I get asked a lot how Sophie Kate is doing. My response? She's doing good, she looks good, she's smiling and seems to be feeling good. That response is quickly followed by "she hasn't been anywhere though, she's mostly just been home." We have taken her to see her brothers play basketball a few times and that has been it.
I know it sounds strange to say I miss her even though I am the one mostly at home with her but I do. I miss her being with us every time we leave the house. I miss our life before this sickness and before this continuous oxygen thing. I miss seeing that face without oxygen plastered across it all the time and at the same time I am thankful for it.
It's hard to get out with her now. I think I have done it one time without Chad's help and that was for a doctor's appointment. I feel the shift. She is so tall and so heavy. I can still carry her to the van but just barely. Then there are all the bags...her backpack, her food, and her oxygen. We have been home with her for so long. Will I even feel like getting back out with her when spring comes?
This is the point where I think about my friends whose children are in heaven. This is the point where they are boiling mad at me for whining about how hard things are here. I think about them, I remember them and I sit beside my girl and hold her hand thankful for time. I will climb out of this hole I feel like I am in with them on my mind.
I have always considered each time period in our lives as a season. When babies were not sleeping through the night I knew it was just for a season. When days were long and exhausting with toddlers, I knew it was just for a season. I know that this is only for a season as well, it just hurts worse than some of the others.
My friends whose babies are in heaven, please know I do not take the fact that I can still hold her lightly. I do not. I touch her, I sit beside her and I look in her eyes with your babies names on my heart and mind. God's love reaches to the depths of my hurt. His comfort touches the pain I can't even speak about.
Thank you all for continuing on this journey with us with your kind words and your prayers.