When your baby is critical and in the NICU, there’s not a lot you, the parent, can practically do. Aya’s nurses were giving her all of her nutrition and medicines through a series of IVs, feeding tubes, and drips. She was too delicate to dress and diapering was terrifying. But they were ALWAYS quick to emphasize the importance of our presence, of our voice, of us having conversations around her and playing music, of us touching whatever small piece of her was accessible.
The quietness of our presence, the sound of our voices and the touch of our skin was just as essential for her well-being as her medicine, milk, and ECMO machine. Our first day on ECMO, our nurse was so encouraging to help us find ways to still care for sweet Aya.
The day she was steady on ECMO, I asked what we could do to bring “a little happy” to her. She told us “sheets”, and I asked if there was any way to put a bow on her. Two crafty nurses made her a bow headband with the hospital hats and a velcro armband to make it close over the top of her ECMO headband and EEG gauze. She wore that until I could bring in clip bows.
Her little face, even unconscious, literally lit up. It’s like her sweet spirit sensed that she was looking more like herself. She immediately had a little of her fire come back. And the nurse said, “See! You’re already making a difference for her! You being here matters to her, not just you!” Every time I changed her bow, that same spirit just got a little bolder.
For whatever reason, The God who is able to heal Aya did not lengthen her life. She is currently enjoying His presence in a more tangible way than we are.
But His presence is with us. The quietness of His presence, the sound of His voice and the touch of His Hand is more essential for our well-being than food or clothes or water. Us sitting with Aya did not remove her pain, but it made it bearable. God sits with us in our pain. And we can bear it because He’s here, beside us even when He doesn’t speak. Working, like Jason in the picture, on other matters. He holds the whole wide world in His hands. He is working for it’s good while He sits beside us. Occasionally speaking, always caring, always loving, always near, sometimes tangible.
It was always easier for us to talk around Aya when we had her nurse and ECMO tech with us. There’s just more to talk about when there’s a crowd of people. The way people have loved us and come around us has made that true of how we experience God as well. He is always near us, but it sometimes seems like there is more to say when others are around. We have been so grateful for the many voices who have come to comfort and cry with us. Your voices have helped us to hear God more clearly. We are thankful that God is in the room with us…and we are thankful that you are as well.
