Category Archives: Quote

Adventures in Communication

I hope to share more formally about our adventures in communication with June, specifically the use of American Sign Language, verbal speech development, and her assistive communication device. However, for a few months I’ve been savoring some much needed rest and protecting a “margin” against over-busy-ness in my life and that of the kids, which has led to postponing blogging. This little scene was too enjoyable not to share though.  This is a little of the linguistic fun we are having over at the Safari House:

adventures-in-communication

The kids and I arrived at the speech therapy floor of the hospital for the last appointment slot of the day.  Only one other family was there- a mother, father, a preschool-aged girl and an infant.  My phone had died so I said to the father, “Could you tell me what time it is?” gauging his reaction to see if he understood English.  When I saw his uncertain expression I signed TIME as I repeated my question, since pointing to your wrist is a pretty universal gesture.

“Ah, yes!” He said. “Four……forty five?” he said.  I thanked him and we turned our attention to the kids, who were hoping to play together.  Rowan invited the girl into the playhouse he and June occupied:

“Would you like to sit?” he said repeatedly to her.

The girl was uncertain as her father walked with her to the playhouse, whispering to her to say “hola.”  I mentally dusted off my Spanish and attempted to translate Rowan’s question.

“Rowan, tell her ‘quieres sentar?'” I said.

“Um, can you tell her?” he replied.  But the girl and her father were excited about this development nonetheless.  In our short time together, we all proceeded to have a conversation of comical multi-lingual proportions.

“How…..she is old?” the father asked in English.

“Three years old in….” I attempted in Spanish.  “Octobrie? Octiobray? Um, October.”  I said.

June began signing in ASL about the family’s infant daughter, and I attempted to translate this into Spanish.

“She uses the language of the hands,” was my best try at saying ‘she signs’ in Spanish.  I didn’t know the Spanish word for “bee” so my attempts to explain that June liked the bee on their child’s rattle were not fruitful.

To add to the fun, June pointed to a sign (as in a printed notice, not an ASL sign) on the play area that I had reviewed with her earlier.

“What does that say?” she signed (as in ASL sign not a printed notice) while I was speaking with the mother.  The notice was written in both English and Spanish, and in hopes of including everyone in the conversation, I signed ASL while I read the English then signed the ASL again while trying to get the vowel sounds right in the Spanish.

At one point, June was admiring the infant’s pink shoes, and I hoped I learn the Spanish word for “pink.”

In Spanish I said, “How do you say…..these shoes are…..” and at this point I realized I forgot the Spanish word for “color” since the similar ‘calor’ means ‘hot’ so I signed COLOR in ASL which was not helpful at all.  So I continued in Spanish, “like….red, orange, blue….” signing the words simultaneously for June.

“Oh,” the father said, pointing to the shoes. “Rosado.”

“Rosado is ‘pink’ in Spanish,” I said and signed for June.

When we parted, we adults said our farewells in Spanish with English words throw in, their little girl had warmed up to her new friends and held Miles’ face lovingly for several seconds as a goodbye, and June surprised us all by piping up with her ever-growing speech skills and saying in Spanish, “Adios!”

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An Election Conversation With My Kids

election-conversation

One week ago, the kids and I ventured out to the polls for early voting.  The “big kids” (my 5-year-old, Rowan and my 3-year-old, June) had decided who they would vote for, hypothetically, by watching snippets of the debates.  This was our pre-voting conversation- June contributing in ASL.

Me: OK, guys, let’s go vote!
June: I’m scared of boats.
Me: Not boat. Vote.  V-O-T-E. [I showed her the ASL sign VOTE  see here.]
June: Vote, not boat, V-O-T-E. What’s vote?
Me: It’s where I pick who I want to be in our government.
June: Who you vote for?
Me: I’m voting for Hillary Clinton.
Rowan: I’m voting for the same person, the girl in the red shirt [in the first debate].
June: I vote for the moon and stars.
Me: That sounds good, June.  The election is very important because the people who we elect make decisions about our whole country.
Rowan: Maybe our president will help Ms. Clinton.
Me: Probably, because our president and Ms. Clinton are in the same political party.
June: OOh! I go vote. See the party.
Me: It’s a different kind of party. Ok, let’s go vote!
June: I vote. Not boat. With talker in my backpack. [Her new AAC device to communicate with people verbally.]

The kids and I excitedly made our way to the early voting location, which was conveniently located at a church that we frequent for Deaf ministry events.
Me: Ok now, we gotta be quiet while we choose.
Rowan: Why?
Me: So other people can make their choices too. What’s happening here is very important.
Rowan: Why?
Me: Well, whoever wins will be president until you are nine years old. And we want to pick the people who will make the choices that we want them to.
June: I pick the stars and moon and water.

While explaining our voting experience to Greg, later–
Rowan: We picked Ms. Clinton!  She’s our president now.
Me: No, actually, we don’t know who won yet. Everyone in the country gets to vote, then only one person wins.
Rowan: Why is that?
Me: Because our country only has one president, and everyone gets to vote for which person they want to win.  On election day we’ll keep track of it on a big map and find out who the next president is.

Tomorrow is the big day!

Follow along with us tomorrow using the electoral college map printable or digital version and other free election resources from:

Scholastic News 

C-SPAN Classroom

Smithsonian Education

 

Post-Hospital Top 20 Playlist- Christian

Here is the exciting conclusion of the playlist posts.  Last week’s blog highlighted the mostly not-specifically-Christian music that meshes well with our numerous inpatient hospital stay adventures.  Only two “Christian” songs made that list, and I outline several reasons for that in the earlier post On the Insufficiency of Christian Music.  However, there are some gems to be found in the pit that is the Christian genre.  The songs below speak to me for various reasons- just not during adrenaline-filled hospital stays.

In no particular order:

Blessed Be Your Name- Chris Tomlin

What I like about it: I became a Christian at 16 during a very difficult time in my life.  In fact, the decade following was to be filled with one crisis, danger, or source of grief after another. I knew nothing about actual Christianity before age 16; previously I figured from observing the youth-group cliques at school that “Christianity” was just a bundled component of the “shiny, happy” white upper middle class culture, like shopping at Abercrombie and playing a sport.  I wanted nothing to do with that culture which seemed oblivious to real life and hardship, and for the most part, the feeling was mutual.  But at 16 I was invited to a different kind of youth group, aimed precisely at kids like me who were outside of the the mainstream, preppy, sheltered, grew-up-in-church fold. They sought out the kids were not “shiny and happy,” the smokers and the skaters and the angry and determined. There I learned the basics of Christianity- the story of sin and death and repentance and redemption- but more importantly, as I read the Bible on my own and explored this “spiritual stuff,” I personally found there is something tangible to it.  My faith grew as an independent force- separate from the church, peer pressure, and expectations of others (both in support of and against my faith); I actually left that youth group shortly afterward because I felt their extreme fundamentalist approach was out of line with what I understood and discerned to be biblical teaching. I mean to say that I actually reliably experienced guidance, peace, and growth on a spiritual level when I was seeking it through prayer and the Bible. Those tools are the only way I weathered all of the events in my life since that time. This song has always embodied all of that for me.  My understanding of and experience of Christianity bears no resemblance to the sheltered, privileged life that I (perhaps unfairly) perceived the youth group kids at school to be living.  It also bears no resemblance to the “prosperity gospel,” which implies that sincere pursuit of God always leads directly to material wealth and well being for the Christian.  I understand the Bible to consistently say that life is “full of trouble” (Job 14.1), that there is a “time to weep and a time to laugh” (Ecclesiastes 3.4) and that Paul describes being, “…under great pressure, far beyond our ability to endure….but this happened that we might not rely on ourselves but on God” (2 Corinthians 1.8-9).  This is why it bothers me so much that there are very few Christian songs that address suffering as a natural part of our spiritual life.  They tend to dismiss it with a platitude like, “When I’m down, God will raise me up!!” as though it shows a lack of faith to mention suffering for me than just a microsecond.  I believe this song captures one role of suffering in a Christian’s life very eloquently in the line, “Though there is pain in the offering, blessed be your name.”

Lyrics Highlight: Though there is pain in the offering

Blessed be your name

Along These Same Lines: If You Want Me To- Ginny Owens

 

What Do I Know of Holy- Addison Road

What I Like About It: Poetically describes the awe and wonder when you stop to examine your understanding of “God”

Lyrics Highlight: What do I know of you

Who spoke me into motion

Where have I even stood

But the shore along your ocean

Along These Same Lines: What Love Really Means- Jj Heller

 

Waiting Here For You- Martin Smith 

What I Like About It: The song and the video both have a very intimate sound, like we’re listening to Smith direct his words to God without pretense.

Lyrics Highlight: If faith can move the mountains

Let the mountains move

We come with expectation

We’re waiting here for you

Along These Same Lines: Sanctify- Delirious? (Smith’s old band)

 

Hallelujah- Rufus Wainwright    

What I Like About It: Both the lyrics and the music, originally written by Leonard Cohen, are stunning creations. The power of the song is reflected in its versatility.  Cohen himself noted that “many different hallelujahs exist,” and this song could be performed in a “melancholic, fragile, uplifting [or] joyous” tone. I like the Wainwright version best so far.

Lyrics Highlight:  Maybe there’s a God above

But all I’ve ever learned from love

Is how to shoot at somebody who outdrew ya

And it’s not a cry that you hear at night

It’s not somebody who’s seen the light

It’s a cold and its a broken hallelujah

Along These Same Lines: Resurrection- Nicol Sponberg

 

Because of This- MercyMe 

What I Like About It: Like Blessed Be Your Name, this song addresses suffering in a Christian’s life.

Lyrics Highlight: How can we sing, when there seems no reason to

Along These Same LinesCrazy- MercyMe

 

Without Running Away- Jason Gray    

What I Like About It:  Gray’s lyrics are real and original.  Without exaggeration, I cannot think of any other Christian performer of whom I could say the same.  I wish more artists would learn Gray’s secret for sneaking rugged authenticity into the Christian music industry.  A few lyrics in this piece: “I’ve spent some days looking for a length of rope/ And a place to hang it from the end of my hope/……If truth be told I’d rather dismiss it/ And be free of the burden of living that hoping requires” are the boldest and rawest lines I’ve ever heard in a Christian song.  The Christian “culture” needs more honesty like this about depression, hopelessness, and other mental health struggles from artists, pastors, and laypeople. And the Christian community needs to be prepared to respond graciously.  Thankfully the “don’t ask, don’t tell” atmosphere surrounding emotional suffering and mental illness is very slowly abating in Christian-dom after tragedies such as the suicide of Matthew Warren- the son of the distinguished mega-church pastor and author of The Purpose Driven Life, Rick Warren.  Events such as this have prompted mental health awareness efforts, scientific research, and practical resources to be generated in the field of Christian ministry, in addition to frequently-appearing articles on the topic in recent years.  Perhaps after successfully breaching print, emotional authenticity in Christian culture will be heard more widely from the stages and the pulpits.

Lyrics Highlight (in addition to the powerful lines listed above): To bring my heart

To every day

And run the risk of fearlessly loving

Without running away

Along These Same Lines: Remind Me Who I Am- Jason Gray

 

Here I Am- Shawn McDonald

What I Like About It: As is true of many of McDonald’s songs, here he brings a deeply emotional performance from simple and brief lyrics.

Lyrics Highlight: Here I am, oh, tonight

With my arms open wide

Along These Same LinesHave You Ever?- Shawn McDonald

 

Symbol of a Lost Cause- Ginny Owens

What I Like About It: I love the picture she paints of a Christian in some type of social service work: “He could have prospered in the suburbs/ Instead of working for the poor/ Down at the inner city mission/ Where there’s so much disappointment/ And very few rewards,” as it describes many positions I’ve held during my career as a case worker and a counselor working with “under-served” or “under-privileged” populations.  These types of positions will relieve you of your idealism and savior complex promptly.  You start out bursting at the seams with good intentions, but as that energy is lapped away by persistent disappointment in the lack of results and the eventual failure of fragile victories, you begin to realize how much narcissism and pride was underlying those fierce desires to “do good.”  This never-ending process of picking out the pride invading my attempts at virtue informs my understanding of “the gospel” more and more, because God embodies love that isn’t tainted by self-interest. I weary very quickly of my imperfect attempts to “love” in the absence of some kind of ego boost or gratification in return. Yet somehow God truly loves us- the sick and weary but traitorous and vicious beings that we are- unconditionally, and reconciled us to him at his own expense even knowing what a lost cause we were, since we could never reciprocate this perfect love in the state we are currently in.

Lyrics Highlight: Beneath the symbol of a lost cause

Is where I take my stand

Along These Same Lines: Be Thou My Vision- Ginny Owens

 

Better Than A Hallelujah- Amy Grant

What I Like About It: This is a beautifully written song that dares to mention several specific situations of true, deep suffering.  And I’m sure some people are offended by the gritty statement that, “God loves a drunkard’s cry/ A soldier’s plea not to let him die/ Better than a hallelujah sometimes,” and it may be misconstrued to paint God as lacking compassion or even as taking pleasure in our misfortune somehow.  But I believe these weighty lyrics communicate the opposite- they describe the spiritual power of suffering and the fact that “God is close to the brokenhearted and saves those who are crushed in spirit” (Psalm 34.18).

Lyrics Highlight: We pour out our miseries

God just hears a melody

Beautiful, the mess we are

The honest cries of breaking hearts

Are better than a hallelujah sometimes

Along These Same LinesHeld- Natalie Grant

 

Bless Us and Keep Us- John Waller

What I Like About It: I originally heard this song as part of the video Bible study, The Blessing.  The Bible study elaborates on the power of a parent’s blessing, both when it is given and when it is withheld.  This song reminds me of my intentions to actively bless and lead my kids in my relationship with them.  The two similar songs linked below are also powerful in this way.

Lyrics Highlight: Lord make our sons

Like Ephraim and Manasseh

Forgetting the troubles of their past

And having a fruitful future

Along These Same LinesThe Words I Would Say- Sidewalk Prophets; Lead Me- Sanctus Real 

 

Hospital Playlist- Top 10 (OK, 20…)

Here it is, the Hospital Playlist Top 10 that I mentioned when complaining about the insufficiency of Christian music several posts back.  I’ll post another list exclusively of “Christian” songs that deserve recognition since not many can edge out the ‘not-specifically-Christian’ competitors below. This isn’t a collection of my favorite songs; typically I listen to lighter songs with guitar and thoughtful lyrics.  But this doesn’t do for hospital stays.  Something about the mood, beat or lyrics of this assorted list meshes well with the hospital life:

In no particular order:

The Show Goes On- Lupe Fiasco

What I like about it: Determination, overcoming hardship.  The hospital stay inspires reflection on your life as a whole, so I identify with these themes not just in light of June’s health but in light of the rocky parts of my history as well.

Lyrics Highlight: Anybody ever wonder, when they would see the sun up
Just remember when you come up
The show goes on

Along These Same Lines:  Lighters- Bad Meets Evil feat Bruno Mars

 

Little Talks- Of Monsters and Men

What I Like About It: I like the folksy trend seeping into the pop music scene in this band and ones like Mumford and Sons.  I love to hear the variety of instruments used to create a multilayered sound and rhythm.

Lyrics Highlight: Although the truth may vary,

This ship will carry our bodies safe to shore

Along These Same Lines: All Right- Fun

 

Remind Me Who I Am- Jason Gray

What I Like About It: I love Jason Gray.  My favorite song of his is actually “Without Running Away,” and it will be featured on the upcoming Christian list.  But that song doesn’t speak specifically to my hospital stay self.  This one is a good, simple refocusing song for when my focus is all over the place during the hospital chaos.

Lyrics Highlight:In the loneliest places,
When I can’t remember what grace is.
Tell me once again who I am to You,
Who I am to You.

Along These Same Lines: 10,0000 Reasons- Matt Redmon 

 

21 Guns- Green Day

What I Like About It: Emotion on a grand scale; something about how it’s composed makes it sound epic, like listening to a weighty piece of literature in a 3 minute song format.  A few songs I’ve highlighted here, including this one, have been called “rock ballads;” maybe that’s the name for what I’m trying to describe.

Lyrics Highlight: One, 21 guns
Lay down your arms
Give up the fight

Along These Same Lines: Sail- AWOLNATION 

 

Thrift Shop- Macklemore

What I Like About It: I love Macklemore.  He’s talented musically, he takes on daring topics counter to his own genre’s culture, and he openly shares his journey toward sobriety.  And often his songs are equal parts juvenile, unique and entertaining.

Lyrics Highlight: They be like, “Oh, that Gucci – that’s hella tight.”
I’m like, “Yo – that’s fifty dollars for a T-shirt.”
Limited edition, let’s do some simple addition
Fifty dollars for a T-shirt – that’s just some ignorant shit
I call that getting swindled and pimped
I call that getting tricked by a business
That shirt’s hella dough
And having the same one as six other people in this club is a hella don’t

Along These Same LinesCan’t Hold Us- Macklemore

 

Southern Hospitality (“Cadillac Grills”)- Ludacris

What I Like About It: Unapologetic grandiosity, aggression.  This is one of my favorite songs for hospital stays, and I do realize that blasting these misogynistic lyrics and explicit sex and drug references from my oversized mommy-Prius with a Citizen’s Police Academy license plate frame on the back creates quite a spectacle.  But having a child in the ICU turns you into a walking adrenaline gland.  Your senses stay heightened, whether you’re at the bedside or in line at McDonalds. You are in protection mode and can deftly handle any crisis, anytime. You’re also aware of often being underestimated, and you’re quick to sense others’ attempts to dismiss, overlook, or neglect you or your child. Your “JUST TRY ME” stare is always close at hand. You’ll throw some ‘bows if need be.

Lyrics Highlight: Throw them ‘bows

Along These Same Lines: Power Up- Wreckshop Family, Party Up- DMX , Ruff Rider’s Anthem – DMX

 

Liquor Store Blues- Bruno Mars

What I Like About It: The bluesy feel contrasted with the faster-than-blues pace and rhythym of the lyrics.

Lyrics Highlight: Standing at this liquor store

Whiskey comin through my pores

Feelin like I run this whole block

Along These Same Lines (marginally?): One Song Glory- Rent Soundtrack

 

Let Her Go- Passenger

What I Like About It: This is the only slow song that makes the cut here, but the lyrics are beautiful and reflective without being sappy or sad. It goes with a certain emotionally charged, pensive mood that the hospital brings about. See their other song linked below for the polar opposite- a light hearted, somewhat crude pub song.

Lyrics Highlight:You only need the light when it’s burning low

Only miss the sun when it starts to snow

Only know you love her when you let her go

Along These Same Lines: I Hate- Passenger

 

Shake It Off- Taylor Swift

What I Like About It: I know this is overplayed, but I haven’t gotten tired of it.  I like the message, and I’m impressed with her seeming authenticity as an artist.  This is also one of my favorite songs to watch as a sign language interpretation. 

Lyrics Highlight: It’s like I’ve got this music in my mind

Sayin it’s gonna be alright

Along These Same Lines: All About That Bass- Meghan Trainor 

 

Cruise- Florida Georgia Line

What I Like About It: It’s a “country crossover” song so it has a unique sound.  It’s mostly about driving, something I love and I’m usually doing when I listen to music so it’s an enjoyable commute soundtrack.

Lyrics Highlight: In this brand new Chevy with a lift kit

Would look a helluva lot better with you up in it

[I had to ask a true country person- an Aggie 😉 – what this lyric was because it sounded like lift kick to me, so I always laugh at myself here]

Along These Same Lines: California 37- Train

QOTD: This Is a Job for Daddy.

Tomorrow marks one month that June has been in the hospital, and we had originally planned on just a 4-day stay. To recap, the various reasons the stay has lengthened include the switch from the two-stage LTR that was planned to the one-stage version, difficulty extubating after the LTR, which led to the need for a new trach to be placed, and most recently, June’s difficulty eating after the surgeries necessitated getting a gastronomy-button (g-button) and Nissen fundoplication.  Hospitalizations are always a wild ride for us.

During the hospitalization, I’ve been staying at June’s bedside during the week, and Greg has been working and caring for Rowan with help from family.  On the weekend, we switch, and Greg stays with June while I hang with little dude Rowan.  This is the first hospitalization that we’ve been able to switch off at the bedside because previously I was still nursing June.  It’s so nice to have this flexibility!  But it’s far from the ideal of having everyone at home. I’ve gathered several amusing quotes from the kids recently which note ways in which Greg was particularly missed in the situation at hand. Some things are simply a job for Dada.

QOTD

Out of nowhere in the car, Rowan formulated a manufacturing business plan that I know Greg- proud Papa and engineer- would have loved to ask him more about: 

R (holding the new T-rex model he saved up for): Do we have model stuff at home? 

Me: To make dinosaur models?

R: Yes. 

Me: No, we don’t.  It takes big machines to make dinosaurs.  

R: It’s ok, we’ll just buy a big machine.

Me: Well it takes a lot of money, so what if we just buy a model that someone else made with their machine?  

R: No, models cost $25. I need my own dinosaur pressing machine. Is dinosaur rubber expensive?

Me: Yes. 

R: I want to buy expensive things but not use much money.

(Welcome to Capitalism 101, bud!)

•••••••••••

At bedtime Rowan was scared by loud thunder.

Me: Do you know what thunder is?

R: Electricity.  

Me: Yes, well lightning is electricity and thunder is the sound. 

R: And can electricity go in water if lightning hits it?

Me: Yes, it can zap you if you’re in water.

R: Why?

Me: That’s just how electricity works. Would you like Daddy to teach you more about it?  

R: I want you to teach me more about it.

Me: Well, I didn’t learn very much about electricity in school, but Daddy studied it a lot.

R: Did Daddy have more school than you?

(I briefly discussed how Greg and I have the same amount of schooling- a lot- but Greg needed to learn about electricity to be an engineer and I didn’t need to in order to counsel people.  And I made yet another mental note to learn some basic physics.)

•••••••••••

Also on the topic of science, this came up in the car randomly:

Rowan: Why did the forest catch on fire in Walking With Dinosaurs?

Me: Lightning hit it, and lightning has energy in it that made the fire.

R: Is it the same energy that’s in our muscles?

Me: Kind of. The energy in lightning is electricity, and the energy in our muscles is from glucose, sugar. [I’m questioning my answers as I say them at this point]

R: And why does fire eat everything?

Me: That’s just how it works…let’s ask Daddy….

•••••••••••

I am expecting our third kiddo in September, and Rowan insists that he is growing babies, too. His 10 dinosaur babies will be born in September as well. While I was driving home from the hospital recently, Rowan surveyed the back seat of the Prius and asked,

“Where will all of the car seats go?”

Me: Your baby brother’s seat will go right between you and June.  Does that sound ok?

R: What about my 10 dinosaur babies?

Me: Hm, there’s no more space in that seat. What should we do?  Are their car seats small?

R: Yes. Me and Daddy will have to build 10 more car seats. They can go in the back where the dogs sit.

•••••••••••

At the hospital, volunteers brought the toy cart to our room, and June got a Rubik’s cube.  I put it slightly off center and handed it to her.  

She looked up from it and signed “Dada.”

(It’s true, Greg is the Rubik’s cube expert in our house.)

•••••••••••

I was just napping with June in the hospital bed and she woke up before me. She signed all about wanting to listen to the voicemail Daddy had left for her.  So I played it about 5 times, but I was so tired I fell asleep between each 45 second playing, and June had to wake me up again each time.  Finally losing patience, June signed “want” “you” “me” “stand up.”  She proceeded to stand up, emphatically signed “you,” and towered over me in the bed indignantly with all of her 2.5-foot-tall height until I sat up.

•••••••••••

And other gems from this month:

While waiting for surgery, June wanted to put on some of her real clothes over the hospital gown. June seems to have inherited a fashion gene that skipped a generation in Greg and me. After helping her dress, I asked June excitedly- 

“Are you wearing a beautiful shirt?”

She replied quite seriously in sign language: “And shoes.”

Later she kept pointing to her pile of clothes signing “hat” even though there weren’t any hats there.  Clearly she felt her ensemble was not complete.

 

•••••••••••

June loves shoes. She insisted on wearing some into surgery, excitedly signing to the surgical team all about her shoes during the transfer down to the OR.  The team kindly waited until she was under anasthesia to take them off.  

•••••••••••

Several staff have joked with June, asking if they can have her shoes.  She answers matter-of-factly in sign, “You have your shoes.”

•••••••••••

While he was waiting to visit June in the hospital, a kind stranger asked Rowan about his prized T-rex that he bought at the dinosaur museum recently. After roaring and playing pretend with Rowan, the stranger remarked,

“What a neat dinosaur you have!!”

Rowan stopped in his tracks and replied, “This is a *model* of a dinosaur.”

•••••••••••

Driving home from the hospital one day, Rowan asked:

“Are we going in the direction of home?”

Me: Yes, we live northwest of here, so right now we are driving ‘north.’

R: And is this the road the snow comes down?

Me: Um, no, we don’t get much snow here.  Why were you thinking there might be snow though?

R: Because there’s snow at the North Pole. 

Me: Oh, well we’re only going a little bit north.  Not to the North Pole.

 

QOTD: now with ASL!

It’s time for me to transcribe the kid quotes saved in my notepad app into the Quote of the Day journal, and this edition includes some fascinating American Sign Language quotes from June! Here are the highlights from the first quarter of this year.

:QOTD

Rowan is on track to outpace Greg and me on computer and phone app skills pretty soon. He’s fascinated by computer commands. One day he was watching June crawl around in the mini ball pit we had set up in the living room. After a moment, Rowan told her, “When you want to get out, press the home button.”

 ♥

While driving somewhere with Rowan, Greg asked the car’s voice command system to play songs from his library.

“There are no phones set up to play music,” the car responded.

“Did she knock all the phones down?” Rowan asked.

 ♥

Rowan discovered a letter opener in the kitchen, so I explained that it’s for opening letters. Several days later he asked if he could open “the letter A” with the tool that has a pointy beak.

 ♥

Shortly after entering the “why” phase, Rowan asked why God loves him.

“Because He made you,” I said.

Rowan: “Why’d He make me?”

“Because He loves you. Wait, well, that’s circular, isn’t it. Well little dude why do you think God made you?” I asked

“Because it’s a beautiful day,” he replied.

 ♥

I accidentally spilled some milk from Rowan’s lunch in the car. After several rounds of Rowan asking “why” that happened, I said I’d have to try harder next time to not spill.

“Don’t try harder two times,” he said. “Then do it right.”

 ♥

Grandma to Rowan: “I thought you said you wanted the other thing. Did you change your mind?

Rowan looked puzzled and alarmed. “Do you have my mind?” he asked. “Do I have your mind? Can I have my mind back?”

 ♥

I had to set June down briefly to carry items between rooms, and she began wailing and asking to be picked up. I continued at my task, and Rowan patted June sweetly on the head.

“It’s ok, June. Sometimes Mama doesn’t come.”
(You’d think my kids were plucked from the pages of a Dickens novel…)

 ♥

In the last month, June has picked up a ton of signs from Greg, Rowan, and me plus watching Signing Time. One morning I was watching the video baby monitor, trying to assess if June was still trying to sleep in or if she was ready to start the day. She was rubbing her face and tossing around like when she’s trying to return to sleep, but I also saw her signing. I caught signs for “eat,” “surprised,” and “more.” I couldn’t figure out what was going on. I even scanned the room to see if she was signing to someone. Then I finally realized….SHE’S BABBLING. In sign language. And trying to get herself back to sleep.

 ♥

June loves playing with the dog bowls, but she’s not allowed to play with the dog food. So she has to wait for the dogs to finish their meal. As usual, Tracy was taking her time. So finally June sat down beside Tracy’s bowl, signed “all done!” and placed Saharas empty bowl on top of Tracy’s half eaten breakfast.

 ♥

June discovered Rowan’s awesome crocodile puppet, and I was making it talk to her. I couldn’t resist playfully “gobbling” her hands a few times, which made her look a little hesitantly at this new creature.

“It’s ok,” I said and I held the puppet out to her and petted it.

She pet it as well and signed, “Dog?” to me quizzically.*

“No, it’s not a dog, but I don’t know how to sign crocodile. It’s a croc-o-dile,” I said, as if that helped clarify anything.

 ♥

This last one isn’t a kid quote, but I’ve been laughing uncontrollably about it for two weeks. I recently got my first professional massage ever, courtesy of a Christmas gift card. When Greg asked me how it was, I said it was interesting and that I tried to figure out what she did to target each specific muscle.

“Like, she used her forearms a lot,” I said.

“Wow, she must be a good masseuse if she has four arms,” he said.

 ♥

End quotes, begin: nerd rant

*Language development is FASCINATING- a few of my psych courses touched on it- but acquisition of a signed language has unique additional layers. What I think is so interesting about this interaction is that it’s a piece of the incredibly complex puzzle that a child puts together during their first years of language development in which they learn through trial and error whether a word that they associate with an object is a noun or a descriptor, and how broadly that word applies to other things. If June saw a crocodile in the wild, the first word I might say to her in regard to it is “dangerous.” Or if a crocodile showed up in a colors book, I might point to it and say, “green.” Or, in the example I quoted from, I clumsily explained that this crocodile isn’t “real,” it’s a “puppet.” Over time, at this young age, she would eventually reason that a crocodile is not called “a dangerous” or “a green,” but rather it is called a crocodile and has the attributes “dangerous” and “green.” She’ll learn that the descriptors “dangerous” and “green” apply to broad, disparate sets of nouns, whereas things in categories like “reptiles” and “puppets” have more apparent similarities. She’ll learn that a “crocodile” is not a “dog,” but they are both “animals.” And this detailed process is repeated a thousand times over for each noun she learns. /nerd rant

Travelling With a Medically Complex Kiddo: Packing

Today I’ll share some final tips and tricks we learned about travelling with a medically complex kiddo.  My previous post covered preparing for the trip, and today we’ll tackle packing.

Travelling Packing

As promised, there are free printables!  In fact, most of the information is in the printables below including a two-page packing list and accompanying packing map to quickly locate all of your belongings.  Here are a few additional tips on the topic:

  • Consider clothing choices that are impacted by medical needs when planning outfits. In June’s case, we need to use pajamas with feet at night in order to keep the pulse-ox probe securely in place (since June can’t pull it off). Other considerations may be G-tube access or working with layers of warm clothing when using medical equipment or seating.
  • When packing, run through possible emergency scenarios that could occur on the plane or in the airport waiting areas before and after the flight.  Be sure that everything you would need in those situations is in a carry-on bag rather than a checked one.
  • Take a moment to picture yourself physically transporting all of your luggage.  Where does it fit during your travel to/from the airport?  Who is carrying what at the airport, and who is carrying/herding children?  If needed, ask the airline for suggestions such as a luggage cart, motorized escort, or the ability to check your stroller at the gate.
  • Secondly, picture yourself storing all of your carry-ons during the plane ride.  The “free” medically necessary carry-ons in addition to everyone’s allotment adds up to a lot of bags.  How many items need to be accessible during take-off and landing (these will need to be stored under the seats in front of you)?  Who in your party will store these items and use them if necessary?
  • Plan your boarding and exiting strategy.  Passengers with special medical needs can usually board first, but this may be risky health-wise if the fancy germ-fighting cabin air filters are not in use during boarding.  See this quote from the Wall Street Journal:“…..[S]tudies have shown that high-efficiency particulate air (HEPA) filters on most jets today can capture 99.97% of bacterial and virus-carrying particles. That said, when air circulation is shut down, which sometimes happens during long waits on the ground or for short periods when passengers are boarding or exiting, infections can spread like wildfire.”Because June’s trach makes her especially susceptible to respiratory illness, we opted to board last instead.  However, this proved problematic because on both flights, all of the overhead space was taken by the time we boarded. The flight attendants were already enforcing mandatory luggage checking for remaining bags at that time, so some additional passengers had their luggage checked at the gate in order to make room for our medically necessary gear that didn’t fit under the seats.

And now the printables!  They are available as individual JPEGs here or as a 3 page PDF document.  I am certain I left off obvious things.  If you notice something that could be changed, don’t hesitate to leave a comment or send me a note.  I hope these are helpful to other families who are travelling with a medically complex child or family member.  The system is applicable to general travel, too, so if your needs are more routine, check out just Page 2 and the Packing Map.

Packing List Page 1

Travelling With a Medically Complex Kiddo: Packing, Page 1

Travelling With a Medically Complex Kiddo: Packing, Page 1

Packing List Page 2

Travelling With a Medically Complex Kiddo: Packing, Page 2

Travelling With a Medically Complex Kiddo: Packing, Page 2

Packing Map

Travelling With a Medically Complex Kiddo: Packing Map

Travelling With a Medically Complex Kiddo: Packing Map

Or download all three pages as a PDF file: Packing List and Map

QOTD

Ever since Greg and I were dating, a highlight of our week has been to send each other regular “Quote of the Day” emails chronicling the funniest, oddest, or most interesting things we heard that day. Once we had children, we continued the tradition by sharing memorable quotes from the kids.  We save them in texts, emails, and iPhone notes and eventually they make their way into my paper-and-pen journal of the Kid’s QOTD.  (“Eventually” being every 4-6 months, usually during a holiday break like this.)  Here are some highlights from the last half of this year, tentatively titled “Impromptu Debate With A[n adorable] 3-Year-Old”

:QOTD

Rowan: I am going to get my two paints and paint a picture!

Greg: You only need one set of paints.

Rowan: But I want to use two.

Greg: No, bud, you only need one.

Rowan: But what happens if I use two?

Greg: Well…nothing really since you can only use one at a time.  OK, bud, you can use two.

Rowan: I beat you with my two paints!   [After some reflection] …..I only need one paint.  I am going to put one back.

 ♥

I intervened when the familiar Car Seat Wars resumed and I heard June crying.

Me: Be gentle with June.

Rowan: I am gentle with June when I’m not pinching her.

 ♥

Rowan was naming dinosaurs in the back seat of the car while I was totally focused on locating the next turn we needed.

Rowan: I’m going to go home and write all of the dinosaurs that I said.  What did I say, Mama?

Me: Brachiosaurus?

Rowan: And then what?

Me: Stegosauraus?

Rowan: Not a stegosaurus.

Me: A T-rex?

Rowan: Yes, and what was between brachiosaurus and T-rex?

Me: Umm……..did you say anything between brachiosaurus and T-rex?

Rowan: No, I didn’t.

 ♥

After several last-minute requests before lights out, I asked Rowan if he was just trying to make bed time last longer.  He laughed heartily and said, “Yeah, I made it so long!!” I said a final goodnight and as  I closed the door, Rowan said sweetly, “Mama……” I paused with the door almost shut.  “I made it longer,” he concluded.

 ♥

I actually don’t recall who was upset or why, but I told Rowan in the car

Me: We are going to take deep breaths while we drive home.

Rowan: What happens if we take narrow breaths?

 ♥

Rowan was playing with Greg’s wallet and handed it back, keeping a credit card for himself.

Me: Are you going to keep that one?

Rowan: Yes.

Me: What are you going to do with it?

Rowan: Give it to any one who needs it.

 ♥

After a quick survey of the house upon returning home one afternoon, Rowan said to me quite seriously, “Mama.  Please don’t go into my room when I’m at school again.  My tricycle is sleeping.”

 ♥

Me: Rowan, clean up your crayons.

Rowan: Who’s coming over to say something?

 ♥

Greg and I were relaxing in the living room when Rowan ran past us towards the garage carrying Greg’s hammer, yelling, “I’m going to go fix the car!!”

 ♥

Rowan: I am a scientist.

Me: Oh, can I be a scientist, too?

Rowan: Yes, you are a scientist.

Me: What about Dada, can he be a scientist?

Rowan: No, Dada’s not a scientist.  He’s just an engineer.

 ♥

Rowan and Greg had been playing with a Rubik’s cube earlier.  Rowan handed it to me unsolved-

Rowan: Can you do this?

Me: No, I’m not very good at it.

Rowan: Are you good at playing basketball?

Me: No, sorry.

Rowan: What can you do, Mama?  Are you great at turning on the TV!?

 ♥

Rowan likes to make up words nowadays.  Recently he presented a toy to me and said,

Rowan: It’s a masookdadookta car!!

Me: Really, what’s that?

Rowan: It’s a phenomenon.

God Watch

Photo credit: hisks from sxc.hu

Today’s quote is:
“Years ago I coined that phrase “God Watch” for our children as a game, of sorts. It was an intentional way of watching and waiting to see how the Lord would unexpectedly amaze us during a particularly difficult circumstance. Now, it’s a family matra. Our God Watch is a reminder to gaze at his goodness. To rest in his reassurances. But more importantly, it’s a whisper of willingness to choose joy in the midst of doubt. –Jennifer Schmidt, Balancing Beauty and Bedlam”

I suppose I should declare a God Watch. This week and last were incredibly difficult. I was offered a once-in-a-lifetime career opportunity which had been a dream of mine for the last 10 years, wrapped up with several unexpected financial perks like a sparkly, inviting bow. Not only was this something I dreamed about and longed for in my professional practice for years, but I had hoped it would be God’s answer to my season of intense questions and seeking this past year when the negative events in my life just didn’t make sense. Yet I had a persistent feeling that this amazing, sparkling career opportunity laid out before me wasn’t the right one. I had a feeling that God has been leading me so closely this past year so he could clearly navigate me past what seemed so much like a perfect direction to travel.

After a year of searching and looking for comfort and peace amidst grief, it was incredibly hard to pass up the first concrete path that I saw in the desert, especially one so inviting. And I don’t have any alternative path to guide my seemingly aimless journey instead, just a strong impression that God was telling me, “I have something better for you.” But I don’t know what that something is. I had hoped that because saying no to this opportunity was so difficult for me, I would have a reassuring new direction soon afterward. Not so. Thankfully, I do have intellectual and spiritual peace that I made the right decision, but emotionally- and quite vividly- it stings of another fresh loss. Be advised, a God Watch is in effect for this and surrounding desert areas.

Wilted

This quote stood out to me because on some days this year, I was so tired of wrestling with discontentment without knowing the real cause or solution, I felt, as she describes, “done,” “wilted.” But I was still encouraged because even if I felt like tired and wilted, I was reminded about a verse that says “a smoldering candle He will not snuff out. A bruised reed He will not break.” That verse is one reason that people often say “God will never put more on you than you can handle,” which itself is not actually in the Bible. But I think it’s an apt practical translation of this verse, as long as you bear in mind that in that saying, God intends for “you” to bear it with his help, not alone.

“On the days that I am just done, wilted, I remember that my identity is not in my ability to stay energized, or have the house all clean, get all my work done, or have the kiddos neatly dressed with bows in. My identity, my worth and value, is in the One who sees me as perfect for all of eternity. –Sarah Mae, Like a Warm Cup of Coffee”