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)

It was an extraordinarily hard day today for no other reason than I allowed myself to get caught up in my limited perspective which is saturated with fear and worry. I went to bed feeling balanced and grounded. I enjoyed a restful night’s sleep (thank you, Kate C.) yet awoke feeling like I had stepped off the edge into a rapid free fall.

This is where I really need to stay on guard and recognize evil forces for what they are – a determined attempt to shatter me. While talking on the phone this morning with my dear friend Tonya I was reminded of so much I felt like I already knew, but clearly needed reminding! It turns out that it’s the times such as these that scripture REALLY comes in handy. How truly important it is to stay familiar with it – to read it, study it, meditate on it, memorize it, and PRACTICE it!! When you can throw a memorized verse from scripture out in your defense, that gives you great power over evil.

I also spoke with James Mummert this afternoon. There he was in all of his mere 24 years offering a much-older-(not necessarily wiser)-me such wisdom and spiritual insight; despite having just suffered their own grievous loss. He suggested that Satan is especially out to get us. As authors of blogs that have drawn in thousands of people we need to be particularly on guard. There are evil entities that can’t stand the fact that we are inspiring and blessing others by sharing our stories. Satan would love nothing more than for us to succumb to our circumstances instead of allowing God to use them for his glory. We have to recognize it for what it is and arm ourselves against it. We need to remember that good ALWAYS triumphs over evil and to stay strong in Christ!

In a state of desperation this morning I “threw myself down on Facebook’s floor” in front of the 2000+ members of the Praying for Nora group. Knowing the power of prayer, I cast aside any pride or desire for privacy. Yes, I was falling apart. But what better way to rally the troops than through social networking? Prayer was my only hope here. By early evening I felt the aching of fear and worry start to melt away. Thank you for lifting me up in your prayers and literally saving me from the clutches of hell. I definitely felt your prayers!

This sweet little girl has no idea about anything. The only thing she knows about is love (and milkies).

(and kitties)

(and more kitties)

(and sisters)

(and sleeps) Night night!

Satan will not outsmart us. For we are familiar with his evil schemes. (2 Corinthians 2:11 NLT)

Do not be overcome by evil, but overcome evil with good. (Romans 12:21 NIV)

Today is my hubzbind’s birthday. Our joke in the family is that he gets to be boss again because we’re both the same age now. My birthday comes almost a whole month before his – so during that time I get to be the “boss” of the family because I’m older. (I think the kids actually started that). I spent 25 days on this earth as a tiny infant before Baby William (Billy) made his grand appearance. I like to speculate that our pre-birth little souls were best friends in heaven and conspired to meet again someday – thus the term “a match made in heaven”. Over the course of our lives we may have had some close encounters at Kings Island (local amusement park that we both frequented) during our teen years. You would think we would have HAD to have at least seen each other in passing on one of those hot carefree summer days. Who knew then that we were to someday be husband and wife — parents of 3 beautiful children together.

I’m so blessed to be your wife, William. You are an amazing husband and Daddy. Things aren’t so easy right now, but I have hope that there are brighter days ahead for us. Thank you for your strength and your comfort, your tender hugs and kisses that are always there exactly when I need them, your selflessness, your guidance, your optimism, your hard work, your generosity, your fairness, your honesty and your comic relief. It’s nice to be able to still laugh despite what we are going through. I can always count on you to cheer me up when I am sad, or to be the sound voice of reason when I am emotional. Funny that even though it’s YOUR birthday, I’m the one who feels like I’ve gotten the gift of you as my hubzbind. Happy Birthday, my sweet.

I found the one my heart loves.
(Song of Solomon 3:4 NIV)

Love, Your Wife

===========

We have some extremely tough decisions ahead of us as it pertains to Nora’s medical care. I’m humanly worried and terrified of making a wrong decision. I woke up this morning with the sharp blade of fear and uncertainty stabbing me between the lungs. In a desperate struggle to escape from it, I grabbed one of my devotionals. Plainly printed in black ink, I read the words “He will reach to the very limits of the universe to help you take the right road.” {DEEP SIGH!!!!!!!} And in that, I fully trust.

Thank You, God for speaking so clearly to me. You speak to me through Your written word, through the mouths of others, and through the beauty of Your creation. I find myself in constant conversation with You, eager for Your insight. Your voice, while not audible to me is loud and clear in so many other ways. Thank You!!!

Praise be to God, Almighty!

This is what the Lord says—
your Redeemer, the Holy One of Israel:
“I am the Lord your God,
who teaches you what is best for you,
who directs you in the way you should go. (Isaiah 48:17 NIV)

(and of COURSE I just discovered this to be the “Verse of the Day” on my YouVersion Bible app, AFTER I had just written about this because it was EXACTLY WHAT I NEEDED. He tells me once, He reminds me again and then He verifies it. Wow. Chills. I hear you, God! 🙂 )

Pictures from today…

Celebrating Daddy’s birthday at brunch this morning…

It was so nice to meet you today, Julie! Thank you for saying Hi!

Back at home…

“I am Life & Light. Soak in My Presence as you would soak in a warm bathtub. Let My Love surround you and seep in your soul – giving you new energy. And let all your worries swirl away,” -Jesus calling for Kids by Sarah Young.

Papa loves me.

Nana and Mommy love me!

Why in the world did I think I could
Only get to know You when my life was good?
When everything just falls in place
The easiest thing is to give You praise

Now it all seems upside down
‘Cause my whole world is caving in
But I feel You now more than I did then
How can I come to the end of me

And somehow still have all I need?
God, I want to know You more
Maybe this is how it starts
I find You when I fall apart

Blessed are the ones who understand
We got nothing to bring but empty hands, yeah
Nothing to hide and nothing to prove, yeah
Our heartbreak brings us back to You, oh

And it all seems upside down
‘Cause my whole world is caving in
But I feel You now more than I did then
How can I come to the end of me

And somehow still have all I need?
God,I want to know You more
Maybe this is how it starts I find
You when I fall apart, yeah

I don’t know how long this will last
I’m praying for the pain to pass
But maybe this is the best thing
That has ever happened to me

My whole world is caving in
But I feel You now more than I did then
How can I come to the end of me
And somehow still have all I need?

God,I want to know You more
Maybe this is how it starts
I find You when You will find me when

I fall apart
I fall apart

Nora on the ferry this morning with THE PRAYER TREE in the background (heart shaped tree up on the horizon)

I feel that gradually I’m getting back in to a better place, once again placing my trust fully in God. I am limited in my human capacity to what I can and can’t do. This relinguish of control I think I have on things is eerily reminiscent of when we received the diagnosis of trisomy 18. It took me about three days to dislodge the knife out of my heart and just TRUST that God had something great in store. AND DIDN’T HE???????

The fear and uncertainty continues to knock me down on occasion, but at least it is coming in waves now instead of being thrust on me like a fire hose. When these waves come, I literally cry out to Jesus. Usually I feel the pain of the uncertainty ebb away within a few minutes. I’m able to take a breath of air and cling onto my faith, ready for the next crash. I noticed my phone was accidentally connected with a number listed as “Telemarketer” during one of these such moments. I suppose they figured out that it was a bad time to call!! (?)

Morning cuddles (Daddy spied on us)

We had some special visitors today!

Nora reenacting her friend Stacy's picture with the same outfit in the same Nap Nanny! 😉

Daddy and Nora went for a long walk this evening!

Then they cried out to the Lord in their trouble,
and he delivered them from their distress.
(Psalm 107:6 NIV)

Your comments on here and on FB have been such an enormous comfort to us today. I’ve read and re-read each one of them. I love how God speaks to us through others. Thank you for your love and encouragement! It’s not been an easy day, but to know there are so many of you out there praying for us makes all the difference in the world.

Please keep my friend Dana in your prayers she delivers her sweet angel baby DaLove today. DaLove was also diagnosed with trisomy 18, yet her Mommy lovingly and hopefully chose to carry her as long as God would allow. Sometimes God’s plans are not our plans – I struggle with that myself. I pray that Dana and her family will be wrapped in peace that surpasses all understanding as they journey through this saddest of times.

Here are pictures of Nora from today.

And a cute one from the other morning that I found on William’s phone.

Goodnight!

The Lord is close to the brokenhearted
and saves those who are crushed in spirit. (Psalm 34:18 NIV)