By next Thursday we will have an answer as to whether or not Nora is eligible for heart surgery. There is a new issue with her heart that needs to remain stable and not worsen for our cardiologist to give the official green light. Another echo is scheduled for Thursday of next week.

While Nora was contentedly sipping on some milkies during her echo this morning I was frantically searching the room for some sort of God hug. No brightly colored 3 birds border in this room… But wait… Could it be??? My heart fluttered like I’d just received a note from a childhood friend, “HE LIKES YOU!!”

There on the wall, partially hidden by machines were my 3 birds. It was a series of 3 paintings by Mackenzie Thorpe in a single frame. Three chickens, but 3 birds no less!! I swallowed hard at the lump in my throat, trying to retain the tears welling up in my eyes. There is God again, who cares SOOO much about me. I surmise that God could just leave it up to us to be the ones to choose to believe in Him — or not. But that He would continue to send me these little hints of His great love for me is so, so incredible. How could I ever possibly doubt His presence?? Could it be that He’s been sending me love notes my whole life, but I was just too busy and wrapped up in my own little world to notice?

I’m so so relieved that today is OVER. I am actually in bed, I’m still breathing, and I fully trust in God’s plan here. I usually go to bed in a much better state of mind than when I wake up. In the mornings as soon as I open my eyes everything comes crashing at me like a bursted dam. My thoughts are reeling and I want to pull the covers up over my head. The whole day stands there in all of its formidableness, barely begun and I am already wishing it away. It takes the whole day to get my thoughts, my outlook, and perspective back into sync with God’s.

I saw a great quote today that said, “When a train goes through a tunnel and it gets dark, you don’t throw away the ticket and jump off. You sit still and trust the engineer!”

I can’t see an end to this tunnel we’re in right now, but I’ll be right here in my seat waiting for that glimmer of sunlight — ticket in hand, trusting my engineer.

For I know the plans I have for you,” declares the Lord , “plans to prosper you and not to harm you, plans to give you hope and a future.
(Jeremiah 29:11 NIV)

I’m so thankful when days like these come to an end! Today’s visit with the geneticist at Children’s sounded promising – although we won’t have any definitive answers until tomorrow’s visit. I’m afraid of getting my hopes up too high only to have the floor drop out from under us again. After an overview today, the geneticist did say that Nora is a superstar simply because she is able to eat on her own.

Yeah, I like the milkies, alright!

Being able to eat on her own greatly increases the probability of a successful surgery! She does not appear to be in any discomfort (other than gaseousness). She’s alert, strong, gaining weight, doing everything she’s supposed to. Okay, yes. My hopes are UP!! It would be so different if Nora were sickly, not gaining weight, generally struggling. In no way would we pursue prolonging any pain and suffering for our own selfish desires of having her around.

That’s the big news of today. I am physically and emotionally drained and have to prepare for another day of it bright and early tomorrow!

Here are pictures from today:

Goodnight and THANK YOU for the blanket of peace you’ve prayed upon us.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
(Philippians 4:6-7 NIV)

I am truly blessed by so many people who have stepped forth to make these days so much more bearable. You’ve entertained my big kids, enabling them to have a fun and memorable summer vacation. You’ve cuddled with my tiny kid so I could go out with my husband and/or my big kids. You’ve spent countless nights or even just one night with Nora so we could sleep knowing she’d be safe. You’ve taken amazing photographs that we’ll treasure forever. You’ve sent random cards and notes of kindness and encouragement just when we needed them most. You’ve cooked meals for us, brought us lunch and even breakfast. You’ve cleaned our house. You’ve brought in our garbage cans. You’ve sent or brought us flowers to liven up our home. You’ve sent beautiful, sweet, thoughtful, and adorable gifts. You’ve offered me advice with your medical background. You’ve set up fund raisers. You’ve participated in fundraisers. You’ve brought me coffee. You’ve brought me ice cream. You’ve made donations. You’ve let us know we’re not alone. You’ve showed up with a hug and a shoulder to cry on. You’ve called just to say hello, to make me laugh or to give me encouragement. You’ve organized and participated in a prayer ambush. You’ve followed along with us on our journey, even if silently. Best yet, you’ve PRAYED for us. To reflect on all of this brings tears to my eyes. I am so very thankful for each and every one of you!

A couple hours at the pool today was completely revitalizing. Not to mention my first time in a pool this summer!! Aaahh!!

I had so much fun playing “hiney biter” with G & G (me chasing them around in the water with my long hair over my face for extra added scary effect). It was beautiful to see them actually playing nicely with each other instead of teasing and fighting!! Thank you, Amanda C. for allowing that to happen!

Even when I do get out (which I’ve suddenly been able to do a lot of lately), I CAN’T WAIT to get back to my little cuddle bug!! She’s always got loves and cuddles for Mommy waiting! Mmmm. This evening just Nora and I went on a little walk.

I love to listen to birdies singing!

Mom? Dad? What's up with our lawn?? I think it might like to order some waters. Just sayin...

How good and pleasant it is
when God’s people live together in unity!
(Psalm 133:1 NIV)

Lazy, restful Sunday started out similarly to the other mornings over the past 8 days–anxiety filled. However, I didn’t have much time to lay in bed to nurture the fears and worries on account of having woken up late to relieve Kate R. & Emma of Night Time Nora Duty.

While the mornings are still a little difficult, I feel like I am in a much better place emotionally than I had been. THANK YOU for your prayers and your messages, emails, comments, posts reminding me of God’s goodness.

Post bath relaxations

He grants peace to your borders
and satisfies you with the finest of wheat.
(Psalm 147:14 NIV)

It was a long, busy, but mostly fun day today. Greta cuddled up next to me this morning and asked if we could have a Mommy / Greta day. Ordinarily I would have let laundry, and the act of relocating a thousands different objects from room to room take precedence — because it really needed to be done. But today my recently attained life skill of enjoying the things that REALLY matter kicked in and I left it all behind. Greta and I set out to IKEA! Swedish meatballs and some lingenberry sauce sounded delicious to both of us!

Also while we were there we picked up a few things. I needed an Expedit for the basement with a few Näsums, a pair of Lendas for the kitchen and family room. We also decided to get a Gosa Pinja for Daddy, a Spöka for Gavin (one for Greta too) and a Leka for Nora. I saw a beautiful Söder, but that will have to wait for another day. (Now you have to go to ikea.com to decode everything!)

It was another nice respite, but this time with my big girl. I loved laughing and being silly with her. She has the greatest sense of humor! I hate that I’ve been so busy that I’ve barely taken the time to really, really listen to her. Gavin too. They both love randomness. I can’t wait to see what they’re going to be like when they’re older, but need to remember to enjoy them in the here and now. They’re growing up so incredibly fast.

Meanwhile, back at home the mens were holding down the fort… and baby bottles.

Where's my muthr???

We did actually venture off to church this evening too! We met Nana & Papa there and they graciously whisked Nora off to the cry room (not that she was crying, but just incase) so William and I could sit out in the auditorium. Ordinarily I would have put her in the infant (or special needs) nursery as I did with the other kids, but if she were to get sick, even just a seemingly harmless little cold, it could potentially be very, very, very serious or even deadly. So we keep her with us, even just for peace of mind.

The message at church was a good one for me to hear. An analogy was made of God as a chef in a 5 star restaurant and us as the picky eaters. We want the meal, but we have all these conditions and expectations. The waiter is sent back to the kitchen with our order drastically altered from its original and intended state. “I’ll have the wood fired branzino, but I’d like that deep fried instead of wood fired… and a side of Cheez-Wiz too if you have that.” Imagine the insult to the chef!! Here is this marvelous creation that he worked on getting just right. It IS just right and our senses would be delighted if we’d even so much as bothered to accept it as it was! “WHAT,” yells the chef, “makes this person think they can do a better job back here in the kitchen!!!!???” —- Yes, I stand corrected, Lord!! Fix this as only you know how.

Trust in the Lord with all your heart and lean not on your own understanding.
(Proverbs 3:5)

That beautiful moment when you step outside after your hubzbind just informed you with tears in his eyes that over 40 people have come to pray over us, over Nora. A prayer ambush. Wow.

“Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.”
(Matthew 18:19-20 NIV)

Someone prayed that when we feel the cool breeze on us, let that be a reminder that God is right there with us. — There was not a cool breeze to be found on a stifling hot day like today, yet immediately after that was said I felt it. “Do you feel that?!” I whispered to William. “I do!!” he whispered back as a cool breeze ever so gently caressed the back of our necks and arms.

Thank you for that. That was incredible.

Thank you!

Yesterday was exceedingly hard. But leave it to William to race in as my knight in shining armor. Fortunately he has the flexibility to leave work on account of the top notch employees he has. Even if he didn’t have the flexibility, I know he would have done it anyway. He not only came home from work to comfort me, but he scheduled a massage for me and insisted that I take the afternoon to myself.

It wasn’t until I was driving out of the neighborhood that I realized how good it felt to actually be out of the house without any demands or expectations other than to be to Massage Envy at 12:30. I had completely forgotten that there was ever a time in my life that this was just “no big deal”, life as normal!! It was such a GIFT in that moment.

On into my blissful massage… There were moments during the massage that were absolutely, downright painful. Working the kinks and knots out of my neck and back muscles proved to be no easy task. As I drilled my fingernails into the palms of my hands trying to evenly disperse the pain, I was reminded about how God is busy trying to remove some big kinks and knots from my life as well. These times, especially right now, are excruciating. Slowly the massage therapist painfully worked out the troubled spots, eventually smoothed out the muscle, stretched it and then let it fall back into place feeling amazing afterward in its newly conditioned state. There were times that I almost requested less pressure, but I wanted to prove to myself that by choosing to endure the discomfort it was going to feel all the better afterward. And sure enough. I had been so used to my muscles being in a tangled knotted mess that I didn’t even realize how uncomfortable they were until they were removed. GONE. Through Nora, and all of the challenges we are presently faced with, I recognize the areas of my life that God has been furiously kneading on. My larger muscles of patience, pride, trust, and also the smaller ones of kindness, peacefulness and self-control. As far as I was concerned, everything was just fine in my life. I didn’t need any kind of spiritual massage – I had everything worked out just fine!! Or did I? There are these moments, especially throughout this past week that have been horribly oppressive and painful. However, I know and trust that someday (hopefully soon, God???) I will feel completely refreshed and brand new. I will be graciously and mercifully rid of the “knots and kinks” that might have ultimately seized up and stopped functioning altogether.

After my massage I decided to actually take advantage of the fact that my husband had given me the afternoon to myself instead of rushing back home. My first stop was to the airport runway viewing area.

There are the days, such as yesterday that I certainly wouldn’t mind packing up and leaving for somewhere beautiful — but it’s actually enough to simply sit there and watch the big jets take off into the sky… Figuratively I will purchase boarding passes for my sorrows and troubles so I can sit there and watch them disappear into the clouds. There’s always been something strangely therapeutic about that parking lot. But, after sitting there for about 20 minutes or so without seeing any runway activity what so ever I wondered if perhaps the Greater Cincinnati / Northern Kentucky International Airport had become Hebron Neighborhood Air Depot. (?) Not much going on there anymore, it seems.

My next stop was to Skyline for a cheese coney and then to a park along the Ohio River to enjoy it. It could have been a Skyline commercial… {“When ever you’re feeling scared and tired, it’s Skyline time…”} …Or maybe not. With the heat index on into the triple digits, it was no wonder that I was completely and delightfully by myself. I found a relatively comfortable park bench that overlooked the river where I could sit in peace without anyone staring and wondering what my problem was and debating whether they should call the police. {stray thought: I imagine that if any authorities were to ask to see my ID I would promptly be accused of providing falsified identification. The cheerful, neatly dressed girl with careful attention to her makeup and very recent visit to the salon in my license picture does NOT match the frumpy, bedraggled specimen of fatigue that I have become. Isn’t it usually the other way around?}

So there I sat by myself (in all my frumpiness). “Be still, and know that I am God.” (Psalm 46:10) The sound and sights of the birds (even a kingfisher and a couple of blue herons!), the gentle wash of waves along the shoreline, the sound of passing boats, even the hot breeze were so soothing and respiteful. It couldn’t have been more comforting than if I’d had my head in God’s lap while he stroked my hair away from my face and behind my ear, just like my Mom used to do when I was little.

Thank you for giving me that afternoon, William. You have no idea how good that felt.

Today we went for the first of many tests on Nora to determine if there are any other areas that we need to be concerned about. She had an ultrasound of her stomach and kidneys while she enjoyed a fresh order of milkies.

It was all no big deal until she was asked to lay on her belly. She would have rather not.

There were no awkward moments of silence, or furrowed brows, as in previous prenatal ultrasounds. The tech did say that everything looked good — but would she say otherwise? We will hear the definite results at our consultation next Thursday. So while everything seems to have gone well, we really don’t know for sure until then. (Deeeeeeeeeeeep breath!!!!!!!!!!)

And of course the 3 birds showed up again. This is a totally different location than where I saw them the first time during her swallow study at the main campus.

Can He say it any louder???? “I AM WITH YOU!!!!!!!!!!!!!!!!!!! I’VE GOT THIS!!!!! IT’S GOING TO BE OKAY!!!!!!!!!!”

Thank you, again for lifting us up in prayer. I hope we are all making quite a ruckus down here!!

But he said to me,”My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
(2 Corinthians 12:9)

I wish I had the time and energy to write down everything I want to say — but it is late and I am past the point of exhaustion.

Nora was Fussy Cakes today, but she’s still the dearest, sweetest little thing in town.

Nora enjoying cuddles with Nana today

“Let us hold unswervingly to the hope we profess, for he who promised is faithful.”
(Hebrews 10:23 NIV)

More tomorrow. Good night!

I read this poem on a blog that was shared with me today and thought I’d share. I particularly like the last italicized part…

Desiderata

Go placidly amidst the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.

Avoid loud and aggressive persons, they are vexatious to the spirit. If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.

Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul. With all its shams, drudgery, and broken dreams, it is still a beautiful world. Be cheerful.

Strive to be happy.

-Max Ehrmann

That is a great reminder / bit of advice.

I had a much, much better day today. I think that was largely in part because my hubzbind was home here today with me. His way of wording things and his viewpoints are such great solace to me. I’m so comforted in knowing that what ever we are faced with that we will face it together in Christ.

This evening we ventured out to Independence Day festivities with my extended family. I enjoyed the opportunity to get out, but this was just one such instance that I started wishing so badly that things were just “normal” — the comfortable normal as I once knew it. But God is always quick to remind me that none of this is about ME. There is something much greater going on here. Nora could never have fulfilled her incredible life purpose as just a “normal” baby. So while things might be physically and emotionally uncomfortable right now, they’re not going to be like this forever. What will be forever are the lives that Nora has touched and changed just by simply being Nora. It’s not completely clear to me right now, but I do believe the universe is unfolding as it should.

Pretty little firecracker - Thanks for the ADORABLE outfit, Jessica and Ashley!!

I'm a little bit fuzzy on things.

Happy Fourth of July!

Biteable.

You need to persevere so that when you have done the will of God, you will receive what he has promised. (Hebrews 10:36 NIV)

Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. (James 1:12 NIV)