We are finally getting a little bit of a grasp on the new routine here. We truly have what looks like a fully stocked hospital room and it is pretty crazy.
Laila has been having some good days. You may have even been one who has been lucky enough to see her out at church and smiling and having fun. I love that. I love that you get to see her that way. I have had people tell me how she looks like she is doing fantastic. Looks. Looks can be deceiving, my friends. Many, many medications are bringing you those smiles and giggles. I’m very thankful for the happiness but also know that her body is so very tired.
Our reality is now that we don’t leave the house much. There are too many medications to be given and too much risk for infection to be gone longer than small amounts of time. Her IV pump is not portable and since all her meds go through there we stay home. It is also very dangerous for us to be accessing her lines in environments that are not set up for us to be careful and sterile.
So no more school. That breaks my heart. Laila loves school and being social. She loves thinking she has a job as secretary or librarian.
But… This girl. This girl is still full of smiles when she is feeling good. A friend heard that she could no longer “steal Crystal’s job” at Wheatfield Elementary, so he came over and asked her to be his new secretary. He provided her with a binder and notebooks and business cards. She “works” a lot! Sweetest thing ever! It was her favorite birthday present :)
Can’t we all just be like her? Man, I have so much to learn. She has a body that is worn out and tired. She has exhausted all medical possibilities to ever make her body work without constant pain. But there she is, smiling. When she has the energy and when the pain meds are working, she lives life to the fullest. Smiling and spreading joy to all she is around. She amazes me every day. I so hope and pray that God gives me one ounce of her strength, one ounce of her joy. And I pray that you see it too. Don’t let this go to waste. Let God use this beautiful little ray of sunshine to speak strength over you today. You are loved, important and full of life. Go live it today.
In John 10:10 Jesus says “The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.”