I remember this night so clearly.
One year ago, we were 6 days into what would become a 24 day stay in the hospital. Sophie was in the very middle of ROID RAGE central. She was finishing a round of steroids, getting sedated weekly for spinal taps & spinal chemo, and feeling generally like crud.
Fever had put us back in the hospital after being home for only 2 weeks. For cancer kids, anything above 100.3 requires an ER visit, isolation, immediate antibiotics, blood draws, urine cultures, and usually a hospital stay. It also never fails that when you’re in the ER, the cancer floor is full so you have to wait hours for a bed to open up. It’s not fun.
In this case Sophie’s immune system was at 0 and we had to get to at least 400 to be able to go home. Sounds easy right? Except for the fact that she was getting chemo daily that would keep that number at 0 for at least 2 weeks. We knew we were in for a long stay and we were making the best of it. Stickers, movies, toys, coloring books, play doh, bubbles, books…we had it all. But this night was so frustrating.
We were so incredibly blessed with so much help throughout Sophie’s illness. For our first 5 week stay in Dallas, Jonathan and I never left to go home-not once. This time, it was a ‘routine’ expected stay, Jonathan really needed to go to work, I was on summer break, and my sister and mom were available to help anytime. So for the first time, I had been at the hospital alone for a few days.
Being a full time care giver to a toddler who doesn’t understand what’s happening to her is hard. Caring for that same toddler who is pumped full of steroids that make her constantly ravenous, incredibly cranky, and essentially bipolar is hard. She was so chunky that smiling was hard on her cheeks and we had to go up a size in diapers. When the same toddler has fever and can’t leave the room to go for walks or play in the playroom until she’s 24 hours fever free is hard. And doing all of that alone in a hospital because your toddler has cancer….is hard.
Sophie was over it and over me on this night. She was sick of being poked and messed with. She was sick of being stuck in her room. She was sick of me. For two days solid the only words she spoke to me were No Mama, Stop, No Touch It, Go Away, Let Go…..and she kept banishing me to the couch only to ask me to hold her two minutes later. I was in tears a lot with frustration. I’d escape to take a quick walk while she slept. Sometimes I just stepped outside and sat on the floor outside of our door to just breathe.
That’s what I was doing when Aunt Jacy got there to give me a much needed break. I didn’t want to leave and go to Ronald McDonald because she had a spinal tap early the next morning. But just having Jacy there so I could leave the 6th floor was huge. I was able to go get some food, eat alone, call Jonathan, sit in the chapel for a bit, and just take a long walk outside. By the time I got back-Sophie was sick of Aunt Jacy and wanted me again. Steroids y’all-they’re no joke.
So at midnight, when it’s been 24 hours since fever, and the steroid raging toddler is still awake…..you escape the room and go for a walk. The first walk in 3 days.
And it was glorious.
She was so sassy and demanded her purse, paci, Crocs, Raffe, and her sunglasses. She took off, swinging that right arm like she meant business. She’d get too far ahead of us and stop to turn around and instruct us to hurry up. She knew that even though she didn’t like us right then, she needed us because we were pushing the IV pole. It was hilarious and Jacy and I had to keep making a straight face because our laughter made Sophie mad. The walk tired her out so of course, by the time we got ALL the way down to the end of the 6th floor, she turned and said ‘Hold me mama’.
And just like that-my frustration was gone and my heart was mush. I picked up my chunky baby and carried her back to the room where she slept all night on my chest.
I was reminded that night how similar we all are to the steroid toddler. We rage against God because things aren’t going like they should. We feel ‘stuck in the hospital room’ unable to do what we want when we want it. We say No, Stop it, let go, and go away and inevitably, when we leave that isolated room, we take off on our own with our purse and sunglasses. But when we get too far ahead, the IV pole pulls our arm and we have to stop and look to the one who is holding the pole. The one who enables us to keep walking. The one who picks us up when we’re too tired to keep walking. The one who carries us back to our room and let’s us rest in His arms.
Life is hard. It’s all hard. But He’s good and He’s holding you even when you’re acting like a toddler on steroids.
#SophieTheBrave #DoMoreForSoph #Godisstillbigger #ChildhoodCancerAwareness
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