Sunday, February 12, 2017

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.


She ran into so many end-caps and nearly took out a few kids.
We laughed. She laughed, which we hadn't heard much of lately.
This girl, who was once filled with joy, has become filled with sadness. As her parents, we try to pull that joy back out of her. It's hard to be joyful when you feel so sick.

About an hour into our trip, she got tired. Her endurance is pretty short. 
As she gets stronger, this will improve. Each day I'm reminded of how far she's come, but also how far she still has to go.

I miss our busy Sunday mornings. I miss church. I miss worshiping as a community. I miss K Belle. I miss family time. I miss laughing. I miss La Petite Belle.

I'm trying really hard not to live in the past. I remind myself that my old life is over, done, dead in the water. This is our new life. I'm working on embracing it, but even typing the word "embrace" doesn't seem right. Maybe "embrace" is not the right word. I think "hanging on" is more like it. I am hanging on to this extremely uncomfortable place where God has us for now. 

During this season, I hang on to Him. He's all I've got. No one else can drag me through this thing. I'd like to say I'm skipping through this season, but it's quite the opposite. He's definitely dragging me. Sometimes, I feel like I can actually get up and walk a bit, but then I get knocked down again. He comes in and picks me up. He carries me, drags me, pushes me. I know that He will get me to the other side. I just don't know how long it will be until I get there. So, I work on "embracing" ... embracing the fact that He's got us ... He's got La Petite Belle ... He will provide ... He will sustain ... He will restore.

We are working on attempting to get our girl to church. She wants to go so badly, but also doesn't want to vomit in service. I get that. Until then, we play worship music constantly. We read God's Word and His promises to her.  We continue to pray and trust God. We ask for His guidance and His grace. We pray for La Petite Belle's complete healing, no more pain, and strength that only He can give. Thank you for continuing to pray and agree with us! 
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com, and www.youcaring.com
All funds go to cover medical bills and expenses.

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