with you all.
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Anita Renfroe
9/12/2015 11:16:55 pm
Kayli -
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Janet Inman
9/12/2015 11:38:39 pm
What a beautifully written post. You are a beautiful servant of Christ and exude His presence daily. I can't imagine how difficult it must be to watch your daughter suffer through this, but, you do it with grace and love. You all remain in my daily prayers and ask Him to please wrap Kayli in His arms keeping her comfortable and peaceful.
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Christine Adams
9/12/2015 11:47:44 pm
Judy, Kayli and family. How beautifully you have expressed the bittersweet agony of ministering to a beloved child, and knowing that their remaining time in your presence is short - unless our God chooses to work a mighty miracle. Your love for each other as a family shines through in the writing. It's not a word I use frequently, but as I pray for Kayli and all of you, these past weeks I find myself asking over and over that God will help Kayli to transcend her pain, and all of you to transcend this most difficult of human experiences: TRANSCEND. 1. a : to rise above or go beyond the limits of. b : to triumph over the negative or restrictive aspects of : overcome. I don't for a second mean that she won't feel the pain, or you won't feel the pain, but that somehow through his Holy Spirit, God will allow you to transcend the pain and the sickness and the hurt - and overcome for His glory.
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Deb Berk
9/13/2015 12:17:10 am
Kayli~
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Jacquie Adams
9/13/2015 02:12:07 am
This old world is so broken. It just makes me leap for joy when I read in Revelation how He will make everything new and the old order of things will pass away ... no more tears, no more pain, no more parting from those we love. It also makes my heart swell with hope to watch your family utterly radiate love, joy, peace, and contentment. You just shimmer with the brilliance of His Holy Spirit and are a testament to the Spirit's fruit. God never wastes our pain. He is using you to show that through it all, it is well.
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Kylee
9/13/2015 10:59:32 am
i know I've made this comment before, but it is from my heart... I sincerely am grateful that you both, Kayli and Judy, have shared this journey so openly, so honestly and so filled with Gods spirit. I've teared up many times and prayed so deeply too, and have gained insight and wisdom from you both that I admire so much. I'm a better mom from your inspiration, being so grateful for each moment with my kids, knowing each day is a gift. The Giants I may face are not as large as what you all have faced, but it's my goal to face Giants with the same peace and grace and preserverance that you have. Your life is a testimony kayli!
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Sandy Daron
9/13/2015 06:24:28 pm
Judy,
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Debbie Mata
9/13/2015 08:18:20 pm
Kayli, You are a true and faithful servant of our Lord and Savior Jesus Christ. You are a tremendous inspiration to those of us who travel a similar journey. We have experienced the PICC lines, the chemotherapy, the constant pills, shots, IV's & surgeries. We know the feeling of countless days & hours in hospitals and emergency rooms. We understand the deep, deep faith one must have in Jesus Christ just to make it through one day at a time. But we also know Christ is sovereign and He is our King and Lord over all things. Don't stop being who you are because you are truly His good and faithful servant. Our love and prayers always to you and your family, Mike & Debbie.
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Ching Ching
9/15/2015 02:24:10 pm
Tears are streaming down my face as I read this. One can only know how it feels if we are in your shoes. I pray for Kayli on a regular basis and have always been so touched and inspired by her posts, her courage and her love for others. And to see the conditional love your family has for her is so touching! Truly a reflection of our Heavenly Father's love for us!
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Tina Gay
9/15/2015 02:41:27 pm
Hi Kayli,
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Jenee Hilty
9/23/2015 02:40:46 pm
Hostetler Family: I was talking with Laura Steiner this morning, and I asked her how Kayli was doing, for we have thought and prayed for her off and on for the last while. She has updated me with what is going on right now, and I just want you to know that we, as a family are lifting Kayli and the entire family up in prayer during this difficult time. Our hearts and thoughts are with you all, and reading some of these posts make me realize how strong, how brave Kayli is being through all this. What a precious girl. I had tears in my eyes, for I wish you didn't have to walk through this kind of journey, that everything could be made right again inside Kayli's body. Just know that you will remain in our daily prayers. God be with you all.
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