I couldn’t wait for Friday to be over simply because I knew that by the end of the day Nora’s surgery would be over. Looking back I see how perfectly it unfolded and all of the ways God showed his unmistakeable presence.

As we trekked down our well-manicured decision path we prayed. At the end of the line in the OR foyer I held Nora closely. I wrapped my arms around her in her tiny peach hospital gown and sniffed her fiercely. “You be a good girl,” I softly whispered in her ear, my lips never wanting to leave her skin. Dr. E. promised she was in excellent hands and they would be very careful with her. One last sniff, one last kiss, I handed her over. I heard the nurses talking sweetly and singing to her as we were gently ushered out of the room. “Our Father who art in heaven… Our Father who art in heaven… Our Father who art in heaven,” I could hardly get past the first verse of the prayer. My mind was spinning, my hands tightly clenched under my chin. Underneath the surface of these crashing waves, however the water was calm.

I remain confident of this: I will see the goodness of the Lord in the land of the living.
(Psalm 27:13 NIV)

God was cheering me on through the artwork on the walls, through the kindness of a stranger’s smile, by crossing my path with others who have been praying for us, through my hubzind’s tender words and touches. God’s discernible presence made it impossible not to trust Him. God doesn’t send me “proof” and signs of His presence so that I will believe in Him. In all likelihood, the evidence has ALWAYS been there. I was never able to recognize it because I was never as receptive to it as I am now. If a radio isn’t tuned in properly to a station, there is static. That doesn’t mean that the radio waves aren’t out there! Once I adjusted my dial (my thoughts/perspective) the music (God’s presence) was crisp and clear. I wasted so many years listening to meaningless static!

Yet the Lord longs to be gracious to you; therefore he will rise up to show you compassion. For the Lord is a God of justice. Blessed are all who wait for him!
(Isaiah 30:18 NIV)

Ordinarily Nora would not have gone to CICU if it were known that it was just the tubes they would be doing. But because of the possibility of the adenoid removal it was already arranged for her to go there. Within the expanse of the whole entire hospital, God couldn’t have made it any easier for Robin and I to meet by enabling this possibility and putting us 4 doors down from each other! (See previous post if you don’t know who Robin is ☺). This could be no coincidence!!!

Around 5:30 they started putting the wheels in motion to have Nora discharged. I can’t say that I wish we could have stayed longer, but I do wish I could have spent more time with Robin! Before long, papers were signed and a member from transport came up to escort us out. On our way out I asked if we could go past Ivy’s room. I couldn’t see if Robin was in the room through the glare of the glass, but I could see Ivy. Tears welled up in my eyes as I looked upon that precious baby girl. She waved her little arm in the air, maybe waving to her friend Nora!

This is a picture of sweet Ivy from her Mommy’s FB page which she said I could share:

I would be so grateful if you could please continue to pray for this sweet little lady! Her heart surgery is set tentatively for the week of September 29th. Please pray that there are no more obstacles and that this surgery will be a beautiful success!

The staff in the CICU said goodbye to us as we made our way through the security doors. Their goodbyes were more like a question than a farewell. The person transporting us out explained that NO ONE leaves CICU that quickly, “When you go there, you’re probably going to be there for awhile.” We felt even more abundantly blessed, yet so sorrowful for the little ones and their families still there. I pray that even though their lives are interrupted by the uncertainty of tomorrow, that they are comforted and reassured by the absolute certainty of God’s goodness.

And finally we were HOME. As I laid in bed that night I was emotionally thankful to be there instead of huddled up on a plastic fold out chair trying to keep warm under a sterile sheet and listening to alarms all night. Nora was cozy in the familiarity of her own environment. Thank. You. God!!!!

Since we’ve been home Nora has been recovering without any complications. There were a few episodes of discomfort here and there, especially early on, but each day she seems to be getting better and better.

“My sister reads some riveting tales of intrigue to me. I hope dey make a movie after dis one.”
“Yeah. Dats right. I got a tattoo. I love my Dad! It says.”

We did some last minute shopping for Our Kelly’s birthday on Sunday. Gavin & Greta ran into some friends. They seemed really shy.

Sunday was a big day! Our Kelly’s birthday, Bengals game, Reds game, naps, milkies… Lots to get ready for!

There has been lots of drainage from her sweet ears, which is good and expected. A baff is expected after all that too!! 😁 Eeeeee.

“Eenen da song goes like, ‘Who dey! Who dey! Who dey! Who dey tink dey gonna beat dem Bengals! Where do dey play? In da jungle, afraid of noooooobody!'”
“Anyone wanna toss wiff me?”

“Now wouldja look at dis ting?? Dis ting is so neat!!!”

Nornor adds some words of sentiment and her signature to her Kelly’s card ~

We hope you had a wonderful birthday, Kelly! We were so delighted to spend and celebrate the special day with you!!!

“Eenen dey had a turnover like dis…”

Now on into Monday Norns woke up a little unhappy – something obviously bothering her. We eliminated the belly factor. 😔 She’s sleeping now and hopefully wakes up in better spirits.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
(Isaiah 41:10 NIV)

I could not have asked for a smoother morning. My prayers for a clear path are truly being answered. God is not only clearing the path, He is sweeping it clean and manicuring the edges.

Nora even got a baff this morning!!

Her ride to the hospital was happy and content, even though she was probably starting to get pretty hungry!

Why would there NOT be a painting of three birds at the receptionist’s desk? We explained to the receptionist why we were taking a picture of the owls and she excitedly responded that THREE is her number too, “The Father, the Son and the Holy Spirit!!!” It was sooo wonderful to meet you and so reassuring to have had you as the one who greeted us this morning, Michelle!

Nora is all pre-registered. She sang some sweet songs to us while we went over everything.

Nora fell asleep and is cozy in her Daddy’s arms, much like her mother who is cozy in her Heavenly Father’s arms. Peace, sweet peace.

We are mightily blessed by all of your prayers!! Thank you so very much, sweet Lauren:

12:20 PM – Nora is back in the OR. William and I are in the waiting area. Praying. Surgery is estimated to last 137 minutes from the time we went back which was 12:10 PM EST.

1:00 PM – They just called us up while we were in cafeteria. Much sooner than we anticipated. Waiting to speak w doctors. ——-

1:21 PM – Dr. E just came back to speak with us! There were NO issues with her heart or lungs while under anesthesia! Her adenoids were not enlarged and did NOT need to be removed. Her tonsils were slightly on the large side and they will keep an eye on those as she continues to grow. The tube placement was a little tricky but it was a success!! We might NOT have to stay overnight. Waiting to hear.

Nora is getting an ABR hearing test right now and we should get the results of those shortly. I CANNOT wait to sniff that sweet little head fuzz!!!!!!!!!!

5:15 PM – I’ve been busy loving on this sweet, sweet girl. She’s doing very well. She came out of anesthesia pretty upset, but settled down after awhile and then slept in my arms for an hour or so.

With trisomy 18 being such a rarity, it is so nice to be living in this day and age. If it weren’t for the Internet I would have no way of connecting with other families. There is a baby girl named Ivy with trisomy 18 whose story I have been following since shortly after her birth on Christmas Eve. A couple of weeks ago they ended up “just down the street” here in Cincinnati for heart surgery from West Virginia. They’ve had some big and some small hurdles to overcome which have delayed the heart surgery which has prolonged their stay here. I have been praying so hard for Ivy who is now battling a bad cold. While we were waiting to see Norns I messaged Ivy’s mom, Robin to let her know we were here and that I’d love to meet her. Robin knew Nora’s room number before we did!! We are 4 doors down from them!!! What an absolute joy and honor to meet and hug this amazing woman of faith. Robin uplifts me daily with her quotes and scriptures as I check on Ivy throughout each day. Please pray for Ivy that she recovers quickly and can get her heart surgery! I only got to see the top of her little head through the glass so as not to compromise her any more! God bless and protect that sweet, precious little girl!

6:05 PM – They are getting our discharge papers together! We will be heading home within the hour.

Saturday

Beautiful little bird that hit the kitchen window this morning. 😦 I’m still not sure what kind of bird he was. Some sort of warbler?

Greta made a lavish grave for him adorned with an assortment of wild flowers. As pretty as this bird was on earth I marvel at how radiant his feathers must be in heaven. Rest in amazing peace, little bird! {I don’t mean to start the post off on a sad note but I am instead marveling at God’s perfect creation and rejoicing in the promise of new Life!}

And he that sat upon the throne said, Behold, I make all things new. And he said unto me, Write: for these words are true and faithful.
(Revelation 21:5 KJV)

This happy little morning baby had a big day ahead of her!

The Give Back event that was graciously coordinated and hosted by Wing Eyecare was a great success! I was overcome with emotion as we turned into the lot!

I was so touched by all the people who put forth their time and energy to make this happen — all for Nora!

Nana and Papa hung out with us for most of the afternoon and helped with Nora and the big kids. Thanks, N & P!!

“Whhh? Is dis Sesame Street?”

No, Nornor! That’s Belle from Florence Freedom!!

“Awww!!! Hi, Belle!!!”

Gavin and James Brooks, retired Bengals player ~

Fun in the Photo Booth ~

Oh look! It’s a stinky little Trunk Show!

Babies like to tailgate too!

We had an absolutely FABULOUS time! Thank you, Ryan and everyone who came together to do this for Nora! We are overwhelmed with gratitude!

Later on that night we took Nana & Papa up on their invitation to der Buben Verein Oktoberfest celebration. We love hanging out with my Mom & Dad and I hadn’t rocked the dirndl dress in a long while. Invitation accepted!

William would look so suave in a dashing pair of lederhösen! All in favor say, “Ay Yi Yi Yi…”

Me und mein Vati ~

Home sweet home :: Baby sweet baby

Easy like Sunday morning in da baffs ~

Monday we had Nora’s pre-op visit with Dr. B. to make sure she’s healthy for her ear tube surgery.

While we were there she got her flu shot out of the way. She was hardly phased by that shot which gives a pretty good indication of how painful the antibiotic shots were that she had endured in the past! Sad!!!

She’s been given the green light from Dr. B. for the tubes!

I’m so thankful for sweet and thoughtful neighbors! This delightful bouquet of mini sun flowers, Russian sage, Italian parsley and chive blossoms was delivered to my door by a very well-bred young man! ☺ Thank you, T and M!

Getting ready for Monday Night Football!

“Are you ready for some football!!??”

“Mwahh!”


“I got my cheering outfit on…”

“Me n my Kelly say, ‘GOOOO, BENGALS!!!!'”

The Bengals beat the Steelers! Yayy!

Tuesday morning Norns was talking in her sleep:

She was busy dreaming away about something! I hated to wake her up, but it was a perfect morning to walk the big kids to school!

“Time to go buh bye!”

“Laura and Albert Ingalls” on the way to their one room schoolhouse (you’d think!?). “Don’t forget your lunch pail, Half-Pint!”

Walking through unpaved fields and woods to get to school is actually kind of awesome! Nora seems to really enjoy the off-roading in her jogging stroller. She’s the adventerous type!

This girl loves her brudder!! She thinks he’s really cool!

Tuesday night things somehow went south. Nora was in obvious discomfort and refused to keep much of her bottles down. She had a very restless night and her displeasure extended on into Wednesday. As usual we initially have trouble trying to figure out if it is her ears or her belly giving her grief. After we spoke with the nurse at the pediatrician’s office, it was determined that she should probably be seen. This could all be a side effect of her earlier flu shot, or she was getting another ear infection.

I did manage to get a couple of really sweet smiles flashed at me, but the discomfort persevered and she was sad again seconds later.

She’s truly Happy Baby at heart. You could tell she wanted so badly to feel better which made things even sadder.

At the pediatrician’s office we decided to administer an antibiotic shot and see where that would take her. If she had something viral going on with her belly, we didn’t want to aggravate it any more with an oral antibiotic and we wanted something fast acting to wipe out any infection in time for her upcoming surgery appointment on Friday. If she is running any kind of fever the day of surgery, it will likely be canceled.

Poor sweet Norns did not appreciate the shot one bit. She did not recover from this one as quickly as she did the flu shot. It obviously inflicted great pain on her precious little fat leg. I really hate to see her so sad. Her Daddy consoled her. I love to witness the love she reflects back to him.

Through the rest of the evening Happy Baby seemed to be gradually coming back to us. She had a good restful night of sleep and woke up in a wonderful mood today. She was running a slight fever this morning, but I did speak with a pre-op nurse at the hospital and as long as Nora is not exhibiting any other symptoms right now, she should be good to go tomorrow morning.

We have to be to the hospital at 10:15 in the morning. We are expecting that she will stay overnight in CICU (which sounds so scary to me!!!). I will try to update here on the blog and/or the Praying for Nora FB page as often as possible. I will do updates on one blog page kind of like I did on the day that she was born so as not to wind up with a bazillion posts. (Press F5 a lot!) Your prayers are incredibly encouraging and appreciated!!!!!!!!!!!!!!!!

Heart racing, shallow breaths. The boiling anger tautly reined with assertive faith and transcendental peace. I live in a world that rationalizes and encourages an eye for an eye. It’s expected. Revenge – so ingrained into my very being that I had never bothered to question it before. It was just a tempestuous attribute of my hot tempered personality. Revenge disguised itself as self-preservation to protect my pride from being walked on. The perpetrator and any others watching would get the clear message: DON’T F MESS WITH ME.

Through Nora’s diagnosis, her gestation, her birth and her precious life I have grown exponentially in my faith walk.

Instead of turning to the world (aka Jerry Springer) as an example of how to maneuver through life I began to see things so differently. It was as if though Nora had graciously turned on the lights for me; given me a glimpse of the endless blue sky after having lived in a dark box my whole life. With the proverbial lights turned on I noticed I was surrounded and engulfed by weeds–the useless stratagems of anger, hatred, dishonesty, anxiety, self-righteousness, bitterness, spite, rage, impatience, fear, selfishness, entitlement, violence, and torment. It never took much effort to nourish this tangled mess of weeds that seemed to sprout up overnight out of nowhere. I had lived with this overgrown collection of weedy vices for so long that they were almost a part of me. There was no room for the seeds of spiritual fruit to blossom until I grabbed the weeds at the base of their thorny stems and yanked them out by the roots.

“But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law.” (Galatians 5:22, 23 NIV)

I partook in an entire Bible study on the fruits of the Spirit. I learned that these seeds of the Spirit’s fruit were planted in me long ago. It is an ongoing process to cultivate and water them. If they are not tended to very, very regularly they will shrivel and eventually become consumed by weeds again.

In simple humility, let our gardener, God, landscape you with the Word, making a salvation-garden of your life. (James 1:21 MSG)

You must put away every kind of bitterness, anger, wrath, quarreling, and evil, slanderous talk. Instead, be kind to one another, compassionate, forgiving one another, just as God in Christ also forgave you.
(Ephesians 4:31, 32 NET)

When someone had wronged me in some way it used to feel good in the moment to really let the offender have a piece of my mind. An eye for an eye. Vengeance. Out for blood. It’s so easy to jump the gun and believe the worst about people.

Understand this, my dear brothers and sisters: You must all be quick to listen, slow to speak, and slow to get angry. (James 1:19 NLT)

How quickly I forget my own shortcomings and iniquities, as if though I’m suddenly this perfect entity that has been… unjustly crucified, screaming, “I DIDN’T DESERVE THIS!!!!” If I’m honest with myself — the biggest things I don’t deserve are God’s grace and mercy, yet He has abundantly blessed me with them anyway. Shouldn’t I then in turn extend the same grace and mercy to others who have sinned against me? Shouldn’t I direct my anger at satan instead of the person? It seems pretty simple in writing, but this concept goes completely against the ways of the world. My pride would argue that treating the adversary with love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control is a sign of weakness when in reality it is quite the opposite. Anger and hatred are the well-worn path of least resistance.

Don’t let evil conquer you, but conquer evil by doing good.
(Romans 12:21 NLT)

Bear with each other and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you.
(Colossians 3:13)

Last Monday evening William took Greta and I out on the river, just on a whim. Gavin didn’t want to come with us and stayed home with Norns and Kelly. The tranquility of the setting sun reflecting on the rippled water relaxed my heart and my mind after the intensity of the day. Greta made me laugh.

Ducks playing basketball? Sure. Why not.

Meanwhile back in Nora’s world:

“Oh, hi! I’m just hanging out wiff dat baby in da mirror.”

“Mommy says dats just an afflection of me in der. Dat don’t make no sense to me.”

“I blow dat baby kisses. Mwah!”

“For where two or three are assembled in my name, I am there among them.” (Matthew 18:20 NET)

“People might tink dat I just lay around all day being a baby, but I’m really getting to be a big, big girl. I can hold my head up soooo good now!!”

“Mmmmm. Ders my sister. I lub her!!!!”

“IS DAT BAFF WATERS I HEAR???!!!???!!!”

“Yaaayy!!”

“Who’s all stinky clean?”

“I yam.”

“Speaking of yams… Deez sweet potatoes aren’t what I ordered!!!!!”

“Eeeeeee!!!!”

“Bleckkkk!!!!!”

“Sheesh!! At least my sister loves me!!???!!!??”

Whatever is good and perfect comes down to us from God our Father, who created all the lights in the heavens. He never changes or casts a shifting shadow.
(James 1:17 NLT)

{Another CURRENT post will be up shortly!!}

Last Sunday night (Sept 2) on into Monday Nora just wasn’t feeling good and very uncomfortable. When the low grade fever popped up we knew another visit to ENT was imperative. The holiday weekend limited us to doing anything except keeping her comfortable with acetaminophen until Tuesday.

I called to make an appointment with ENT first thing Tuesday morning. They were able to squeeze us in at 1:30 with Dr. C. who we had never seen before. He was wonderful and quickly determined that Nora needed to be on an antibiotic based on the mucus in the back of her little throat. There was no sense in adding to her misery by holding her down to look in her ears with the microscope. We discussed Nora’s upcoming surgery for tubes as well. As I mentioned a couple of posts ago, pulmonology wants a scope done of her airway to get a look at her adenoids. If the adenoids are enlarged and ENT feels that it would be of benefit to remove them, they are going to go on ahead and do that while she is under. Dr. C. as well as Dr. E. are both very optimistic that this would be a relatively simple procedure with minimal recovery time for Nora. I’ve been running it past other families in the online trisomy 18 communities and have received a varying array of opinions from “best thing we ever did” to “absolutely no way”. I’m extremely undecided about all of this right now and am anxious to discuss it further with all of her doctors and specialists.

By Wednesday, day 2 of the antibiotic, Happy Baby was back in full effect! It is such an enormous sigh of relief when Norns is happy!! We opted for grape bubblegum flavor again which is what she was agreeable with last time.

Someone really sweet and happy came to visit with her Kelly in Mommy’s office.

“Scyooz me? I’m here for my 4:00 appointment for kisses and loves?”

“So if I hold down da icons I can move dem around!!?”

“Wouldja look at dat?! Dats kinda neat!!”

“Aeaehhh… I’m not sure about dis headband, Sister!!”

Rainbow spot in the evening clouds ~

“Goodnighty night!”

Thursday morning we got our act together in time to walk to school.

I was trying to push the stroller with one hand and drink my coffee with the other. Greta was busy texting her Daddy with my phone, and taking pictures of me!

“Dis place looks kinda fun!”

Nora and I saw a rainbow spot on the way home!

And three birds waiting for us back home!

“I hang out here at home and play with all my things.”

“An just when Mommy thought I couldn’t get any sweeter and prettier, I show up in this pretty headband!”

“I’m a little lippy at times.”

“And sassy too!”

“It’s Friiiiiiiiiiiidaaaay!!!!!!”

“Not like that means anything anymore though, right Mommy n Daddy? 😉”

“We’ll just be hanging out here on the couch if anyone needs us!”

Saturday we went on a benefit walk for Keegan’s Spirit Foundation which is an organization set up in memory of Keegan Southers. They provide hope and assistance to families who have children affected by congenital heart disease. Not only was this for a great cause, but the weather was perfect and Nora woke up happy! We packed it all up and headed out.

Milks in the shade. That’s what she likes.

All that strolling made for one tired baby cake.

Meanwhile in a tree…

Sunday morning baffs are what she likes.

She’s lippy and flippant!!!!

“Datsa real cute girl in there!”

As a face is reflected in water, so the heart reflects the real person.
(Proverbs 27:19 NLT)

I want to remind everyone of the event that Wing Eyecare has so graciously offered to host for Nora this weekend.

We are still planning on being there with Nora, however it is almost 4 in the morning as I type this. I have been lying in bed staring at the ceiling for a couple of hours worried about the cold and flu season that seems to be already upon us with the colds and what not. In my Facebook newsfeed there are several trisomy 18 kids who are hospitalized right now with pretty serious illnesses. I’m awake thinking about them and praying for them… and worrying. In the news headlines cases of whooping cough are already being reported. Last year, starting in October Nora was in lockdown here at the house. We did not bring her out for any reason other than doctor appointments. We also tried to limit our own exposure to the general public. This weekend is going to be yet another exercise of faith in trusting that God will shield and protect Nora against anything that could harm her. However we have to use common sense as well. I know it’s tempting to want to touch her and pinch her little cheeks, etc. but it’s just too big of a risk right now. Even if you feel “totally fine” and “know you’re not sick” you could still be a carrier. That’s how this junk spreads around. And if you ARE in fact sick, please understand that a typical common cold that might be no big deal to you or your average person has the potential to be very, very serious for Nora, as is the case for any medically fragile child. I don’t mean to be callous and ranting, or rude… I am just a little on edge already. I also don’t mean to transpose this wonderful event that Wing Eyecare has so graciously put together for us into a public service message about germs. I’m so excited about this event and I can’t wait to see and meet those of you who are able to make it out! The weather is supposed to be perfect!

Maybe more for my own reminding:

Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.
(Isaiah 41:10 NLT)

Sorry I’ve been away from posting for a few days. Although not directly involved –there have been several crisis events around me that have occupied my heartfelt ministration.

“An I had an earaches too, but I’m all better now!”

“My sister brings me in to listen to the piano. I kinda like dat!”

Backtracking ~

This past Sunday, September 1st marked the 12 year anniversary of my marriage to my sweet hubzbind.

William ~ I love you, I treasure you, I respect you, I appreciate you, and I trust you. Thank you for standing by my side even during the toughest of times. You are an amazing husband and father. I love your wisdom, I love your humor, I love your faith, I love your wit, I love your heart, I love your empathy and I love your compassion. I am so so blessed by you.

We tried to make the best of a plaintive day and went out on the river with the big kids to watch the fireworks.

Driving Scared. (being silly)

Lots of boats anchored waiting to watch the show + a view of the city and a sweet boy ~

Flock of geese flying over the city ~

Beautiful girl and a beautiful sunset ~

The whole earth is filled with awe at your wonders; where morning dawns, where evening fades, you call forth songs of joy.
(Psalm 65:8 NIV)

I was more enamored with God’s light show but it was neat being out on the water for the fireworks too.

On Friday morning my sweet brother-in-law Dustin’s father passed on from this world. In recent days this was expected, but nothing can really prepare us for the solemn finality of such a tremendous loss.

I am reminded of a story I once read awhile back. In my own words, it goes something like this ~

The Parable of the Twins

Once there were twin babies. Since their conception they had always gotten along, coexisting with one another within the cozy parameters of their mother’s womb. As they grew bigger and started running out of space, sometimes they would argue with one another.

“Don’t worry,” said one baby to his twin, “Someday we will be out of here and we can run free and do things we never imagined!”

“What are you talking about,” the other twin scoffed,”This is it! This is all there is! There’s nothing outside of here!”

“I don’t want to shove it down your throat or anything, but I, personally, am really looking forward to seeing Mother face to face. I know she exists, whether you think so or not. I believe she takes care of us and nurtures us through these cords. It’s sometimes hard for me to imagine and comprehend, but honestly? I think we live in her!”

The other twin laughed and laughed, “Do you hear yourself?? You just made that all up to make yourself feel better. That’s utterly ridiculous. If there is a ‘Mother’ then why can’t we see her? There is evidence of others in this world before us and none of them have ever come back to tell us. After life in here there is nothing. We can’t live without these cords!”

“Someday you’ll see for yourself, I guess,” the baby sighed, “Sometimes when I’m really still and quiet I can hear her voice. I can hear her singing over us. Every once in awhile I can see radiant light shining through our sky. It must be really bright out there!”

“I never see any radiant light,” the other twin taunted with his eyes tightly squinted shut, “If there is life out there and it is so great and bright and with a loving Mother as you claim, then WHAT are we doing in here???”

His brother smiled and explained, “It’s not like this is some cruel holding cell we’re trapped in or something. We are really very comfortable here if you think about it. But we need to be in here to grow and develop. We’re not yet prepared for the new world that awaits us.”

The other twin shook his head and went on believing otherwise.

As the life in their mother’s womb drew to an end, both babies were of course a little apprehensive, one more so than the other.

“What’s it going to be like to actually see my Mother face to face, to be held in her arms?” one twin wondered in anxious anticipation.

The other was fearful, “What if my brother is right? Will the Mother be mad at me that I didn’t believe in her?”

And so they transitioned from this world into the next. It was more brighter and more beautiful than anything they had ever experienced. The air that filled their lungs was frightening at first, but also exhilarating. They flailed their arms and legs in an attempt to make sense of the seemingly endless space and light before them. Then came the most magical moment. Suddenly they felt safe and warm again. A beautiful smiling face looked back at them with sparking tears in her eyes.

“Here you are at last!!!” she cried in excitement, radiating endless love.

🔹🔷🔹

And so it was with Earl as he passaged into the next world. He was met by the loving, warm embrace of our Heavenly Father, unhindered any longer by the restrictions of his cancer. He has begun a new life! In those still, quiet moments evidence of the magnificence that awaits us ALL boldly shines forth if we take the time to notice it. When it is our time to be born into this next world, we too will get to experience it in all of its fullness and glory.

Earl Hubbs
Entered Eternal Peace August 30, 2013

“What no eye has seen, what no ear has heard, and what no human mind has conceived” — the things God has prepared for those who love him.
(1 Corinthians 2:9 NIV)

Please pray for Earl’s family as they endure this saddest of times.

===========

A recap of the past few days with Nora ~

Wednesday

“And here we have Nora Rose wearing a piece from the Hiphelper’s fall collection…”

These are actually some therapeutic little shorts that help improve rotational movement in children with low muscle tone. Nora’s legs naturally fall to the sides, especially when she’s in her sleepy time chair. The Hiphelper shorts keep her legs positioned forward while she’s asleep or resting… or pulling the oxygen tubes out of her nose, as the case may be.

But not in the baffs!!

“🎶Who’s in the kitchen with Norrrra…🎶”

“Oh, dats my Dyad.”

Look at those pretty little naked cheeks!!!!!!!!!!!!!!

Aahhh, to have a cordless baby!!!!

Thursday

“G’Morning!!”

“Me n’ Mommy? We got plans!”

Nora and I went on a walk and an excursion to explore new territory. There was rumor of a shortcut to Gavin & Greta’s school, so we had to check it out for ourselves. There was a field with a neatly mowed path through tall grass, then a pathway that leads through some woods. We got to the end of the pathway and lo and behold! There was the school at the bottom of the hill! We just might be able to walk to school one of these mornings if all of the planets are properly aligned!

All of the bumpy terrain must have bounced Nora to sleep, I thought to myself. Turns out she was just pretending to sleep for the camera!

When we got back home I was blessed with some time to paint. I set up a table and chair in the shade of the back deck, filled up the nearby bird feeder, put on some Pandora and went to work. I had collected several bird rocks from down at the creek just the day before.

While I was painting I had a little friendly spider visit me. You can see him here on the end of one of the brushes to the right of the red paint bottle.

When he first scurried across my table, I expected that he was just passing through and would go on about his spider business. Not so! This tiny little spider was incredibly curious about me and what I was doing!

Here he is on the “paint pallet” waving his front little legs (arms?) at me?

Then he went to check things out from the top of the yellow paint.

When I first poked my fingertip near him he would jump away. After about the 5th or 6th time he climbed up onto my finger and walked around on my arm for a bit. He even spent some time at the very top of my paintbrush AS I was painting. Sooo cute!! Yes, I’m weird. I know.

Finished nests ~

“If anyone needs help cookin dinner, I can help!”

“You got an apron I can put on or something?”

Friday

Nora’s sweetness was so appreciated this day.

I went down to William’s office with the intent of cleaning, but ended up doing landscaping and pulling parking lot weeds instead. What better way to enjoy 90° heat? 😁

“Stalker photo” from William’s phone that he emailed to me! LOL

Later in the evening my Mom & Dad came over for a visit. We had a delicious dinner of marinated pork on the grill. I was rather proud of myself!

Norns was showing off her awesome neck muscles to her Nana while Papa looked back at old pictures from when Nora was tiny.

“You can set yer beer down on my table if you want, Nana!”

Saturday

This morning was the long anticipated return of Our Kelly from her visit down to Florida! We were all so so happy and excited to see her!

Beautiful Baffing Beauty

Kelly brought some wicked storm clouds back from Florida with her!!!

We were waiting for Elvira Gulch to come pedaling past the window!

This baby don’t care ’bout no storms!

You have been a refuge for the poor, a refuge for the needy in their distress, a shelter from the storm and a shade from the heat.
(Isaiah 25:4 NIV)

Monday

Today’s Special was a dollop of hand-smeared whip cream served chilled over blue desk of baby.

“Eenen I had dat stuff all over my face, on my ears, in my hair… I had to schedule a baff!”

“Whip creams are kinda neat, but I like my milks!”

“Have I showed you my lippy?”

We’re back down to 1.5 meager mL of coconut oil and will verrry slowly try to advance! In hearing from others, this seems to be the best approach for keeping Angry Belly Baby at bay.

Tuesday

Someone sweet got carried out to the car half asleep, all warm and cuddly, a condition known in our family as “schnoogy”. {I love that my phone recognizes this term and appropriately autocorrects 😄}

Nora had an 8:45 pulmonary appointment to discuss the results of her sleep study that was done awhile back and just a general checkup that all is as it should be!

She’s such a good, good girl in the car now!!!

“Elanora Yusko?”

“Ohh! Over here!! Dats meee!!!”

Dr. C is among Nora’s excellent team of doctors. We hadn’t seen her in quite awhile which, as much as we like and appreciate her, is a good thing! There is nothing urgent or pressing as it pertains to Nora’s lungs. The sleep study showed that Nora definitely needs to be on oxygen through the night, but during the day we’ve been given the green light to start experimenting with lesser and eventually no oxygen throughout the day, as long as that’s okay with cardiology. We also discussed long term solutions to optimize her airflow in regard to tonsils and adenoids. They will take a closer look at those while she is sedated for her ear tubes. Nora hinted that she didn’t appreciate the tongue depressor by promptly puking all over Dr. C and the examination table, “You wanna try dat again??”😝

We left the hospital with joyful and thankful hearts!

I am still in absolute awe over the incredible, amazing reassuring God wink that I got on our way to the hospital that rendered me SPEECHLESS. I have tears in my eyes and goosebumps as I type this because it was so bold and so obvious. We were passing University Hospital which brought my Uncle Bill to mind. It’s so hard to believe he’s gone, I thought to myself. As a wave of sadness washed over me I received the inaudible nudge, “Look for the white PT Cruiser,” which was the car I knew Bill to be in when he wasn’t on his motorcycle. I looked away from University Hospital not at all expecting to see a white PT Cruiser and dismissed the thought as my own silly imagination. But no. There it was. A white PT Cruiser. Not a blue one, not a black one, not an orange one, but a white PT Cruiser. EXACTLY what I was told to look for! I didn’t even have to look around for it. It was heading directly toward us in the opposite direction; not another car in front of it or behind it. I stared at it, turning around to watch it pass, completely dumbfounded. The wave of sadness ebbed back out to sea. I was left with the profound reassurance that not only was Bill enjoying the luxuries of Eternity, but that such a huge and mighty God cares about “little insignificant me” on such a very grand and personal level.

Please keep my brother-in-law Dustin and his family in your prayers. His Dad is in the last days of his life after a cruel battle with liver cancer. This is a terribly difficult time for all of them.

For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
(Romans 8:38-39)

Thursday

Nornor has been chewing on her hands like crazy as usual, and still no teeth! She’s gotten into the habit of pulling down on her lower lippy with her index finger and went and scratched the inside of her little mouth! We had to put socks on her hands! She’s going to have to stop that or she’s going to end up with a lampshade collar around her neck! 😉

“🎶I’m gonna knock you out…🎶 Mama said knock you out…”

“G’nite, brudder n sister! I love you!”

“Eenen I go n get in da baff!”

Friday

Norns politely slept in while I packed lunches, made breakfast and saw the big kids off to the bus stop.

Nora had a morning appointment with ENT. It was just a follow-up from a previous appointment, but I was glad that William had the opportunity to meet the wonderful Dr. E. who will be doing Nora’s ear tube surgery. Based on Nora’s happy demeanor and the fact that she wasn’t exhibiting any outward symptoms, we didn’t feel that it was necessary to subject her to the “tortures” of the microscope, especially since tubes are on order relatively soon (September 20th).

The rest of the afternoon was uneventfully relaxing. I enjoyed a long overdue, therapeutic lunch with a dear friend and then cuddle-loves with someone sweet and little in the evening ~

I thank Christ Jesus our Lord, who has given me strength, that he considered me trustworthy, appointing me to his service.
(1 Timothy 1:12)

Saturday

As the day progressed, Nora grew more and more uncomfortable. We have a hard time differentiating gas pains from ear pains. She is adept in conveying when something is bothering her, but she never comes right out and says what it is. She likes to keep us guessing. Nine times out of ten, it is just gas pains. The discomfort associated with her belly troubles is usually short-lived. Today there were only short intervals of smiles.

Her moans and groans, mucus in the back of her throat, and gagginess all pointed at an ear infection as the day drew to an end. She did enjoy her bedtime baff ~

OF COURSE we had just been to the ENT the day before, and OF COURSE it was now the weekend. We treated her with acetaminophen and kept a close eye on her through the night.

Sunday

Nora had a restless night, still not comfortable and she may or may not have had a low grade fever. It’s one of those thermometers (a temporal) that I don’t entirely trust. It will give 3 different readings in the same minute. Her heart rate was a little high, but that would be expected no matter what the source of her troubles. As soon as the sun was at a reasonable point in the sky we put a call in to the on-call pediatrician. We were hoping to get an antibiotic called in, but the doctor felt better about seeing Nora first just to make sure there wasn’t anything else going on. We would continue to treat her with acetaminophen until Monday.

As the day progressed Nora seemed no worse off. I’d been to church by myself in the late morning. When I returned, she was really pretty happy! I was relieved that the pain medicine was working! Or perhaps Daddy really cheered her out of a funk!

With Nora’s pains under control, I decided to take the big kids out for awhile. Nana & Papa had invited us to go swimming now that “summer” had finally arrived just in time to be almost over. We had canceled because of Nora’s ears, but decided to surprise them with a texted picture of our car on the ferry, obviously en route!

Professional rock thrower returning back to the car from a trip down to the river while we waited:

Treachery lurks beneath the waters ~

My smile grew bigger and bigger with each photo that William texted.

“She’s being as sweet as I can ever remember,” her Daddy reported.

Nora was as happy as ever and was really going to town showing off her new rolling skills!!

So much so – that she ended up all tired. She fell asleep right there in the middle of the floor!

Oddly enough, it appeared as if though Happy Baby were back!! She didn’t need anymore pain medicines throughout the day either! Perhaps it wasn’t her ears after all!?

The only thing we can think is that her belly was really disagreeing with the coconut oil supplements. We’ve started off slowly making it up to only two 2 mL doses — 4 mL for the day. We’d hoped to increase to a total of about 15 mL per day (equivalent of a tbsp.) but I’m not sure her little body can handle all that – even broken up throughout the day. 😕

Just glad she’s feeling better and that we avoided an unnecessary antibiotic!

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It’s been brought to my attention by a few of my readers who subscribe by email that you aren’t getting your updates by email. I’m still looking into the matter, but for now I’m guessing they don’t come through when I backdate a post with the purpose of keeping them neat and orderly. Whatever the case may be I will do what I can to remedy! So sorry!

Wednesday

The morning is extraordinarily quiet. Even the sun is away. The hum of the oxygen concentrator and washing machine occupy the background with sound waves of Steven Curtis Chapman laced throughout. Nora got kisses from Daddy as he said goodbye before leaving for work early this morning. Shortly after we saw the big kids off on the school bus it was time to take Our Kelly to the airport. She’s going to be away for a week visiting her Mom in Florida. Now here we are — just Nora and I and it’s kinda lonely! It’s been a little bit of an adjustment not having the big kids here throughout the days. Even if Kelly is downstairs doing her own thing, just knowing she’s there is so comforting to me! Yes, it’s nice to have the extra set of hands to help out when needed, but beyond that I really truly enjoy her company! I marvel at what an answer to prayer she has been for us, and I hope she feels the same! She blends right in with all the silliness around here and is awesomely efficient when she’s on kid duty! We all love her!!! And now miss her!!! 😔 The kids and I are going to have to make one of those construction paper chain link things to count down the days until her return! Heh heh!

“Mmmehhhh!!!”

Morning baffs set the tone for a nice, relaxing long afternoon nap!

While Norns was asleep I went to the pantry and then the refrigerator to look for something to snack on. I wished we had some fresh fruit in the house beside the 2 blackened bananas. Seriously and quite literally not 5 – 10 minutes later there was a mysterious knock at the front door. I was nervous about answering it lest I ended up swindled into buying magazines and encyclopedias. My curiosity got the best of me and I opened the door. It was a delivery for ME from Edible Arrangements! A bouquet of fresh fruit!!! From my hubzbind!!!

Um… wow!!! That was really easy and awesome!! I should’ve taken a picture of the whole thing, but I immediately opened it and munched it up. It was really quite pretty, and sweet and thoughtful and intuitive of my dear sweet hubzbind! Now I kinda wish I would’ve wished for everything else on my grocery list to suddenly show up at the front door too!

Before too long, this girl woke up from her little nappies!

We attempted to go swimming up the street at Kittykins’ house (the swimming cat!), but again Nora was vehemently opposed to the idea.

“What da heckza matter wit deez peoples???? Datz not baff waters!!!”

I spent the remainder of the evening with my big guy at drum lessons and then out to dinner afterward. It’s nice to spend one on one time with each of the kids. Gavin and I had a nice conversation about things and then marveled at the beautiful cloud formations conspiring with the setting sun.

While we were away William texted us the picture below of Nora. He said she’d been disgruntled and fussing until she got a glimpse of Greta’s doll sitting in her Bumbo.

“Excuse me… Um… Scyooz me………… I think you’re in my seat, girl.”

That doll got the stare down for like 5 minutes straight!!

But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law.
(Galatians 5:22-23)