When the News Is Personal
A major news story this past week hit close to home. A woman in Texas desired to abort her unborn baby after learning the child had trisomy 18 or Edwards syndrome. I remember the fear we experienced when we learned Verity, our youngest child, might have this condition. Since we have walked this journey ourselves, a number of people reached out to us this week.
"Have you heard?"
"Do you know about this?"
"What do you think??"
I have so many thoughts swirling around in my brain. So many feelings bubbling about in my heart. It's hard to capture them all in words, but here's a feeble attempt about a few of them.
First, regarding the situation at large:
My heart feels the weight of a devastating diagnosis all over again. I ache for Kate Cox and her family. I wish I had the chance to take her out for coffee and share our story. I wish I could encourage her that even though this seems so incredibly difficult, there is hope, beauty, even joy in this journey. I shared a few other thoughts in a brief video here. And I will probably share more points through our ministry channels (you can subscribe here if you don't already follow Verity's Village).
Second, regarding how a story with national interest affects us on a personal level:
It's easy for me to get caught up in these emotional aspects. I feel things deeply, and I truly desire to help others on a similar journey. And yet I'm not only Verity's mama and the founder of a non-profit that she inspired. I'm also mom and homeschool teacher to other kids (and teens and young adults) who still need me! I had to set aside my phone and laptop, pick up the school books, and snuggle with my kids. The world outside can get along without us. We chose to continue our journey through Genesis, memorize our next verse in Psalm 24, study a people group in Africa, practice locating central African countries on a map, and so on.
Yes, there's a world outside our doors that is hurting. But there's also a world inside my home, young hearts and minds I am responsible for shepherding.
Homeschool Focus & God-Given Passions
One thing I've learned over my many years of homeschooling is that life doesn't slow down! And I'm still learning how to manage the various hats I wear in my different roles. God has given me the beautiful privilege of being Verity's mama, her voice in a world that doesn't typically value what she represents. I cherish that role, and I have a deep passion for speaking on behalf of the community we minister to.
But I also have a deep passion for homeschooling my kids and helping them make sense of what is happening in the world around us through the lens of truth. As we talked through the current events this last week, we were able to do more than check off the boxes for our regularly scheduled schoolwork. We dug more deeply into God's truths with love and compassion. I pray my children will develop their God-given passions so they too can be a voice of truth in a hurting world. For us, homeschooling gives us unique opportunities to fuel those passions.
Mama, what passions has God laid on YOUR heart?
What passions do you see Him developing in your children?
How are you incorporating that into your homeschool?
My Be Rooted program addresses these deeper, spiritual aspects of homeschooling. We spend a whole module digging into our God-given passions. If you haven't really thought of this before, I encourage you to pray about it. And consider reaching out to me for a quick phone call to discuss it! I'd love to help you be intentional in this area!
Love what you're reading? Subscribe here for updates!
I am jokingly calling July 11 - 15 Nurse Appreciation Week, because our wonderful nurse is out of town for a much-deserved break with her family. While we intentionally give praise and thanks to the Lord for His kindness in blessing us with such a faithful home health care provider, I have been ever so much more aware of all of the things Ms. Yvette does on a daily basis to help Verity live her best life! Of course, as Verity's mommy, I love caring for her myself, but I will say...I don't know HOW I'd also homeschool our other kids plus do general household management if we didn't have in-home help regularly!
Here's just a quick overview of what a day with Verity might entail nowadays...
6am Water flush (we have to give her water through her g-tube to keep her hydrated)
7:00 Water flush, check diaper
7:30 Give glycerin suppository, rub belly, wait for poop; if not already prepped, make a new batch of formula and prep a new feeding bag (she gets a new one every day). On Mon, Tues, Wed, and Fri, this is the time our nurse clocks in.
7:45 Change poopy diaper; dress for the day, including putting on her AFOs (orthotics/braces for her ankles)
7:55 Put Verity in the stander so she bears weight on her legs/ankles, also making use of gravity to help get even more poo out
8:00 Administer coconut oil (helps with poo...see a theme here?!) and begin morning bolus feed. Make sure she has some toys to play with in her stander.
8:05 Brush her hair and put it up to keep it out of her face when she head bangs. Use barrettes to secure her glasses and BAHA (bone-assisted hearing aid, which is on a headband).
8:10 Apply an eye patch over her left eye. She will wear this for 2 hours to help her right eye work harder. It's tracking much better than it used to!
8:25 Stop the feeding pump--she's having issues--grab a cloth and wait for it...........yes, she's grunting...here it comes...sigh. Much of her formula is now spewed into the burp cloth and dripping onto her toys. Make sure she's finished and suction out her nose, then clean the mess.
8:40 Mess is cleaned and she seems ok, so we resume feeding. 14 more ml to go.
9:00 Breakfast is finished, food is settled. Administer probiotics along with a small water flush, then take her out of the stander and change her shirt since this one has emesis on it. Change her diaper as well...success on the poop front!
9:30 Water flush with Lactulose (helps keep her poo soft).
10:00 Water flush, remove the eye patch
10:30 Water flush, remove AFOs and check skin, give her a break before putting them back on.
11:00 Water flush. AFOs back on.
(We do therapy activities as well during those time blocks after breakfast. Depending on the day, Verity will have anywhere from 1-2.5 hours of therapy. Today, however, we had no one come for therapy, so we did our own thing!)
11:30 Lunch bolus feed! Verity has worked hard; we let her sit in her feeding chair and play with toys during lunch. (I should have given coconut oil, but I forgot...)
12:30 Water flush
1:00 Water flush
Water flushes continue every half hour...we also put AFOs on and off depending on her activities.
Various therapeutic activities...may include playing outside on the swing or trampoline; practicing moving the wheelchair; sit-to-stands and then into the gait trainer or walker; using the crawler; reading stories; etc.
3:00 Afternoon bolus feed
4:00 Water flush. Put her in bed with her hip brace on for "nap time."
4:30 Water flush.
5:00 Administer Prevacid (helps with acid reflux) and Flonase (helps her breathe through her nose better).
5:30 Water flush (On Mon, Tues, Wed, and Fri, this is the time our nurse signs out.) If Verity is napping, we leave her alone! If she's awake, we remove the hip brace.
6:00 Water flush
6:30 Dinner bolus feed--at the table with the whole family (or whoever is home).
7:15 Bath and clean up if it's a bath night (usually Tues, Thurs, Sat)
7:30ish Sit on Daddy's lap during read-aloud time (or movie if it's Friday night)
8:15ish, or whenever she is getting fussy: Change for the night, water flush to catch up on water, brush hair, brush teeth, put in bed, sing our songs
8:30 Administer prophylactic antiobiotics (helps prevent UTIs because she has renal reflux), start overnight feeding. Mix up overnight formula with vitamins.
9:00 Currently, on Sunday through Wednesday nights, we have a night nurse. HOORAY! She arrives at this time. Otherwise, we put her CPAP mask on around this time.
9:30 On Thurs and Fri nights, we welcome our friend and respite provider, Edie, at this time. HOORAY!
And of course, not on any time schedule, there are the many wet diapers to change, often along with pants because she has a super power of peeing through and/or around her diapers! We are grateful to have disposable underpads provided through our DME (durable medical equipment) company!
I'm sure I've forgotten some things...and this doesn't even touch on all the FUN things we get to do with and for our girl! These are just the "to-dos" that I try to keep track of on the days we don't have nurses. :-)
I hope you've enjoyed this little glimpse into life with our special girl!
ETA: We got some great comments on this post on social media, so we turned this idea into a "Day in the Life with Verity" video! Check it out! And please subscribe to the Verity's Village channel while you're at it!
Love what you're reading? Subscribe here for updates!
