Today makes day 9. 9 days being away from home. 9 days living in the hospital. 9 days of just her and I.
I left with a heavy heart. Knowing I was leaving a fever ridden baby behind and another child recovering from the flu was the worst way to leave for an unexpected curve ball thrown our way. We did what we had to do. We didn’t wallow in the crap thrown our way, instead we accepted it and told ourselves “it is what it is”, a motto that we have found to be describe life with Cystic Fibrosis.
It is what it is.
We can’t change our family’s story. We can’t heal our daughter’s fatal disease. We can’t control when and how sickness will impact her little body. Lord knows we would if we could.
I have logged many miles walking up and down the hallways. I found out it is .8 miles, round trip from our room to the cafeteria. One evening when we were given the okay to walk the hallways, we tested our limits and explored every nook and crany in this hospital until our time was up and had to return.
Have I been frustrated being here, yes.
Have I been sad being here, yes.
Have I felt alone in the battle being here, yes.
Have I felt abandoned by God being here, no.
It’s crazy to say that now, because when I first got here, I was struggling with this truly being part of his plan for Ezzy. I took it personal. I started to spat off all the things I have done to keep her out of the hospital, as if I was the only one responsible for her health. Basically, removing God off of his throne and not accepting that he is the one that holds her in his hands.
One day, while we sat playing cards, she asked me a question in a hushed tone while she looked at the group of people standing in her room talking. She said, “when you were in the hospital, did you have a bunch of people in your room like this?”.
It hit me then how crazy it must be to have a revolving door of adults in your room 24/7. I was immediately amazed at how well she was handling it all. On average, she sees over 20 different faces a day walk into her room. I lost count of how many different people would come in and say “Ezzy is it ok if I take a listen to you?”. At first she would engage with them, atleast make eye contact, but now she quietly obliges with a head nod and doesn’t even engage.
She woke this morning and didn’t even want to talk to me. I asked her what was wrong. After a while she said, “what are we going to do today? Oh wait, nothing”.
Its those moments that I have wondered how this is shaping her.
If I am not careful, I will just look at the obvious or more loud reactions to our life here in the hospital and miss out on the quiet and life-giving moments that have happened.
I can’t recall the last time I just held my girl, like I do now each day. We got to see a tiny little baby, with an NG tube up her nose outside our door. The nurse practioner has heard Ezzy mention her siblings and how much she misses them so she brought the baby up to our door so we could look safely through the glass and melt over a sweet little baby. Ezzy’s squeals brought joy to my heart. I told her stories of when she was a little baby, living in the hospital, tube up her nose just like the one we saw today.
I can’t recall the last time I had hours devoted with just one single child, like I have recently, especially an older one who doesn’t need me as much or is in full time school. We have spent every moment together for the last 9 days. She has learned to read me and catches me when I go deep into my thoughts, more times then I want to admit.
She made me the most precious banner after we had spent the morning making her one.
She calmly talked me off the ledge when my perfectionist soul was throwing a tantrum over the stupid crab origami we were making.
She has asked me hard questions when team members would come and sit with us, (after they would walk out of the room) showing me she has my talent to be immersed in something and still be able to follow conversations happening around you.
Its been 9 days of little sleep, thanks to the demands of night shift. She asked me this morning if I would grab her a coffee and informed her doctors that she wants to go home where she can actually get some sleep, ha!
This absolutely wasn’t part of my plan. I didn’t want this to be part of her story.
I will never be able to get back these 9 days where it was just her and I.
We have sang together. We have cried together. We have laughed together. We have prayed together.
She may have woken up discouraged by yet another day here, but as the day went on, as I listened to the gentle nudge of the Holy Spirit and how I could help her reframe her day, I saw her find joy in the midst of the storm she is facing. She mustered up the courage I have been in awe of and is being the warrior that I have always known her to be.
If this is what God wrote long ago, then I need to trust our author and realize that his stories always have a better ending then the ones that I would write.
Warrior on Ezzy may. Warrior on.