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Ask questions
When you're faced with a lot of decisions that may affect the long-term health of your child, you can feel pretty helpless. While I frequently have to tell my husband "I don't know," I ask a lot of questions where Xander's care is concerned. Write your questions down—it's clichéd, but there's an app for that, so keep a list of questions on your smartphone, if you use one. That way you don't forget what you need to ask.
When you're faced with a lot of decisions that may affect the long-term health of your child, you can feel pretty helpless. While I frequently have to tell my husband "I don't know," I ask a lot of questions where Xander's care is concerned. Write your questions down—it's clichéd, but there's an app for that, so keep a list of questions on your smartphone, if you use one. That way you don't forget what you need to ask.
Find reasons to laugh
In July, Xander underwent his second surgery in five days (to replace his
central line, which is used for giving IV medications and fluids over a long
period of time). When I got down to the holding area, pre-surgery, the surgeon
asked me what my expectations were of what would happen. “Central line placement,”
I told him.
"There's not to be a bone marrow biopsy today?" he asked.
I stared at him, bewildered. "No," I said slowly. "That's not scheduled for a couple weeks."
Turns out, one of the physician's assistants on Xander's case had seen that Xander needed this procedure, so he thought he'd kill two birds with one stone—but hadn't informed anyone else!
In situations like these, it's easy to be upset—the left hand doesn't know what the right hand is doing—but the head doc on Xander's case was relieved when I laughed when she told me what had happened.
"There's not to be a bone marrow biopsy today?" he asked.
I stared at him, bewildered. "No," I said slowly. "That's not scheduled for a couple weeks."
Turns out, one of the physician's assistants on Xander's case had seen that Xander needed this procedure, so he thought he'd kill two birds with one stone—but hadn't informed anyone else!
In situations like these, it's easy to be upset—the left hand doesn't know what the right hand is doing—but the head doc on Xander's case was relieved when I laughed when she told me what had happened.
God's Got This
My pastor, Dan Sutherland, introduced this motto to our congregation in 2012. It became something I clung to during the past year. Very little in life is within our control, and when you're going through a trial, it's important to remember this. With Xander's transplant, we could choose the doctors who would treat him and the drugs they would use, but whether it worked—that was all in God's hands. While we've got a spunky three-year-old now, we know we're still wandering through the woods looking for the meadow as far as Xander's health is concerned.
My pastor, Dan Sutherland, introduced this motto to our congregation in 2012. It became something I clung to during the past year. Very little in life is within our control, and when you're going through a trial, it's important to remember this. With Xander's transplant, we could choose the doctors who would treat him and the drugs they would use, but whether it worked—that was all in God's hands. While we've got a spunky three-year-old now, we know we're still wandering through the woods looking for the meadow as far as Xander's health is concerned.
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| Xander |
Bible Time
I think my dependence on God got stronger throughout this
whole experience—it almost has to when you realize how little control you have
over this kind of situation. While I didn't find near as much time to read my
Bible as I would have liked (or probably should have), I was able to sneak an
earbud in and listen with the YouVersion app on my phone. Listening to God's
word definitely was a quick way for me to get an attitude adjustment on my bad
days.
Prayer
During this time, my prayers were frequently short snippets
or sentences, dispersed throughout the day - not one long conversation at once,
but a bit here and there throughout the day. If I had it to do all over again,
I'd probably plan to do things differently, although with the irregularity in my
son’s five month treatment, it might not have been possible to have a regular
prayer schedule.
Grace
The biggest thing I learned through this whole experience is
to offer everyone grace; even my husband had to receive it on multiple
occasions. Stress leads to crankiness, making you lash out at everyone in your
path. But if you offer everyone grace and keep a positive outlook, they'll thank
you for it—and you'll show 
Christ to everyone you meet. You may even get a
chance to share the Gospel with those who want to know how you keep such a
positive attitude!
Christ to everyone you meet. You may even get a
chance to share the Gospel with those who want to know how you keep such a
positive attitude!
Liberty Speidel is a wife, mom, and writer of mysteries and science
fiction who blogs at Word Wanderings. Though happiest at her computer creating fictional worlds, she
enjoys baking, yarn crafts, hiking with her family, and taking very long
walks with her family's Labrador Retriever. She and her family reside
in Kansas. You can learn more about her son's medical struggles here and here.
Thanks, Kristina, for having me today and for sharing our story!
ReplyDeleteYour little man looks absolutely adorable, Liberty.
ReplyDeleteThank you, Stacy! He's a handful, but we love him so much! :)
DeleteHaving said so many prayers for Xander, you, and the family, I am still in amazement, and shake my head, that you had to go through this. Children should never have to suffer such physical conditions. But thanks to the Lord, He was with all of you, seeing you through the dark tunnel. I pray the Lord continues to work in Xander's life to bring full recovery to a healthy body. Bless you, sweetie!
ReplyDeleteThanks, Lynn!
Delete