Big Girl

April 1st

“Has anyone seen Nora? No one knows where she went……”

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“April Fools!! Dat was me!!”

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“I tricked my whole family and da whole community on April Fool’s Day wif my disguise!”

Nora is so tricky!! She really had us going! We couldn’t get much information from this “other” baby in strange glasses! Those teeth looked sooo familiar though!!!

Meanwhile back in March ~

By St. Patrick’s Day, Nora’s cold was definitely showing improvement. Even though she doesn’t have an ounce of Leprechaun in her blood, she was more than happy to celebrate the occasion. Plus it was her 23 month birthday!

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Incase you missed this video on Nora’s Facebook page, here she is wishing everyone a Happy St. Patty’s Day with green boogies! Her squeaker was still broken ~


Now that her cold has finally come to an end, we are all literally and figuratively breathing easier!

Here is Nora on a trip into the kitchen in her special chair ~

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I sporadically decided to surprise Gavin at lunch that afternoon. He’s my buddy boy! I worried that he might suddenly one day become “too cool” to have lunch with his parents in the school cafeteria. I love this boy!

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On St. Patrick’s Day we listened to Celtic music during dinner. If I had the ability to preplan and organize anything in advance – perhaps I would have whipped up some shepherds pie or corned beef? Theme music to accompany the dinner or occassion is very important here at our house. For instance, on taco night(s) we listen to mariachi music (sombreros are on my shopping list). In the picture below we were eating pork chops with red cabbage and spätzle, which of course called for some POLKA. Greta was appropriately dressed with Gavin’s Bavarian hat. What’s the sense in having “normal” dinners, I wonder? ;)

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March 18th was Trisomy 18 Awareness Day. Nora and I posted this on Facebook to honor the day ~

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With this precious, animated, life-loving baby a part of our lives, it saddens me that the option to terminate her life was presented. I’m not pointing any fingers or placing any blame. It is a part of nearly every family’s story who has been given the prenatal diagnosis of trisomy 18. Some families take that route because they are pressured into believing that they are doing the right thing for their baby. They are misled into believing their baby will not have any quality of life. It is also a decision that is made out of fear. Generally speaking, people tend to fear what they don’t know or understand. With the rarity of trisomy 18, many doctors have little or no experience with the condition. I am not a doctor, but I can imagine that it might be a little frustrating or intimidating (frightening even for them as well?) to be presented with a case that in all likelihood they can’t “fix” or “cure”. I will say that when we made the decision to continue my pregnancy with Nora, my awesome obstetrician was visibly relieved and was fully supportive of that decision.

So here we are with Trisomy 18 Awareness Day, the purpose of which is to dispel the myths surrounding the diagnosis. Here are some general facts and information about Trisomy 18:

- Trisomy 18 is also known as Edward’s syndrome.

- Humans have 23 pairs of chromosomes, for a total of 46 chromosomes. Trisomy 18 is a triplicate of the 18th chromosome. (Sidenote: Down’s syndrome is a triplicate of the 21st chromosome and and also known as trisomy 21.)

- Trisomy 18 affects 1 in 7,000 live born infants.

- Trisomy 18 is not inherited.

- Trisomy 18 is not caused by something the parents did “wrong”.

- The third chromosome can be passed on from the mother or the father.

- Trisomy 18 can affect anyone and does not discriminate by age, ethnicity, or economic status.

- There are no cases of trisomy 18 that are exactly alike. It is unfair to assume that “one size fits all” with treatment plans and options.

- Children with trisomy 18 are so very much more than a diagnosis. They each add inestimable value to their families and to those who have the privilege of knowing them, no matter how long or short their lives.

Does this look like a little girl who has no quality of life?

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Heart sightings ~

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March 21st we got to see Wicked at the Aronoff. This was a Christmas present to the big kids (including KelKel) and an anniversary present to Nana & Papa. We had so much fun! We saw a sun rainbow on our way across the bridge into Ohio on our way there.

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That Saturday we got a special visit from Aunt Em and Uncle Josh all the way from Cleveland, Ohio! Uncle Josh was busy playing basketball outside with Gavin and missed photo opportunities!

“Dat’s my Aunt Em?”

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“Yeah. Dat’s my Aunt Em. I love my Aunt Em!!!”

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“Tanks for coming to visit me, Aunt Em & Uncle Josh! I sure do miss you and wish you lived closer to me.”

“Oh! Look! Der’s me in my mirror.”

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“Holy smokes! Did you guys see all my chins?????!!!!!!!!”

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Later that afternoon Greta and I went down for some creek therapy ~

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Playing in the creek never gets boaring!

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Sunday the 23rd we got together with the Familie for a much anticipated Rouladin dinner (incredible, mouth watering, favoritest of favorite German cuisines) at one of the German societies. Gavin & Greta were excited to see their cousins. They partook in some early Easter celebrations – hangin’ with their peeps.

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We had some live accordion music to accompany this fabulous dinner! It really doesn’t get any better!

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Nora had a busy, busy week after our busy busy weekend.

“How’s dis bunny outfit look on me? I wonder if da bunny will come to visit me?”

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The following Monday Nora had an appointment for a renal ultrasound. She gets an ultrasound of her kidneys and liver to detect any signs of something called Wilms tumors that children with trisomy 18 are susceptible to. When caught early these types of tumors are very treatable. Nora has never shown any symptoms, but we choose to remain proactive in her healthcare.

“Hi, Lady! You wanna see some hula moves?”

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Later on that same afternoon, a nurse paid a visit to give Nora her very last ever synagis shot (RSV vaccine). As part of the procedure, Nora needs to be weighed to ensure she’s getting the correct dosage. As you can see here, we’ve got a real big girl on our hands. She’ll just go on ahead and kick back on this little tiny scale pretending to be a tiny infant.

“Oh, wahhhh! I’m so so little! Someone swaddle me!!! Waaaaa!!!”

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She weighed in at 23 pounds, got a shot in each leg and settled right down in just a couple of minutes because she’s big now.

Nora got a real sweet heart in the mail from her friend Catherine in North Carolina.

“Tank you, Caffrinn! I love you too!!”

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“I have loved you with an everlasting love; I have drawn you with loving kindness.”
(Jeremiah 31:3)

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God is love. Whoever lives in love lives in God, and God in him.
(1 John 4:16)

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Here is Nora engaging in some belly time during her physical therapy session. She will tolerate being on her belly a little longer if we can distract her with being in motion — on wheels! She would really like for Living Room Bobsledding to be added as a sport in the Special Olympics.

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Ohhhh, look at all that sweet, sweet fuzz.

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“Hey! Don’t make fun of my fuzz!!”

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Last Thursday morning I placed my phone on top of a pile of laundry in the laundry basket that I was bringing downstairs. I said out loud to myself, “Do. Not. Wash. The. Phone.” Somehow in the middle of making scrambled eggs, sausage, cinnamon toast, packing lunches, unloading the dishwasher, administering antibiotics and vitamins, signing papers, washing bottles, breaking up fights, loading the dishwasher, fixing hair, untying knotted shoelaces and Windexing the kitchen table my phone ended up in the washer as I absent-mindedly tossed in a load of laundry. I had just got the big kids out the door and up to the bus stop and sat down to eat my own breakfast in peace and quiet while Nora was still asleep. I rustled around for my phone to check the weather when suddenly the horrible realization that my phone was in the middle of the spin cycle dawned on me, “Noooooo!!!” (A sprint to the laundry room shown in dramatic slow motion). Yes indeed… There was my unconscious, barely breathing, April Fresh phone. As it turns out, I ran and did the very thing I later learned you SHOULD NOT EVER do after your phone has been immersed in water. I plugged it in to see if that would help, which put it at risk for short circuiting. Oops. Meanwhile I’m FREAKING out that I had just lost all my pictures, calendars, contacts, text messages, ETC. Thank goodness for iCloud – I did not lose anything!!! If you ever find yourself as the unfortunate owner of a waterlogged phone, here is the advice I gleaned in my quest for its revival: leave the phone turned off and do not plug it in. Put it in a sealed container of uncooked rice and some silica gel beads (those delicious-looking and enticing DO NOT EAT packets that come with new shoes, etc.) Or you can use the silica gel capsules that came with your daughter’s hearing aide kit………… Allow the phone to convalesce for a couple of days. After a day or two, hold your breath, say a prayer, plug it in and turn it on.

By God’s grace and mercy my phone sputtered back to life. There were still some water marks visible beneath the screen, so I kept it on rice for a little while longer.

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It’s been a little over a week now. The water marks have since faded and all seems to be well!

“Phones don’t like water?? I don’t unnerstand dat one bit.”

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She gets a real kick out of things!

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Happy Opening Day for the Cincinnati Reds! It’s Nora Rosie Red!

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Nora cheered on the Reds from home while Daddy and Brudder were at the game representin’.

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And now without further delay, I would like to introduce you to our little standing girl!!

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Nora went to Redwood School to see if she’d have any interest in a stander. Not only was she interested, she was downright excited!

She’ll stand corrected!

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We should be able to have it for her by next week after all of the paperwork and everything is processed!


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

Be blessed!!

PRETTY

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She’s pretty popular, and pretty congested. Nora has the cold that we tried so hard to protect her from. Her oxygen requirements have increased and we had to get the dreaded suction machine out in addition to the Nose Fridas. She’s getting a couple of warm baths a day and we’ve got her feet lubed up with some essential oils (thank you for those, Katie H!!).

Sacked out early this morning ~
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A relaxing menthol bubble baff ~
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Today (Sunday) is Day 4 of this cold. She’s definitely on the mend and is in much better spirits, which was noticeable yesterday. She’s been very playful, but sadly her “squeaker” is broken, as Daddy put it. Her sweet little voice is hoarse!

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I was frantic with worry for the first couple of days and barely slept at all Thursday night. I commented that I’m soooo good about “fixing” other people’s anxieties, and then there I was pacing the floors and stomping my feet at God. I was momentarily knocked down, but I don’t stay there for long. I got back up on my feet. I reined my thoughts back in from their savage escapade with satan, “I trust you, Jesus! I trust you, Jesus! I trust you, Jesus….” and began to breathe again.

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“Do not let your hearts be troubled. Trust in God; trust also in me.”
(John 14:1)

When I am afraid, I put my trust in you.
(Psalm 56:3)

Drawing from Greta ~
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Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
(Matthew 6:34)

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
(John 14:27)

Since you cannot do this very little thing, why do you worry about the rest?
(Luke 12:26)

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

The onset of the cold on Thursday overshadowed the excitement of Nora’s new pink sparkly hearing aide acquisition!

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It was recommended that we try them out even though they would really only be of benefit in a classroom setting (or the like). Nora was diagnosed with mild to moderate hearing loss when she had her tubes put in back in September. This means that she may have trouble hearing soft consonants such as F and S sounds. However, since we are always in very close range when talking to her, she likely hears them. Nora without a doubt responds to different sounds.

When the hearing aides were first put on she was very quiet and alert. As it is, she is very interested and drawn to male voices (especially that of her Papa’s – and Matlock’s). She was really absorbed by the audiologist’s voice and listened intently for a few minutes. Then she figured out how to get her little finger under the tube and out it went! “Ehhhhh… No tanks!”

We’ve been instructed to let her spend a little time in them each day, gradually building on that time as she gets used to them. So we shall see! — And Nora shall hear?

Here are some pictures from the previous week(s) before Nora got her cold ~

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Pulling Mommy’s hair!!!
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“I still got deez dang teef coming in! Dey hurt my mouf!!”
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“I get some sister n brudder lovinz. I like dat!!”
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The ice in the trees sure was pretty to look at…
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But we’ll be kicked back in the warm baff, if it’s all the same.
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Daddy found a jelly heart!
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This is Nora’s new therapy chair on loan! It’s not the prettiest of contraptions, but it is great for getting her to sit up straight. In her Bumbo chair she has a tendency to throw her head back a lot and she kind of sinks down into it without having to use much of her abdominal muscles. The straight back of this chair keeps her sitting upright. It does have wheels on the bottom of it. I foresee some trips to the piano with her sister!

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She doesn’t like this chair for too terribly long, but she is getting a little better about it!

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One afternoon while I was working on the timeline video for Kelly’s Dad’s funeral and Kelly was sad in the living room, Gavin came running inside. “Come look at this rainbow!!” he yelled. I glanced out the window to confirm that it wasn’t raining. I went out on the front porch fully expecting to see one of the rainbow spots that show up to the right or the left of the sun in a patch of clouds as I used to see a lot of. Instead there was this — not a cloud in sight:

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It was well above the sun – and not to the side of it. You almost had to stare directly into the sun to see it, and it was arching in the opposite direction of the sun – an “upside down” rainbow? Kelly came to see it too. Suddenly we were no longer teary from staring into the sun – but because this rainbow positioned directly above the house was recognized for what it truly was. A SMILE directly from heaven – for Kelly. I honestly have never seen anything like it in my life!

More pictures from the previous weeks ~

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“Dem kids are crazy.”

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“Eenen dey leave me to go to school… Pbltbplt!!!!!”

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“I guess I’ll just be in da baff.”

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“Eenen I’ll be in Mommy’s studio office. Is it her ‘Stu-ffice’ then?”

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“Sup.”

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“SHHHHHHH!!!!! I went night-night.”

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Norns had a little visitor in the baff!

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“Lady bug, lady bug, fly away home…”

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When Mommy was sick.

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A heart from Greta’s orange ~

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This cloud looked like a giant feather across the sky ~

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And then I went down to the creek on another perfect afternoon ~

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I saved a wasp from drowning ~

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Hearts ~

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Later that perfect day, Lady Baby went out on her first walk of the year!!!!

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“Dear Winter. Please, please, please go away. We’ve had enough. I want to go on more walks!!!”

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Looking for the sunshine ~

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Onset of her cold ~

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She has a little heart on her cheeky!

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And now these three remain: faith, hope and love. But the greatest of these is love.
(1 Corinthians 13:13)

Beauty in the Broken

I added 20 pictures on this post in draft status weeks ago, but have been sidetracked with life and everything in it. Now I’m not even sure where to start in writing…

A mild cold virus made its rounds through the family, which was a bit of a challenge and an inconvenience. Kelly, Nora and I managed to evade the first round. Now something else has crept in the door and into our sinuses. My throat is annoyingly sore, and it seems that Gavin has the same symptoms now too. If Gavin weren’t sick again I would have assumed this was my turn for the first cold. This seems to be something new altogether.

Now here I am laying in bed at 3 am worrying. Worrying. As if that were going to help anything. Hospital flashbacks scratch through my thoughts and I’m wondering if the surgical mask I’ve been wearing around Nora is enough. “What if she gets this???????” satan whispers in my ear, “What if she doesn’t make it to her second birthday???? She was so close!!!! What if this kills her??????” and on and on and on. So I pause. And I breathe. There are no “what ifs” with my God. You can taunt me and whisper all you want, but I will not budge from my faith and all that I KNOW to be true.

I am particularly fragile in my thoughts because We’ve recently (again) been reminded of the fragile balance of life and death. Our Kelly’s father passed away suddenly in his sleep 12 days ago. He was only 48 years old. My heart is so broken for her. According to OUR plans, people are “not supposed to” leave this earth so soon and so suddenly. But from time to time they do and the pain is unbearable when measured by our earthly standards. I find myself feeling sorry for the departed loved one and everything I imagine they will now be “missing out on” here on this earth with the rest of us.

However, as it is written: “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)

The indescribable / inconceivable REALITY of eternity is an irresistible and natural progression for the fully developed soul. There is nothing left here on this earth that could possibly be preferable.

I might not be able to fully grasp the promise of new life in Eternity, but I believe and hold onto that promise, literally as if my (new) life depended on it. I know that it will make perfect sense someday and none of this will matter any more. I never had the pleasure of meeting Kelly’s Dad, but if he can somehow read this from his indescribable paradise I want him to know that his daughter will always have a place in our family. We love you, Kel!

Nora has been doing awesome. I think she is officially “giant” now. She weighs 22 lbs. and has been cultivating quite the collection of teeth! She has 3 front teeth still and 3 big molars that have popped through! She’s Mommy’s big giant lump of sugar and it is absolute TORTURE not to be able to sniff her and kiss her sweet, sweet skin through this surgical mask.

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Pictures from the past few weeks ~

“I’m inna baff. Big surprise, right? I still love my baffs!”

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Happy Lady Baby!

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Blowing kisses ~

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She’ll just sit up on the table during dinner time. She don’t care none! That’s what she likes!

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Greta finds hearts all over the place!

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“I got hearts in my eyes!”

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“An I’m real pretty girl too! Soooooo…..”

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If anyone has any beans that they need thrashed, this baby might be able to help you out. Here’s her demo(lition) video:

“Hey look! Der’s me up der!”

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Hearts on the sidewalk ~

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Sweetheart in the baff.
“Aaaaahhhhhh. An someone argued dat I might not have quality of life??? To dat I say HA HA HA!!!”

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Greasy heart? Sure! Why not!?

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“Um… Dat’s kinda diff’rint!”

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Here is Nornor playing with her Magic Fingers app. It’s no chain mirror, but it peaks her interest for a few minutes!

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Three weekends ago the snow storms and I had some downtime. I used the opportunity to go for a walk by myself in the woods and down to the creek. The weather was perfect.

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As I stood in the middle of the creek, the wintry water coursed and eddied over my thick rubber boots. It’s chill tampered with the warmth of my dry socks on the other side in an exhilarating way.

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I bent down to pick up a shard of china out of the water and was momentarily surprised by what I discovered on the other side. The smooth stark white of the porcelain against the bed of gray creek rock is what caught my eye. It was only after I picked it up and turned it over that I discovered the true beauty of it.

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I was reminded in that moment of the beauty in the broken. I looked all around me for more pieces of this plate and saw nothing. Just because I couldn’t see them doesn’t mean that they don’t exist. The beautiful piece that I held in my hand was obviously part of a bigger picture, part of other pieces that fit together to create the whole. Isn’t that just like life? Some of the pieces like this one show glimpses of the “big picture”, other pieces are plain white. Without the other pieces it would be impossible to figure out what purpose the blank ones serve, but they are no less important. Perhaps others have sharp, painful edges, but they too serve a purpose as part of a greater whole.

As it just so happens, there is a song called “Beauty in the Broken” by Hyland. These are the lyrics:

Looking at your pain an inch away
It’s hard to see the plot
You wonder if your story’s gonna change
You don’t know you’re
Too close to find the hope the light
Don’t know just why, you are breaking
I know that you want to let go but…

Let me hold you through it
Let me carry you
I know if feels you’re at the end
But here your story’s just beginning
I know your tomorrow
I know where you are
Though you can’t see past the moment
I see beauty in the broken
I see beauty in the broken

Looking at your life from where I am
I promise you that
All your dreams and all your greatest plans
They don’t compare to
My hope for you my love can do
Way more than you can imagine
I know that you want to let go…

Let me hold you through it
Let me carry you
I know if feels you’re at the end
But here your story’s just beginning
I know your tomorrow
I know where you are
Though you can’t see past the moment
I see beauty in the broken

So let the pieces of your heart fall into my arms
I wanna be your hope, so won’t you let me
So let the pieces of your heart fall into my arms
I wanna be your hope, so won’t you

Let me hold you through it
Let me carry you
I know if feels you’re at the end
But here your story’s just beginning
I know your tomorrow
I know where you are
Though you can’t see past the moment
I see beauty in the broken

Matters of the Heart

“Oh hi! It’s me, Norns! I’m inna baff.”

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“You can look in here and not see anyting but deez tree (3) teef.”

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“But I’ve got some secret teefs in der.”

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“Dey’re way back in der. My big cheekies are hiding dem from my Mom n Dad n everybodies for right now.”

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“Maybe I will send a little birdie to tell dem!”

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“Dey can’t figure out why I been getting real fussied about some tings. I sure enjoy my lovings though.”

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“February 7-14 is Congenital Heart Defect Awareness Week. I wore my pretty heart outfit to show my support!”

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On Saturday (February 8) we went over to Nana and Papa’s house to celebrate their anniversary and Aunt Em’s birthday. Norns is always excited to get out of the house!

“Buh Bye!”

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We usually take the ferry to get across the Ohio River to get to Nana and Papa’s house, which is what we decided to do this particular afternoon. Nora got a little impatient while we waited for two slowpoke coal barges to pass, so we got her out of the constraints while the car was in PARK and TURNED OFF. We posed her in this picture for a text message to razz Aunt Sarah who is a Certified Child Passenger Safety Technician. She won’t stand for this type of shenanigans from any of her peeps. PLEASE DO NOT TAKE THIS PHOTO OUT OF CONTEXT – NO BABIES WERE HARMED OR PUT IN DANGER IN THE MAKING OF THIS PHOTOGRAPH!

“Dis is kinda fun! Am I big now?”

And then Nora drove us the rest of the way to Nana and Papa’s house.

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William and Aunt Sarah with their baby boys. Awwwwwwww!!!!!

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Norns gets some loves from her Oma.

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Gavin and his little cousin Keira are BUDDIES. They are incredibly sweet with one another!

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Nana and Mommy with an ENORMOUS baby girl.

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We had such a nice time, as we always do together! Happy Anniversary, Mom & Dad! We missed you, Aunt Em and Uncle Josh! We hope your birthdizzle was fabulous, Em!

And so starts another week back home.

“Oh, I thought dey said dey wanted my FOAM number. Well here. Dey can have deez anyway.”

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Greta was awarded a Wildcat Award at school which recognizes her for exceptional CATS pride during the month of January! I’m so glad I got to be there for the assembly! We’re so proud of you, Greta!

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Later in the day, poor Nornz had an eye appointment where they had to dilate her eyes. They had us wait out in the lobby for 20 minutes until the drops took their desired effect. Nora was NOT happy and kept arching her back. As luck would have it, I had her sunglasses still stuffed away in the diaper bag from the good old days at the pool. As soon as we put them on her, she was completely happy and arched no more! She’s such a super star, she should just wear them anyway.

“Nobuddy likes deir eyes dye lated.”

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Medicine heart

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Cloud heart

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Sun spot heart (on carpet in front of car seat)

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Sweet heart kissies from Mommy

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Gavin was all dressed up for his speech assignment. He chose Woody Hayes to give his presentation on. We thought he did very well in his rehearsals at home! I have been forbidden to publish the video.

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Nora gave a speech on baffs.

“Deez baffs are warm an fun an nice.”

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“I get to stay nice and warm instead of going out in colds! Nah nee nah nee boo boo!”

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“Wait. What? I have a very early morning cardiologiss pointment on Tursday?”

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“I’m not sure how I feels about dat.”

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“Yyyyeah. It’s wayyy too early and cold out, peoples.”

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“I’ll be a real good girl, however!”

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“An before I knowed it, I was back home.”

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“An da greatest part? My heart looks real good! I got a good report at da cardiologiss!”

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This baby deserved a long awaited bath for being such a good girl at the hospital. She got herself real tired and had a little baffnap.

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Uh oh!!! Someone is growing a little RAT TAIL!!!

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Valentine’s Day

“Aaaaaa!!!!! It’s Balentimes Day!!!!!!!! Dere’s hearts EVERRRRYYYWHERE!!!!”

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“Hmmm. I guess dat means I have to choose a Balentime! Hmmmmm…. I tink I chose EVERYBODIES!”

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Ohhhh, and what a nice Valentine’s present to FINALLY have her Kelly home!!! We missed you, KelKel!!

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The weather outside is frightful, and apparently so are a couple of sibling’s behaviors. I think Greta had endured a few too many snowball pelts and went after her brother in a blind rage! Gavin allowed himself to get “beat up” for a bit. Greta saw me taking pictures from the window and came running inside to take on the role of poor harassed innocent little sister in an attempt to score some sympathy. “Naw, baby, naw. Mommy saw you out there smashing your brother’s face in the snow and I have pictures to prove!!” ;)

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And the needling big brother was of course momentarily locked out by his vexed little sister.
(Incidentally, this picture makes a great home screen for my phone giving the appearance that he’s “stuck under the glass”)

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So as it turns out, Nora has been secretly growing a couple of top molars! It’s hard to look back into her mouth without making her gaggy. We weren’t really expecting any molars yet since her front teeth hadn’t all made it in yet! She’s a tricky baby!!! And very, very, very chewy!!!

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She gets herself tired!

“Come to me, all you who are weary and burdened, and I will give you rest.”
(Matthew 11:28 NIV)

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My own heart flutters each time I see one of these hearts. God is so very real and so very present in every aspect of my life. Each heart sighting reminds me of that.

For the word of God is living and active, sharper than any two-edged sword, piercing to the division of soul and of spirit, of joints and of marrow, and discerning the thoughts and intentions of the heart.
(Hebrews 4:12 ESV)

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Pensive droplets cling to the glass with vague recollection of the vast ocean. Their transitory assignments on my windowpane disappear with the morning sun. Barely discernible wisps of vapor announce their ethereal departure to the sky. A nebulous journey back to the sea. Home.

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Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.
(James 4:14)

I used to find this verse depressing and foreboding, but in reality it is only pointing out how short this life is. That’s not necessarily a bad thing, I’ve come to realize. It is a reminder to make the best of my time here on earth’s windowpane. What really matters?

Good Ship Lollipop

I had so many pictures and tidbits from the last few weeks that the previous blog post was starting to resemble a big giant endless run-on sentence. I figured I would afford our dear readers the opportunity to take a stretch, visit the concession stand, etc.

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(“Gone With the Windies”)

And now the second half ~

Last week Greta had an assignment due which required her to research a public figure in the arts or politics, past or present. She then had to give a presentation dressed as that figure. Greta chose Shirley Temple. I found out Tuesday morning that my (and now Greta’s) beloved childhood star had passed away at age 85. I was a little worried about breaking the news to her. After I told Greta that Shirley had passed away she was momentarily saddened, but her face lit up as she commented, “Yeah, but I’m SURE she’s in a much better place now.” Wise beyond her years!

In tribute to Shirley, here is Greta:

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We rolled her damp hair in foam rollers the night before. Aunt Sarah’s old dirndl dress seemed “Heidi-esque” and served as the perfect costume.

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The parents got to come up to see all the kids give their presentations in the “wax museum”. Greta was very nervous, but did AWESOME!! I was so proud of her!

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All of the kids did such a great job! It was obvious that a lot of hard work and practice went in to their projects!

More hearts around the house ~

Cheese heart

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Cinnamon toast heart

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SWEET heart

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The little sweet heart looks so pretty trying on some of her new outfits ~

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Oh, but wait! She went and got herself all tired.

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And now she’s back. Her sister loves her! She knows it too.

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Green bean heart “accidentally” dropped on the table ~

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“All deez hearts! We sure feel loved!”

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“An my brudder loves me so much too!”

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The kids and I went for a freezing cold walk along the river to expend some snow day energy after being pent up in the house for days on end. For the most part I was too cold and agitated with miscellanies to bother with pictures, but I couldn’t let this one go uncaptured ~

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This past Tuesday Nora got to pay a visit to Redwood School and Rehabilitation Center to try out some new seating options. Here she is in the Ladybug chair which was especially adorable!

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Unfortunately Norns neglected to bring her patience and manners with her and wasn’t very cooperative for the rest of the visit. I think we figured something out for her though!

In the mean time Nora enjoys hanging out in her Bumbo with her sister.

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And now these three remain: faith, hope and love. But the greatest of these is love.
(1 Corinthians 13:13 NIV)

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Home Sweet Home

I was so anxious to get home from the hospital and to re-establish our routines. However, it seems as though the Big Kids have been out of school on snow days more often than they’ve been back.

Thennnn to top it all off Our Kelly ditched us for the sunny warmth of Florida for 3 weeks to visit her Mom, and to make us writhe with jealousy!!! We miss you, Kelkell!!!!!

I am excited and happy to report that Nora has been getting along fabulously since she’s been home. She’s back down to her regular flow of oxygen with only an occasional need to adjust it while she’s asleep.

“Oh, hi! I’m so sorry to have worried everyones! I’m all bettered now! An I’m excited to have my brudder n sister home wiff me all deez days!”

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“Boop boop dee doop! … Mommy was trying to give me a Downton Abby hairstyle. I tink I looked like Betty Boop!”

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“Wait till you see what I got coming in – in my mouf!”

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Gavin went to work with his Dad, so Greta and I headed off to Color Me Mine to paint some pottery. Norns was safe and warm at home with her nurse!

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We heart painting!

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Can you believe all of the cardinals?! They’re so beautiful against the stark contrast of the dismal winter sky and branches.

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Coffee heart

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Nora loves her piggy!

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Nora woke up extra early. We decided it would be best to watch the sun rise from the warmth of the baff since it was way below zero outside!

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“Dis is what I lyke!!!”

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We smile over spilled milk.

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This baby has lost her marbles!

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And she’s extraordinarily chewy!

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Birds Three ~

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Our indoor snow angel looking out at the cold ~

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We heart cookies!

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The Big Kids took advantage of a warmer day to explore the snow covered woods. I never imagined we would ever consider 38° as “warm”!! I was able to keep an occasional eye on them from the upstairs windows:

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I decided to save the dirty dishes and vacuuming for later and headed out to join them. My stealthy footsteps and subpar coyote impression were met with an exasperated, “Mommmmyyyyy.”

The woods were so quiet but for the crunch of the icy snow beneath my boots and a couple of little voices conspiring on how they were going to build their snow shelter.

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A frigid rivulet of water trickled through the ice.

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And an undisturbed fleece of snow outfitted the slumbering branches.

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Their primeval instincts of survival transmuted into play. If I didn’t have a 90 degree hill to climb back up I would have got some old blankets and some Cheez-its and bottled waters to “sustain” us! (Better planning next time!)

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I don’t so much care for the cold of winter, but when I am willing and able to look past the immediate discomfort of it, I do notice the beauty of this least favorite season. The same could be said for my own seasons of life. The hearts still exist whether I bother to notice or not.

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Meanwhile, back inside and on a different day altogether… Nora thinks Daddy is completely hilarious ~

{Video}







Sister is pretty funny too!

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“Ummmm… I have sumpteen bery important to announce.”

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“TA DAAAA!!! I hereby announce the celebrated appearance of my top toof!”

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“I guess dat makes me a pretty big girl!”

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But if we hope for what we do not yet have, we wait for it patiently.
(Romans 8:25)

Eddies

As 11 year old boys, they had their whole lives in front of them. By a “stroke of luck” they became neighbors, but it was their mutual quest for friendship and acceptance that drew them together. The unspoken childhood law of expected uniformity set the spotlight on their differences and for a time labeled them as “outcasts” in upper-middle class suburbia. Perhaps that’s what softened the Arabic Kid’s heart toward the New Kid’s heart, and vice versa. Billy (as he was known then) and Ed forged a binding friendship that would last on into forever. That circle of friendship stretched and grew to include many others through the high school and college years, but Billy and Ed always held a special place in their hearts for one another. First girlfriends, break ups, parties, sports, first jobs, learning to drive, practical (and sometimes impractical) jokes, college, and then on into adulthood, they were always there for one another. They supported one another through the adjustments of marriage and fatherhood, the circle growing to include the brides and the babies — the wives and the kids. Their careers and families sent them off onto different paths, but the brotherly bond of friendship persevered. Whether an impromptu game of poker or a backyard barbecue they easily picked up right where they left off. Fortunately for Billy and Ed they never lived out of driving distance from one another. Even though they saw each other from time to time they always figured there would be plenty of tomorrows to plan the more frequent get-togethers and outings.

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The news that Ed was gone took the breath out of my lungs as I listened to “Billy” trying to reason with the person on the other end of the phone line. No. What? How? Why? No! Ed!? Ed?! I knew. He knew. But it didn’t and it still doesn’t make any sense — to us, to the ones left behind. The physical heart of the tender-hearted Ed had stopped beating after 41 years of faithful service, leaving behind his beautiful heart-broken wife, their 3- and 5-year-old daughters, and a sea of family and friends who will miss him dearly.

It was a gray and colorless day, the day we said goodbye. “The coldest day of the year yet,” I’d overheard. The sharp cold was ineffectual to the numbness of grief that had already instated itself upon everyone. Out of habit I was thankful for the scattered warmth of sunshine that fell upon my shoulders from the window behind me. I listened to the Arabic chants — soulfully aware of their sanctity though not able to understand them. The acrid smell of the incense, a chip in the smooth surface of the wooden pew beneath my fingers, and the surging wails of mourning from the front rows of his devastated family. My eyes met the ornately painted saints and apostles looking back at us from the altar, flecks of dust and a wisp of incense in the sunlight, and suddenly they motioned “Billy” forward. He looked around, uncertain if the gesturing were intended for him. The nods propelled him forward, his notes in hand, he approached the podium. Nervously but confidently, he took the spotlight — no longer the New Kid, but as the old friend of almost 30 years, known now as William. The tears and lamenting were temporarily abated as the crowd listened to stories of goodness, of shared friendship, of laughter and of love. Although some may not have been able to understand his spoken words, they too were soulfully aware of the sanctity of their mutual love for this man that not even death can squelch.

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The casket was reverently carried from the shiny white hearse to the burial service within the warmth of the chapel. The branches above bore tiny implications of spring. I was reminded in that moment of the promise of new life, rebirth and eternal glory. Ed’s. Ours.

For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.
(John 3:16 NIV)

‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.” He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.”
(Revelation 21:1-5 NIV)

Musics

While we were in the hospital we played a lot of music for Nora. It seemed to relax her, perhaps reminding her of home and her baths. Bath time is often coupled with the Heavenly Lullabies station on Pandora. One evening we had Nora sitting up in her Bumbo and put the music on for her. The very first song that came on was called Miracle by Renee & Jeremy. These are the same artists that sang the rendition of Three Little Birds that played in the background of the video I took while Norns was asleep. Now after hearing this second song by them, I am completely in love with them. Miracle came on again during a baff session. What a perfect song for her ~







Imagine how the chills ensued when I went to purchase the song off of iTunes…

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Notice the release date… Nora’s birthday… 5 years before she was “released”. {!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!}

In addition to the music, Nora got lots of pretty pictures delivered to her. Like the music, the pictures added some cheer to her hospital crib. There were three paintings in particular that we were especially touched by.

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These were sent to us by a sweet family who has been on their own incredible faith-building journey. Their son Brodie was diagnosed with leukemia in 2011 when he was just 5 years old. They also happen to live in our old house. Brodie’s mom has kept a beautiful account over each step of their faith walk to remission, over relapse, and to remission again on her own blog. With Sarah’s permission here is a behind-the-scenes excerpt about these precious paintings:


Last week the kids and I sat down at the dining room table, water and brushes and paper and bright rainbow colors spread around us, and we set to work painting some pictures for a little friend who is in the hospital. Brodie dipped his brush in the green and began creating the leaves of an apple tree. Jenna dove into the red and painted the gentle, curvy lines of a heart. I brushed water on my paper and then carefully placed purple and watched it spread. We are not quiet painters, and we talked about our friend and our hope that she would feel better and our plan to deliver some smiles. I watched as the apple tree grew and as the heart took shape, and we waited (not so patiently) for the colors to dry.

And then I looked over at Caleb’s paper.

It was every color fiercely mixed into one masterpiece. With a mashed brush in a fisted hand he added blue on top of red on top of yellow and the primary color of his painting slowly became brown.

And he was smiling while he worked.
And I smiled while he worked, because his painting was a picture of my heart, of our lives, of our story these past few years. Bold and messy and not always so beautiful to us. But a masterpiece to this Creator who stands back and smiles both at His own work in our lives and also our faith work of glimpsing His fierce brush strokes and bold color splashes among us.

Aren’t you glad that there is Someone who sees the bigger picture of our lives? Aren’t you glad there is Someone who sees not just the speck of blue or green before us but the whole rainbow that was last year and yesterday and two weeks from now and ETERNITY?

I am! (And I’m thankful for little boys with smudgy, painty elbows who are walking reminders of Truth…who paint pictures that may only be beautiful to their mommas and have no idea that their beautiful messiness was just what their mommas needed to see. :) )

Love this!!

Brodie’s painting features Nora swinging in the apple tree. Perhaps it’s the same apple tree in Brodie’s backyard that Nora’s brother and sister used to play in when they were little. Thank you, Brodie for letting Nora have a turn in it too! Would you believe that another “perfect song” came on while we were in the hospital called Apple Tree?

Apple Tree
by Justin Roberts

I am a little apple seed
Sitting on the ground waiting to be
An Apple tree, an apple tree

Everyone tells me that I’m oh, so small
And I’m never going to grow to be big and tall, big and tall
But I tell them wait and see

Cuz I’m gonna be like an apple tree.
And I’m going to let all my branches run free.
And I’m going to reach way up to the sun and open my arms for everyone

And like an apple is sweet I’m gonna be so sweet
And like an apple shines in the sun,
Shine the light* on everyone

Cuz I’m an A.P.P.L.E., apple tree
An A.P.P.L.E.

* The name “Nora” means “light”







“You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.
(Matthew 5:14-16 NIV)

Keep me as the apple of your eye; hide me in the shadow of your wings
(Psalm 17:8 NIV)

Homebodies

It is so very good to be home – for everyone! We enjoyed an easy Sunday morning. Nora thinks it’s hilarious when Greta taps her head and rubs her belly ~

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It’s not even sort of amusing when someone else tries to do it. Greta has the special touch!

Daddy made pancakes and we all sat at the breakfast table together.

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There’s nothing better than long baffs!!

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And long naps at HOME ~

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Gavin & Greta spent the night at Nana & Papa’s Sunday night and were gone much of the day doing fun stuff. William was back to work finally after having been gone so long. I have to give an enormous shout out to his outstanding and exceptional employees who kept the gears turning while he was away. No one wants to be in the hospital with a very sick child, but to have the luxury of my husband by my side at every possible moment was an incredible blessing. I know Nora needed her Daddy there too. We THANK you from the bottom of our hearts for all that you do!!! You really have no idea!

Since everyone was away, why not stay in the baff for almost 2 hours trying out new hair styles and practicing kissy kisses?

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Everyone was back home that evening. Norns got some whip cream from her Brudder after the rest of us had a delicious turkey chili dinner from Nana.

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“Diss stuff isn’t so bad! I can kiss it maybe?”

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Evening cuddles while watching Gilligan’s Island. Looks like someone is getting her fuzzy hair sniffed ~

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Brudder’s turn!

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“Dis is kinda neat!”

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Hearts ~

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The kids noticed a heart on the front porch during ANOTHER day off school. Lots and lots of snow!

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That’s how God’s Word vaults across the skies from sunrise to sunset, Melting ice, scorching deserts, warming hearts to faith.
(Psalm 19:6 MSG)

Rounding A6 and Heading for Home

The first full day back on the main floor was the first day that Nora did not have a fever.

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“Doze peoples over in CICU? I’ll give dem someting to keep dem on dere toes!”

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William was given clearance by our doctor to come visit, and was also reassured that he wasn’t developing an ulcer. He was feeling much better. We were so happy to see him!

“Is? Is dat really… you… Fodder?”

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Their hearts are secure, they will have no fear; in the end they will look in triumph on their foes.
(Psalm 112:8 NIV)

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Norns got her ND tube removed, her PICC line removed, AND she got to come off of the monitors. It was so nice to have JUST the oxygen line.

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Nora was finally able to wear some clothes again! How sweet to see her in her pajamas!

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Nora had been awake and happy for much of the day with minimal napping. I had been looking forward to another semi-restful night, assuming she’d be ready for some good stretches of sleep. I insisted that William go back home to get some sleep. Norns and I did just fine the night before, and we could do it again.

“Mmmmmyeah… Well… I’m just gonna go on ahead and stay up squealing and playing till 4:15 in the morning den.”

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Yes, Nora (and Mommy) were up practically the entire night long. I was FINALLY fast asleep on the luxurious plastic chair pullout bed dreaming about shoes and glasses for some reason. (“So I have them.”) In what seemed like only a few minutes later I was being tapped on the shoulder by a nurse to let me know the rounding doctors were there. I jumped up in a semiconscious stupor and skittered over to the door to face the panel of professionals in my frumpy pajamas and floppy socks half on. I was trying to pretend that I was fully alert, that my hair wasn’t standing on end and that the light wasn’t punitively searing my eyes out. I nonchalantly smoothed my hair and listened as they discussed Nora’s current status, her medicines, their dosing schedule and prescriptions. When they told me they were okay with Nora being discharged today, I was given a sudden surge of energetic ambition! No mind that I just got 3 hours of sleep and certainly looked it — WE WERE GOING HOME!!!!

William was back on site at 8:45 AM. Discharge papers in hand, we were walking out the door 3 hours later — WITH OUR BABY!!!!!!

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“Dis is kinda different?”

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“Is dis my car???”

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There were 2 big kids and a dear baby who were pretty excited to finally see each other:

First things first, this poor stinky baby hadn’t had a REAL baff in almost two whole weeks!!!

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Naked cheekies!!!!!

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So now we are home, trying to get re-acclimated to real life again, looking about us and taking rest in our safety. We made it through that fiery inferno!!!!

“Yet if you devote your heart to him and stretch out your hands to him, if you put away the sin that is in your hand and allow no evil to dwell in your tent, then, free of fault, you will lift up your face; you will stand firm and without fear. You will surely forget your trouble, recalling it only as waters gone by. Life will be brighter than noonday, and darkness will become like morning. You will be secure, because there is hope; you will look about you and take your rest in safety. (Job 11:13-18 NIV)

This third I will put into the fire; I will refine them like silver and test them like gold. They will call on my name and I will answer them; I will say, ‘They are my people,’ and they will say, ‘The Lord is our God.’
(Zechariah 13:9 NIV)