Charlotte is home!
We are so happy to be back together as a family and we praise God for the positive outcome of this whole situation; God intervened, and we are so grateful to have Charlotte still with us. There will be a learning curve for us as we become more comfortable with handling Charlotte’s new equipment and daily routine, but we appreciate that God entrusted with us this special task.
Even though Charlotte continues to die from Batten Disease (CLN1), we are thankful for the time God is allowing us to have with her. We are aware that our future will probably hold many more similar hospital stays with Charlotte and Sophie, but we also believe in a very big God who can override death itself. We do not fear the days to come because we know God has a plan for each one; we trust that He will equip us with the strength, peace, and hope required to bear these trials. Batten Disease is incurable, but God surpasses human limitations in logic, reasoning, and science knowing infinitely beyond what the doctors comprehend. He can use the simple to confound the wise. We believe God will heal our little girls either in heaven or on earth. This belief has planted tremendous peace in our hearts, and it provides the hope and joy we need for the days ahead. Charlotte’s and Sophie’s futures belong to God. He himself has numbered the days of their little lives; He holds them in His hands, and He calls them by name. They never deserved life, yet He was gracious enough to breathe life into them however long or short it may be.
None of us deserve the mercy or love of God—we don’t even deserve each breath we take—and yet we live ignorantly entitled. We believe that we are good people and deserve good things. We ask how bad things could happen to good people. Instead, we should be reminding ourselves that God says there is none good, no not one. We deserve nothing but death; life is an undeserved privilege. God owes us nothing. We owe Him everything. And yet He chose to give us earthly life and offered us heavenly life. Let’s be careful how we live each day; God might make it our last. We must remind ourselves that our life is not our own. We came from dust and we all will return to dust. We deserve nothing. God deserves everything. He is always, only good.