This Child…

Has been living at home since December 30th. Our eldest, at 22, is ready to buy a home of his own. The house hunt hasn’t been easy given his budget restrictions and location concerns. He put in his first offer two weeks ago, but the seller went with another buyer. I’m hopeful for his sake that he finds a home soon. Taylor living at home has gone smoothly, with the hardest issue being navigating my van and his dog within the garage. Did I mention he’s living in 1/2 the garage?! 😉 Surprisingly, it’s worked out and Taylor has not complained.

This child,

Continues to keep our household daily threat level at orange. Adriana’s had her usual intervals of intense behavior intervals that keep us searching for answers. The day program is still a good fit for her, although we are working towards a solution to Adriana’s response to Bingo. Yes, Bingo seems to bring out the worst in Adriana and it has led to multiple behavior breakdowns, including a week long suspension back in early February. Adriana’s current love is her cell phone Meme gave her for Christmas. The phone is a dummy display phone but that doesn’t stop her from charging it and making calls 🙂

This child,

Had a big fat week! Last week, Avery finished up the on the road portion of drivers ed and lived to tell about it. Over the next four days Avery had an adult tooth extracted (crowding), got braces, obtained her learners permit and celebrated her 15th birthday! The transition to high school was an easy one for Avery, she maintains an A average in all her classes. However, once again, she experienced rejection when trying out for the school soccer team. Avery jokes that she needs to make her own club for her uncanny ability to never make a team :p

This child…

Oh Livie! We’ve been “ready” for her teen years since she was a year old. Now that she’s officially a teenager, I can honestly say, this age suits her. Livie’s sarcasm, flare for over reacting and overall unease, scream teenager. We’ve been working towards encouraging Livie to see herself as capable (She tends to break down when put on the spot about simple decisions or big things, like the required classroom spelling bee). The girl blew us away when she tried out for soccer at school this month (She didn’t make the cut, but handled it well and Avery told her she could join her club, LOL!). Livie also joined a weekly art club this year and her talent is so cool to see come to light (their medium is clay).

This child…

Is barely recognizable to me these days. Lila’s made multiple academic teams at school and the friendships and self confidence gained through these has been so good to see in her. While the flu kept her from participating in the Math Masters Competition this month, she was able to help her Robotics team earn first place in the county competition!

This child…

Still prefers boys to girls, athletic clothing to dresses and animals over people. Lucy has taken off academically this year, but we are realizing she still needs support from mom and dad to get things done. I love how Lucy still feels little, even if she’s the same size as Lila! Lucy’s temperament is just such that she can be both oblivious to the world around her and deeply moved by the smallest of things.

This child…

Is never going to let his mama rest :p While we’ve developed a good rhythm for overnight feedings and Jude is positively thriving physically, we have hit wall after wall at school. Long story short, Jude is below grade level, but we have every support we can in place and a good plan for second grade. Jude is absolutely obsessed with music and singing; his Amazon Music playlist is ever growing and he’s added “singer” to his future job list (alongside Bob-the-Builder and fire fighter).

This child, er, dog…

Joined the family February 16th! We’ve been on the hunt for a rescue dog since October and this 7-8 year old puggle, Humphrey, is just the perfect fit! All our kids are hopelessly in love!

November Reads

1. The God of the Hive by Laurie R. King
2. Of Mess and Moxie; Wrangling Delight Out of This Wild and Glorious Life by Jen Hatmaker — read chapter four; it is everything! This mostly light hearted, playful series of essays is a fun read.
3. Loving my Actual Christmas an Experiment in Relishing the Season by Alexandra Kuykendall
4. Hillbilly Elegy by J.D. Vance —This didn’t live up to the hype for me.
5. The Nature of the Beast by Louise Penny
6. Tell Me Three Things by Julie Buxbaum —I genuinely adored this YA novel; with many parts hitting close to home in a bittersweet way given that the lead character lost a parent in adolescence.
7. Presence: Bringing Your Boldest Self to Your Biggest Challenges by Amy Cuddy —While it was certainly interesting in theory, it wasn’t a win for me.

October At A Glance

Soccer Season wrapped up the final weekend of October, but five-ish (Jude’s recovery from the broken wrist altered things a bit), kids playing, David coaching two teams AND working as a referee, made soccer a pretty huge focus of our October.

Lucy – rocking her favorite position

Lila won the coveted High Five character award for her team (David was not her coach 😉)

Adjusting to the feeding tube night life pretty much sucked the life out of me all month.

The start of my cheaters guide to night feeds

Showing off the cool connection cover Jen made him!

Jude is absolutely thriving though ya’ll. He’s gained five pounds! We did hit another bump in the road as the month came to a close and Jude developed a fever and skin infection around the g-tube. Antibiotics for the win!

Looking so big at the doctor this week!

Cast came off after 4 weeks! Yay!

Two of the Apple chicks earned accolades for responsibility at school this month.

Parent – teacher conferences for the elementary crew went smoothly. Lucy knocked our socks off with her reading scores…enough to qualify her for AIG testing (cue tears and drama among the household sisters– stupid testing. Next week!).

Look, a picture with smiling and supportive sisters 😉

Jude continues to struggle academically, and I’ve got a big meeting tomorrow to see if we will increase pull out EC time. *sigh* One battle at a time is not actually reality.

We both prefer reading outside.

The girls stay busy with other activities as well. Livie with Girl Scouts, Lila in Junior Assembly, Avery is active with HOSA and completed driver’s education this month! Liv, Avery, and Lucy all started flag football too!

Junior Assembly bound

No worries, we’ve since scored a vest off eBay for Livie 😜

Celebratory milkshake for completing drivers ed!

My absolute highlight of the month was attending Nest Fest with Elizabeth. This event required me to drive on the interstate (which scares me more and more as I age!), so I was proud of myself for stepping up to the (simple) task. The reward was high– we had so much fun being silly, enjoying the vendors (well, maybe not the food ones!), meeting authors and just having fun. I was also delighted to have a much-needed dinner out with another friend, Katie. Connection without distraction is good for the soul!

Of course, the elementary school’s fall carnival and Halloween festivities make the end of the month a whirlwind of candy, costumes and activity. No complaints from the Apple crew. Well, maybe one…Adriana opted out of sanity on Halloween while at her day program, forcing us to divide and conquer Halloween night while she stayed at home. This was also the first year Avery and Livie were not with us— both girls spent the night with friends, making memories of their own (*sob*).

Best buddies since kindergarten- Celia, Autumn and Livie

I was cracking up over this pic Lila had taken at a fall fest event with friends!

Avery and Emily, cousins & friends!

Trick or Treat ready

Halloween day at school— book character and what I want to be when I grow up

Elementary school fall fest!

Cousin candy swap the weekend before Halloween!

The girls carved their own pumpkins at a party hosted by small group friends.

At the beginning of the month, Taylor and Adriana’s biological mom came up for a visit. While that’s not usually my favorite way to spend a weekend, I adored the chance to have all of my family together for a bit.

A visit with Sharon

my people ❤️

October Reads

1. Dept. of Speculation by Jenny Offill — I loved everything about this book. Poetic, uniquely formatted in stream of consciousness style writing, it tales the short story of a marriage.
2. Reading People: How Seeing the World through the Lens of Personality Changes Everything by Anne Bogel — I listened to the audiobook, which is probably the only way I could finish this book, not because it wasn’t interesting, but rather the academic lean of the content would have me lost! I’ve never understood the personality tests well, but this truly did enlighten me so much! I have a far better grasp on my own MBPT type (finally get the cognitive processes piece!).
3. She’s Still There; Rescuing the Girl in You by Chrystal Evans Hurst — I thouroughly enjoyed this self reflection book filled with biblical wisdom, humor and stories of life as a woman who struggles to accept who she is. I highlighted the daylights out of this thing!
4. At Home in the World : Reflections on Belonging While Wandering the Globe Tsh Oxenreider– I’ve been putting off reading this one for months, even though I bought it! I really enjoyed it, completely surprising myself. It’s light, with touches of depth and all around good feelings.
5. 9 Things You Simply MUST Do to Succeed in Love and Life by Dr. Henry Cloud –I’ve read a few of his books and they never disappoint. There’s always some wisdom to be gleaned and a hearty dose of biblical perspective. This book had an odd presentation as he refers to successful people as déjà vu people, the concept is explained in the opening chapter, but one I still found a little weird as I read the book.
6. Come As You Are: the surprising new science will transform your sex life by Emily Nagoski, Ph.D. — While this is not from a Christian perspective, and it contains so much science that my head hurt a little, I do recommend it with caution. I learned a lot about the stress response cycle that was eye opening for me (in all areas of life!). An interesting read for any woman willing to keep an open mind.
7. Every Last Lie by Mary Kubica — this super easy, enjoyable suspense novel is a combination of grief, life and lies (both real and imagined). A pallet cleanser type of novel for me after a heavy dose of nonfiction reading.

October Goals Hits & Misses

Home 

• decorate for the seasons- I’ve given up on this one entirely.
• cultivate hospitality  (Blankets for guests, towels, easy access to basics, snacks, etc) 
• Paint a room (kids’ bath/Jude’s room)   May update: painted 2 rooms! Adriana’s room & the kids’ bathroom got paint makeovers, complete with the ceiling too, in the bathroom.
• Establish password ledger bless, why is this such a struggle??
• achieve one major home improvement (paint kitchen cabinets? replace carpet? new couch?) Added double closets & a window seat to Adriana’s room. 

Relationships

• read A Little Princess with the kids  1 hours and 23 minutes remain of a total 6 hours & 40 minutes. We will make it!
• pursue adventures with the kids (go somewhere new, take everyone to the movies, summer dates with kids) ah, no.
• Connect with David (honor 15th anniversary, put phones away at night, overnight trip?, two dates a month) I think we went to the grocery store together once this month.
• visit beach for 10 year anniversary of Jakie’s passing
• Continue memory keeping efforts (photobooks? Blog weekly?) made & printed a photo book documenting Jude’s feeding tube; kept up the Instagram stories (which I planned on quitting for a while until Livie let me know that was not an option–connecting with my preteen, yes please!)

Personal

• Read through New Testament (specifically The Books of the Bible) all 453 pages complete!
• complete Modern Mrs. Darcy Reading Challenge  steady progress! 
• improve my health (log 10 miles weekly, record food at least 1x a week, start back on cholesterol meds, get a physical) 20.8 miles for October. We continue to avoid sugar, dairy and grains at home, but my part of the “we” here really jumped ship this month— more than once (weight is still maintaining, which may be a record for me!). Generally still following, but sugar cravings got the best of me. Still not keeping it in the house, but I did indulge in Halloween candy and bought kitkats twice! Also, went for my annual physical and started back on a super low dose of cholesterol meds; scheduled an echo for November to keep tabs on my heart murmur.

 

September Reads

1. ​My Sunshine Away by M.O. Walsh — pass, just pass 😦
2. ​Lexicon by Max Barry— super strange Sci-Fi novel, would be a superb movie 
3. ​How The Light Gets In by Louise Penny
4. ​The Rules Do Not Apply by Ariel Levy— loves this memoir! She’s a hot mess, but an effective communicator. Excellent.
5. The Language of Bees by Laurie R. King— love this series, and was surprised this one did not give us a tidy ending, to be continued!
6. The Long away Home by Louise Penny —I rarely confuse my books when reading, but between the odd “magical” references in this novel and similar ones in The Language of Bees, I struggled through this one. Odd story, even for this author and this series. 
7. What Falls From The Sky: How I disconnected from the Internet by Esther Emery —“ Hope always shows up like this, looking ridiculous and childlike against the sheer size of opposition.” Beautiful tales of a woman’s journey in faith during a year of transition in every way, all while disconnected from the internet.

 

September Goals Hits & Misses

Home 

• decorate for the seasons- I’ve given up on this one entirely.
• cultivate hospitality  (Blankets for guests, towels, easy access to basics, snacks, etc) 
• Paint a room (kids’ bath/Jude’s room)   May update: painted 2 rooms! Adriana’s room & the kids’ bathroom got paint makeovers, complete with the ceiling too, in the bathroom.
• Establish password ledger between the planner page & the app I hate, I’ve at least got something happening, lol
• achieve one major home improvement (paint kitchen cabinets? replace carpet? new couch?) Added double closets & a window seat to Adriana’s room. 

Relationships

• read A Little Princess with the kids  1 hours and 42 minutes remain of a total 6 hours & 40 minutes. We took off a whopping 6 minutes this month– precious little car time together!
• pursue adventures with the kids (go somewhere new, take everyone to the movies, summer dates with kids) zoo trip!
• Connect with David (honor 15th anniversary, put phones away at night, overnight trip?, two dates a month) uh. 
• visit beach for 10 year anniversary of Jakie’s passing
• Continue memory keeping efforts (photobooks? Blog weekly?) created and actually printed a summer photobook 🙂

Personal

• Read through New Testament (specifically The Books of the Bible) all 453 pages complete!
• complete Modern Mrs. Darcy Reading Challenge  steady progress! 
• improve my health (log 10 miles weekly, record food at least 1x a week, start back on cholesterol meds, get a physical) 29 miles for September. We continue to avoid sugar, dairy and grains at home, but indulge when out with friends or you know, this entire last week while in the hospital and eating meals & treats from friends and family. 

 

Once Upon a September

We had some family fun.

Zoo trips are always a favorite and we kicked off the month there.

Soccer Saturday’s are here! David is coaching two teams this season (Avery & Livie’s team as well as Lucy’s.) David is also refereeing games in between coaching so his entire Saturday is booked. We’ve spent every Saturday outside on the field and it’s been such genuine fun.

Jude made it one game before breaking his wrist!

Look at me, an actual on-the-field soccer mom!!

David and the girls, sans Adriana, participated in the Color Run hosted by our church to raise support for foster care. 

Livie & Avery

Our girls tried our new experiences.

Adriana’s one-on-one respite provider made soccer Saturday’s possible. Three or four Saturdays in and Adriana’s done beautifully…the worker is holding up just fine too :p

Friday night football for Avery is officially a thing. The girl has made the rounds to many of the various high schools in support of her friends. Love this stage!

Supporting Emily’s dance team at a Forestview game.

Lila made Startown auditions, the worship team for the school age crowd at church! 

Lila also started Junior Assembly.

Livie became a Girl Scout. I was decidedly opposed to this (time, money, commitment), but David won out and I conceded, making one Livie quite happy (worth it!). 

Livie’s in the red, far right; not to be mistaken for her friend Celia who could nearly pass for her twin!

We celebrated.

Taylor’s 22nd birthday request was for me to join him for drinks. While we don’t keep alcohol at home, I’m not opposed to the occasional drink. We had a lot of good laughs with Taylor, his girlfriend and best friend from childhood. 

We had the distinct joy of watching Lucy’s baptism on the 17th. This was so beautiful and made my mama heart so very happy.

baptized by her Daddy

We went to the doctor. Again. Again. Again. 

Doctors appointments to infinity a beyond this month; some planned, some not. 

Jude. Oh Jude. 

In addition to the planned GI, endocrinologist, and developmental/behavioral pediatrician appointments, we added in two urgent care trips and a few other tube-related appointments.

The second Saturday of the month, Jude fell while spinning and playing in the grass on the soccer field. Mind you, it was the last five minutes of Avery and Livie’s game and we had been on the field for four hours! First urgent care assessment determined Jude had sprained his wrist. A phone call Monday morning following a radiologist’s review of the x-Ray, said nope, looks like a sprain. To the orthopedic urgent care we went! A buckle fracture in his right wrist and four weeks in a cast. 

We did hard things.

Tuesday, September 26th, Jude had surgery for a PEG tube placement. We’re very much still in the adjustment period, but we are all making progress towards healing. And I do mean all of us ❤️

The guidance counselor and Jude made cross necklaces for every family member to where as a show of support and togetherness.

In the Shadow of the Almighty

He who dwells in the shelter of the Most High
Will abide in the shadow of the Almighty.
~Psalm 91:1

I have a handful of petty fears in this life: roly polys, driving to new places, not being in control of my facial expressions. Then there are the genuine fears: David dying, financial ruin, watching another child die.

Jude showed signs of slow growth from the start; officially being diagnosed as failure to thrive (FTT) at his 2 month check up. The intensity only escalated from there. There were tests, specialists, diagnoses, weight checks, visits to dietitian’s, years of feeding therapy, supplements, and formula. Repeat through year one, year two, year three, year four, year five, year six. There was a brief period where Jude climbed to the 50th percentile, frequent dips to below the 5th percentile and an overall inclination towards the 30th percentile over the last six years of growth charts.

Jude was never going to be a big kid. Fun fact, Jude was actually my smallest newborn by over 1/2 a pound. My little boy.

But even little boys grow with maximum effort. So we did all the things and towed the line for years.

In the past, Jude would go on what I referred to as food/drinking strikes. Those would usually last about 3 weeks and then he’d get over his stubborn self, resume his targeted intake and I could breath again. This year, Jude began consistently resisting drinking his elemental formula. Since last October, we’ve been keeping closer-than-usual tabs on Jude’s weight as he failed to gain weight. The GI and registered dietician implemented new efforts; we started Jude back on an appetite stimulant, we gave him time, etc. There was no rushing to intervene, just watchful waiting (aka, the most obnoxious phrase in all of the medical world).

Eventually, you either make progress or you don’t.

Jude didn’t until we added in the appetite stimulant, then he had a sudden boost in weight!

And yet, there was no dancing and rejoicing over here. We know enough now to know what’s temporary and what’s not. Those stimulants are meant to be a short term boost. We’ve done this more than once. twice. three times.

Enter school.

First grade began in beast mode. To make a very complicated story as short as possible, Jude requires more accommodations than his peers. We remedied this with adjustments to Jude’s IEP, data collection and a plan to meet again in 8 weeks.

What I’m getting at here is, there’s a new battle and it’s name is Education.

Feeding/eating/maintaining adequate nutrition shouldn’t be a battle.
Learning shouldn’t be a battle.

When you are up against both, it’s time to choose sides.

Ultimately, David and I came to the conclusion that it isn’t fair to Jude to have every aspect of his life forced on him.

Pay attention Jude.
Drink, Jude.
Fifteen more minutes of reading, Jude.
Three more bites, Jude.

Raising Jude quickly became a series of commands.

We decided to pick sides. Feeding has a “forced” solution, education doesn’t.

I cried in the GI’s office as we sealed the decision to finally do the g-tube surgery. The GI was amazing, and kind, and supportive and not at all judgmental. She used the word “inevitable” and after five long years of resistance, I couldn’t argue. I didn’t want to argue.

Since that first FTT diagnosis six years ago, the feeding tube shadow has been my constant companion. Lingering like a threat.

A threat of all my parenting fears repeating.

Watch a child die once and see if it doesn’t scare you.
Ask that same mother to hear the same words and see if it doesn’t inspire nightmares.
Feeding tubes save lives every single day.
But one time it didn’t.
And I can’t forget that.

This time though, is not last time.
This time is Jude, not Jake.
This time it can be temporary.
This time it’s not everything, it’s just one thing.

One thing to overcome that will lead to hundreds of victories for Jude.

So now it’s done.

The surgery was Tuesday. The first thirty minutes in recovery pretty much scarred me for life. The last three-ish days of Jude angry, hurting, and fighting mad have about done me in.

the moment I became brave, just for a second

I legit understand why mothers eat their young. It’s been hard. Jude trusts no one and I can’t even fault him for that. When your own body constantly betrays you and your parents are in your face pushing all the time, how do you feel safe, loved, protected?

You abide in the shadow of the Almighty.

Because we aren’t winning this battle solo friends. Jude’s not fighting alone. I am not fighting alone. David is not fighting alone.

We will conquer the fears, the present pain and we will emerge victorious from this one hard thing. This one hard thing that brings the ghosts of a thousand hard things with it, will not defeat us.

Even if I’m crying angry tears at midnight because Jude is also crying angry tears at midnight.

It won’t always be midnight.

First at home feeding – 9 hours a night

 

 

August Reads

1. Don’t You Cry by Mary Kubica         Easily my favorite fiction read of the year so far. Holy smokes, the suspense, the writing, the characters genuine and true; amazing! The story is thrilling (although not entirely unsuspecting). What impressed me most was the authenticity of the characters. One is smart, another less so and you find yourself really questioning the lack of making connections until you remember the character is suppose to be dim. Cleverly written, suspenseful and not cheapened with language or sex; a rare find! 
2. The Beautiful MysteryChief Inspector Armand Gamache Series, Book 8 by Louise Penny 
3. Notorious RBG, The Life and Times of Ruth Bader Ginsburg by Irin Carmine & Shana Knizhnik                                  There’s no denying that I learned so much from this book. I honestly enjoyed it. 
4. The Hangman (novella) by Louise Penny 
5. I’m Glad About You by Theresa Rebeck                                                                          Highly disappointing read with no resolution.
6. Small Great Things by Jodi Picoult      This book! Ahhhh! All the feelings. Racially charged novel that made me feel angry, sad, heartbroken and about 178 other emotions. Read it. 

I’ve got about 25% left to read in What Falls From The Sky by Esther Emery. Three other books in progress…it super annoys me when I can’t finish a book within the tidiness of a month ending 😂