Tuesday

It was a beautiful day in the front yard (check out the 3 crosses!) ~

~ and a beautiful day in the backyard (3 birds!)

What made the day even more beautiful is that it is the day that an amazing little girl named Greta was born! Eight years ago today we welcomed a precious baby girl “burrito” into our family! The first thing I noticed about her were her chunky little cheekies! In those first few moments of totally taking another healthy infant completely for granted, I tried to imagine life here on out with this new little life. Who will she be? What will she look like as she grows up?

My imaginings came no where close to this astounding little girl that Greta has grown up into. The extraordinary intuition and empathy packed into this little girl’s heart cannot be contained. She is absolutely overflowing with love and compassion for not just people, but also animals and even insects! She recently captured a leaf bug with an injured wing so he could rehab safely without getting eaten or further injured.

This is a little girl who instead of getting hurt and bent out of shape about someone being mean to her, is able to look past that. “Maybe (who ever) is having a really bad day, or maybe someone is always mean to them too and they don’t know any different. That makes me sad for them,” she’s been known to say. At which point I have to pull out her birth certificate (with tears in my eyes) to double check that she isn’t actually OLDER than me, because clearly she’s WISER than me in that regard!!! Lesson from Greta: Don’t take everything so personally!

Do not seek revenge or bear a grudge against anyone among your people, but love your neighbor as yourself. I am the Lord.
(Leviticus 19:18)

What a PERFECT big sister for a baby with special needs. Someone who will guard her and protect her with a vengeance throughout their sweet lives. The radiant love that Nora and Greta have for each other is such a magnificent thing to witness. Such pure love can hardly be put into words except to say that it is God given.

We love because he first loved us.
(John 4:19)

So sheik!

Nora had a visit from her physical therapist and her nutritionist today. I was a little disheartened to learn that Nora has decreased her weight a little bit. In July she was 18 lbs. 1 oz. At the beginning of August she weighed in at 17 lbs. 13 oz. which was only a few ounces lost. She’d had 2 ear infections, antibiotics and lots of pukies. Today she weighed in at 17 lbs. 5 oz. My heart sank at the sight of the scale’s reading. But like the dietician explained, it’s not unexplained weight loss. She’s had the ear infections, then a cold, and she’s also shown a decrease in volume probably because she wasn’t feeling her greatest. (We keep a very detailed record of her feedings) Nora’s physical therapist also assured me that Nora is of course metabolizing more now too. She’s a little more active than she used to be. She’s not content to just lean up against us or the back of her Tumbleform chair. She likes to hold her head up on her own! She’s rolling around and reaching and kicking at things! Since her body is in need of more calories we’ve decided to supplement her with coconut oil and then olive oil. We are gradually working toward a tablespoon per day of coconut oil right now. That will contribute 117 more calories a day in addition to all of the other great attributes it has (regularity, brain boosting, immunity).

As William also pointed out, and the nutritionist verified – our other kids could have undergone a weight loss at some point in their lives too. A year between doctor visits would not have shown anything. Because we are watching Nora under a figurative microscope we are going to see and notice every single little discrepancy.

I made the decision to extinguish the cluster of fear that was smoldering in my gut and enjoy the rest of my day.

Happy birthday to the birthday girl!

Hmmmm… What to wish for…

And the day ended just as beautifully as it began.

And the Holy Spirit descended on him in bodily form like a dove. And a voice came from heaven: “You are my Son, whom I love; with you I am well pleased.” (Luke 3:22 NIV)

Do you see it?

Sunday

Weekends at Mom & Dad’s swim club have become a pretty regular and wonderful thing. However this weekend there was a little extra something to it. Gavin’s birthday was Saturday and then Greta’s birthday is Tuesday! We chose this day to have their party. In the past I’d spent many years seeking out unique, gender-neutral party themes, cakes, and ideas for each of their parties. (before the days of Pinterest too, I might add!!!) I went absolutely overboard with party invitations, decorations, cakes, etc.

The old way:

The new way:

Fortunately I no longer feel compelled to run myself ragged with any of that anymore, honestly because I do not have the energy, and also because the kids, as it turns out, don’t really care about any of that. They’re just happy to have cake and presents! Throw in a pool and you’ve got a couple of really happy kids. All the party hysteria was fun while it lasted. I think? Life is too short to be made so complicated – here, anyway.

Here are Gavin and Greta with cousin Gracie, Oma and their gender neutral Sponge Bob cake from Kroger!

“Is it time to eat cake yet?”

Nornor got to try some icing! Yay! No gagging!

Nora is wearing the dress that Greta wore to her first birthday party ~

Time warp back to 2006 – Gavin was sooooooo sweet with his little sister!

I started to reprimand him when he walked up to Greta’s high chair and stuck his finger in the icing of her cake. Instead of sticking his finger in his own mouth like I probably would have done when I was 3 years old, he ever so gently put his chubby little icing finger up to Greta’s lips so she could taste it. She was a little nervous about digging into the cake and needed some help from her experienced big brother! He knows about these things! (Where in the world has time gone??)

Nornor didn’t particularly care for swimming at all this week. She was much happier with a warm baff when we got home.

“Listen, I’m gonna hafta call you back. I tink it’s baff time!”

While waiting for the bath to fill up, Norns worked on her rolling skills.

“Dis is how I roll, y’all!”

Monday

Nora is happy that her boogies are almost gone!

It’s so sweet to have this baby at the dinner table with us!

Had to share this because it’s hilarious ~
I was going through the bins of the 18 months clothes to pick out what Nora could use. Pictured below are two like-sized onesies.:

I did a double-take at the one on the left, wondering why it is so WIDE! I went to double check the sizing and my question was promptly answered.

Super-sized onesie?

And my God will meet all your needs according to the riches of his glory in Christ Jesus.
(Philippians 4:19)

Saturday, the 17th

Ten years ago today we met a brand new baby boy whom we had already named Gavin. I vividly remember his crying little face when the doctor plopped him up on my chest. I wondered, “WHO is this little guy?? WHO is he going to be?” He looked back at me maybe wondering the same thing. I was instantly in LOVE with this precious bald-headed little boy.

The early years weren’t always easy, but they were most certainly worth it. There is so so much to love about this boy, especially his sense of humor. He genuinely likes to make people laugh. William and I are still trying to figure out how that came to be! 😉

Gavin, you are loved, you are treasured, and oh so appreciated! The world is a better place with you in it! Thank you for the presence that you add to our family as a dear son and an awesome big brother, especially to your baby sister. You can just tell that Nora thinks you are REALLY cool – because you are. Happy birthday, buddy!!!!

The girls stayed home last night ~

~ while the boys ventured off to the Bengal’s pregame! WHODEY! (or something)

“Happy birthday, brudder! Here’s to you!!” *clink*

For you created my inmost being; you knit me together in my mother’s womb. (Psalm 139:13 NIV)

Thursday

It was another beautiful fall-like morning. A wisping layer of fog folded up over the hills from the river valley below. It’s attempt to enshroud the neighborhood was thwarted by the conquering sun – a beautiful display.

And onward we trooped to the second day of school. Sometimes Nora sleeps while I’m getting everyone ready and fed. When she doesn’t, I have 2 awesome helpers to entertain her. This morning we were all entertained with the liveliness of a tiny straw hat on a tiny sweet head ~

“Git doze chickens fed!!!”

Gavin strolled Nora up to the bus stop while Greta and I tagged along behind. We had just enough time to snap a quick picture!

“THE BUS!!!!!!!!!!!!!!!!!”

I started to head back home with Nora and noticed the beautiful rainbow spot over our house ~

God continued, “This is the sign of the covenant I am making between me and you and everything living around you and everyone living after you. I’m putting my rainbow in the clouds, a sign of the covenant between me and the Earth. From now on, when I form a cloud over the Earth and the rainbow appears in the cloud, I’ll remember my covenant between me and you and everything living, that never again will floodwaters destroy all life. When the rainbow appears in the cloud, I’ll see it and remember the eternal covenant between God and everything living, every last living creature on Earth.” (Genesis 9:12-16 MSG)

Over our house, no less!!!! 💝

In awe of the rainbow, I continued on to our house. I took notice of the beautiful mild weather matched by Nora’s pleasant disposition and decided to turn around. We went for an almost 3 mile walk!

Back home again Nora was best left naked. The Sunday night mucus has gradually developed into a full blown upper respiratory funk. Hopefully it runs its course soon.

Here’s a naked little farmer.

“Get doze dang crows outta my crops!!!!!!!”

Although the above picture portrays a cantankerous, sick, crabby baby – she is for the most part a happy baby girl. She’s got boogies, but she’ll still squeal at ya!! Boogies be gone!!

I went to take a picture with my phone and found this in the gallery.

Can’t stop laughing!!!! I have my own built-in comedy club here.

A cheerful heart is good medicine, but a broken spirit saps a person’s strength. (Proverbs 17:22 NLT)

Friday

Kate R. stayed the night with Nornor last night, recovered from her 100 mile endurance run that took place at the end of July! I’d have liked to have stayed up all night chatting with her, but that would have defeated the purpose of her coming all the way over to watch Nornor. We agreed to get together for lunch, said goodnight and then I proceeded to sneak out the front door in my pajamas to go take a look at it:

You don’t see one o’ them stickers every day! I tried to peel it off to stick on my own car but it was stuck on there pretty good. “All the attention without all the effort!” is what I say!! 😉 WINK!

Nora still has lots of boogies, but she’s in good spirits, her lungs are clear, and she’s not febrile. The boogies are just causing lots of pukies.

Check out our little Beanie Baby’s awesome head control!! She’s getting so strong!

“I’m on? Oh… Okay…”

“Hi! It’s me, Nornor! Today I’m going to perform an operatic duet with my boyfriend.”

“Lllllaaaaaaa!!!!!!!!”

(Pause)
“Hey… Are deez beans? What ARE deez tings? Deez tings are kinda neat!”

The day was relaxing and uneventful. Nora did manage to come to dinner in a pretty dress tonight, however! She’s really well-bred and refined!

Let them give thanks to the Lord for his unfailing love and his wonderful deeds for mankind.
(Psalm 107:15)

Wednesday

Today summer vacation officially came to an end with the onset of the school year. Our big 5th and 3rd graders were ready and eager to get back to see their friends!

The obligatory front porch/first day of school photo ~

I couldn’t help but recall the SSSSAAADDD moments I put little Gavin and then sweet baby Greta on the bus for the first time. Their scared, sad little faces looking out at us from the bus window. My, how times have changed. I was lucky I even got so much as a kiss this year!

I was somewhat apprehensive about starting up into the new routine. I had become used to the ways of the summer. However, I quickly reminded myself of the apprehension I experienced at the end of the last school year. Having the big kids here at home all day seemed daunting!! It was simply the change of what I was used to that caused the anxiety. It was a reminder to remain versatile. This “new” routine would quickly become the norm again.

“Where’d everyone go??? I guess no one will notice if I rip these dang tubes off…”

We had some special visitors today who bribed me with lunch so they could come to meet Nora! 😉 I had a wonderful visit with my long time friend Elizabeth and had the pleasure of meeting her cousin Melissa ~

Melissa has been following the blog since the very beginning. Although I had never met Melissa in person, she had been walking all this way right along with us – as many of you have.

These are the encounters I love whether I planned them or God planned them! I hope I get to meet ALL of you at some point along the rest of my life. I can tell you on the blog how much I love and appreciate each of you, but I sure love getting to do it in person!

With that said, I want to let you know about a little something special that Wing Eyecare is doing for us. I received a phone call out of the blue one day from Ryan. He explained that Wing Eyecare does a Give Back event every year for someone or an organization in the community. One of Nora’s nurses had nothing but good to say about Wing Eyecare when I had mentioned in casual conversation to her that I needed new contacts. At my appointment this past December I had shared the blog with the woman who assisted me. She in turn shared it with the rest of the office. As Ryan explained this to me, the hugest chills ran down my spine. He would have had no idea that just the previous night William and I had been to a fund raiser benefit for a crisis pregnancy center. I truly believe that as a direct result of our deep desire and ability to help others, these type of things practically fall in our lap! The VERY NEXT DAY!!!!

A generous man will prosper; he who refreshes others will himself be refreshed.
(Proverbs 11:25)

After talking it over with William we agreed to accept this blessing. We could always use extra assistance in childcare costs. Anything left over is used to bless others. I assure you we’re not over here buying speed boats and Ferraris.

These are the details ~

Weather and health withstanding we plan to be there at this event with Nora. We would love to personally invite each of you to our home, but that’s virtually impossible and wouldn’t be NEARLY as fun as this!! While you meet Nora you can also meet retired Bengals players and members of Florence Freedom. There will be lots of food and drinks courtesy of Smokey Bones, and probably the opportunity to check out some swanky eyewear from the fabulous Wing Eyecare!

We will try to be there with Nora for as long as possible, but check the Praying for Nora page for details as the day draws closer! Even if we can’t make it for some reason – this looks like a lot of fun!!

===========

Come late afternoon, Nora and I strolled up to the bus stop to wait for the arrival of the big kids.

“Hey, look! Here comes da bus!!!”

Sister and brudder were so happy to see their baby sister! Nora was so glad they were finally back home!!

Lots of squeezing and cuddling ensued once we got back home!

No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.
(1 John 4:12)

Monday

Sunday night and on into Monday we noticed Norns was getting a little gaggy. Sure enough ~ mucus in the back of her throat presented itself which has been an indicator of ear infections for her. She was still in great spirits and even slept through the night the night before!

Lots of gags = lots of pukes = naked. It can be a bit of a challenge changing her clothes at such a frequency with her oxygen tubing, so we just opted to let her be nakies. She likes that!

She even came to the dinner table naked!! She ain’t got no kinda manners!!

“No shoes, no shirt, no problem!”

I did talk with the nurse at Dr. B’s office and as long as Norns wasn’t running a fever she didn’t need to be seen, but it probably wouldn’t hurt to have her seen by ENT just to make sure.

Tuesday

The throat boogies and gagging continued to cause pukes through the night. I called Children’s Hospital first thing this morning to see about any available ENT appointments. There were no appointments available until tomorrow afternoon. I stressed the urgency of the situation and was put on hold for a couple of seconds. Once back on the line the receptionist informed me of a 10:00 spot that was open at the Liberty campus, which was about an hour away, can you arrive 15 minutes early, etc. My brain made some excessive early morning computations and I blurted out, “Yes, we’ll take it!” It was 8:45. And GO!!!!! (Insert sound of tire burnout)

(This is my sarcastic face of stress-free contentment)

William was still out of town – so it was just me. Never had I so quickly packed up and moved out!

“Yeah, I tink your gonna wanna take a left up here….”

Kelly and Greta had still been asleep. I peeked in on Greta to tell her what was going on, reminded her that her Kelly was downstairs only if she needed her. Otherwise Nana was on her way over to get her.

Nora and I got all the way to Fairfield before there was an urgency in her cry that required me to find a safe parking lot to pull over in. Poor girl only got to drink part of her milkies before I whisked her off in the car. And I wanted to make sure her medicines were going to stay down. I gave her another ounce of her bottle which placated her for a little bit, but by the time we got to the Liberty exit, she was raging pissed, “I KNOW DAT MILKIES IS UP THERE!!!!!!!!”

The following paragraph is to be imagined in dramatic slow motion with this music playing.

I rushed inside in speed-walker mode, which implied our situation to be much more of an emergency than it really was, “DIS IS AN EMERGENCY, DANG IT! I’M HUNGRY!!!!” I signed Nora in and then frantically fixed her another bottle upon realizing I’d left the remainder of the other in the car. Mid-formula scoop they called her name. Milkies Interrupted. I quickly wheeled the little siren up to the desk and confirmed her date of birth, signed something, and then ran back to our seat.

(You can conclude the aforementioned musical interlude.)

Ahhh, what a relief the milkies was!

We were called back relatively quickly to see a new doctor that we had never seen before. I’m always a little apprehensive about new doctors, ready to lace up my dusty boxing gloves for Nora! However, once Dr. E. entered the room, his kindness, compassion and expertise were immediately perceptible. I let down my guard with a happy sigh of relief as I explained Nora’s ailments. He interacted with Nora, encouraged me as a parent and besides being a very knowledgable doctor, he put joy in my heart and happy tears welling up in my eyes. Upon examining her ears he found there to be fluid within. Her ears were not draining properly. Gavin and Greta never had any ear infections. This is all new territory for me and I misunderstood ‘fluid in the ear’ as the presence of infection. I later learned this wasn’t necessarily the case, it merely increases the likelihood of infection. Dr. E. ascertained that Nora would definitely benefit from tubes because her tiny ears just aren’t draining properly. Nora is scheduled to have tubes put in on September 20th.

Baby Girl was still a bit incensed about having been restrained while her ears were examined. I was relieved not only to have just met such an awesome doctor, but that a solution was in sight. We made our way back out to the car at only a slightly frantic pace. I climbed in the back seat with her to attempt to soothe her, but she wasn’t having any of it.

So I took her picture instead and wished for one of those self-driving Google cars. That didn’t see to help matters either.

I mistakenly assumed that she might settle down once the car was moving. We made it a couple miles down the road to West Chester Marriott’s parking lot. I got her out of her seat and rocked her and loved her until she fell asleep. I had been in brief contact with William, on his way home from Cedar Point. The last he had heard, Nora was upset. I sent him this picture to let him know she had settled.

She stayed asleep for the duration of the trip home and before long some special people that she loves very, very much showed up ~

“I love my Dyad an my brudder!”

“Eenen I love baffs too!”

(We’ve been told that bath water wouldn’t necessarily be the cause of fluid in her ears and/or infection, but we do keep Nornor’s sweet little ears out of the water on the off chance it causes her any issues or discomfort!)

Despite the craziness of the day ~ today is my Oma’s birthday! HAPPY BIRTHDAY, OMA!!! I love you!!!

‘May the Lord bless you and protect you. May the Lord smile on you and be gracious to you. May the Lord show you his favor and give you his peace.’ (Numbers 6:24-26 NLT)

Saturday

In my excitement of Nora’s awesome, awesome cardiology report I somehow neglected to share Melanie’s blog featuring some of our family photos she took last weekend. You may have already seen it from the post on Praying for Nora page, but if not: HERE IT IS!! She did such an awesome job, as if I expected anything less!!

We had a nice relaxing Saturday morning with walks and cuddles.

Later in the afternoon we headed off to the fair. Nornor stayed at home with her Kelly and the Big Kids were allowed to each bring a friend.

I love the sights and colors at these venues. Besides awesome people watching opportunities the artist in me loves and appreciates the beautiful color contrast and retro aspect of the rides. Note I did not mention anything about enjoying the sounds. Every ride and every booth was blasting 20 different types of music from 8 trillion watt concert speakers. You know, incase we weren’t already visually stimulated enough. My gangster rap country techno speed metal headache left me wondering what happened to the good old fashioned calliope? Nor did I so much appreciate my kids learning the words to Lovely Lady Lumps while waiting in lines for rides. 🙅 “Whattchya gonna do with all that junk…” Perhaps a wholesome garage sale might be in order, Fergie? (I intentionally omitted any YouTube links. If you are unfamiliar with this whimsical ??? melody, consider yourselves fortunate and do not venture off to enlighten yourselves unless you’ve got a bottle of mind bleach handy.) I digress…

Anyway, we had fun!

SPOILER ALERT: William and I were glad to get this year’s Christmas card photo out of the way.

Because who would want to see cute pictures of our kids???

Sidenote: I’m not sure what’s going on there with “my” belt buckle(?). If that’s even what it’s supposed to be? Ultimately I think this would make a fabulous pregnancy announcement. Alas, I have no little “redneck” (or otherwise) “on board”. 😱

Sunday

This was by far I think the busiest day Nora has ever had apart from being born! When we awoke, we had no idea all the flurry of activity that awaited us! Greta and Nora spent the morning cuddling and playing Beauty Parlor and Store. We even managed to get teeny tiny little itty bitty pigtails in Nora’s sweet wisps!

William and Gavin departed for their great journey up to Cedar Point after breakfast. I guess the fair didn’t quite quench their appetite for hijinks and adventure!

Later in the morning Kelly and I made the split second decision to bring Nora to church with us. Although we had to sit in the Cry Room we got to hear a great message that really helped moisturize my eyes a lot, especially as it pertained to Nora. It was about how great things can come from small and unlikely places. Um… Hello?! And there she was sound asleep on my lap… small and unlikely… great and mighty. To have Nora there with me intensified the magnitude of this message. Absolutely no one 💗 should feel bad about not being able to make it over to watch Nora, KP! 😄 Nora was meant to be there with us. Plus there were LOTS of Nora’s fan club present that were so excited to see her!

After church we went across the river to go swimming with Nana & Papa and family.

Norns wasn’t quite as amicable as she was last weekend, but that was on account of some belly airs. She got in the waters a couple of times and all in all I think she had a fun time!

Once again we had another “chance” encounter with an old friend I had done some artwork for in the past. Although our meeting was tinged with sorrow over the news of the loss of a mutual friend, it was a joyful encounter. It was so so good to see you, Mary!

As late afternoon approached, we loaded up the car and headed to MeeMee’s apartment where Greta had been invited to spend the night. I think they had something exciting planned!

Earlier in the week I had been contacted by a precious follower of the blog who was going to be in town from West Virginia for a Reds game / free concert afterward. She explained that she had thought about contacting me to see if we could meet, but that it seemed awkward, so she pushed the idea out of her head. God wasn’t about to let that fleeting thought go by the wayside. She couldn’t ignore the Holy Spirit’s not so gentle nudges and had seemingly no choice but to throw that out there in a private FB message to me. Meanwhile on the other side of her computer or mobile device was me receiving her message with a huge smile on my face. If Nora was in a good mood and we were able to get our act together, I was delighted at the prospect!

As the day and time came to be, there was no question. We already had our “act together” from being at the pool. Nora was for the most part a happy baby girl. After dropping Greta off at MeeMee’s the stadium was literally within eyesight. Stephanie estimated that the concert would be over around 6:00 pm. I got a text from her just as we were crossing the bridge back over into Ohio that she and her family were still able to meet! After only a few spins around the block we found a parking spot nice and close to the stadium. We loaded Norns up in the stroller and headed down Main Street.

Stephanie, it was an absolute PLEASURE to meet you and your beautiful family!

Josie, Stephanie, Norns and me. Josie is exactly a month older than Nora! (Stephanie’s husband and 2 adorable energetic little boys not pictured)

As if that were not quite enough – the earlier Reds game had gone into THIRTEEN long innings!! The concert was all but just beginning. Who was playing, you ask? No other than MERCY ME – one of my most favorite bands EVER!!!! So many of their songs have pulled me through some of my most darkest moments.

As we stood there outside of the stadium conversing the sound of the music lured us closer. Had anyone asked me if I were maybe interested in bringing Nora to a loud rock concert, EVEN IF it was Mercy Me, most certainly I would have politely declined. Too loud, too many people, etc., etc. etc. But there we were with this concert practically handed to us on a silver platter. The gates were still open. There weren’t an over abundance of people in the standing area, and it wasn’t unreasonably loud as I would have imagined. Nora was still tolerant of her surroundings, so we all wandered in and suddenly there I was with my sweet little miracle at a MERCY ME CONCERT with some awesome people I had just met who have been praying for us all this while!!!!!! What?!?!?!

Imagine William’s surprise when he was texted this picture with, “Nora is at a Mercy Me concert, no big deal.” And the expanse of Great American Ballpark in the background. What?!?!?!

“Dis is kinda fun!!”

Nora was lulled to sleep by the beautiful prayers set to music. Just as at church earlier her mere presence intensified the experience. I am overcome with emotion just writing about this. It seems like God altered an entire baseball game just for us to have this incredible experience!

I Can Only Imagine <– CLICK THAT LINK!!!!

As Nora started to wake up, she raised one of her arms in the air (as she typically does). Her Uncle Josh had just commented last weekend that she looks like she's at a Christian rock concert when she does that. Apparently she was just practicing for the Mercy Me show!!! I WISH I had gotten that on video!!! Kelly and I were cry-laughing!

Nora didn't actually get to attend the Red's game, but a sweet and kindly usher took Nora and Josie's names down and then came back with these certificates.

✔ Been to Great American Ballpark

Stephanie and her family still had a long drive ahead of them and needed to duck out before the concert was over. I would love to see you again, Stephanie!!! Thank you soooooooo much for obeying that nudge!!!!

“Yayyyyy! I made it to home plate!”

This is the day the Lord has made. We will rejoice and be glad in it.
(Psalms 118:24 NLT)

Monday was a particularly difficult day. God must’ve known that and had it pre-arranged for Rachelle to meet with me that morning. What was intended to be a meeting to go over Nora’s therapies and progress also evolved into a beautiful conversation about God and the trials we are faced with in this life. I fully understand and expect that Nora will not meet the same milestones as other children her age. Her developmental delays are just a part of who she is and I have for the most part expected and accepted that. Yes, there are the moments where I wonder what she would be like if she weren’t hindered by an extra chromosome. If she were a chromosomally typical child, certainly she’d be walking and getting into everything by now. The reality is that she doesn’t have much physical capacity beyond a 3 – 6 month old. Nora wouldn’t be NORA without her extra chromosome. I love her exactly the way she is and I don’t wish her otherwise. As Rachelle was going through the checklist of developmental milestones, I answered, “No, not yet” for many if not most of them. Not that I was getting frustrated or upset that Nora wasn’t yet meeting these milestones, but just incase I was feeling apprehensive Rachelle sweetly pointed out to me, “No, Nora isn’t able to sit up on her own without support, etc. But look at everything else she’s doing!! She can just lay there and sleep while she touches and changes lives by simply being Nora!! Some people will live a full lifespan without checking that off their list once!” Ebullient tears flowed down my cheeks and over my smile as I looked down at that sweet, sweet baby sleeping in her little rocker. Developmentally delayed she may be, but she is strongly and mightily influential beyond her years!

Having been faced with a family health crisis involving one of her own children, Rachelle surmised that it is those things that facilitate the rich and intimate relationship with God, which is something we all long for whether we openly realize it or not. No one hopes and prays that their baby will be born with trisomy 18. No one dreams for the day that they or one of their children or loved ones will get a cancer diagnosis. Those are the things that throw us to the ground, knock the wind out of us and bloody the quintessence of our very being. Those are also the very things that will reveal to us the almighty compassion of our loving God when we turn to Him for comfort. I think back to my childhood when I took a nasty spill on my brand new two-wheeler. Up until that point, I was busy doing my own thing, riding along through life – not thinking too much about my Mom or Dad. The second the bike went down and I hit the pavement I wanted and needed one of them urgently. My anguished cries were answered by my friend’s Dad who ran to the rescue and tenderly carried me up the street to my parents. My parents nursed and dressed my bloody knees and elbows and kissed away my tears. I suppose I could have gotten up off the sidewalk on my own that afternoon. I could have made it back ip the street, washed the blood off of myself and found some Band-aids, I think. Undoubtedly it would have been labored and painful and taken twice as long. I had no skill or knowledge of cleaning and bandaging open wounds. My immature efforts very well could have resulted in infection and recurring issues. I am a self-sufficient adult (for the most part, ahem…), but still very much the vulnerable child that I was then, still very much in need of God’s tender mercies, and occassionally that special person(s) to carry me to His feet when I just can’t get there on my own.

Rachelle’s visit encouraged and refreshed me with the reminder of God’s goodness in preparation for the day that laid ahead. I hoped and prayed to God that I would somehow, someway be able to offer some sort of hope and comfort to Kate Wehner and her husband Ryan as they said goodbye to their daughter Eleanor “Ellie”. I had never been to an infant funeral before, and clenched my teeth that such a thing should ever even have to exist. It just wasn’t fair, I silently cried. While heart wrenching and sad, the funeral mass and burial were such loving tributes to this tiny short life who brought us all together this afternoon. I was so honored to be given a butterfly to release at Ellie’s gravesite. Along with everyone else there in the church and then at the cemetery, I was overcome with sorrow and a very limited context of God’s master plan. I am only capable of guessing what the big picture is, but maybe this is what it took to bring that certain one person to God, thereby securing their eventual transformation into Eternity. That in itself would be enough, but because I know and trust God like I do, I KNOW it is going to be something, probably many, many things more beautiful than any of us could ever surmise. Already Ellie has forged bonds and friendships that I believe will last a lifetime. But for Ellie, I might never have had the opportunity to meet her precious Mommy and the rest of her sweet family. This most certainly isn’t the end, but the beginning of something amazing. I can’t wait to meet you someday, Ellie!

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
(Philippians 4:7)

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The big kids started Circus Camp this week, which was good practice for school hours. They had to be out the door at 8:15 to catch a ride (Thank you, thank you, thank you, Kelly R!!!). Nora had to get used to not having her brudder n sister around, and was so happy to see them when they returned later in the afternoon.

“So… Uh… Where ya been, sister?”

“I’ve been kinda looking around for you all day long, is all…”

“How was everyone’s day? I’m exhausted from being a baby!”

“Will someone pass the milks already? I’m gonna need a baff here in a few minutes.”

(She’s got her feet up on the dinner table… She don’t care!!!)

“DISSSS. Is. What. I. Like.”

And my God will meet all your needs according to the riches of his glory in Christ Jesus.
(Philippians 4:19)

Tuesday

“G’Morning, Mommy! Shall we go for a walkies?”

It’s a beautiful day in the neighborhood!

If you zoom in really really closely and look just above the light blue spot in the sky you’ll see the 3 birds that flew by right as I was taking the picture! Totally unintentional and cool!

“I tink I need another baff. I’m kinda stinky (kinda stinky).”

“I sure love it when my sister gets home from da circus!”

“Greta n my Kelly help me do some fun things!”

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
(Romans 15:13)

Wednesday

Nora and I made a quick run to Kroger to get a few things that we needed and because we were bored at home. The weather was uncertain and we had been inside all day waiting for it to rain. We were in and out in the blink of an eye, but Nornor got a little upset on the way home. “I THOUGHT WE WERE GOING SWIMMING!!! THIS ISN’T WHAT I LIKE!!!” she yelled. I rushed her home to the baff with some milks and she was compensated for the misunderstanding.

Clean Baby ~

Pretty Baby ~

I can’t stop laughing at this video of Nornor: Norns the Friendly Robot

Thursday

Nora’s routine cardiology appointment was scheduled for 7:00 this morning. She woke up in good spirits and stayed extraordinarily happy for the duration of the entire visit. Never ever has Nora been known to kick back and relax while the ultrasound tech runs a jellied wand over her chest for almost 30 minutes. Who in the world was this smiley little girl offering happy squeals to the lady peeling electrode stickers off of her chest??? She was so good and incredibly sweet, and then we got the news that her heart function has IMPROVED!!!! Her heart rate is even registering down in the low, low hundreds! That was previously unheard of! Tears of utmost gratitude welled up in my eyes, but I can’t say I was totally surprised. God’s power is infinite and I fully believe in miracles!

I saw a sign (in the literal sense) on the way to the hospital this morning:

Even the crosswalk raised a “hand up” – can I get a AMEN!!

This baby is so cute, I can hardly even stand it ~

“I guess you see how sweet my little heart is then?”

Back home the forecasted rain finally unleashed — but not without a rainbow!

Back yard ~

Front yard ~

“Me n sister shifted to another gear.”

Earlier in the week I found a dreaded ticket under my windshield wiper. I guess I’m going to have to be more careful in the future ~

My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry, because human anger does not produce the righteousness that God desires.
(James 1:19, 20 NIV)

Friday

Today was the last day of Circus Camp! We got to attend a SPECTACULAR show! I was so proud of Gavin & Greta!

“Maybe I could go dere next year!?”

“Maybe I can ride a motorcycle across the tightrope!!”

“Or I could ride across the floor in my red chair?” (with her nasal cannula falling out!)

“My sister can help me!”

“Have a great weekend! I love you!”

He himself bore our sins in his body on the cross, so that we might die to sins and live for righteousness; by his wounds you have been healed.
(1 Peter 2:24 NIV)

I was going about the morning when I noticed an alert on my phone that Our Kelly had sent me a Pinterest pin. I eagerly opened Pinterest to see what it was — she always makes me laugh with something silly!! At first glance you wouldn’t find anything side-splittingly hilarious about this:

Unless of course Nora was laying next to you in this:

Her caption was: “The big girl version of Nora’s outfit!” You kinda need knee muffins to pull that one off though!

Little Fashionista and I went on a short morning walk and then watched Greta ride her bike around the driveway for awhile.

Greta and Nora playing Beauty Parlor ~

Gerrrrrrl, you look GOOD!!!

Friday

Nora was up very bright and early, so we went for a very bright and early walk. On the first leg of the walk we saw an inordinate amount of bird trios! As I turned around at the top of a dead end street, the view over the houses was breathtaking–a sun rainbow!

The bright rainbow spots on either side of the sun are called called a parhelion, I’ve discovered in my research. It’s not common to see them both at the same time – AND with the accompanying halo! It is a phenomenon that requires just the right circumstances to occur: high level clouds, flat ice crystals that are larger than 30 micrometers, and they need to be broadly and horizontally aligned; the sun lower in the sky. In history, Edward IV instilled strength and courage into his troops in the Battle of Mortimer’s Cross by pointing out these “three suns” in the sky back in 1461. “Fear nothing — it is a sign that the Holy Trinity is on our side this day!” he yelled out to them, pointing at the sky, and they went on to win the battle! I smiled as I read that account. Fear nothing — the Holy Trinity is on my side this day! … As we go on to win our battle!

Greta was excited to get Nora dressed for the day. She had selected their matching outfits (thanks, Kimberly!!) and set them out the night before. A photo shoot was in order ~

The day is not complete without a baff!

And duck face portraits!
“How’s dis?”

Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms.
(1 Peter 4:10)

Saturday

I got a couple of smiles and then things turned sour relatively quickly.

I was worried that Nora’s ear infection was not being effectively treated by the antibiotic. She was extremely fussy, something obviously bothering her. I wanted nothing more than to curl up in bed with my misery, but instead decided to make the conscious effort to remain optimistic and joyful. I would do everything I could within my own power to make things better for Nora. Beyond that I had to choose to let God take care of the rest. A very crabby baby, the pouring down rain–things weren’t looking good for the photo shoot that we were supposed to do that evening.

In due time the rain dissipated and Nora’s fussiness was alleviated. The antibiotic was tormenting her digestive tract as was evidenced by the fuming diaper out in the garage garbage can.

Going anywhere with an infant is a carefully planned operation especially when driving almost an hour away and cameras are involved! After about 4 hours of prepping the big kids, going over checklists, several trips to the car, entertaining and getting Sweetcakes and myself ready, we were finally able to pull out of the driveway!

All of the planets must’ve been properly aligned this afternoon. The rain left behind a beautiful day, everyone got to Sarah & Dan’s on time, and I didn’t forget anything… except William’s shorts! 😬

We had a great time with Melanie and cannot wait to see the pictures!!!! She’s given us a sneak preview of a couple shots and they are AWESOME!!! (Yes, we did round up some shorts for William! Thanks, Dan!)

All this picture taking gets baby boys tired. (Is that Aunt Em traipsing in the background?)

But not baby girls.

“… An nen I was like, ‘Do you think dis outfit looks good on me, or should I wear some different colorz?’ An my Uncle Dustin was all, ‘No, I think the teal and white is best wiff da yellow pants, an I was all, ‘Well what about the warmer colors to balance out some of the cooler colors?’ An nen my Mom was all, ‘Let’s just do the teal and yellow because Uncle Dustin knows best,’ an I was like, ‘Okay den!'”

Sunday

“Dis is my spinny wheel. Dat ting is kinda neat!!!”

“I’d like to look at it all day, but it looks like it’s time for brunch and swimming!”

“Yep. I was right. Dis is what I like!!”

“Whe… Wait a minnit? Are you going swimming brudder n sister???? Wait for me!!”

“Mkay. I got my Foster Grants on.” Really!

“An now I got my ‘kini on!!!”

“Whe… Woahhh. Dis is like some kinda big baff tub or someting, Mommy?”

“An nen I can get in dere?”

“Oooh! Dis is really kinda nice!! Dis is what I like!!!”

And of course a swimmy video:
Big Girl Swimmer

Swimming makes baby boys AND baby girls very tired!

“Yeah, but I only needed a little cat naps. I got to meet one of my fans who recognized me! Thanks so much for coming over to say Hi, Erin C!!! I also got to see another one of my fans earlier, but unfortunately we didn’t get any pictures den. Next time, Julie O! 😊 Thanks for your prayers for me! It was so nice to meet you, Erin, and so nice to see you again, Julie!”

“Aaaaahhhhhhhh……”

A beautiful end to a beautiful day.

For since the creation of the world God’s invisible qualities—his eternal power and divine nature—have been clearly seen, being understood from what has been made, so that people are without excuse.
(Romans 1:20 NIV)

I’ve been working on blog entries over the past few days, but first wish to express my heartfelt condolences to another local T18 family. Those of you that belong to the Praying for Nora page may recall mention of the Wehner family awhile back. I had the pleasure of meeting Kate and sweet little Eleanor (Ellie) then tucked snugly away in her Mommy’s belly in early June. Kate was due August 17th, which also happens to be Gavin’s birthday, and Nora’s upcoming 16-Month birthday. I received the heartbreaking news Wednesday night that Ellie had been born sleeping–her beautiful angel wings already sprouted. Amidst my sadness I contemplated what a special tiny person Ellie was to have completed her life purpose so quickly. I don’t believe for a second that God was asleep at the controls when he made Ellie and then brought her back to heaven so quickly. God does not make mistakes! So then what about grief? Why does losing a loved one, especially a child hurt so terribly!? If we really truly believe shouldn’t we just accept God’s will and then stoically go about our lives? No. Grief is a very normal and necessary part of healing and renewing. Just as a heavy rainfall comes to cleanse and nourish the ground, our falling tears cleanse our souls, watering the tiny seeds that will someday flourish and blossom joy from the cracks of our broken hearts. Kind of like a beautiful flower in an unlikely place!!

While fulfilling her life purpose, Ellie was cozy, protected and deeply loved from the warm embrace of her mother’s womb. At Kate’s request on her blog I had been praying for strength, perseverance, peace and trust in God’s plan. Those are my continued prayers for the Wehner family as they endure this terribly difficult time.

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)

Please pray for Kate and her family!

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Since we’ve been back from Michigan Nora’s cheerful demeanor has waned into fuss mode. At first we chalked it up to classic gas pains.


I was able to get out of the house for a little bit and accepted an invitation to go swimming with the big kids.

We had a relaxing afternoon, but my thoughts were never far from Nora. By late afternoon we headed back home by way of the ferry. Beautiful day. Too bad my thoughts didn’t match.

Nora had another night of restless sleep with nothing more than a 45 minute stretches of sleep.

By Tuesday with no improvement throughout the day we were no longer blaming belly airs. The presence of snotties in the back if her throat hinted at the potential of another ear infection. We were able to get an appointment with ENT at 5:15 that evening, but would have to drive an hour away to one of the other Children’s Hospital outpatient campuses. No matter! We were eager to do whatever we needed to help her, so off we went! With only a few minor protests about being in the car, Nora quickly dozed off to sleep. She had barely taken any naps and had to be tired!

We waited for about 45 minutes before we were seen. Nora was awake, but had plenty to occupy her attention as we walked her back and forth down the lavish expanse of brightly colored waiting rooms.

Finally we were called back. Nora was extremely angry about being restrained while the doctor looked in her ears. It was quickly determined that she had a pair of inflamed tonsils (which explained her gagginess and pukes) and her left ear was infected. A prescription for another antibiotic was written and before long we were headed back home. We decided to take another try with the oral antibiotics instead of going back to the shots so soon after her last episode.

I’m not sure if some pressure was relieved when the doctor looked in her ears or what happened, but Nora was in noticeably better spirits.

She was awake the whole ride home with little or no fussing! She was still adept at being Travel Baby (accessories included!)

We picked up the antibiotic at the pharmacy, opting for grape bubblegum flavor since the strawberry hadn’t gone over well in previous attempts. Mixed with a half bottle of milkies and administered by syringe, it won Nora’s seal of approval!! Once a day? We can do this!!!!

When I woke up Wednesday morning to a report that Nora had had a great night, I had to restrain myself from doing cartwheels up and down the street in my pajamas (because that would have been weird)! With a sigh of relief, I fell back asleep on the couch only to be woken up by the sound of my phone’s camera. Gavin was using it to take a picture of me sleeping in an attempt to illustrate the similarities of Nora and I sleeping! LOL!

I’m not sharing the picture of me sleeping with my arms up over my head… in my giant Nap Nanny… wearing a onesie.

“Whe… Wh.. What’s going on here? You takin’ pitchers o’ ME!!??”

HAPPY BABY HAS RETURNED!!!

“Yes, my Mom n Dad are well aware of the Nap Nanny recalls, warnings, etc. I don’t move around like a typical baby my age, so I’m not at risk for rolling over in it or out of it or becoming trapped in it somehow. Mommy did stop duct taping it up on the hood of the riding mower though, just as a precautionary measure.”

“I love Greta like a sister. Oh wait. She IS a sister! Den dats probbly why den!”

“My chin. It’s double.”

In preparation for this weekend I had to do some clothes shopping! I daringly brought the big kids along with me. What else would I expect to find in my collection of photos after Greta asked to borrow my phone and ran off with her brother into the depths of TJ Maxx:

(There are about 50 more similar poses in various masks incase anyone is interested in ordering a glossy bound photo book.)

What’s going on this weekend, you ask? Our extended family is having a photo shoot by the fabulously talented Melanie Pace of Beautiful Beginnings Birth Photography. She’s the one who perfectly and precisely captured each incredible moment of Nora’s birth. This was an anniversary present to our parents, and undoubtedly a present to future generations of people we don’t even know yet! We’re all fretting over what to wear, and what color schemes to incorporate, if any. Truth be told, we could all be wearing jean shorts, tube tops and wife beaters and Melanie would make it look awesome!! Now hopefully the weather holds out for us!!!

William and I snuck out for the evening on date night extraordinaire. Amidst the chaos of day to day life with vacations and visitors mixed in, we’ve neglected to make time for each other. I think my sweet hubzbind was feeling a little lot under appreciated lately. I just wanted to publicly affirm my love, devotion and appreciation of this amazing man that I am so fortunate and blessed to be married to. William, you are my knight in shining armor. I love you, I love you, I love you! I’ll always get the door for you, and if I ever get a motorcycle, I’ll let you ride on the back! 😉 You do a good job, kid! 👍 Fo rill though!!

No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.
(1 John 4:12 NIV)