Hello everyone. I want to post an article that I had originally written for Kayli's Finish Well blog per her request. I wrote thosewords almost exactly a year ago now. I had no idea at the time how God was using my own words to prepare my heart for the shattering journey we are walking now. My words ring so true to me. I smile because I know that it was exactly what Kayli wanted me to write to all of you to give you a word picture of the beauty of a fierce love. Tears fall as I miss my daughter with a depth that cannot be expressed here...today the edges are raw and sharp. We are doing all that we said we would do...putting one foot in front of the other and moving forward. The chasm is truly deep and wide. Please take a minute and read the words from last fall that could be anyone's voice right now that is going through watching someone they love suffer and die. Don't be afraid to dive into their messy life right now. They need it. We need it. Please continue to pray for us as the sorrow ebbs and flows and the adjustment long. We have absolute hope of being reunited with Kayli some day...Praise Jesus for making a way! However, we also know how much the sorrow hurts for missing Kayli and the thousand ways that made our everyday with her complete. We are still figuring out how our new normal without her here is supposed to look. Nine months have passed since we said our "See you laters" and yet it seems like a second and a lifetime in the same instance. Thank you to those who call, text, stop in or reach into our lives right now. Thank you to those who speak her name and share the ways that she has blessed your life. Thank you to those who continue to pray for the four of us.
Watching Kayli walk through the storm9/12/2015
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.