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.