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

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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! 🙂 )

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)

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!

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)

I’m writing to ask for prayer and to let you know what is going on. It’s also a feeble attempt to get this crushing weight off my shoulders.

We went for the follow up appointment with the cardiologist yesterday, as I had mentioned. Both William and I were optimistic about the appointment. We were actually excited to be told how well sweet Nora is doing – come back in a few months, or so we thought.

As I understand it – the way that Nora’s little heart is operating is doing harm to her lungs. She will need surgery sooner than later to prevent any irreversible damage to her lungs- if that hasn’t been done already. She may or may not be a candidate for heart surgery. In order to determine if she is, she will need to undergo extensive testing on her other vital organs. If there is anything else not functioning properly, she is not a candidate for heart surgery. Even if she is a candidate, and she does get her VSD and ASDs repaired, it’s no guarantee that her blood flow will reroute the way it’s supposed to go. The lung damage will continue. She will never be eligible for a lung transplant. We are supposed to go back in a couple of weeks for another appointment to see if further testing is even an option.

I feel like I am suspended in the air by a flimsy fraying thread over a sharpened sword. The thread threatens to snap any second. It’s so against everything I know to be true about our amazing God. He’s not just going reach down with a pair of scissors and cut the thread, or give it a quick flick. His hand is right beneath us ready to catch us and hold us closely to Him. I KNOW that, I TRUST that and I BELIEVE that, but His merciful hand slips out of view here and there. All I see is that sword and it scares the hell out of me.

I can’t even begin to express the amount of love that I have for this precious baby that stares back at me in wonderment with her big blue eyes. She coos at me, having no idea there is anything wrong with her. It rips me to shreds to imagine life without her.

Here are pictures I had taken yesterday which I had hoped to use in a typical cute, light hearted post about how fabulous the appointment went. They’re still cute even through my tears.

I just made tinkle all over my Mom! You'd think she'd learn not to change me on her lap anymore!

Haha, Mommy!

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From a text I received this morning:

“He who trusts in the Lord, mercy shall surround him.” (Psalm 32:10)

At times, God required a season of waiting before He sends His blessing. Then trust becomes your greatest asset. If we don’t trust God w/our need, we will cry out in fear and panic. At one point during a storm on the Sea of Galilee, the disciples thought they would perish. Jesus commanded the wind and waves to be still. He taught the men how to trust Him even in the most tempestuous of circumstances, and He IS teaching you to watch and wait for His outstretched arms.

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I need to keep reading that over and over and over today. Please, God, have mercy on us!!!!

Sorry I wasn’t able to get this post up last night. My eyelids won the battle!

Here’s Nora:

Things were relatively quiet for much of the morning! I love to cuddle with my Mom.

The big kids slept until about 11! They must have been really tired!

I was excited to get a bath in the big tub.

Then later on in the afternoon, I was 'Nora Unplugged'. I kept my saturation levels up on my own for a good while!

How ' bout THAT? Eh???

Eyyy!! What's going on back there?? I better not get clocked in the head with anything!! Settle down back there!!!

Things can get really crazy around here when the big kids are awake! I can’t wait to join them in their shenanigans!

In the mean time I'll gladly accept loves and cuddles from my Daddy and Mommy.

I go to visit the cardiologist tomorrow afternoon! Please pray that Mommy and Daddy will be given some more insight on my little heart and lungs, and that I’ll get a good report! Thank you so very, very much! I’ll be sure to keep you posted!

Love,
Nora

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Nora’s appointment is TODAY (June 28th). As she said, we’ll keep you posted!

Heal me, Lord , and I will be healed;
save me and I will be saved,
for you are the one I praise.
(Jeremiah 17:14 NIV)

Wha? *smack smack smack* mmeh? Oh! Good morning... *yawn*

Can I have my milkies first? I'm like a zzzommbiiee without my milkies.

Okay… Um, hi? It’s me. Nora. I think I’m ready to start the day now! I wasn’t particularly happy this morning. I may or may not have swallowed a LOT of air while I was devouring my milkies. That pretty much may or may not hurt my belly and may or may not make me very, very angry. Mommy had the good sense to take me on a little walk this morning.

How's this for a beautiful day? It was 71º at this point. Perfect!

We only walked about a mile today.

Daddy left for Texas Saturday morning. Mommy got a text that he was on his way home with Gavin and Greta. They were at a layover in Atlanta, I think?

Travelling looks like lots of fun!

Mommy and I had to stay close to home so we could leave to pick them up at the airport when they got in.

Around 1:00 we got the call and headed out. I needed loves and kisses while we waited in the cell phone lot. Mommy had that dang Baby Einstein wailing again. I don’t particularly care for her taste in music.

So now the rest of the family is home and things are back to being loud again! As my shirt says today – I AM “Daddy’s Sweetie”, but I sure the heck missed the heck out of my sister!!!!!!

Now I can rest easy. In my turtle wrap from Aunt Sarah. {Oh, and… HAPPY BIRTHDAY AUNT SARAH!!!!}

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Thank you, Nora! Yes, she was a tad bit gassy this morning and wanted nothin to do with nothin!!!! I hurried up and got dressed so we could get outside into the perfect weather that was going on out there. Nora did much better once she was in her stroller. As we were walking along, dodging sprinklers, I noticed a big bumble bee that came to hover over Nora for a few seconds as if though he were checking her out. I recalled how it was once surmised that bumble bees ought not be capable of flight based on supposed laws of aerodynamics. Their wings “should” be larger. Their bodies “should” be smaller. This theory of uncertain origins has since been debunked, but fortunately the bumble bee never knew the theory existed in the first place. (There were never any bumble bees on long hikes talking about how they were told they can’t fly, so they’d better not even try.) At one point in time someone(s) determined that babies born with chromosomal “defects” shouldn’t be able to do a lot of things, but they do anyway. Someone(s) concluded that babies like Nora with trisomy 18 are “incompatible with life” thereby implying that they’re not even worthy of being given a CHANCE. Unlike the bumble bee, we all decided to let someone(s) theoretical guesswork become the widely accepted practice. What importance is this life if it’s just going to die anyway… and *snuff*. Thereby ending a whole world of what “could have been”. I suppose it is indeed hard to be compatible with life when you aren’t even given a chance at it. (?)

I watched as the bumble bee took off and disappeared into the cerulean sky. It seemed to be pretty capable of flight to me!

Jesus replied, “What is impossible with man is possible with God.” (Luke 18:27 NIV)