Kyrie’s heart has always struggled, since she was itty bitty.
The problem with a heart, as it turns out, isn’t so much how well you can breathe.
I mean, that matters.
But more so, what matters is how consistently you breathe.
If your heart knows your body doesn’t get enough oxygen, it can adapt, to an extent, for a while.
But this changing levels of oxygen all the time wears a heart out differently because it has to work extra hard to keep adjusting.
That’s always been her problem.
One option is still the trach, but no one locally wants to do it because they fear she would be vent-dependent, which raises other concerns, and because she gets sick so easily that a trach would make her even higher risk. We have been round and round it her whole life, and the the issues on the table change again with palliative care.
In the meantime, we have real children who have real questions about our everyday life that comes in between all those medical appointments.
So we have talked about the heart as it has come up, and even about the parts of the heart and how the heart pumps.
Because they want to know.
And because we have one very smart two year old who asks really big questions.
What does my heart look like?
Why does my heart have muscles?
What do heart muscles look like?
How do heart muscles work?
How does my heart pump?
That’s a lot from a two year old, and Anber and Mary had even more questions.
And especially after seeing the fish jump out of the tank at the pediatrician’s office, where they got to look and learn about that fish, we have had all kinds of questions about animals and how bodies work.
We have even looked at some DaVinci art to talk about the math of it, the beauty of it, and the science of it.
That’s why it made sense, in a homeschool and natural learning kind of way, when the science teacher friend showed up with a(n animal) heart for them to dissect today.
The boys were not as interested, so we didn’t make them do it, but the girls loved it.
They learned so much today, and answered so many of their own questions!
I am so grateful for learning opportunities like these, outside the books of our classroom, and so grateful for this lesson today that normalized some very grown up heart talk for a tiny little girl.
That’s palliative care.
Thank you, Shannon Chatwin, for the heart!