Our whole world has changed since Charlotte’s and Sophie’s diagnoses. There are so many doctor’s appointments, evaluations, therapy sessions, phone calls, meetings with teams and specialists, and so much paperwork. We are busy driving back and forth between home and the hospital every month. Some of these appointments have left us overwhelmed while others have been incredibly helpful. We are meeting many people through this whole process. We have whole teams of people dedicated just to one specific area of Charlotte’s life; and there are many, many areas. God has opened a door of opportunity for us to be a light in a dark world. The sheer number of people we are connecting with is incredible. Not all meetings are encouraging as there is much discussion over Charlotte’s continuous regression.
At our last meeting, we walked in, preparing our hearts with the strength of the Lord. Few are aware that Charlotte and Sophie are estimated to die around age five due to Battens CLN1. Even doctors and nurses have shed tears and shared condolences when we inform them. We are told most parents with such news are devastated, but God has given us peace. We told the team that it’s okay; it’s okay that Charlotte and Sophie only have a few years left. We told them that we are believers, we know exactly where our daughters are going after this life, and we are going there too. We will see them again, and we get to live with them for eternity! Even though the doctors can estimate how long our daughters will live–in the end–it is ultimately God who decides how long we have on this Earth.
One of the ladies there was a believer, and she was so encouraging, agreeing with the perspective we shared. She told us she felt the peace of God when we walked in, and immediately our spirit bore witness with her spirit. The sweet presence of the Holy Spirit in that hospital room was overwhelming, and no one could deny that God was there. We talked about the goodness of the Lord openly and freely while other members of the team listened. We pray that God was using our conversation to convict and work on their hearts. We left that meeting with great spiritual encouragement, and our hearts were full of joy from the Lord.
We are so blessed that God has brought us so much comfort during this trial. We are excited to share His goodness with others, hoping they will be encouraged as well. He gives us many ways to tell others how good He is! We want people to know what a blessed peace He has bestowed upon us; we have no way to describe it, except that it passes all understanding. What joy we have knowing that we get to spend eternity with Him–we don’t deserve it.
God is good, and His mercies fail not; they are new every morning. Great is His faithfulness. God is only, always good.