Our Safe Place

I was up in the night helping take care of our sweet youngest. But she was zonked, and I was still awake. It was in those moments, in the stillness of the night, that I heard our other daughter wimpering. The tiniest of cries, not fully awake, but obviously disturbed by something in her sleep.

I walked out to her bed. She lay tenderly cuddled up in her princess blanket, pulled up past her shoulders. I laid my hand on her, and she slowly opened her eyes to see me.

"What's up, Hun?"

"I had a bad dream," came the soft cry from her sleepy voice.

"What did you dream about?"

"Scary monsters."

"Ah, but you know the monsters aren't real. You're ok." I rubbed her back. The corners of her lips pulled down in a frown.

"Want to come into Mama's room and curl up in our chair for the rest of the night?"

Immediately she popped up and began gathering her things. And by things, I mean her pillow, taggy, blanket, and little toy kitty.

She nested up on our worn but loved rocking chair and fell fast asleep.

I couldn't help but think that this is the way God is with us. When we have scary dreams, be them in our sleep, or real life things of this world that keep us up worrying at night, He is there. He comes along beside our weary eyes, lays His hand upon us, and lovingly allows us to curl up in His lap and share our fears and doubts, like shadows lingering in the night. He doesn't leave us to pull the blankets over our head to protect us from the scary monsters and deal with it on our own. He lets us know He's there.

He pulls us into His presence.

He lets us know we're safe now.

"But You, O Lord, are a shield about me,
my glory, and the lifter of my head.
I cried aloud to the Lord,
and He answered me from His holy hill.
I lay down and slept;
I woke again, for the Lord sustained me."
Psalm 3:3-5

We can recall the times that God has cared for us, sheltered us, protected us, and rest knowing God is faithful. That whatever it may be weighing on our tired hearts, that we can even sleep in peace knowing He will sustain us.

This morning I told my daughter to go make her bed. I meant her bottom bunk, where a plethora of stuffed animals and a tangle of blankets was waiting to be straightened up and loved. I left the room and assumed she'd listened and obeyed this task. This afternoon I went upstairs to find that she'd made her bed, laid her blanket out perfectly, pillow in place, and her beloved taggy and kitty were tucked in under the blanket.

In the worn and loved rocking chair in our room.

She found her safe place. Her place of comfort, where she knows she'll be safe and protected when the night begins to come.

The Art of Quiet Time

The season of life we're in {hello littles!} makes finding time for myself for quiet and stillness fairly difficult, not to mention quiet time with the Lord. Last week, after a rather long night with a restless little one, my husband offered to swing by my favorite coffee shop and grab me a coffee to drop back off before work.

I did one better. I asked him if I could run out and grab it while he ate breakfast with the kiddos so that I could have a few moments of alone time before my long day. He agreed.

However there was a slight little glitch in the plans.

While I envisioned a quiet car, my mind finally clear enough to let the Lord in, or to have that alone time to listen to music and relax for a bit, my son had other plans. He quite efficiently raced past me, slipped on his shoes in record time, bolted out the door, opened the van door, shut the van door, and was in his seat with his belt on before my fingers touched the driver's side door.

Apparently he was going along. And let the record state that he was fully capable of getting ready and heading out the door quickly. We'll just keep that moment fresh in our minds for the next time we have trouble getting the troops out the door because they haven't put their shoes on yet or grumble that they can't get their seat belt on yet.

So there we were. Me, behind the wheel, and him, grinning from ear to ear in my rearview mirror. Seconds later, before I could put it in reverse, the hubs was at the door motioning for me to stop. It appeared that a little mini version of me was also tagging along now, having convinced her daddy through her tear soaked sobs that she deserved to go along for the ride as well.

So much for mommy time.

I announced to the kids that this was still mommy's quiet time, and that although they were all-aboard the coffee train, I was theoretically alone in the front seat. And then I blared some Rend Collective. They giggled and thought it was funny that they'd hijacked mommy's alone time. Ironically, about three blocks later, my son looked over at his sister and announced in a stern voice, "Please be quiet! I want some alone time!"

REALLY!? Do you understand the meaning of alone time!? Because you imposed on Mommy's!

Sigh. Breathe. It's all good. Hot, smooth coffee was mere minutes away.

I'm realizing more and more as my kiddos get older that quiet time is harder and harder to come by unless I make it a priority. I'm realizing that I need to actually listen to the prompting of the Spirit to go and read or pray or journal, and not just assume I'll have time later in my day if that moment feels like now. I'm learning the balance of not feeling guilty for Saturday morning coffee time out of the house, or other ways to find respite from the many demands of mommyhood. What I am still convicted and struggling and wrestling with is how to choose time with the Lord over other distractions, like movies, Facebook, and other things. While those are OK, I still know that I choose them over time with the Lord more often than not. But I'm learning to give myself grace in finding this balance. It's not going to happen overnight, but with consistency over time.

And to have grace with my kiddos when that mommy time sometimes gets interrupted with giggles and smiles and last minute adventures on the way to scones and caffeine.

On the way home from our little outing, the song "I Will Never Walk Alone" came on, and it seemed very fitting for my mommy world that day, with a slight bit of irony thrown in. The reminder that no matter what my day brings, the Lord is walking with me in it. He's granting me the delight and responsibility of discipling these littles, and He's granting me the wisdom, and truck loads of grace, to go about it. And for the ironic part, that someday I'll go to the bathroom without little feet following me in, or sneak the chocolate without them sniffing it from three rooms and a set of stairs away.

Oh. I should mention that the scones I let them have were espresso chocolate scones. Yep. Coffee scones. It's kind of my own fault they were bouncing all over the walls during school time, and making side comments like, "See, I told you we could freak Mommy out!" 

Restore

It's spring. The trees have been blooming, slowly opening their new buds to let the first touch of sunlight and warmth in. My Instagram feed is blowing up with images of beautiful trees, the hues of April coming to life before our eyes and our screens. 

I went for a walk last night, and took in the stillness of the fresh flowers, and I blew up my own Instagram account with flowergrams. I was able to capture the light through the leaves, each delicate petal and piece of the plant. 

 And I realized again that flowers don't open up their bloom before our eyes. It's a slow, steady revealing, much like constant renewing of our heart before the Lord.

Last week I had a no-so-great moment {evening, like hours plural} with the Lord wrestling with the why me / woe is me / how about a little help here pity party for one. While it's good to wrestle with the Lord on things, this was more like me forgetting every good thing He's done for me and me arguing with Him for what I think is best for me. Flashback to the Israelites wandering aimlessly in the desert. I was complaining about the manna. 

Not a great moment. 

Shortly after that I was reminded that nothing we have is guaranteed, and everything we have is a blessing because in this life, we actually deserve nothing. We are not to live in this spirit of entitlement, be it for our health, our situation, our housing, our finances...whatever the "plenty and want" situation is, the heart of the matter is the simple enduring fact that the Lord will provide what's best for us and in order to draw us closer to Him and for His glory.

I had to repent. I had to seek the Lord's forgiveness for the ugliness of the desires of my heart that are worldly, and in my case were filled with jealousy and discontent, and having taken my eyes off the cross and the bigger picture. I only saw our trials and afflictions. I wasn't seeing the good that has come and will continue to come from them. 

But in doing so, I was made new again. Joy was restored to my fading spirit of love for the Lord in this moment and the place He currently has me in. 

As I walked around our neighborhood last night, taking in deep breaths of the freshly cut grass, the scent of newly opened petals, the fear and trembling and panic of a baby serpent in my path, and the sight of spring all around, I was reminded that not only does the Lord draw us to repentance, but He gently restores our soul. 

In Psalm 51 we are encouraged to ask the Lord to, "Create in me a clean heart, O God, and renew a right spirit within me. Cast me not from Your presence, and take not Your Holy Spirit from me. Restore to me the joy of your salvation, and uphold me with a willing spirit." {Psalm 51:10-12} How beautiful that not only is God loving enough to show us the dark and ugly areas of our heart and He does not leave us there to wallow or sink, but gently lifts us out of that pit and renews our spirit back to Him. 

Psalm 32:8 reminds us that, "I will instruct you and teach you in the way you should go; I will counsel you with my eye upon you." We can call upon the Lord to restore us and lead us. As Christians, following the Lord does not mean we will lead a sinless life, but rather that we can come and confess to Him and ask for renewal within us. And God is good to provide. 

As I was heading home on my walk, I noticed the water steadily draining down the side of the road, running down the hill along my path. In the little stream were the leftovers of the pink petals that had bloomed recently on the trees. They were birthed to bring new life to the trees for spring, announcing with celebration the warm season to come, adorning each branch like a little garland of joy and delight. But in time, they faded and fell.  After they fell, the branches were not left barren and empty, void of the beauty that had just decorated its branches the weeks before, but was graced the green buds of new leaves. 

He restores.

He renews.

And He continues to give life again. 

How To Unwind: A Guide For Other Busy Moms

2:20pm Receive text from the hubs offering to take care of kiddos and cook supper, then release me into the wild metropolis to have a night to myself to do whatever I want. Smile and feel thankful. Continue racing around house to pack for upcoming appointments trip and on a give-meds-now timeline.

4:03pm Receive follow up text asking if I ever got first text, which I did but was too busy to respond. Confirm that this will indeed be the plan.

5:15pm Take first shower in...3? days. Glorious. On schedule. Woot!

5:16pm Child #2 interrupts shower because, "Daddy needs you RIGHT now!!"

5:22-5:33pm Meet with respiratory therapist in our home to help us finally understand an important little device my daughter needs for a breathing treatment.

5:45pm Clean parts to treatment while hubs starts supper. Look at clock. Do the math. Panic that my daylight for me time is waning.

6:02pm Decide I look ugh before going out, and while not trying to impress anyone, decide I also don't desire to scare anyone with these dark circles. Recently started wearing mascara. Decide I can be one of those women who just dab on mascara and rush out the door. Poke eyeball with mascara. Blink fifty times to make sure I can see. Look in mirror. All over eye. Oops. Find make-up remover and remove said particles of blackness. Scrub hands endlessly because product has aloe, which cannot touch child #3. End up doing make-up after all. Time is wasting away.

6:12pm Walk out the door blissfully while child #2 screams bloody murder because she stepped on something invisible. Same child screamed to the heavens twenty minutes earlier because a FLY flew past her. A fly, folks. Those things are brutal.

6:15pm Drive past movie theatre. Consider going to move alone. Picture spraying bottle of disinfectant in seat first. Decide germs aren't worth going to a movie alone.

6:25-7:01pm Wander around Targer. My happy place. Consider shoes for my youngest, but nothing in price range meets criteria. Compare three brands of diapers that don't contain aloe. Actually whip out calculator to determine best purchase. Decide to just get the cheapest.

7:08-7:18pm Drive in circles around parking area. Get bitter when someone takes my spot. Keep thoughts bottled inside.

7:20pm Enter favorite coffee establishment. Look around and take inventory. I am officially the oldest here. Cringe. Look cool. Be normal. Order decaf. My cover is blown.

7:23pm Find seat. See dude who stole my spot. He won't make eye contact. He knows what he did. 

7:25pm Finally sit down for the first time all day. Spill coffee on the table. Look cool. Act normal. 

**I don't get out much. 

...Time to read, write, and just breathe. 

7:44pm Friend emails that I shared our daughter's Facebook page update on the same page instead of our personal page, then says, "Giggle. Tired much?" 

YES. 

When God Made You

"Mommy, how did we come to be?"

"Well God made you, and God made me.
He made the stars
and He made the moon
and He made me
and He made you.
He made us each as He wanted us to be,
When God made you, and God made me."

"But Mommy, why is my sister different than me?"

"Well your sister is still like you and me,
created fearfully and wonderfully."

"But why is her lip and nose not right?"

"It's just how He made her to breathe at night.
And even though right now she can't speak
she can still use her lips
to kiss your cheek."

"But Mommy, why does her neck have that tube?"

"Because it helps her to breathe more like me and you."

"But Mommy, why does she not eat like me?"

"She does eat like you, just differently.
Like you, her food goes in her tummy
through a tube
but it's quite yummy!"

"But Mommy, why can't she stand?"

"Because she's still learning how,
come hold her hand
and help her to know
that you're right there
so that when she can stand
you can go anywhere."

"But Mommy, why is she so small?"

"Well that's just how God makes us all,
some tall and some small
and some without tubes
and some of us with,
but each of us all are a special gift
formed in His image,
each day in His book.
She's really not that different
if you take a closer look.
Because God made you and God made me.
He made the stars
and He made the moon
and He made me
and He made you.
He made us each as He wanted us to be,
when God made you and God made me."

Struggling Well

I drink a lot of coffee. It’s my jam. It’s what helps me push through the morning so that I can rock 2 PM like a champ.

My daughter told a complete stranger in the elevator that, “My mama drinks so much coffee or she can’t function.” No truer words were spoken.

When friends offer a coffee delivery, I don’t do the polite thing and say, “Oh that’s sweet, but I’m OK. Thank you for thinking of me though.” Nope. I text back, “Grande caramel latte with whip, extra shot of espresso!!” And then I know with a sense of security that my sanity will arrive in a little cup in approximately fifteen minutes.

And then my friend texts, “I’m sorry but I’m running late. I’ll be there in forty minutes!”

And I respond, “No worries. You’re good! See you in forty minutes!”

And then I secretly make a small pot and take a few sips from the homemade Coffeemate-infused concoction while I wait because I’m impatient and the struggle gets real when I don’t have my coffee. If I don’t have my morning coffee then I feel like the rhythm of the day is all messed up and off course. Even my little tribe has caught on to the fact that mama doesn’t function well without her caffeine.

This same scene plays out in my life. There are days that the struggle is too much, and I don’t struggle well because I take my focus off the cross. Where I have to honestly confess to myself as my head hits the pillow that the way I handled things was not pretty, but instead very messy.

We’re going through a crazy season and hard trial in our family these days. And the days and months are turning into years. But it’s a good trial, if there ever was such a thing. We’re thankful that God is sustaining us through this, and in this process He is revealing areas of our heart that need Him more deeply, and then cultivating a sweeter relationship with Him as a result.  

It hasn’t always been that perspective though. I have clung greatly to and worn the pages of my bible where Isaiah writes of the Lord,  

“For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.” {Isaiah 55:8-9 ESV}

I’ve had to learn slowly that what I once thought was best for me might not match up with what the Lord thinks is best for me. I have gracefully, and not so gracefully, learned how to soak in those words and to trust in the One that loves me more than I could ever love myself, and He loves me enough to know what’s best for me.  

Because God knows the struggle is real when I’ve taken my eyes off Jesus.

To struggle well is a phrase that I stumbled upon in Lauren Chandler’s book Steadfast Love whose meaning has already nestled itself up within my being and determined itself to be a desire during this season.

These words remind me that I can rend my heart to God, and He will help me to remain faithful to Him, just as He remains steadfast in His love for me through any trial of this life. 

”For as the rain and the snow come down from heaven and do not return there but water the earth, making it bring forth and sprout, giving seed to the sower and bread to the eater; so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it.” {Isaiah 55:10-11 ESV}

God’s word will not return void.

There is a purpose in this and He is up to something far more beautiful than we could ever imagine.

And we can all sip our morning coffee and rest in the comfort of this promise. 

Happily Home

It's been some time since we last updated. The most recent blog post is the bleak one where we discussed all of the what ifs that could potentially come considering the condition Chloe was facing with her kidney levels and fluid balance back in February.

But God...

There are moments scattered all throughout the bible where the phrase, "But God," comes in, meaning our circumstances might be X, but God can intervene and change plans.

Chloe took a turn a couple weeks after that last post.

A turn for the better!

We tried a drug called Enalapril to help her kidney. This is a very risky little move because it had potential of not nice side effects, like tanking her blood pressure, which it did. Thankfully they gave Epinephrine to bring her bp back up, and then a few days later we got her port fixed. While we had to give her port access, it ended up quickly in her favor. She had trouble shaking off anesthesia and needed not only Epinephrine again, but also Norepinephrine. The turn for the better is that oddly enough, her kidney loved the norepi and decided to start playing nice again. Fluid starting coming off her better. Kidney numbers started doing better. We did have to put her on a hospital vent with Nitric Oxide to help bring her sats up. Normally she's on a heart med called Sildenafil to help with blood pressure and sats but we couldn't give this med because of the blood pressure issues. When we weaned off the nitric, we all just assumed she'd go back on her Sildenafil that she's been on since last June for her heart to relax its pumping. HOWEVER, Chloe is Chloe. And she kept her sats up and blood pressure good without the meds.

She is currently not on any heart medications. She is on a few types of diuretics for fluid between her heart and kidney, but is no longer needing the most important medicine she used to receive.

Praise the Lord!

And all the doctors shake their heads!

So she kept doing better. She kept improving. She weaned back off the nitric and onto her home vent. Her sats stayed up. She got to her baseline weight. She met and exceeded all of the "goals" we set for her in that care conference.

There was a scary hiccup in there to be praying about. We requested a bedside eye exam to check that off our list instead of needing a yearly eye appointment and exposing her to yet more germs at another clinic. The eye docs requested a head ultrasound. They found what appeared to be swollen ventricles. A) Damage to brain over time due to prolonged hospital stays, surgeries, low sats, codes, etc. B) Blockage somewhere, most likely needing a shunt which we weren't sure is a possibility for her. We tentatively scheduled a CT. But God had this. He was already ahead of us. The next PICU doc remembered she's a Glenn baby, and that heart surgery makes pressures change throughout the body, especially in the head. Her fontanel is always swollen, but it is not firm/hard, so he did not suspect a blockage. And she was acting like herself-not in pain or out of sorts. She's still gaining new strength in skills and development that she'd lost over time, and is starting to learn new skills, like reaching for things or grabbing things with both hands at same time. The PICU doctor suggested that while most Glenn patients have the horrible pressure changes and headaches from it, that it usually resolves within a few weeks. In Chloe's case, #becauseitschloe, we all know she takes much longer to adjust to changes and because she's on the vent, the doctor believes since her fontanel is still soft that it's still just pressures changing and something we can monitor at home and follow up later if needed. Something that became a scary, possibly end-all/stop point if a shunt wouldn't work suddenly became such a relief. So we watch and monitor.

And we brought her home last Tuesday. And she's been a happy baby ever since. 

We'll still be having a bunch of upcoming appointments, but for the most part, we're home, she's growing, she's thriving, she's cute. And we're adjusting back into our normal routines, school, nursing help, work, and all that goes with this. She gets her first physical/occupational therapy at-home session this week for the first time since after Christmas!! For now we're focusing on watching her weight/fluid balance, letting her grow and thrive, and just soak in each new day.

And a HUGE shout-out to Nurse C. and Nurse B. who primaried her for days and nights and made her a happy little creature in so, so many ways. We're so thankful for your hearts for our girl, for your prayers, and for the many ways you guys went above and beyond to love on our family while giving Chloe excellent care.

**Praise: For our new home health nurse who has been a Godsend!!
**Praise: For the fact that for 4 of the 5 nights we've been home, Chloe has been sleeping ALL night!! She's only needing suctioned a few times throughout the night or diapers, but is actually sleeping all through the night again and allowing us sleep as well. 

 

Bonus: Head over to Our Chloe Elizabeth on FB or to jodie_and_alan on Instagram to see video of her rocking it out to some music and her coming home video of smiles in the car!

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Tomorrow, March 22, is 3/22 (3 of chromosome 22) and we celebrate Mosaic Trisomy 22 peeps around the world. 

Show your love and support by wearing 

GREY AND TEAL, Chloe's trisomy colors.