Readers

Books books & more books. 📚 Here’s a list of books our family loves & some more that many of you recommended that we need to look into! 👀 ***

Beverly Cleary (Mouse & the Motorcycle & Ramona, Henry Huggins, etc. series)
Roald Dahl (BFG, Charlie & the Chocolate Factory, Matilda)
Fable Haven series by Brandon Mull
Dragon Watch series by Brandon Mull
What is…/Who was… Books
Ranger’s Apprentice series
Spirit Animal series
Hardy Boys series
Encyclopedia Brown series
Chronicles of Narnia series
Maniac McGee & Stargirl by Jerry Spinelli
The Kid Who Ran for President & The Kid Who Became President by Gutman
My Side of the Mountain
Mrs. Piggle-Wiggle Series by MacDonald
Holes & Wayside School series by Sachar
Mac B Kid Spy
A Series of Unfortunate Events by Lemony Snicket
Magic Treehouse Series
Boxcar Children series
Harry Potter 1-3
Where the Red Fern Grows & Summer of the Monkeys by Wilson Rawls
Peter Pan by JM Barrie
Mrs Frisby & the Rats of NIHM
The Pushcart War by Jean Merrill
The Giver by Lois Lowry (+series)
Number the Stars by Lois Lowry
Night of the Twisters by Ivy Ruckman
The Castle in the Attic by Elizabeth Winthrop
Treasure Island by Robert Louis Stevenson
Swiss Family Robinson by Johann David Wyss
Little House on the Prairie series

Innocence

Tonight Dan came home from work early and we got outside as a family. The sun and air immediately reinflated my soul. I smiled watching my boys explore a dilapidated tree fort & practice throwing long sticks as if they were javelins in the Olympics. I laughed out loud at Dan’s attempt with a relatively accurate running prep imitation 😆 We cheered on Lydia, whose walking prowess has improved enough that she can navigate the rough, grassy fields much more successfully & without getting frustrated. I took pictures. I saw the sky.
We came home and just as I was uploading pictures, I read news of the nuclear power plant under fire in Ukraine.
How do these worlds coexist? How can I feel joy & horror within the same half hour? What do we even do?
I don’t know. I don’t know. I don’t know.
I pray. I cry. I look for ways to help. I try not to let it swallow me alive. And I celebrate these beautiful children; protect them with my life. 🙏🏻💛💙

Birthday Girl

It was Lydie’s birthday this week! 🎉 Everyone was getting over a stomach flu so celebrations have been staggered & disjointed… still playing out. Party all week long! I’m learning to bend with the unexpected. I have made several efforts this year to have a Lydie-mindful birthday party. In the past we have tried to impose our traditions on her, but she can’t always handle them. SO… this year we had balloons 🎈 which she loves 🥰 Daddy got her an extra giant pink one that has been cheering me up for days. I got a lot of gift bags for her presents—she absolutely hates the sound of wrapping paper, so everything goes in a bag (unboxed & ready to play with because we get frustrated with too much waiting and are wary of packaging noises) and it’s a simple unwrapping process. We unwrap SLOWLY so as not to be terrified by all the whirl & overstimulation. Then we top it off not with the cupcakes we have tried every year, but with chocolate pudding—a non-solid and therefore non-terrifying food 😁👏🏻 It looks a little different, these adjustments, but also a lot the same. And special-tailored with love for our girl, which is the whole point, anyway. 💛 Happy fourth, my darling! How very grateful we are for you!! 🎂 #misslydiefaith

Joy

Ain’t no hug like a Lydie hug; ain’t no joy so overwhelming & pure. 💗 #misslydiefaith

I'll Walk With You

There’s a song we sing in my church called, “I’ll Walk with You.” After Lydia was born it took me months to be able to sing it without breaking down in tears. Reason being I always saw myself as the walker, not the walked-with… But of course we all need to be walked with at one time or another. These days, I find myself often thinking about the words & their weighty import. Who walks with our family? Everyone, I hope. So… with whom do I walk?—Walk like it’s an action word, not just a song. Who have I failed to see? How can I be better? *** I can’t help but think that this will be more than a song to my boys. They’ll live it all their lives, and hopefully this early training will give them better eyes & feet & hearts at a younger age. Better than mine at their age. MLK said “injustice anywhere is a threat to justice everywhere.” How personal that is now. How heavy the implications. I think about it a lot.

If you don’t walk as most people do,
Some people walk away from you,
But I won’t! I won’t!
If you don’t talk as most people do,
Some people talk and laugh at you,
But I won’t! I won’t!
I’ll walk with you. I’ll talk with you.
That’s how I’ll show my love for you.
Jesus walked away from none.
He gave his love to ev’ryone.
So I will! I will!
Jesus blessed all he could see,
Then turned and said, “Come, follow me.”
And I will! I will!
I will! I will!
I’ll walk with you. I’ll talk with you.
That’s how I’ll show my love for you.

Advocacy

Still sharing heart stuff in my stories. Today’s posts are about the financial stress families face & how this all ties in to what it means to be “pro-life.” Real-world morality & solutions are complicated & require a lot more than catchy slogans. And to all the medical families out there struggling & fighting on multiple levels (medically, emotionally, financially, & on & on)—we see you. 💗🙏🏻

Getting out

Honestly, spring is pretty ugly at first 😅 But hey, we’re outside so, yay 😁

Light Hunting

February 💛 It’s a good thing you include multiple birthdays & Valentines Day, because the end of winter is rough. Even so, the weather has been warm for a few days, I caught up on my 365 after a rough patch, and spring + light are just around the corner. ✨

Heart Week!

It’s CHD Week! The week we honor our heart warrior, Lydia, and all she’s been through! 💪🏻💛 One thing I’ve learned from this pandemic is that we all could learn more & gain compassion about what a high-risk life looks like. I’m sharing little snippets in my stories about her birth, diagnosis of 4 heart defects, two open heart surgeries, her pacemaker, and what maintenance looks like for us now. Just sharing in bite-size pieces throughout the month. I’m also saving everything to my “💛 Warrior” highlight for future reference. As a pre-surgery heart mom I combed the internet for others’ stories in order to know what to expect, so we know how it is & we’re an open book, here! You can also search past heart-related IG posts including everything I wrote in real time during her surgeries by referencing the hashtag #lydiesheart 💛😘

Paradigm Shift

She changed everything. Right down to my soul. Blew the ceiling off my understanding; broke the unrecognized walls of my prejudices down. She teaches me when to stand up and when to shut up. How to love. Pure as pure as pure.✨ She brings me closer to God. She’s helping me become more of the person I should be. I took her on my lap today and told her thank you. (Wiggly thing has no idea, but I felt it.) Who knows the sacrifices she has made and will yet make to fill this role as my greatest teacher—it humbles me to my core. Heaven knows I’m an awkward student... Yet I believe she’s here willingly; that she knows more about light & love & goodness & Christ than I can imagine, and just came to show our family the way. My greatest gift. Gosh I hope I can live up to you. 💛 #misslydiefaith

We Celebrate Her Worth

An important distinction… We celebrate Down Syndrome. Yes, there are challenges that come with having an extra chromosome, but it has been our experience that the good greatly outweighs the bad. Having a child with Down Syndrome is fulfilling, joyful, enlightening, and beautiful. Truly. Would that everyone could know someone with Down syndrome!! Having a child with heart defects, on the other hand, is traumatic, terrifying, and trying beyond description. When Lydia was born we received 2 diagnoses within one week. I could not get the words “Down Syndrome” and all the fear they evoked out of my brain. So much so that I brushed off “congenital heart disease” and “heart defects” as just one more thing. Little did I know how backwards my assumptions were. Down syndrome & heart defects are correlated so it can be tempting to lump them together; but I assure you, having experienced both, Down syndrome is the gift that gets us through everything else. It is the light, joy, and pure radiating love that fuels us. It’s the heart stuff—the surgeries, risks, fears, and complications—that’s hard. But is she worth it? ABSOLUTELY.

Grownup Dreams

Will this be the year I:
* Start a writing program of some sort?
* Eat less sugar & learn to love running?
* Finally make it out of quarantine?
* Don’t hit our insurance deductible & instead get to finish remodeling the kitchen?
Yes, yes, please be yes; these are my grownup dreams.✨

Thankful

Yesterday I peeled back his mop of thick blonde hair and took a look at the sledding scar. It’s healing beautifully—flat and rosy pink. It’s also five inches long and looks like he had brain surgery. I let the hair fall back in place, kissed his head, sincerely thanked him for still being here, and prayed he’ll never go bald. 💛

Big Delight

Children have a way of approaching the world with such purity & delight that it makes everything new for those of us with older, more world-weary eyes. As with so many things, this girl takes that childhood light and makes it just a little… extra. 🤩😄 I buy her coats a little big on purpose, but don’t worry, her personality fills it up 😉 #misslydiefaith

Lines

In January, perhaps more than any other time, we walk the line between shadow and light.

Sleep Study Recovery

Sleep study last night. Let’s be honest: Sleep studies are just kid/parent torture in the name of science 🤪 I did my best to wear her out during the day—no nap, ran around the park… It paid off in that she crashed early and hard for about two hours… then she woke up covered in cords in a weird bed, with blinding monitors everywhere and strange people telling her to go back to sleep. Why doesn’t that work?! 🤣 Still trying to coax the adhesive off her skin/hair & likely will for the next 3 weeks (IFYKYK). All told, she was a champ, and I‘ve watched the video of her singing lullabies along with her Daddy 5,000x and counting. 🥰

Spiral Jetty

The Spiral Jetty Collection 1. It’s amazing to me how much I crave the wilderness. I feel closer to God & myself the bigger the sky gets.

Thoughts

“For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”

Another winter, another faith walk.

Comfort

Sometimes I have what I’ve come to describe as “trauma dreams.” Dreams that cause me to relive aspects of my most difficult experiences & experience all of the painful emotions again. They usually deal with aspects of Lydia’s birth or heart surgeries. They’re always very real & debilitating. I wake up the next morning emotionally exhausted, unable to move.
Last night I had such a dream. It’s still vivid & the emotions are still painful, hours later. It took me awhile to get out of bed, & when I did, I stumbled to the kitchen where I took my medication, then sat in a spot of sunlight in the middle of the floor to eat my chocolate cake for breakfast. #mature
Just a couple bites into this emotion-purging ritual, Lydia came over. My bubbly 3 yr old is often happy to see me in the morning, but rarely stays in one place for more than 3 seconds—ever. Today, she investigated the situation, laid claim to the lid for my takeout, and trotted off. So much the better; more cake. But then she was back. And she was climbing into my lap. And not just casually giving me a hug, but wrapping her arms around my neck & her monkey legs tightly around my body. She was there to hug.
Again, I expected her to flit away as she does, & my heart was too heavy & hurting to think more of it than, “Yes Sweetie, good morning. That’s nice.” But still, she stayed. When gravity naturally caused her to relax her grip, she reconfigured & climbed me, again. Wrapped me up in her squirmy-3-yr-old bear hug.
Ok, this was getting more profound. But then my sweet daughter floored me by using her few words to articulate her understanding & empathy in a way she never has, before: “Sad. Sad. Sorry, sorry, sorry.” 😭😭😭
She continued to insist on this wiggly, wild monkey hug for nearly 10 minutes. Never has she initiated or illustrated understanding like this before. I felt myself respond—choose to respond. To acknowledge the trauma of our past, & view it as the gateway/catalyst for unimaginable love. I let that love replace my pain.
This is the magic of Lydia & her ongoing gift to me: to acknowledge the deepest pains & struggles of reality, and then to watch them become swallowed up in love. 💛