Sunday Mornings

We made it home yet again on Thursday evening. I want this discharge to last so much longer than all the last ones. I want it to last forever. I don’t want to go back to that hospital. Is it okay to say I love and hate that place at the same time? Well, I said it. I love the people who have helped La Petite Belle and us through all of this, but I hate all that’s happened to her there. I hate seeing so many children suffering, day in and day out. I hate seeing so many parents lose their children. It’s become just a depressing place for me, for all of us. “Home” in our little one-bedroom apartment is so much better. There’s simply a peace here and some tiny form of normalcy.

As I sit at my computer on this Sunday morning, I can’t help but reflect on how my Sunday mornings used to be. They were busy. As a family in ministry, Sunday mornings were sometimes stressful, especially when one or all of us were serving in the church in some capacity. Sundays were long. We were always exhausted after church and took family naps when we could. Sometimes these naps were three hours long. I remember waking up so refreshed and spent the evenings with my family … being lazy, being silly, but also preparing for Monday morning and the start of a new week.

This Sunday and the Sundays for the past almost two years have looked incredibly different. The only similarity is how exhausting they can be … more emotionally than physically.

This Sunday morning {Beau has been playing for worship at churches around town as much as he can. This has been a tremendous blessing to our family.}, I woke up to La Petite Belle’s cries to help her get to the bathroom. 

I helped her back to bed. She complained, as she does every day, of her stomach hurting. She vomited three times. I cleaned her up. I got all her meds ready for her to try to take. I did an IV push of medicine. I got the walker so she could get to the recliner and held her bag of TPN as she walked this short distance. She moaned for a few more hours about her stomach. I gave her extra anti-nausea and pain meds, hoping this would help. I begged her to try and eat or drink just a little something to help. She refused. Her mouth/throat/lips still hurt, making it hard to swallow. Because of this, her desire to eat has diminished even more. Finally, the meds have kicked in and she’s napping. I sit here, praying that when she wakes she will feel better … that we’ll have a few good hours, maybe more. A good day would be fantastic! That’s Sunday morning now.

We try to take advantage of any moments where La Petite Belle does feel well. Yesterday morning was similar to what I described above, but by afternoon, she was asking to go to Target. She wants to get out. She wants to go anywhere else besides the hospital. Even if she’s feeling sick, she still wants to try to enjoy each day. La Petite Belle loves spending time with her family so much that she will try so hard to suppress her feelings of nausea and pain. I’ve seen her do it over and over again. Even when she feels miserable, she pushes through as long as she can to be with us. She wants to feel “normal” again, to do “normal” things.

We stop whatever we’re doing when she has these urges and try to make the most of each day, attempting to bring some sense of happiness and joy into these moments.

We took our girl to Target yesterday. She’s ALWAYS loved to go to Target, even as a young child. She would have Target dates with her daddy and Target dates with me. I think she just has some great Target memories and it’s her happy place, just like most women everywhere.

The highlight of our trip was her riding in the electric wheelchair. She’d been wanting to try it.