Thursday, December 27, 2012


Okay, let me just start by saying that while this is, in general, a 'medical update' post ... we're actually doing just fine.  Emma is walking and as mischievous and happy as ever and Charlie is enjoying some extended grandparent time during his winter break.  Christmas was good to all of us and God is good.

So please don't read this with a dire tone of voice :)

Emma next two trips to the OR are scheduled for January and February.  The first is a CT scan to determine the extent of the damage done in her ear.  Emma's ENT is a fabulous man who can joyfully get away with saying the following to us:

"Emma's ears look great today!  Better than I've seen them in a long time!  You know, aside from the missing ear drum ...I mean ... other than that ... they look great!"

This truly is good news.  Emma's ear has healed well from the removal of the tissue and appears ready to accept a new ear drum.  First, though, we'd like to determine the extent of the damage, as these things can sometimes affect (read: erode) bones.

(to read more about Cholesteatomas, click here.  my understanding, which may be wrong, is that it's not scar tissue, not a cyst, and not a tumor, but acts similarly to all of those things.  the word 'drilling' was used to discuss complete removal, at which point Mommy just sort of tunes out a bit and makes the choice to trust God and the doctors:) )

The CT scan will be done under anesthesia.  Emma has had a nasty habit of forgetting to breathe during lighter sedation and it doesn't seem likely that she's going to hold perfectly still during this test without some, um, happy sleepy meds :)  The doctors just feel more comfortable with her under the watchful eye of the anesthesia team.

Then, regardless of what we find, Emma's ear will be completely cleaned out and a new ear drum will be constructed during surgery in February.  This will be a several hour procedure and an over night hospital stay for the Bear, but we feel confident that it is the correct thing to do going forward.

We are so SO thankful for Emma's medical team!

I guess our prayers for these procedures are just lack of complication.  I don't get the sense that Emma is in any pain right now (aside from some sniffles), so we are not feeling stressed about the time between now and when we can get this fixed.

I am astounded sometimes by how much God has used Emma to teach us about His ways.  I used to REALLY REALLY struggle with Matthew 6:

I tell you, do not worry about your life ... look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them.  Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? 
But seek first his kingdom and his righteousness and all these things will be given to you as well ... do not worry about tomorrow ... each day has enough trouble of its own.

At my core, I am a born worrier.  But God has used Emma to teach me that TODAY is all I need to worry about.  Worrying about tomorrow does no good anyway, and God will take care of us in the future just as he has in the past ... so I only need to concern myself with seeking his kingdom in the present.

So while happiness is not guaranteed for any of us at any given time, we are so thankful for it today and trusting God with tomorrow

Thursday, December 13, 2012


so it's been almost a week since emma's ear surgery

it's weird, but we're sort of back to normal?

she's sleeping

she's walking again

she's playing

she has no interest in slowing down to snuggle :)

so ...


i guess we'll call it 'good enough'

Saturday, December 8, 2012

Just to be clear

I had a rough day today.  Emma is having a lot of trouble walking since the surgery - I'm not sure if it's a balance thing or because of the IV placement, but it's hard to see her not walk.

But no matter what,

I will extol the Lord at all times
His praise will always be on my lips.
I will glorify the Lord,
Let the afflicted hear and rejoice!
Glorify the Lord with me
Let us exalt His name together!

Psalm 34

Regardless of our circumstances, He is worthy of praise.

Friday, December 7, 2012


Thanks so much for the prayers today, friends!

Emma's surgery was ... well, we've been through worse ... but not as boring as we would have hoped.

I got to walk back with her and hold her hands while she fell asleep, so that was good, but it pretty much went downhill from there.

After what seemed like much longer than it should have taken, our ENT came back with, "Not good news about Emma's ear."

The granulation tissue, together with another type of inflammatory tissue, has basically eaten away the ear drum in her right ear.

I seriously had to clarify, "So.  Wait.  It's gone??"

"Pretty much, yup."

He was able to remove a lot of the tissue, but he was not able to tell how deep the damage was.  Right now the ear canal is inflammed and angry.  We're supposed to do ear drops 3 times a day until we don't see bloody discharge anymore.  This will probably last 3-7 days.

After the ear calms down, we're going back to her ENT to see what he sees.  We'll probably do a CT scan or MRI or something to see if damage was done to the mastoid bone (deep in the ear canal) and then we'll decide whether or not reconstructive surgery is the right next step.  I'm not sure I completely understand all the future options ... I'm sure I'm going to be getting a crash course in Ear Anatomy soon :)

Recovery from surgery was a little rough this afternoon, but at least we're home now.  She does seem kind of uncomfortable, but I'm sure a bit of sleep with do us all some good!

Again, thank you so much for the prayers!

Wednesday, December 5, 2012

SO much!

Emma is feeling MUCH better today!

Her teachers said she had a great day at school, which was so encouraging.

The antibiotics are still ... doing what antibiotics do, but at this point, that seems to be the only thing bothering the Bear from last week's illness.

The surgery intake nurse called to pre-register Emma for the end of the week.  It always hits me when they start talking about anesthesia and airways and IVs and "waking up" that, even if this is the very minor procedure that it has the potential to be, it's still not a lot of fun.

And, for the first time, we have been talking to Emma about the procedure and she seems to understand.  Daddy mentioned it to her for the first time on Monday night and her reaction was amazing!  She had been kind of ignoring him and playing with my necklace, but when he said "surgery," she immediately turned her head to look at him.  And then she kept looking from me to him and back again, as if to ask for more information.  Then, yesterday, when she was fussing and pointing to her ear, I told her that the surgery would make it all better and she actually NODDED :)

She gets it this time around, I'm sure of it.

A victory, to be sure, but obviously a bittersweet one.

We're so so thankful that she's feeling better, though!  Thank you for your prayers for the Bear!

Like I said, this procedure has the potential to be a very minor surgery (considering), but granulation tissue in her ear has caused a few bumps in the road before, so we're praying that it's a quick in and out visit to Children's on Friday.

Thank you, God, for Emma smiles today! :)

Tuesday, December 4, 2012

Better enough

Emma is still not 100%, but she's passed her pre-op physical, so surgery is on for the end of the week!

When our Pediatrician Who We Love looked in Emma's ear this morning, she said that it looked 70% covered by granulation tissue.  I am SO glad Emma is well enough to do the surgery and get this issue resolved.

Thank you, Prayer Warriors!

As much as I am LOVING these snuggles, I am continuing to pray that Emma will feel better soon.  I suspect that there is some pain that is not going to go away until her ear is cleaned out, but I'm really wanting my girl to be feeling as well as she can before she goes under anesthesia.

I'm focusing on the positive, though :) PRAISE JESUS for a good night's sleep for everyone last night!

Friday, November 30, 2012

A hospital bag night; a thankful day

Emma is sick

Up most of the night, screaming in pain, breathing sounds like Darth Vader, coughing and choking and retching and gasping until Mommy and Daddy run to open the airways, fever, not enough Tylenol in the world ...


I know I'm not the only Mommy who wonders when it's time to call 911.  I don't want to look foolish if she's settled down by the time we get to the ER, and I don't want to expose her to hospital germs unnecessarily, but I also don't want to leave her in pain all night

So we wait and see.  We do our best all night, running to her room and trying to wake up enough to remember when we can give another pain med dose.  We had an appointment with our Pediatrician Who We Love in the morning anyway, so as long as we were able to help her with her clogged airways, we didn't need to rush her in last night.

She finally settled for awhile around 4 am.  I got up at 6 to shower and get ready for getting Charlie off to school. 

And pack a hospital bag.

Deodorant, pj's, contact lens case, clean underwear, toothbrush, slippers ... all assembled quickly ... we've done this before ... pack the essentials just in case ...

It was a hospital bag night.

coffee coffee coffee ...

After getting Charlie off to school, we went to visit our Beloved Pediatrician.  Seriously, I am so thankful for her!  We checked Emma's O2 sats; I panicked at first because Emma was doing that breath-holding breathing people do when they are in pain ... so her sats started in the 70s ... but then they recovered.  She listened to her lungs, and thank God they sound clear.  Emma's ear is angry, though.  During the exam, a piece of wax had to be cleared out of her ear.  Just brushing up against it made the granulation tissue bleed.  Poor baby.

When all was said and done, we landed ourselves with an upper respiratory infection, affecting sinuses and ear. 

We were able to do a round of IV antibiotics in the clinic; they just gave her a shot in each leg.  We're back to oral abx for the next week.  I am SO thankful for medicine!  Seriously, I am so so so full of gratitude that we can make her feel better when she's sick. 

And I am so so so so SO thankful that the hospital bag isn't going to be used this time around.


Emma needs surgery to get rid of this granulation tissue, but she needs to be healthy enough for surgery.  This infection needs to NOT go into her lungs, because she can't go under anesthesia if her respiratory system is compromised in any way.

And we all know that the medicine that is required to make the infection go away is NOT good for a Bear's GI system

So we're praying for her lungs and we're praying for her tummy.

And I'm praying for some sleep for all of us.  Soon :)

Wednesday, November 28, 2012

Wishing Star

Over peanut butter and celery today, Charlie re-opened a topic of discussion that I STILL don't know the right answer about ...

"So, Mom.  Yesterday in music class we were singing a song about wishes and we got to take turns making up verses about what we'd wish on the wishing star!  You know what I wished?"

"Hm?"  (I'll be honest, I was a bit distracted.  Emma is doing GREAT at feeding therapy, but the skills are not translating to home ... Emma had no interest in the PuffCorn I was trying to feed her ...)

"I said that I wished my sister didn't have CdLS!"


"Oh!  What did your teacher say?"

"I got to sing my verse of what I wished!"

"Did your teacher ask what CdLS is?"

"I don't really remember..."


"What would you have said if she asked you to explain it?"

"It just means she eats differently and her brain works differently and she's cute and little and I love her!"


"I'm glad you love her, buddy.  She loves you, too."

I'm a little done today.  I'm certain that the reason this was on his mind yesterday is because I made him late for school.  I made him late for school because Emma had finally gotten her MMR vaccine on Monday and yesterday, not 14 hours later, she woke up with a horrible rash from head-to-toe.  I knew it wasn't life-threatening or anything, so I wasn't panicked, but I was playing phone tag with our PediatricianWhoWeLove trying to determine if this was an emergency or if she needed to be seen in clinic or if she could go to school.  It was stressful.  And Charlie was late for school.

He rolled with the punches as well as he always does, but I'm sure the "specialness" of his sister was on his mind yesterday.

And today, I'm done with it.  I'm done with the theology of disability.  I'm done with the lack of "correct" answers.  I'm done with the stress and the hoops to jump through and the appointments and the constant state of ALERT because of whatever Emma's poor little body will have to endure next.

But God's not done.  He's still here and He's still good.

Charlie and I were singing Christmas Musical songs together this afternoon.  The following lyrics brought me to tears

Still wise men go seeking him when the way is dim
His light is there to guide
It's true for all of us
No matter what
He'll never leave our side and forever His light will shine.
The star will shine, showing the way
Lighting up the darkest night
This faithful guide won't lead you astray
Darkness will never hide His light

 Her rash is clearing up and she's sleeping well. 

"Silly Mommy, everything's gonna be just fine!"
But even if the reaction had landed us in the ER, He would have been there, too.

The people who walk in darkness have seen a great light.  On those living in the land of darkness, a light has dawned ... For unto us a Child is born ... (Isa 9:2,6)

Monday, November 26, 2012

Quick update

Hoping Thanksgiving was good to everyone!  It was wonderful for us :)

But now we're right back at it.

So, remember that ear infection?  We did end up doing a round of antibiotics because the drops didn't clear it up. 

Then we saw the ENT last week, and he said that there was still gunk in there.  He needs some time with Emma's ears while she is under anesthesia to dig out the granulation tissue growing in her ear canal.

So she's scheduled for surgery next week.

yuk yuk yuk

We're praying that this will be pretty uneventful.  I'm always nervous when I hear about granulation tissue in her ear canal because of that whole facial paralysis thing ... but we're hopeful that with her ear canals being bigger now and the fact that we caught it in time ... we're hopeful that this can be a very boring trip to the operating room :)

Thursday, November 15, 2012

My Psalm 42

I am thirsty, so thirsty.

As a deer pants for water, so my soul thirsts for you

I am down

Even songs make me cry

But I remember You

Why am I down?  Why is my soul so disturbed within me?
I will yet praise the Lord
My King and my God

I had a bit of a down day yesterday.  Nothing bad happened.  Emma kept messing with stuff she knows she's not supposed to mess with and then laughing about it.  There have been more difficult things than that in my life, but I was unhappy.  It seemed appropriate; a friend of mine referred to days like that as "Holland Days."    I was downcast, oh my soul.

A CdLS friend of mine posted in our support group, asking for prayers for her daughter's surgery.  It made me remember to back when Emma had her first ear tubes placed.

And the fun thing about having blogged during that time?  I can go back and read about God's faithfulness (click here if you're curious :) It was fun going back and looking at pictures of my kids when they were little-er)

Charlie and Emma, ages 1 and 3 ... I still have no idea what those stickers are ...

I love how the Psalmists seem to always talk about remembering.  "My soul is downcast within me; therefore I will remember you." - Ps 42.  I need to be reminded to remember.  God has a pretty good track record with our family, if that makes sense ...

Our little family has much to remember about God's faithfulness.  I'm thankful for his word today, reminding me of the importance of recounting and remembering how good He has been to us.

Sunday, November 11, 2012

Happy Birthday!


"Mommy, exactly how necessary is this tiara?"
is FOUR!

She is strong

She is sweet

She is silly

She is lovely

She is an instrument of God, refining all who love her, helping us all become so much more.

Happy birthday to my little miracle.  May God bless you, Emma Bear!  I know He has immeasurably blessed me through your little life

Saturday, November 3, 2012

We speak ...

... Emma's language.

This, for example,

is her way of saying, "Mommy, I have an ear infection."

Praise God, however, that her ear tube seems to be working in that ear and we can just do a round of drops, instead of oral antibiotics, thereby NOT adding to the GI wackiness already plaguing our house.

She's feeling much better already :)

Wednesday, October 31, 2012

A Princess

This can be a tough time of year for some parents like me.


"What's Emma going to be for Halloween?"

Let's be honest: She doesn't care.  She has no "favorite characters" and, even if she did, she would have NO understanding of the concept of dressing up like them.

In fact, many aspects of the event would be TORTURE for my little sensory Diva.  A mask?  No way.  A big bulky costume?  Not good for her favorite 'running around' pastime.  A hat?  A prop to carry?  A cape?  Sensory issues make all of those things too much to handle, particularly if you're already taking her to a place where sensory overload is likely.

No candy for my tubie

And no bouncing in the bouncy castle, either.

So I've been depressed.  Why spend upwards of 20 dollars for a costume for a girl who doesn't care?

I met a friend for a walk around the mall this morning while the kids were at school.  Both of our oldest are in kindergarten and our kids have all played together since infancy. She shared a story that made me cry.  She told me that her daughter has befriended a mostly non-verbal boy with autism in her kindergarten class.  She told me that her daughter's teacher went on and on at conferences about how her daughter has taken this boy under her wing, holding his hand in the hallway so he doesn't get lost, and talking to him whether he talks back or not.  The teacher said that the boy has started talking more at school with my friend's daughter's encouragement.  What an incredible difference this girl is making!

And my friend told me that she was thankful to have Emma in her daughter's life, knowing that, in some small way, she was sure that Emma's friendship with her daughter had helped prepare her for a friendship with a friendless boy.

See, there are lots of things Emma doesn't do.  She doesn't care about Halloween.  But the things she does, the differences she makes ... it's way bigger than a costume.

I left the mall feeling better (a good talk with a good friend can do that).  I passed a display of holiday dresses in a department store on my way out.  The dresses were gorgeous, frilly and sparkly and beautiful.  I remembered how, last Christmas, I took Emma to a Ladies Christmas Tea at our church and how she loved wearing a beautiful dress.  She positively pranced that night :)

I bought two of the dresses and took them home.

Later, when the kids were home from school, I asked Charlie to help me with Emma's costume.  One of the dresses was beaded all the way up the front, and Emma panicked when it was on.  I could tell that it was uncomfortable for her where the beading touched her neck and shoulders.  I was discouraged, but I took the dress off to try the other one on.  I asked Charlie to go and get the shiny black shoes that I had purchased for Emma on clearance at the end of last season.  He cut the tags on the shoes while I put the first dress away.

I showed Emma the second dress.  It's soft on the top and sequined on the bottom.  She grabbed for the skirt to investigate the shiny designs.  We tried it on, and while I was tying the bow in back, Charlie sat in front of her, putting her shiny shoes on.

Emma stood up and pranced like a princess

She's so enthralled by the beautiful dress, she seems to not even care about the tiara on her head.

(pardon the fuzzy picture - note the aforementioned prancing)

Emma will not be wearing a costume this year; she will be dressed like the Princess she is!

Tuesday, October 30, 2012

does a bear poop in the woods? not this one ...

I find it unreasonable, the percentage of my well-being that is directly tied to the color, texture, smell,  quantity, and quality of my daughter's POOP!

Honestly, it permeates my life.  If you ask me how I'm doing lately (or if you ask how Emma's doing, which is pretty much the same thing ...) the answer is most likely poo-related.

I consider it a very successful day if I can make it all day without uttering the following words: Poop, diarrhea, constipation, Miralax, diapers, or "Charlie, quick! Make a bath for your sister!"

He's getting very good at making a bath for his sister ... we'll put it on his resume' ...

And truly, very often I have a sense of humor about these things.  In many circles, poop is always funny.


But still ...

Anyway, for the record, things are ... um ... moving ... in a positive direction ... again.  And the Bear is much happier.

I'm a little sick of laundry

But she's much happier, so we'll call it a good day :)

Tuesday, October 23, 2012


In the second book C. S. Lewis' Narnia series (if you're counting the right way:)); Peter, Edmund, Susan, and Lucy have returned to Narnia to find it ruled by an evil King Miraz.  They join the boy Prince Caspian and the good creatures who remember the Great Lion Aslan (the High King of Narnia, who had died in Edmund's place but rose again in accordance with the Deep Magic from Before the Dawn of Time) to fight evil and return peace to the land.

Eventually, Miraz is destroyed and once again the trees are dancing.

And then Aslan shares this exchange with Prince Caspian:

“Welcome, Prince,' said Aslan. 'Do you feel yourself sufficient to take up the Kingship of Narnia?'

'I - I don't think I do, Sir,' said Caspian. 'I am only a kid.'

'Good,' said Aslan. 'If you had felt yourself sufficient, it would have been proof that you were not.  Therefore, under the Us, you shall be king.'"

I'm not sure if I've shared this before, but let's be very clear about something:  I AM COMPLETELY UNQUALIFIED FOR THE PATH SET BEFORE ME!  My daughter is, once again, in pain.  I'm not sure I know what's causing the pain but I suspect a bowel issue.  If I'm correct, the solution will not be immediate.  She rests her head on my shoulder and breathes in a way that tells me she's not comfortable and all I can do is rub her back and wait.

Do I feel myself sufficient?


I cannot do this.

Do you feel yourself sufficient for what is before you?

You probably aren't.

But the Lord says, 'My grace is sufficient for you, my power is made perfect in your weakness'

Let's lean into His grace together.

Thursday, October 18, 2012

That's normal, right?

So Emma has been doing really well with feeding therapy lately, which is good

But that means her gut flora is getting some new and different input ...

So she's constipated.  Which is bad.

Charlie was out of town earlier this week, spending some special time with Grandma and Papa.  Now that he's home, he and Emma are back to their usual shenanigans.

I really didn't feel right not telling him that the sister with whom he was wrestling had been pumped fill of prune juice.  I explained that she's crabby because her tummy doesn't feel good.

I told him that we're hoping that she'll poop soon because then we'll know she's starting to feel better.

He felt some preparations were in order.

"So, Mom, if I smell it first, then I'll yell, POOP! and then you'll come running in and we'll say, YAY!  and high five like THIS.  But if you smell it first, you yell POOP and then I'LL come running in and say YAY and then we'll high five like THIS!  Got it?"

Um ... sure ...

I went to do laundry, uncertain of whether to laugh or cry ...

And while I was downstairs, I heard him explaining to her that if she poops she'll feel better. 

"So, you can do it, Bear!  Poop!"

Totally normal, right?


Tuesday, October 16, 2012

Welcome to our club; we still carve pumpkins here

(this post will make much more sense if you've read Welcome to Holland - it's a wonderful piece of writing!)

The early days of life with Emma seem like another lifetime ago, but there's an emotion I remember as if it was yesterday.

I had Google searched CdLS, I had read a few blogs, I had gotten scared, and I had read "Welcome to Holland."

And I had thrown "Welcome to Holland" across the room :)

I did not WANT to be a member of this club!

I was NOT comforted by reading other mothers celebrating tiny victories.  I was still focused on the "shoulds" and didn't understand the joy of the simple victory yet.

My world was upside down.

And then another CdLS mom shared a picture that really helped me.  It was a picture of her daughter in December.  The girl was older, had limb differences, and was in a wheelchair.  And she was happily gazing in wonder at her family's Christmas tree.

They still put up a Christmas tree.

See, one of the big problems with abruptly landing in Holland is that you're not sure if they still celebrate Christmas here.  You're not sure what percentage of your life is now no longer "normal."

But they had put up a Christmas tree.  Their life had gone on and, by all accounts, a happy moment had been captured by a camera and sent out into the World Wide Web to encourage me. :)

Which is kind of another reason I blog.  There are some clubs that no one signs up for.  And when you find yourself a new member to one of those clubs, you kind of secretly hate being "Welcomed" to it.

Until you realize that they still put up Christmas trees here

Or they still rake leaves and jump in the piles

Or they still carve pumpkins.

Yeah, sometimes it looks a little different around here

But we still carve pumpkins

Have you found yourself in a club you didn't exactly sign up for?  If so, can I just say that I've come to believe in the power of life's simply joys, shared.  A simple smiling pumpkin might just be the encouragement someone else needs, if they are a few steps behind you on the same less-traveled road.

Be joyful always, pray continually, give thanks in all circumstances I Th 5:16

Monday, October 15, 2012

How old is she?

I've caught myself giving a very strange answer to that question lately.

"She'll be 4 next month."

I used to lie about her age sometimes.  When strangers would I ask and I didn't really feel like going into it, I'd sometimes lie and say that she was much younger.  People asked fewer follow-up questions then.

But lately, when people inquire as to the age of my 22 pound 3-year-old, I've found myself emphasizing that, yes, she is almost FOUR.

Why does it feel so good to say she'll be four?

Four is an accomplishment.  Four is not a fragile baby who should not be wrestling with her brother; four is strong.

Four is a survivor. 

And "nearly four" does something else, too.  That answer sort of rips off the metaphorical band-aid quickly.  It very quickly defines the category.  She is special.  She is different.  She's not a preemie who is "going to catch up" and she's not a baby who was just born with a lot of hair.  There is no wondering about the little phenomenon I have with me anymore.  When a man at Target yesterday asked me her age and I said, "Nearly four," he could not contain his "wow!"

Let's not beat around the bush anymore.  She does what she does and she doesn't do what she doesn't do.

If you assumed that she was the age that her shirt size says she is, then she might just be a "late talker." Still in the realm of normal, but just "on her own timeline."

Nope.  She is four.  She doesn't talk.  She is in a different category.

It feels like that number removes excuses.  Any differences or deficiencies that she may have (in a stranger's eyes) are NOT because of anything other than the fact that SHE IS DIFFERENT.

And honestly, I'm feeling good about embracing that.  Telling people that she is four puts me in a different category, too.  I'm not shell-shocked anymore.  I'm not the brave recent-NICU-graduate-mother-who-you-forgive-for-wearing-sweatpants anymore.

I am experienced.

So when I say to a nurse that Emma was up all night, I am no longer a mother of a baby who is whining about her lack of sleep.  I am a mother of a four-year-old who knows that her kid *usually* sleeps through the night.

And that "unknown future" that I used to worry about whether or not I was allowed to worry about?

I'm living it.

Today will blend into tomorrow just as quickly as yesterday became today.

I promised myself from the beginning that I would celebrate her accomplishments and not focus on her lack of progress ... but doing that on a day-to-day basis is a choice.  And just like the difference between thinking you should maybe start working out and realizing that you've really gotten a lot of use out of that gym membership in the last year ... it feels really good to be able to say that I honestly have rejoiced more often than I have despaired.

Four years.

God has been so faithful.  Morning by morning, new mercies I see.  All I have needed, His hand has provided.

His faithfulness has been pretty great

Tuesday, October 9, 2012

For example

A few weeks ago, I took the kids to the park.  It was a typical playground; slide, tunnel for crawling through, monkey bars, etc.

Charlie ran and played and Emma stuck close to me.  She does that.

But then she got to thinking ... "maybe I could do this?"

I walked with her over to the stairs, and Charlie noticed right away that His Sweetie Worm was maybe going to come and play with him!

"Bear!  You're doing it!"

"Wanna come up here with Big Brother?"

"Just one more step, Bear, you can do it!"

"Look, Emma!  A tunnel!"

"Come on in, Emma, you can do it!  Just like Big Brother!"  (yes, seriously, this is how he talks to her)

She did it :)

I think they were both pretty pleased with themselves.

But here's my favorite part: When I picked Emma up from school one day last week, her teachers were so impressed at how confidently she climbed up onto their playground and into a tunnel like this one.  She would not have done that last year.

I said, "Yeah, Charlie taught her that."

Sunday, October 7, 2012

Letting him


I think most parents, at some time during their children's youngest years, can think of a time when they let their child "help" with something.  I remember when Emma was a tiny baby and Daddy needed to get something done outside, he handed Charlie a fake plastic screwdriver and asked him to "help Daddy."

Charlie LOVES to "help Daddy."  I think most kids do.

And as kids get older, their help starts to be actually ... you know ... HELPFUL.  Kids can pick up sticks in the yard after a wind-storm so that Daddy can mow.  Or, last year, Charlie's attempts at snowshoveling were actually starting to, well, remove some snow!

Now, it's very true that sometimes "help" is NOT helpful.  Once, when I was in elementary school, my family was going camping with several other neighborhood families.  My friend and I asked if we could help with the packing process, so our parents told us to go outside and "put the pop in the cooler."  We went outside and found several assorted cases of pop cans and a cooler with ice in it.  Painstakingly, we opened every single one of those pop cans and poured the pop into the cooler.  NOT helpful.

Charlie is at an age now where he will not be fooled by a plastic screwdriver.  He wants to actually help.

And here's my struggle sometimes: I have to let him.

If I'm making banana bread and he wants to help, that may involve breaking a few eggs.

But I'm very proud of him!  This past weekend, we decided to remove some landscaping rocks from a bed in our backyard.  Josh had a shovel and a wheelbarrow and Charlie had a shovel and a little red wagon.  They moved the rocks.  I could tell Charlie's heart was happy to be doing real work with his Dad.  He was actually helpful.

He wants to learn how to tube-feed Emma next.  I'm not ready for that. :)

But when my little niece comes over, he can feed her.  And help her wash her hands and face and lift her into her booster seat and open the gate to the downstairs and take her down and show her his Nerf guns.  When she wakes up from her nap, she will call for someone to come and get her.  It won't be me; it will be Charlie.  He is actually helpful.

I love watching how much he learns when he is helpful.  I love watching him grow with the responsibility and I love nurturing the desire he has to make a positive impact on his surroundings.  But I'm sure I'm not alone in the struggle to bite my tongue when it would be easier to just say "No, let me do it"  I'm sure I'm not the only Mom who needs to swallow her desire to keep the laundry folded neatly for the sake of raising a responsible son who will put his own clean clothes away.

I'm doing my best to let him help and he's getting to the age where I'm seeing the fruit of that.

Does it amaze you sometimes that God lets us help?

Does it absolutely astound you, the way it does me, that God's good work in the world involves US?

I mean, really, if God is making some proverbial banana bread out of this messed up world, do you think it pains him to watch us make a mess while trying to crack open the eggs?

If God has redemption planned, do you think he struggles with the balance of how much to do for us and how much to let us do so that we will learn?

(I'm sure he doesn't struggle with it ... He's God ... way smarter than me ... but you know what I'm saying)

I mean, I'm sure that sometimes God is handing me a fake plastic screwdriver, just so I can practice being helpful.

And I'm POSITIVE that sometimes we (the church, his children, Christ-followers) ... I'm CERTAIN that sometimes we get it a little wrong and, like me trying to "put the pop in the cooler," actually do more harm than good, while we're trying to be helpful.

But it absolutely humbles me that sometimes he really does give me a job that he's counting on me to do.  I hope I'm growing towards being actually helpful in doing it :)

Thursday, October 4, 2012

What I'm proud of him for

Charlie is smart.

I got an email from his teacher, saying that she is passing Charlie's name along to the Gifted and Talented coordinator at his school.

I'm very proud of him.

But to be honest, I didn't make him smart.  I didn't spend hours teaching him to read.  I don't know how he knows the math that he knows.  That's just who he is.  If I wanted to, I could dwell on it and develop an un-healthy and un-holy pride about the fact that he is smart.

But I didn't give him his brain anymore than I gave Emma hers.

They say that there are certain things you can't teach.

But for the things that matter, the things that MUST be taught, I have the best teachers EVER in my house.

Put on then as God's chosen ones, holy and beloved, compassion and hearts of kindness, humility, meekness and patience.

And above all these


[Colossians 3:12]

I am thankful for the little educators the Lord has placed in my home.

Wednesday, October 3, 2012

A weekend with the Bear

This past weekend, my daughter did the following things, all of which are miracles:

She went to the zoo and walked around looking at things

She sat with us at dinner with a bowl of food in front of her.  She picked up a spoon, scooped food onto it, and put the spoon in her mouth.  Several times.

She played in a corn maze

She walked around a garden center and picked out a pumpkin.

She helped me with dishes.  Her job was to follow the command "Close, please."  She closed a drawer, a cabinet, and the dishwasher when I asked her to.

She brought me a book to read when I sat down on the couch.  When we were finished with that book, she brought me another.  And then when we finished with the second book, she brought me a third.

She repaired mischief when asked to: she came out of her room with a pair of pants that she had fished out of the dirty clothes basket.  She was swinging them around, grinning like the cat that ate the canary.  I walked with her back to the basket, and told her to "put it in."  She didn't want to, and put the pants over her face with a big "look, mom, we're playing peek-a-boo" grin.  I removed the pants from her face and said firmly, "Put in!"  She did.

She made eye contact with me and repeated me when I said, "La la la"

She willingly, without being tired or ill, snuggled with me.

I am blessed

Tuesday, October 2, 2012

yes, i know

I've gone and neglected the blog again

I don't know where people get the idea that, once children are at school, Moms have more time to get stuff done.  So far, it just seems like there's more to get done (not the least of which is spend some time adjusting to being away from my kids so consistently!)

And ... cards on the table ... I've been in therapy and haven't really felt like blogging while doing the work that needed to be done for that to be beneficial.  I'm still not going to blog about it, other than to say that the events of the last year of my daughter's life have left me with some "stuff" that needed attending to ... I want to be honest about this journey, so I do want to share that sometimes we all need a little help ... and the help has helped :) 

And I think I've hit my stride again :)

Fall is beautiful, and Emma is LOVING it

And with Emma and Charlie at different schools, I do occasionally get to spend some one-on-one time with the dude.
But we're all just that much more busy these days.

I miss my time with my kids, but I'm so proud of both of them and all that they are learning this year.

Friday, September 14, 2012

Yelling for Birdies

"Sophie, want to come fill the bird feeder with me?"  Charlie asked her.

"Birdies?!?!"  My one-year-old niece clapped her hands in excitement.

I helped her get her shoes on while Charlie ran to get some sunflower seeds to pour into the empty feeder.

Charlie had told her that she could watch birds come to the feeder after we re-filled it, and she could not have been more excited.

"Birdies?  Birdies?  Birdies?"

While we waited for Charlie to come up from the garage with a cup of seeds, Sophie walked out onto the deck.  She saw the feeder and understood where Charlie was.  She was concerned, however, at the lack of Birdies.

She ran to the railing that surrounds our deck.  With a rung of the deck railing in each of her little hands, she put her face in between the beams, jutted her chin toward my back yard and yelled


Oddly enough, the Birdies did not come when called.

(It reminded me of this clip from my childhood, though.  Remember these guys?)

I'm not even going to say that she lacked patience.  It's more that she lacked understanding.  She did not understand all that needed to happen before the birdies came.  Yes, she didn't want to wait, but she did not pitch a fit when the birds didn't arrive right away.  She was honestly confused.

I'm like that with God.

I know that He works all things for good.

But when the road is getting long, sometimes it's just hard to remember that some of the most beautiful silver linings don't come without some serious clouds.

Sometimes, in the moments when I am keenly aware of how child-like I am before my Heavenly Father, sometimes I stick my chin out towards heaven and think "I'd like my Good now, please.  Yes, I know that the weather is beautiful and my children are smiling, but there are some things that I'd like fixed.  You can fix them.  Fix them now, please?"  Sometimes I forget that the beauty and the blessing and the healing and the grace and the "putting all things to right" are long-term promises ... sometimes I ask God if I can just skip to the end.

It's about as effective as yelling for Birdies.

As I run the race laid out for me, I must remember that this is a marathon, not a sprint.  Pressing on to take hold of that for which Christ took hold of me ... that takes a lifetime.

Wednesday, September 5, 2012

The best I could do

Emma started school today!

Starting today, she is going to school every morning, 5 days a week.

Her teachers and specialists are the same as last year and she'll be in the same place, but she is now in the morning program.  Which means, starting today, much more will be expected of her.

Starting today, she will be in a much more structured classroom setting

Starting today, she will wear her hearing aids every day (ahem ... )

Starting today, she will choose which snack item to taste with her peers, and she will taste the item she chooses.  If she does not like it, she must indicate with a picture card which alternative item she would like to try instead.

Starting today, she will sit in circle time and take her turn placing her picture on the attendance board every day (this is a skill she was able to demonstrate last year, too).

She will do more for them than she does for me.

And that's okay.  I'm Mommy. 

She's ready for this.

The best first day of school picture I could get was of her back as she ran from the front door of the building straight into her classroom. 

Go get 'em, girl!

Tuesday, August 28, 2012

Where did August go??

Emma had a rough patch, there, but is doing much better.  Once again, the details are diaper-related, so I'll just say I'm glad she's better :)

Charlie is still enjoying kindergarten very much.  I'm very proud of him

We had a fabulous camping trip with our amazing church community.  Don't you love it when community happens?

Feeding therapy is still going well, but we definitely seem to have hit a plateau now that she is MUCH more interested in walking.  I think we'll take a break as she starts school next week.

And my flowers are blooming :)

I've never really tried gardening before this year, but I think I'm hooked.  Charlie and I started these zinnias from seeds and I'm finding it to be very rewarding.

Enjoy the last few days of summer - it's been a good one around here, but fall is definitely welcome :)

Wednesday, August 15, 2012


Charlie was clearing the table after Taco Night tonight, and I was reminding him to be very careful carrying his plate as there were lots of little cheese shavings that I didn't really want to try to clean off the floor.

Free Range Emma crossed his path

Charlie's response:

"Oops!  Emma Crossing!  Watch out!  Hee Hee, you know, like those Deer Crossing signs?  You have to watch out for deer because you don't want to get antler marks on your car ... or maybe you do want antler marks ... I wouldn't, but I guess it's up to you ... "

I cherish the fact that he clearly has no trouble saying what's on his mind. :)

I read some advice once that said to be careful to listen to the little stuff when kids are little, because when they are big, you'll want them to tell you the big stuff ... and to them, it's always been big stuff.

And as an added bonus, this kid seriously cracks me up! :)

Monday, August 13, 2012

Free Range Emma

 The Bear has developed a craving for wide open spaces

She is loving her mobility ... and I think she thinks our house (or what parts of it she is allowed to wander freely through) is too small.

So Josh and I have started joking that she needs Free Range Emma time ... you know ... before she empties out the cookie sheet cabinet in an effort to find an appropriate sled for her latest attempt to navigate DOWN the stairs ... she's busy :)

Today, while Charlie was at school, Emma and I explored this park.  It was lovely.

Yes, for those wondering, her clothing did get a bit damp ...

But all in all, my daughter and I had a delightful morning together.  I'm thankful for the weather and the beauty of the area and, most of all, for the girl :)

Thursday, August 9, 2012

She's got skills

My little girl is all over the place these days!

She's learning so many new things.

Feeding therapy is going well.  We're seeing the results (again) of the VitalStim protocol.  So in these videos, you'll see Emma's fancy "stickers" on her neck; those are the electrodes to stimulate her swallow muscles.  You can tell she feels much safer with those helping her swallow.  She's much more confident, too.

She is quite certain that she's big now, so clearly she can feed herself and do her own oral motor exercises, right?

Gross motor skills are still really exploding, too

No, she can't get down the stairs safely yet ... but that's not for lack of trying ...

And her confidence with walking has gotten HUGE.  She has realized that, not only is walking faster than crawling, but it has the added benefit of freeing up one's hands for carrying things from one place to another.  This is thrilling to the Bear ... which means that, in the amount of time it would take a Mommy to, say, make a peanut butter sandwich, several refrigerator magnets can be placed in Emma's crib AND we can also "help" Big Brother with his laundry by bringing him some of the shirts Mommy hadn't put away yet in the Bear's room.  If you ever come over and find board books in my toilet ... please don't judge :)

Her most recent milestone, though, has been the ability to stand up all by herself.  Yes, I realize that this typically happens BEFORE walking, but I've heard that it's pretty common with CdLS kiddos (maybe because of their tiny little feet?) that walking happens first.

Check out the technique, though.  This child's core strength amazes me!

No, seriously, I've been trying this and I can't do it!  Can you go from sitting on your bum to standing without putting your knees or hands down?  

I love watching her grow!  She's gotten to be such a big girl ... all 22 pounds of her! :)

Monday, August 6, 2012

First day

Charlie went to Kindergarten today! 

(yes, it's a little early.  he's going to a charter school and they have a "stretch schedule."  it's not year-round, just longer breaks during the year and a shorter summer, which i am very excited about)

So today was Charlie's first day of school!  How is it possible that he's gotten so grown-up?

He was a little nervous, but mostly excited

As you can see, by the time he had hung up his bag, found his seat and put on his name tag, he was a little done with Mommy's pictures and ready to start his day.  He'd never say it, he's way too polite, but I could tell that he is ready to stretch his wings a little and be big.

He loved his first day.  He came home exhausted but pleased.

He definitely noticed the difference between preschool and kindergarten ("There was more learning time and less play time," he said.), but he also told me how excited he is to learn new things! 

He's ready

And I didn't cry ... much

I don't know if he knows how much I pray for God's blessings for him, but I know he knows I love him, and I know he's so very ready for this next huge step.

Man, I love that kid!

Thursday, August 2, 2012


We're battling an infection around Emma's Gtube site right now, so between that and a ramp-up in the therapy schedule during Emma's break between Summer School and September, not to mention Charlie starting Kindergarten next week ... it's been a little busy around here.

not that I mind :)

I've been trying to train myself to follow Phil 4:8 more closely:
Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable, if anything is excellent or praiseworthy - think about such things.

I am, in general, a pretty positive person, but I believe we all plenty of opportunity in our lives to CHOOSE joy or despair on a moment-by-moment basis.

I think I've said this before - I'm doing my best to choose joy

When you take a minute to have a look around, life is usually pretty good :)