"Today is my day for Good-byes." These were the words I heard my daughter say to Tina, her nurse, as she awoke for her final day. With a smile on underneath her oxygen mask, Kayli was ready for her final conversations with those she loved so deeply. How did she know? How could she enter her final day so full of peace and sunshine? How do you do life knowing that today is the last one she will be here for? My mind was numb and racing and in slow motion all in that same moment. It truly hit me then that we were at the end of a very long journey...a war if you will. For 13 years, she (and we) all knew that this moment was a real possibility. Oh, you always hope and pray that you can outrun it, out treat it, surgically stay ahead of it and for some people, that is exactly the blessing that comes into their life. They find victory through the physical healing and it is an absolutely wonderful gift! I am always so thrilled when someone else receives the gift of life when death has been riding shotgun for so long! But, what about our moment now? Kayli was leaving for Heaven and the Ganglioneuroblastoma had ravaged her body...where was God in the midst of this? Had He not answered our prayers? These were questions I (and we) have been asked...and rightfully so. I want to answer this question by taking you back...
Michael and I made the decision early in our marriage, that if the Lord blessed us with babies, that I would stay at home and care for them, while he was the sole provider for our financial needs. On my end, this meant hours and hours of reading books, poopy diapers, snacks, cleaning messes, singing songs, and generally living in an exhausted state for days on end. Motherhood. Together, we spent our time teaching them about God and growing their understanding of who they were in this great big world. As the kids got older, we made the decision to homeschool, so we turned in diapers for school books and our next chapter unfolded; training our kids. The days were still long. And hard. And messy and beautiful and rewarding. We spent so many days together creating, learning, investing and building relationships with each other. We talked about who God created them to be and HIs purpose for them. Even when Kayli's cancer came on our radar, we were able to stay mostly on target with their school as we took the needed days off to help her through those gigantic hurdles. But, through it all...we were together. It was oh so hard, HARD, but we pressed through it.
As the years moved forward and the cancer kept fighting back, Kayli's character continued to be refined by her Creator. There were many times she felt frustrated and angry and sorry for herself. I felt that way too. We continued to walk through each new challenge together. We continued to trust God to grow Kayli and our family through the valleys. Around this time, we were given the series of messages entitled, "When Life is Hard". We listened intently and truly learned how to walk through the hard. Instead of being angry at God for not removing the obstacle, you have to trust Him to give you strength to bear up under it. So that's what we did...started building up Kayli's (and our family's) spiritual muscles.
In the remaining years that followed, we faithfully pursued every treatment available as the cancer continued to come back. In the midst of the continuing challenges, we fed our family spiritual food to strengthen them for the battle that we were in. It wasn't easy and discouragement was lurking daily. We knew that only God knew the number of Kayli's days and we wanted to spend those days living big for God and not in fear of what we were losing...easy to say and even harder to do. We celebrated the little things. We LOVED one another fiercely and at times, drove each other crazy! We chose to extend ourselves to other people and share the hope and joy that we had found in the midst of the biggest fight of our lives. We knew that truly living life meant living for something more than the days on the calendar. The more Kayli's physical health declined, the more that God grew her ministry for Him. She pursued people and passed out more copies of "Crazy Love" than we can count. She made time to be real with people. She made time for conversations. For cry sessions. For nail parties. For Netflix binges...you get the idea. She chose to invest in people even when her own earthly body was eroding away. She chose to give it all to Christ and leave her mark by who she was with the people she was with. She chose to just be present.
During many of our car rides to the hospital, this song would come on the radio and Kayli would turn it up, look at me and say, "That's my song Mom" It has become so precious to me because it truly reflects the heart of my daughter and her story. Please take a listen and ask yourself, "What do I reflect to the world?" "What would the song of my life be?" I challenge you with this because your time will come. Mine will too. People will remember something about your character...what do you want that to be? Here is the link to Kayli's song, "Press On" by Mandisa
www.youtube.com/watch?v=SXxBqbTM-2U
So, back to the beginning...the questions. Where was God in the midst of our struggle? Right in the middle...holding us, guiding us, providing for us and tenderly loving us in the pain. He never promised life without pain or struggle. We just somehow think that we deserve it. Faith comes in a moment, but is developed through the fires of a lifetime. The other question...didn't God hear our prayers? He absolutely did. He answered them as well...just not necessarily the way that we thought He should. He can see the end from the beginning and we can only see the now. He healed Kayli and she is free now...just separated from us for a season. FOUR YEARS of tears and longing - A super, duper HARD season for us, but the best one ever for her.
Michael and I made the decision early in our marriage, that if the Lord blessed us with babies, that I would stay at home and care for them, while he was the sole provider for our financial needs. On my end, this meant hours and hours of reading books, poopy diapers, snacks, cleaning messes, singing songs, and generally living in an exhausted state for days on end. Motherhood. Together, we spent our time teaching them about God and growing their understanding of who they were in this great big world. As the kids got older, we made the decision to homeschool, so we turned in diapers for school books and our next chapter unfolded; training our kids. The days were still long. And hard. And messy and beautiful and rewarding. We spent so many days together creating, learning, investing and building relationships with each other. We talked about who God created them to be and HIs purpose for them. Even when Kayli's cancer came on our radar, we were able to stay mostly on target with their school as we took the needed days off to help her through those gigantic hurdles. But, through it all...we were together. It was oh so hard, HARD, but we pressed through it.
As the years moved forward and the cancer kept fighting back, Kayli's character continued to be refined by her Creator. There were many times she felt frustrated and angry and sorry for herself. I felt that way too. We continued to walk through each new challenge together. We continued to trust God to grow Kayli and our family through the valleys. Around this time, we were given the series of messages entitled, "When Life is Hard". We listened intently and truly learned how to walk through the hard. Instead of being angry at God for not removing the obstacle, you have to trust Him to give you strength to bear up under it. So that's what we did...started building up Kayli's (and our family's) spiritual muscles.
In the remaining years that followed, we faithfully pursued every treatment available as the cancer continued to come back. In the midst of the continuing challenges, we fed our family spiritual food to strengthen them for the battle that we were in. It wasn't easy and discouragement was lurking daily. We knew that only God knew the number of Kayli's days and we wanted to spend those days living big for God and not in fear of what we were losing...easy to say and even harder to do. We celebrated the little things. We LOVED one another fiercely and at times, drove each other crazy! We chose to extend ourselves to other people and share the hope and joy that we had found in the midst of the biggest fight of our lives. We knew that truly living life meant living for something more than the days on the calendar. The more Kayli's physical health declined, the more that God grew her ministry for Him. She pursued people and passed out more copies of "Crazy Love" than we can count. She made time to be real with people. She made time for conversations. For cry sessions. For nail parties. For Netflix binges...you get the idea. She chose to invest in people even when her own earthly body was eroding away. She chose to give it all to Christ and leave her mark by who she was with the people she was with. She chose to just be present.
During many of our car rides to the hospital, this song would come on the radio and Kayli would turn it up, look at me and say, "That's my song Mom" It has become so precious to me because it truly reflects the heart of my daughter and her story. Please take a listen and ask yourself, "What do I reflect to the world?" "What would the song of my life be?" I challenge you with this because your time will come. Mine will too. People will remember something about your character...what do you want that to be? Here is the link to Kayli's song, "Press On" by Mandisa
www.youtube.com/watch?v=SXxBqbTM-2U
So, back to the beginning...the questions. Where was God in the midst of our struggle? Right in the middle...holding us, guiding us, providing for us and tenderly loving us in the pain. He never promised life without pain or struggle. We just somehow think that we deserve it. Faith comes in a moment, but is developed through the fires of a lifetime. The other question...didn't God hear our prayers? He absolutely did. He answered them as well...just not necessarily the way that we thought He should. He can see the end from the beginning and we can only see the now. He healed Kayli and she is free now...just separated from us for a season. FOUR YEARS of tears and longing - A super, duper HARD season for us, but the best one ever for her.