Support Registry Update

Gratitude and Bitterness

In support of
Hall Family
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I'm on Day 9 of Round 3. All things considered, so far, it has been a bit easier than the first two, I think mainly because a pattern has emerged, and I know a bit more about what to expect. But it is still incredibly hard. It starts with a few days of "the misery" of heaviness and extreme fatigue and feeling unwell. Then neuropathy increases and it feels like my legs won't work properly. Then the steroid crash - anxiety, shakiness, fatigue. Then pain and an increased heart rate  (I suspect from a combination of mild dehydration, mild anemia from counts dropping, and withdrawal from the steroids) that causes insomnia and, frankly, feels quite unsettling. There are digestive issues all throughout. My hormones are all out of whack. Nothing tastes right. Some of these things were worse or simply scarier the first couple of rounds. Now that I know what to expect, I feel a little more equipped to handle them. That said, this is getting old. I'm feeling impatient. It takes a solid 10+ days to start to feel a bit normal. While that's not that long in the grand scheme of things, it feels long in the midst of it, and especially when you only get another ~10 days before having to start all over again. I feel like I have to squeeze all of my work, household chores, errands, appointments, and small bits of fun into those few days. In some ways, that ruins them. I'm over it. Yes, already.

In May, there are lots of celebrations: end of school year, graduations, start of summer, vacations, etc. My Facebook feed is flooded with photos of all of my friends smiling at various events, and I'm jealous. I'm mad that most of our summer will be spent stuck in the house in survival mode. I'm sad that we will have to miss our oldest niece's high school graduation. I'm bummed that we are missing Hannah's intensive physical therapy camp that we planned to do in Texas in June. I feel guilty that we can't do swim lessons with Cara. It's hard to feel like you're not really living life, even if you know it's temporary. (It reminds me of how we all felt in 2020!)

Of course, I'm well aware that this is a short amount of time compared to my whole life, and I plan to live a lot more life. We can plan some fun things for later in the summer or fall. We're working on a big family celebration trip early in 2026. We can reschedule Hannah's camp. Our niece won't have another high school graduation, but Lord willing, I plan to be at her college graduation in four years. There are people with cancer who have much longer treatments. There are people with cancer who are terminal. I'm well aware of all of these things, and I'm so grateful that our situation is what it is. Truly, I am. But it still stinks.

I've always had a hard time holding two competing or conflicting emotions together. I feel like I need to resolve the conflict. The last few years processing Hannah's disabilities have given me great practice at holding conflicting emotions together. Now I'm being given even more practice. I guess that God knew that I needed help with this skill. And this skill is vital for navigating life and for understanding who God is. After all, God's truth is always found in seemingly conflicting ideas: Jesus is fully human and fully divine; God is three, God is one; we are at once justified and sinners; the Kingdom is already but not yet; God is all-powerful, yet evil is real. The list goes on. I figure that if I've managed to reconcile these mysteries of the faith, I can manage to be both grateful and bitter at the same time. And God can handle it, too. So that's where I am today: still grateful, but complaining. :) And hanging in there.

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Comments

Julie Braden

❀️love you and praying for you all. May you feel God's presence each and everyday even in the midst of trials and uncertainty.
  • 7 months ago

Edie English

Much love, prayers and support from afar.
  • 7 months ago

Connie Greenfield

It is OKAY to feel grateful yet complaining at the same time. You are riding an emotional and physical roller coaster and I cannot imagine what you are feeling. God is with you ALWAYS. πŸ™
  • 7 months ago

Mary Claney

I’m praying for you and for Hannah every day. πŸ’•πŸ’•πŸ™πŸ™
  • 7 months ago

Nancy Mayo

All I can say is you are amazing. You are doing great. Hang in there . πŸ™πŸ» and love to you and your family πŸ’ž
  • 7 months ago

Priscilla Turner

Praying for yo, I can’t imagine how difficult it is for you and so grateful that you can feel free to voice your very real feelings, as a child of God he is always with you and understands. Prayers for healing, peace and strength. Hugs to Sean, Hannah, Cara and your loving family, I keep them in my prayers too.
  • 7 months ago

Barb Gusew

Andrea. You are an amazing writer. I feel blessed that you share your thoughts and feelings with us.
Praying Hod’s strength to be yours today and everyday. ❀️
  • 7 months ago