Michelle: When raising a child with a threatening disease, first of all, my encouragement to you is to trust that God has a plan for your child that far exceeds the title of the disease at hand. I firmly believe that God has all of our days numbered and that no disease will have the pleasure of taking one day from anyone’s life. This has removed so much fear, knowing that before the world began, God preordained all of our days. See Psalm 139. No disease can have the pleasure of stealing your life’s call and purpose. I believe God wants us to make the most of the time we have been given and in fact, each of us has a critical disease we are fighting. It’s called death for most, some of us just get an added name to it along the way, like cancer, or cystic fibrosis.
For us, the disease has not redefined who our daughter is or what she is able to become. It actually heightened our awareness of how fleeting this life can be and gave us the desire and passion to live each day to its fullest potential. We see a sad epidemic across the USA, families that are missing valuable time together that they will not get back just to further themselves or to achieve nicer things. Our daughter’s disease blessed us with the ability to see how precious each day truly is and what a gift life is…so many take this for granted and as a result squander precious time with their loved ones. They work tirelessly for material things to give their families a better life, when in reality all they really want is your time. Memories made together far exceeds any gift you could ever give your children. For us, we seize the opportunity to spend time as a family and to teach our kids what is truly important. They have a strong sense that this world is not our home, we are only passing through, to a much better place that God has prepared for us, where death has lost its sting. This is the hope we have because of Jesus.
We started a children’s ministry where we teach life changing biblical truth and then equip the kids to become world changers as we serve in our local communities, and be the hands and feet of Christ to the lost and hurting world around us (looking for ways to be the change). Yes, we could focus on the number of days we may have because of the disease, but we’ve found that it’s much more effective to focus instead on the life that can fill those days. For everyone of us has a great purpose that only we can fulfill. Don’t allow an uncertain future the power to steal a single day.
