I am not going to lie. I am more intimidated by the diagnosis than I anticipated. I have been reading about the syndrome. The genetic counselor sent me a number of resources. Some are medical, and they describe what the diagnosis means from a medical perspective. Some are personal. There are a number of different websites put up either by people who have Apert's or by their families. It is simultaneously encouraging and intimidating to read these stories.
There seem to be a wide range of potential symptoms for people with Apert's.
"Do you not know that your body is a temple of the holy Spirit within you, whom you have from God, and that you are not your own?" 1 Corinthians 6:19
We are each temples for the Lord. There are a lot of wonderful teachings about how to interpret that verse. The context of the verse is sin and immorality. We are told here that we must avoid sin, not just because we fear Hell, but because we are temples. We care for our bodies with the same diligence that would attend our care for His home.
But let me take you back a step, to the old Testament verse which got me thinking in the first place:
"Then David said to his son Solomon: "Be firm and steadfast; go to work without fear or discouragement, for the LORD God, my God, is with you. He will not fail you or abandon you before you have completed all the work for the service of the house of the LORD."" 1 Chronicles 28:20
I was looking for an answer to my fears, and that is what I was given. I have a friend who keeps reminding me that our children are not our own. We are just stewards; they belong to God. We do the best we can to teach, form, raise and love them. But ultimately, the work is for the glory of God. As we raise up our little temples, teaching them to hold God in their hearts, we are doing the work Solomon set out to do. And God is with us as we do it. "Go to work without fear or discouragement." It is what I needed to hear.