Sophie Kate starts home bound services through our school system this week. She will be getting all of her therapies (PT, OT, speech and vision) here at home through the end of March. She will be seen once a week, which will be a good schedule for SK to start out with. She is so weak right now so she will definitely need to build up some stamina before she is able to handle a full day of school. She continues to get better, although we are still making adjustments with her oxygen. Just this week we have had to go up on her oxygen to 4 liters after having a good run at 2-2.5 liters last week. She is showing us that there is still healing that needs to take place. I continue to be taken aback by how hard this virus hit our girl. The toll it has taken on her is still evident within her body.
I tell her almost every day how beautiful she is. There is beauty in her smile, in her face and in her presence. It's not just outward beauty, but it's also an inward kind of beauty that is felt more than seen. I spend so much time by her side. My thoughts constantly battle each other for what is true. I feel the attacks in my inner most thoughts and have to focus on what is real and what I know to be true.
Questions and fears that I don't even want to write down in black and white invade my thinking and scare me to death. I've had two really rough days this week where all this stuff hurt so much. As I go about grocery shopping and running errands when I can, I wonder what the story is of the folks I encounter. How are they hurting, what is weighing heavy on them as they go about their day doing things that have to be done. We just never know what others are dealing with.
My girl has given me a compassion and love for those who are hurting. She has taught my boys how to love regardless of outward appearances and abilities. My youngest son has asked us to teach him how to take care of his sister. Since Christmas he has learned how to prepare and administer her breathing treatments. He has learned how to connect her feeding tube to her feeding pump, turn it on and feed her. He gives her night time medicines (under supervision of course). He even suctions her...y'all he's 7!!! He does it all from a servant heart of love. He tucks her into bed at night and after he has hooked her up to all her machines and monitors he climbs up into her hospital bed and kisses her goodnight...pure love. A love that is so big and so strong for her that just telling her is no longer enough for him...he has to do and serve. I am so touched by his kindness and blessed to be able to witness this act of love.
Philippians 2:3 "Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important that yourselves."