Tuesday, December 20, 2011

How's it goin?

Just an Emma update ...

Emma is definitely still suffering from reflux, but the past 2 days have been MUCH better.

She has been on an antacid for years, which helps the acidity of her stomach, but this current issue is more about mechanics than chemistry.  Her Nissen (wrap at the top of her stomach that should stop stomach contents from going "up") has been called "incompetent," and things are going "north" when they should be going "south."

She is now also on a med that should help things move south more quickly so they don't have a chance to go north, but too much of that med results in more stinky laundry than I'm comfortable with.

So we've been messing with the dosage of that medicine a bit, because the past couple of weeks were AWFUL for our girl.

But on Sunday we started a new bottle of Prevacid (same med she's been on for years, just a fresh bottle) and it seems to be making a difference.  She is clearly still refluxing, it just seems to be causing her a little less distress.

So maybe the old bottle had gone bad somehow?  Maybe the increased pain was from reflux that was too acidic and now she's still refluxing but it's less acidic so it hurts less?

(or maybe it's the prayer card we filled out for her on Sunday? :))

Either way, life is better today than it was a week ago, and that's good

Our plan is to let ourselves have Christmas and then let Charlie have his 5th birthday before we do anything.  We have some decision-making appointments in early January, but until then, I'm going to be thankful for the happy-er Bear :)

Monday, December 19, 2011

Hark!

Oh.  My.  Goodness.

What is it about December?  Every emotion just seems magnified during this time of year, doesn't it?


Here's what's been going on around here:

Emma's reflux has been causing her pain lately.  It's been several weeks of rough days with her pain episodes.  (with, I'm sure, a few tantrums thrown in there for good measure, but sometimes it's hard to tell)

If you've seen us lately, you may not have witnessed any of these episodes, because she can be distracted from focusing on the reflux.  However, having to CONSTANTLY entertain the three-year-old is exhausting ... and having to choose between carrying her around and listening to her cry is wearing on me.

Last night, though, she actually had a pretty good night.  She got down and played with some new toys, giggled with Daddy, read some books with me ... Josh and I looked at each other and realized how long it's been since we've seen our old, happy Bear.  We realized that we had gotten used to a very fussy girl.  It was a wonderful night, but it highlighted for me what we've "adjusted to" around here.

This morning, she woke up pretty grumpy again, but actually did pretty well at Big Brother's preschool Christmas program.  It's very up and down.



And I don't think I'm the only one who feels strained to find a moment in the busy-ness of December to really "soak in" the joy and message of the season.  It feels juxtaposed to me this year.  The midnight clear and little town and angel choir and good news and great joy feel like they are in a different world somehow.



Occasionally, though, Christmas breaks through.  Mostly it comes through a quiet and unassuming song or tiny moment with the lights on the tree and a hug from my son.

But let this serve as a public announcement:

I may burst into tears (happy or sad) at any moment during this Christmas time.  Should this occur in your presence, a hug is all that is required :) 

Tuesday, December 13, 2011

That's what ...

Christmas is all about, Charlie Brown :)


Wednesday, December 7, 2011

I was a lot smarter before I had kids

Charlie: "Mom, why are the flags flying lower today?"

Me:  "People fly flags at half mast to remember or honor someone or something that has happened."

C: "What are they remembering today?"

Me: "It's Pearl Harbor rememberance day today.  On this day 70 years ago there was a big attack on America at Pearl Harbor."

C:  "What happened?"

I told him as much as I knew about planes coming from Japan and dropping bombs on American battleships in the Pacific Ocean.

He paused for a little bit and then asked

"Why?"

Tuesday, December 6, 2011

Deck the Halls

We've carefully chosen a "toy for someone who doesn't have as much as we do"

And piled Mommy's ENTIRE side of the family into Uncle Mark's truck to cut down our trees together.

The kids have helped Daddy make sure the tree is straight and centered.

"Helped" ... right ...

Emma was particularly helpful with the lights

We've wondered ...

and investigated.

Daddy's job is to put the star on top.

We've hung our very special ornaments.

"The angels are near the bottom because they are like the angels who came DOWN from heaven to tell the shepherds about Baby Jesus."  Seriously, where does he come up with this stuff?

We've told Emma all about her "Baby's first Christmas" ornament and how glad we were to have her home!

And we've set out Mommy's manger scene.

We've inspected our handywork.  many.  many.  times.

And now we're all exhausted! :)

Merry Christmastime!

Monday, December 5, 2011

Charlie flashback

Just for fun :)

My little boy was asking me about songs he liked to sing when we was little, so I pulled up some old Charlie posts.  This one is him singing Our God is an Awesome God and one of his very first Bible verses ("I not be afraid for God is miss me")
And this one is Charlie's version of Mighty to Save.

Both are from NICU days.  I have no idea how either of my kids have gotten to be so big!  Last I checked, I had a toddler and a baby ... and I'm pretty sure I'm not a day older than 26 ... right?

Oh, well.  :)

I just had to share ... these are, in my opinion, pretty stinkin cute :)

Friday, December 2, 2011

This child ...

cracks me up!

 She spends a lot of time just being goofy, which I love.


And she's back into a phase where I can plop her down with toys and she'll play independently for quite some time. 


People have asked how she's doing.  I honestly don't know the answer to that question.  She had an illness and needed antibiotics, which always throws her GI for a loop, but that's finished now and we're sort of back to "baseline."

But I'm really sure what that is.  There are days when I think that maybe the Plan B medicine is actually working well enough that we could maybe avoid surgery for awhile, but then I find her lying on the floor moaning.  She's doing great ... until she's just not. 

And she's 3 ... so yesterday she had SEVERAL screaming episodes that could have been pain ... or they could have been "I'm three and you're not getting me what I want and I'm mad even though you have no idea what it is I want"

sigh

So we're plugging along.  We've got an appointment next week to discuss what surgery would look like.

I really really really hate this decision.  I don't say "It's not fair" very often, but IT'S NOT FAIR that my (medically complex) little girl can't talk and tell me what's troubling her ... and so therefore we have to decide whether to take her to the OR to open up her abdomen based on ... her sleeping patterns?  Her behavior? (Did I mention she's three?)

But we just had a delightful playdate and she's happily napping working her way down for an afternoon nap.  So today is good.

And I guess what more do any of us ever have, right?




I am Emma, queen of all!
 Either way, I know we will be ok.  God is God and I am not and that is good.  Right? :)

Tuesday, November 22, 2011

Thank you for ...

I have lots of vivid memories from my 5th grade Sunday School class.

Two men teamed up to teach the class, and had for years.  They were very very good Sunday School teachers.

The only negative memory I have of that class was the prayer time at the end of every lesson.

I think our teachers wanted us to start getting comfortable with praying out loud as a group, so at the end of every lesson, we stood and went around the class and everyone had to say something.

I'm sure it was a good idea on paper, but what it turned into was a bunch of very timid middle-schoolers NOT wanting to stand out in any way ...

So we all said the same thing:

"Dear God, thank you for my family and friends."

Around the circle the chant went, deadpan and robotic, all of us fearful of possibly putting ourselves out there in any sort of vulnerable way, so all of us saying,

"Dear God, thank you for my family and friends."

Week after week, that's what we prayed.  I'm not really sure how it got started, but it was the rut we fell into.

So now, when I think about thankfulness, that sentiment sounds cheap to me.  Like it's cheating.  Like I should be WAY more profound than thanking God for the family and friends I am surrounded by.

But

God has given me some AMAZING friends.  They support me so wonderfully and challenge me to be a better wife and mother.  I am so blessed by my friends.

And I have an INCREDIBLE family.  My husband and children love me so much more than I deserve, and our extended families also support and love us so generously.  I could not ask for better in-laws, better siblings, better grandparents for my kids, or a better father to my babies.

So my overwhelmingly heartfelt prayer this Thanksgiving is

Dear God, THANK YOU for my family and friends.

Saturday, November 19, 2011

I never met him

We are so blessed in this day and age to have the ability to connect with people all over the world through these strange little boxes.

When we first got Emma's diagnosis of CdLS, it was terrifying to know that no one would know what we were talking about when we said those letters.  When we first brought her home with a tube sticking out of her, it was isolating to know that no one we knew would be able to give us the comforting advice of someone who's "been there."  I'll never forget the panic I felt the first time I saw the bright red in that tube that told me that her stomach was bleeding.  I felt like I was the only parent alive who had ever seen such a thing.  It was awful.

But then I discovered this group of very unlikely friends.  Through this blog and then later through other sites, I "met" some amazing people.  We are mothers, fathers, gay, straight, liberal, conservative, single, married, engaged, divorced, Christian or not.  And we are FAMILY ... even though, in some cases, we've never met.

We all love someone with CdLS.

And through this strange, miraculous technology (for which I am VERY thankful!) we can be in touch at all hours to ask questions like, "How do you stop inquisitive little hands from feeding the bed?" ... and we know that we'll find someone on the other end of the "wire" who KNOWS what we are talking about.

We've been there.

We rejoice like no other because we KNOW what it's like to wait a long time for those milestones.

We bear with one another and hold each other's burdens, because we know the PAIN of ... well, all of what makes this unique road hard.

And we laugh and are comforted because our child is not the only child who will, for example, only walk holding your hand ... we sigh because a push toy won't do and we smile because we remind one another of what a blessing it is to get to walk with them for awhile longer than most. 

It's amazing how much these kiddos have in common!

And I know that it's weird to think about being close friends with someone you've never hugged.  And I know that being emotionally invested in these relationships is confusing.  I wouldn't have understood it a few years ago. 

But I'm mourning the death of a child I've never met today.

And I know that's weird

And I know it's confusing.

But one of our little CdLS boys passed away this week, and we all mourn together.

And yes, we probably internalize it a bit, also, knowing that we have no guarantees.  It's a complex set of emotions, to not want to "borrow" someone else's pain, but to feel it in a way that hits closer to home because ... well, when I saw a picture of his smile, it looked so much like Emma's smile ... and when I heard a video of his laugh, it sounded so much like Emma's laugh.  And when ... well, you get the idea.

We're reminded that, not to sound too cliche', but every day really is a gift from God.

Dear Jesus, please surround this little boy's family with peace and love today.  We rest in the knowledge that he is with you in paradise, but we know he will be missed.

Monday, November 14, 2011

"I wish Emma didn't have CdLS"

Charlie has two little ones in his life who are around 10 months old.  One is his cousin Sophie and the other is the son of a friend of ours who I'll call "L".  :)  The thing that's super fun about this age is that they think Charlie is HILARIOUS!  It's the age where all he needs to do is touch his forehead to theirs and say "Ahhhh-boo!"  and they'll laugh.


The hard thing about that age, though, is that they are just about the same 'size' as his sister. 

If you were to ask me about my 3-year-old's skills, I would tell you that she's probably developmentally  about 12 months old.  She says, "mama" but not much else and she can walk but it's still faster to crawl.  She wears 18-mo clothing just like his cousin, and she's just as needy.

So when we were sitting at lunch the other day, I could have read his mind, watching him watch his sister.  He walked over to her and put his forehead to hers and said "Ahhhh-boo!"

She didn't laugh.
He used to be able to make her laugh ... but these pictures are from Dec 2009

I'm not sure if it's because she's too old for that or if she's just not cognitively or socially typical or if the novelty of her brother has kind of worn off by now, but it clearly affected him that she didn't laugh.  He didn't get upset, but I saw him sit back down, very deep in thought.

"Mommy?  I wish Emma didn't have CdLS."

"Yeah ... Why do you wish that, buddy?"

"So that she could talk to me and I could talk to her"

"I wish that, too, Charlie."

I thought for a long time about the right thing to say next.  (SERIOUSLY, WHERE IS MY PARENTING MANUAL???)  I was proud of him that he was able to give voice to what he was feeling.  I was conflicted about what he said, though.

"But, think about it, dude.  If she didn't have CdLS, she wouldn't be the same little sweetie worm."

"Would her name still be Emma?"

"Well, yes, I suppose, but we love her just the way she is, right?"

"YES!"

"Then, well ... I guess we can wish she would talk and wish she didn't have so many appointments and sicknesses, but ..."  I didn't know how to finish that sentence.

"Yeah, I don't like appointments, mom."

"I don't either."

I thought again for awhile

"You know, Charlie, we don't know that she'll never talk.  We just have to be patient sometimes with some things."

"That's hard."

"Yeah, but that's where God helps us.  Remember your fruits of the spirit song?  He gives us patience."

(he breaks into song) "Cuz the fruits are love joy peace patience kindness goodness faithfulness gentleness and self-control."

and then the moment was over, lost in the silliness of the song. 

Charlie sat and hummed and ate his lunch and I want credit for the fact that I did NOT cry.

I do NOT have this all figured out!

I wouldn't trade Emma for the world
Without CdLS, Emma wouldn't be my Emma
I sometimes hate CdLS
I love Emma



(and, parenthetically, there's this whole theological side of things that i don't really have figured out either.  someday i'll write my "did God give emma cdls?" post, but today is not that day.  i guess i'd refer to Psalm 139 and Ex 4:11, but i'm still sure i'd get it wrong.  either way, i have a strong sense that God doesn't make mistakes.  in fact, i would find it offensive if someone were to say something to me about "the child she would have been" had this terrible thing not happened to her.  but i can think of instances in the Bible where God clearly allows suffering ... and there is certainly suffering on this road ... so while emma is clearly a blessing and cdls is all tangled up in that blessing, i'm not sure whether i could ever separate cdls from emma when i thank God for her ... so am i allowed to wish she didn't have it?  i'm not sure ... but God can handle that :))


Sometimes I think that, when we are both grown-ups, Charlie will have this figured out WAY more than I will.  He gets the benefit of being a child at the beginning and not having the burden of worrying about saying the right thing.  I'm all grown-up and afraid I'll offend someone if I admit to not liking CdLS, but he doesn't have that burdening his process.  He just gets to love his sister.  And as he grows, his love for her will certainly get more complicated, but it will grow, too.  I'm really really proud that he is mature enough in his love for her to admit that sometimes this stinks but that he loves her anyway.

He still thinks she's his silly little sweetie worm :)
(this picture was taken after that conversation ... he still likes her :) and she likes him, too)

I am so blessed to be their Mommy.

Saturday, November 12, 2011

Happy Birthday to Emma

It's hard to believe she's three!

I love her so much, I can't picture life without her, and I'm really really proud of her.

But I have to say, today is a little depressing.

Yes, there are the expected emotions of the word THREE ... now having to tell people that my THREE-year-old doesn't talk yet and that kind of thing.  In many ways, she does seem three to me (can we say DIVA?), but in so many ways, I agree with the strangers who say, "wow, she doesn't seem three!" ... not that it doesn't still sting a little to see their surprise.

But actually, that's not most of why today is depressing.  Today is depressing because, for the second year in a row, we've had to cancel our family celebration of her birthday because she's too sick.  Last year, she was in the ER on her birthday, so I suppose conjunctivitis and a sinus infection (in addition to continuing unresolved reflux issues) is an improvement, but it doesn't feel much better.

On the plus side, though, I can talk again!  My throat is still pretty sore and it hurts to eat and all that ... so really what this comes down to is that I've discovered the best weight-loss plan EVER ... or not. :)  But I think by Monday I will be very ready to join the land of the living!

So happy birthday, Emma!  Your family and friends love you immensely, even though we have to hold you down and put drops in your eyes.







:)

Friday, November 11, 2011

Checking in

Emma is sick and my recovery isn't going as quickly as I would have hoped.
For those who don't know, I've been MIA lately because I had my tonsils out. Yes, I know, I'm a little old for that :)
It's something I've needed to get done for awhile now and when we scheduled the surgery, it seemed like we'd arrived in some calm waters in our crazy life.
But the surgery was a week ago and I'm still unable to talk. I'm weaning myself from the narcotics today because it's time for Josh to go back to work and me to be able to drive. Children's Advil tastes really yucky, btw ... but I can't exactly swallow pills yet.
And on top of everything else, Emma seems to have developed a cold. Poor baby!!!! :(
And, one more time, cue the Mommy Guilt!
I have to say, though, I could not be more thankful! I am SO thankful for our family! The grandmothers have been SO wonderful helping us this past week!!!! And Josh has done a really great job of ... you know ... doing what I do :)
Thank you, Jesus, for my family. I don't know what I'd do without them!

Saturday, October 29, 2011

Not Okay

Emma is not okay.

Her pain from her reflux seems to have gotten worse, and sleep around here is a pretty rare commodity.

Up until this latest issue, we would have usually fed Emma about 40% of her daily calories overnight through her tube while she slept. And when this issue first started, we were feeding her even more overnight because she was retching and gagging so much during the day it was was hard to get enough in during daytime meals.

Then we started Plan A, which was a small amount of a medicine 4 times a day that was supposed to 'speed up' her digestion. The hope was that her food would get sent 'south' out of her tummy before it could travel 'north' in reflux. Plan A worked in that she started retching less, but ... well, not to be gross, but the plan of getting stuff to go 'south' quicker started working a little too well.

Next up was Plan B, which is an even smaller amount of the medicine 4 times a day. The big 'D' seems to have gone away for the most part; her diapers are back to normal (I know you REALLY wanted to know this ...). But now Emma's retching is slowly starting to come back. And this time, what's really making life miserable is that her nighttime reflux seems to be really really bad.

She wakes up at night moaning and retching and gagging and coughing. If we go to her, she just arches her back and reaches back for her crib; she clearly just wants to sleep. Then she does that 'breath-holding-breathing' that sounds like she's in pain for awhile, and finally she does fall back asleep for a couple hours until she's up again and we do it all again.

When I spoke to her pediatrician last week, she said that Plan C is surgery to redo her Nissen. This is a much more major surgery than just getting her ear tubes replaced, and I really don't want to put her through it. Her doctors (primary and GI) feel that we need to make sure we give Plan B a fair chance to work before we move on to surgery, so the plan was to call them during the second week of November. Drugs need time to really fully take effect, especially when we're talking about tummy drugs ... I know that ... but we want Emma all better NOW!

I don't think Emma's going to get all better now ... or tomorrow ... or the day after that. I think if the drugs are going to work it's going to take time. And even if we do move to Plan C, surgery like that doesn't usually get scheduled over night.

So we're plugging along. We're starting to feed her less than we have been, which is an awful feeling, but if putting food in her tummy while she sleeps causes pain, then we'll put less food in her tummy while she sleeps in an effort to cause less pain. We've been so good about keeping her calories up to where they are supposed to be, it feels irresponsible to feed her less than that, especially since her appetite has nothing to do with what goes in. I hate the thought that she might be hungry, but we can actually get her play with us happily when she's not in distress because her tummy is trying to empty in the right direction. And ... cue the Mommy-guilt.

God is good, all the time. We appreciate prayers. Emma will eventually be ok, just not right now.

This sucks.

Thursday, October 27, 2011

Smiling Pumpkin

















As much as I wish Emma didn't have to go to school in the afternoons, I do love me some time with my boy.


Happy Fall!



Tuesday, October 25, 2011

You don't know

We were sitting along a window ledge at the Children's Museum eating lunch. She was sitting alone a few feet down, obviously waiting to meet someone.

She was old enough to be my mother, but was wearing more jewelry and had a much bigger purse than my mom does :)

As Charlie took his first bite of his PB&J, she struck up a conversation with him about how cute his shoes were. I sighed, because I had been hoping I'd be able to get away with feeding my daughter without a stranger commenting on it.

No such luck.

This lady was more bold than most, she opened with

"How long does she have to eat like that? When are you going to be able to start feeding her normally?"

Usually that question is about 5 sentences into the conversation, but I guess we were just diving right in that day.

I told her that Emma has been tube-fed since birth and that it was a matter of getting her muscles strong enough. I stopped there because it was already feeling like there were going to be more questions than answers in this conversation.

The woman told me that she had a friend with a grandson who was tube-fed.

She rolled her eyes toward me and said,

"Except he's almost THREE! Can you believe they're still feeding him that way when he's almost THREE years old?!"

As if it were a choice. She nodded at me as if she had just told me the juiciest gossip about the worst parenting decision she'd ever heard.

I asked why he had gotten the tube. She rolled her eyes and told me she wasn't sure, but it happened in NICU "because you know how those DOCTORS are!"

"and now they've all just gotten so used to the silly thing; it's made him LAZY!"

I opted out of telling her Emma's age and just smiled politely.

Then Emma pulled one of her hearing aides out. I told her, "No, no, Emma. We need to keep those in your ears!" And put them back in.

I was about to engage Charlie in conversation, but the aforementioned woman interrupted as Emma pulled the other aid out.

"Oh, come on, Mom! She doesn't want to wear them! It's too loud in here for her, let her keep them out!"

I didn't respond at that point. I put the aid back in and distracted Emma with a song and she kept them in for awhile.

"Does she talk?" was up next.

I just politely smiled and said that she will someday but that she's got a lot going on. Mercifully, Charlie asked me to open his applesauce for him at this point so I had an excuse to attend to my son.

And I'm not kidding when I tell you that this way this woman exited this conversation was to point to another stranger and say, "Oh my gawd, I NEED to ask her where she got that sweater!"

I didn't blog about this encounter when it happened because a) I had a WAY more important adorable video of Emma to post from that day instead and b) I didn't want to just whine. And actually, to be honest, she didn't hurt my feelings as much as she left me feeling angry and self-righteous. How dare she give me advice, right?

And then I read this post this week about assuming the best in others (on a different topic, but still applicable) and it got me thinking about that encounter.

See, when I left the Children's Museum that day, my inner monologue was going something like this:
You have NO idea what you are talking about! DON'T tell me you know best about how to feed my child! And DON'T pretend to understand how important it is that Emma learn to wear her hearing aids in a noisy place! I'm guessing you have NO CLUE what it's like to raise a child who you know might NOT TALK!

etc etc


It reminds me of a conversation I had one time with a friend of mine. She was going through a Master's program to become a Speech and Language Pathologist when I was pregnant with Emma. She told me that an important part of an introductory class she took was a concept of "Unconditional Positive Regard."

Unconditional Positive Regard is the idea that you, as the therapist, must assume the best of the families you work with. They may be totally disheveled and late and have forgotten a crucial piece of equipment, but the professor emphasized that the therapists must unconditionally hold the family in high esteem.

Haven't I heard that somewhere else before?

Like, from a source that should, perhaps, hold even more authority in my life than a professor I've never met?

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

(I Corinthians 13)

'Love one another'

But wait .... does that apply to ME, also? :) Like, I need to hold HER in positive regard as a fellow child of God?

Oh

hmmmm

The moral of the story?

I have NO IDEA where that woman was coming from, either. I have no clue what brought her to that conversation that day.

And, for that matter, I have NO CLUE what is going on in the lives of most people I see in public on a day-to-day basis. When I silently judge the stranger in Target whose three-year-old with a pacifier in his mouth stomps his foot and screams for candy because he knows that she'll give it to him if he yells loud enough, I NEED to remember that I have NO IDEA what her life looks like. Is her husband in Afghanistan? Second child in NICU? I don't know. And even if I did, I don't remember God putting me in a position to judge that person anyway. My assumptions are probably wrong, and judgement is not my job

Christ calls me to have a different attitude than what I had toward that woman when I left the Children's Museum.

I forgive her

Christ forgives me :)

Sunday, October 23, 2011

My consolation prize

I've been thinking a lot lately about prayer.

Actually, I've been thinking a lot lately about having the courage to pray a really big, specific prayer, knowing that the answer might be 'no.'

We learn from a young age not to ask for a pony or a motorcycle for our birthday because of how much it stinks to be disappointed when all you got was that lousy sweater.

"Gee, Dad, thanks ..."

I've been clinging lately to a passage in 2 Corinthians 12 about Paul's thorn in his flesh. We don't know what exactly Paul's struggle was, but Paul says that he pleaded with God three times to have the struggle taken away.

But he said to me, "My grace is sufficient for you, for my power is made perfect in your weakness." (v 9)

Paul prayed a faith-filled prayer, PLEADING with God that his thorn be removed. And God said 'NO.'

And what Paul got instead was grace, strength, and God's power at work within him.

But am I the only one who has a little voice in the depth of my heart tempting me to say "Uh, gee, God, thanks ..." when I pray a big prayer and I get those things instead?

I mean, Paul heard all the stories of the people Jesus healed! The blind could see, the lame could walk, a dead girl was brought back to life!

All he's asking for is one less thorn!

[And all I'm asking for is a little less GI reflux in my girl!]

But his faith-filled response is "When I am weak, then I am strong."

So I'm challenged. I'm challenged to once again approach the throne of grace with confidence and present my requests to my heavenly Father. The One who flung the planets into orbit and hung all the stars in the sky bids me come and ask.

And if His answer is 'no' to my request, then I know that what I will get instead is His peace, grace, and strength.

And if I remember that God is good, all the time, and that He loves me and that HE LOVES EMMA more than I can imagine ...

then I can accept that those things are a pretty sweet consolation prize.

Wednesday, October 19, 2011

Good Times

The kids and I went to the Children's Museum this morning and had a really great time!





























Emma really got into playing at the water tables. I kind of almost cried, it was so normal :) She stood there playing just like all the other kids her ... umm ... height. And I was so enthralled by her exploration that I'd like to take this opportunity to publicly apologize for being "that mom" who completely ignores her oldest child while he shares nicely at the water boat station while trying to video her youngest child doing clearly amazing things.












I'm sure the novelty of this will wear off very soon, but I'm so excited! After 3 years, I am FINALLY the mother of two young children who are walking in opposite directions in public!!
























I'm so proud!!!!!!!!!!!!!!!




And lastly, a riddle: What do good Daddy's do when they have to work late in October in Minnesota but their son still wants to play football in the backyard?















Drag out an extension cord and as many trouble lights as they can find and play in the dark! Pretty sweet, huh?

Sunday, October 16, 2011

Letting out some of the crazy

Life has been a bit crazy around here lately. We've discovered that Emma has some un-resolved reflux issues and we're starting to walk down the road of "Plan A, Plan B, Plan C, and then major surgery" ... it's stressful, and I don't really want to go into all the medical details right now because I'm not sure I understand all the possibilities myself.

But the bottom line right now is that we've been suspecting for awhile that Emma has some "discomfort" that isn't being addressed, and last week we took a trip to radiology that confirmed it.

So ... if you are a parent, you probably remember (or possibly you've blocked out the memories!) those early days when you brought your first child home. Those first few weeks certainly bring moments of joy, but do you remember the terror? The panic? The sleep deprivation that led to insane, illogical worry? I'm quite certain I am not the only new mom who ran, panicked, down to my son's room to see if he was still breathing the first time he slept for more than a 5 hour stretch! And I'll never forget the first time he got a good enough 'bonk' that he did that cry-and-then-run-out-of-air-and-not-inhale-for-long-enough-to-go-pale-and-mommy-panics-until-you-scream-again cry. (Please tell me you know what I'm talking about because that took a long time to type :))

But when you bring home a 'typical' newborn, eventually you realize that everything will probably be okay. You start to understand that a mild fever probably just means he's teething and even if he pukes his guts out, you will probably not even need to call a doctor. For a 'typical' child, you start to understand the power of a Mommy Snuggle and you soon get your sea legs about what does and does not constitute an emergency.

Well, I think for a lot of us parents who have kids with complex medical stuff going on, that initial period of mental instability never really leaves. There are seasons when I feel like Emma's health can turn on a dime ... and I don't mean that she might get the sniffles. So that 'season' of knowing that a full night's sleep is not guaranteed? I'm going on Year 3.

So I'm going to share a glimpse of the piping hot bowl of crazy bubbling just below the surface. It's okay, you can laugh. Letting some of the crazy out makes me feel better ... like a pressure release valve or something.

Emma is showing us in several ways that something is bothering her at night. And now that I know that her reflux is not as addressed as we thought it was, every move she makes at night reminds me that she may or may not be in pain.

So a couple of nights ago, I was having trouble quieting my mind before bed. So I had a beer (gasp!). That combined with the chili I had for lunch led to some indigestion. Nothing major, I wasn't sick, I just woke up at about 2 AM needing a Tums.

So I went into the bathroom to find some antacid and I started to cry.

I couldn't bring myself to take the Tums

Emma couldn't just take a Tums.

So why should I get to just take a Tums and go back to bed while my daughter suffers?

Instead, I felt the correct thing to do was to sit up in bed and literally feel Emma's pain.

Logical, I know.

And then, ladies, remember what happens the day after you've been up Mommy-worrying for no reason? If you're anything like me, you not only didn't get a good night's sleep, you are enraged that your husband had the audacity to sleep through what was clearly a crisis that needed attending to (like running to a child's room to check if he's still breathing when he's obviously fine).

So, while I was toughing it out without a Tums in solidarity for my sleeping Bear, my husband was snoring. Jerk.

I was the epitome of a loving and respectful wife the next day.

And I was a pillar of emotional stability the following day (which, by the way, was my grandmother's funeral ... my poor husband didn't stand a chance).

My husband is a very wise man.

And therefore, yesterday, he enforced a strict nap-time policy. For me. I slept for 5 hours.

I'm feeling much better now and ready to face whatever the week may bring on all fronts.

But if you feel so led, please pray for Emma's health? I was reminded this morning by a very wise pastor that my God is way bigger than my storm, but I'm sure 2 AM will bring all sorts of new SUPER LOGICAL reasons why worrying is CLEARLY the best thing for me to do.

So maybe some prayers for me, too? :)

Peace. Be Still.

Take a Tums and go back to sleep.

Thursday, October 6, 2011

A day in the life of the Bear


My mommy and daddy had to wake me up really early this morning for a swallow study downtown. My mommy told me that she knew I wouldn't like it but that I had to do some eating for some people to take some pictures.

I was mostly good. I knew I had to open my mouth for food for Mommy, but I didn't like the white stuff they put it in, so I had to spit it all back out. The mean therapist even put a syringe in my mouth to get food back far enough so I'd swallow, but I showed them! My tongue is a lot stronger these days (I've been working hard!) and I was able to even get that food out to spit it out.

The therapist said if I was strong enough to do that, I was strong enough to keep myself safe while I ate. I passed!

My teachers at school were so proud of me! They said I get to eat there now, too!

I had a very busy day at school. I have jobs to do. First we sit in a circle and take turns standing up from our chairs and putting our pictures up on the school chart. I picked out my picture from the board with everyone's picture on it all by myself today and moved it to the chart. I didn't need any help at all!

Then I had to make sure the tractor worked. It has a button that I push that says "GO!" when I want it to go. I drove that for awhile.

Then I had a picture to paint. I stood by myself (with my hand supporting me) at an easel and painted with red paint for about 10 minutes. I needed to change clothes after that. I also needed to wash my hands so I held my hands very nicely under the water for my teacher to help me wash them. This is one of those things that my teacher knows how to do but my mommy doesn't. So I wash my hands while I'm at school, Mommy had to wipe them off with wipes at home. Maybe someday Mommy will learn how to do it right!

After that, Ms C the audiologist needed me to play a hearing game with her. I looked in the direction of the toy that made the noise. My teacher told my mommy that I did a really great job finding the right toy. I've gotten so big.

Then we went back to the room for snack time and my speech teacher got to work on feeding with me and then before I knew it, it was time to go home! I didn't really want to leave, I was having such a great time, so even though they kept trying to get me to walk toward the door, I had to keep walking backwards to stay in the room. My PT told my mommy that this was something called a "Developmental Milestone" ... I'm not sure what that means, I just wanted to stay and play!

I walked out to the car with my teacher holding on to the pretty bracelet they give me to hold while I'm at school. I wanted to show my mommy the bracelet, so I walked without anyone holding on to it for 5 or 6 steps before I realized my mistake! See, Mommy can't know I can walk without help. I like holding her hand, so I'm doing my best to never walk while she's around so she'll keep helping me when I'm at home. It's my little secret, so hopefully I didn't blow my cover today by the car. My mommy talked to my teacher for awhile, so I took a couple more steps on the sidewalk with my PT while Mommy wasn't looking. I'll make sure to not do any walking at home tonight and I'm sure Mommy will forget about my mistake. And even if she wants me to walk without her, I can just look at her sweetly and say, "MAMAMAMA" and she'll give in.

She loves me that way.

And she says I'm lucky I'm cute.

But mostly she just loves me :)

Monday, October 3, 2011

The letter C

Charlie's preschool has a "letter bucket." Each week there is a letter of the week and one child is selected each week to bring the bucket home and fill it with things that start with that letter.

This week, the letter is C and Charlie got to bring the bucket home over the weekend to fill with things that start with C.

We filled it with a Car (a toy Corvette, to be specific), a Can, pictures of Cousins, and his Cat in the Hat book.

Then, this morning, he said to me, "Mom, Emma has CdLS! Can I bring her in?"

Um, wow. Okay, buddy!

We asked his teachers, whose eyes filled with tears, if Charlie could tell his friends about Emma's CdLS during his letter bucket presentation. They said yes. Emma was pretty sure she was queen of the world that she got to be in Charlie's class today.

I had asked him on the drive to preschool what he was going to tell his friends about CdLS. He said that it means that she "eats with a tube and had an owie on her tummy when she was born and uses sign language instead of talking and is very little and my cute little sweetie worm."

Okay, then.

So I brought Emma for his presentation. She pretty much giggled the whole time.

So here's how it went:

"This is my car and this is a can and this is my cousin Sophie and this is my cousin Ruby and this is Emma, she has CdLS, and that means she eats with a tube and had an owie on her tummy when she was born and uses sign language instead of talking and is very little and my cute little sweetie worm and this is my Cat in the Hat book."

No big deal, Mom!

After letter time, several of the kids wanted to play with Emma. One little girl asked about her button, so Charlie pulled up Emma's shirt and showed it to her and explained how it worked and then Emma chased another little girl around who had flashing lights in her shoes and everyone laughed. And then they went and did an art project. Whatever. Totally normal, everyday occurrence, right?

I love how normal this all is to him! These children seriously melt my heart everyday and I am so blessed that God picked me to be their Mommy.

Sunday, October 2, 2011

Knowing ahead of time

Around this time of year, I start to get a wide range of emotions about Emma's birthday. Today I was thinking a lot about the second half of my pregnancy with Emma.

We were lucky. We knew ahead of time that we were not going to be traveling a typical road with this baby. I'm not going to say we were "prepared," because NOTHING could have prepared us for the incredible journey we've been on for the past three years. But I'm really glad to be able to say that we knew SOMETHING was going to be different.

I have several friends right now who are pregnant with not-their-first child and several people have commented to me that they've noticed a change in standard prenatal care between this pregnancy and their others. I've been told that recently most insurance companies and therefore most OB practices have started including more genetic testing in their standard of care. Apparently, pregnant women now have the ability to have a much earlier ultrasound and meet with a genetic counselor early in their pregnancy to discuss that panic-inducing term ... risk.

Now, let me be very clear about this: If the Lord chooses to bless us with a third child, you better believe I'm going to jump at the chance to see that little baby in an ultrasound earlier than at 20 weeks! And, knowing that our minds are already made up and that there would be no "decision to be made" if tests did reveal something abnormal, I think it's great that we have the opportunity to know ahead of time if there are preparations to be made beyond just painting the baby's room.

But something about this trend in prenatal care makes me sad.

In 2008, a study was released from Denmark about the impact of a national pre-natal screening strategy for Down's Syndrome. Further studies have also been released, and what they've found is that after offering screening for Down's Syndrome to every pregnant woman in Denmark, the number of babies born with this syndrome has been cut in half every year. One article predicted that soon very few babies will be born with Down's Syndrome in Denmark.

Pause for a moment. If, in 2008, the number of babies born with Down's Syndrome decreased by 50%, what happened to the other 50%?

They weren't born.

(Don't panic. I don't write political blog posts, remember? Just my perspective and my emotions from my journey)

Now, I get it. Emma, from an insurance company's prespective, is expensive. Her life is, and will continue to be, WAY more expensive than covering pre-natal screening for genetic differences.

And the fact is that insurance companies can be quite certain that the more they can help parents know ahead of time (and early enough to "do something about it") that something is different with their child, the fewer "expensive children" will be born.

And that just makes me very very sad.

Wednesday, September 28, 2011

Humilty and alone-ness

I got caught lying today.

It was 10:15 this morning and Emma and I and some other customers were standing outside a store that should have opened at 10:00. An employee without a key was there making some phone calls and we had hope the store would be opening soon, so we stood around waiting for a bit.

Emma was holding my hand and walking around and making friends, as she tends to do.

A man in his 50s and a woman in her 70s were (separately) doing what I call "the question dance"

"Oh, she's so cute!" (subtext: declaring one's own kind intentions)

"How old is she?"

"Oh, she's a peanut! When did she start walking?"

"Does she talk?"

Given the situation, I was feeling just fine about answering questions, particularly since we weren't going anywhere anytime soon, so I decided to end the awkward "circling around the issue" by just coming out and saying that Emma has Cornelia de Lange Syndrome.

The older woman had been asking more questions than the man, so when she asked, "What's that?" I decided to go with my shortest and most easily accessible answer:

"Oh, it's just like Down Syndrome."

She, like many women her demographic, responded with a not-unkind tsk and sigh and told me that Emma was adorable.

Now, for some reason when I find myself at this point of this all-too-familiar conversation, I find myself needing to ... I don't know ... comfort people. Like, I need to make sure to end the conversation on a happy note or something to make them feel better about the encounter so that I will be a good ambassador to the special needs community ... or something.

So I told her about how Emma really is doing great, much better than the doctors predicted, and about how we weren't sure she'd even survive and, well, now look at her! I usually say something about how she's my "little miracle" or "gift from God" ... you know, some attempt to let them know that it really is OKAY.

The gentleman had been quiet for a bit, and then asked me how her communication skills are. I answered, and then he confessed to having a higher level degree in child development and working for many years with kiddos with autism and autistic tendencies. So he knew what Cornelia de Lange Syndrome is.

I said with a smile, "Oh, so you see the fallacy in my description."

He smiled. Aside from the fact that both are congenital syndromes with developmental delays associated with them, CdLS is not "just like Down Syndrome." That's an over-simplification I use when I don't think the person I'm talking to is going to be able to relate if I go into any more detail than that.

The woman asked what I meant and I told her that CdLS is hard to sum up in one sentence.

I chatted with the man a bit about Emma's specific skills and he agreed that she was doing very well, and Emma ended up playing with the woman's jewelry a bit so all was well there, but I left feeling like I had been guilty of something.

I think I feel like maybe I'm guilty of a weird form of arrogance.

I could just say that I'm used to assuming no one knows what CdLS is because there are medical professionals that I have to explain it to, for crying out loud. And that could kind of get me off the hook for the possibly disrespectful over-simplification I used.

But I kind of feel like I'm supposed to ponder something deeper than that. I think I need to remember that there's a danger to getting used to being the only person in the room with certain, specialized information.

Yes, I have a hard-earned PhD in "Emma-ology." I (and my husband) know more about that child than anyone in really simultaneously empowering and isolating way.

It's empowering to know more than the nurses in the ER and to be able to explain medical information to them.

But it's lonely to not really be able to sum up the answer to the question "How are you?" to a socially-appropriate length sometimes. It feels isolating to know that sometimes well-meaning people just will NOT understand without a lengthy explanation and sometimes a lengthy explanation is not what they want and sometimes it's not what I want to give.

But that doesn't mean that I'm allowed to have "I know more than you know" type of PRIDE.

It doesn't mean that I'm allowed to talk to people as if my certain, unique, specialized struggle is somehow above their ability to relate to.

God has been convicting me lately about the rare form of pride that comes with struggles and I was reminded about it again this morning.

I imagine that it's like a person who's spouse is dying of cancer having trouble being sympathetic with me if I complain if Charlie has strep throat

Or a person who's house was robbed and has lost everything having trouble being patient with me if I'm pulling my hair out because I've lost my car keys.

We all have struggles.

We all have knowledge that others don't have.

We all have a path that God has given us to walk, and He has given us each a story to tell for His glory.

Do you know what I mean? Do you get so caught up in your own story that you forget to listen to others?

Or are you a better listener than I am but therefore you forget to tell your own story?

Here's what I'm praying today: I'm praying that even while I feel called to tell the story God has given me, I'm praying that He will not only give me the right words to say, but also the right ears to hear other stories.

Because He's WAY too big for just one person's story.

Thursday, September 22, 2011

SPLASH!

I was being a good mom and took my kids to the zoo this morning.

We almost had the place to ourselves, so Charlie was running around Discovery Bay and Emma and I were walking at an Emma-pace behind him.

Charlie leaned over in the shallow anenome-petting pool and wanted to show me a star fish.

He fell in. Like, totally soaked from head to toe.

A compassionate zoo volunteer got him a towel (which they had on-hand, so I'm assuming he is not the first child to do this). She helped get his sweatshirt to a place where they could dry it and I got Charlie to a place where he could wash his hands.

She looked at me after a bit and said, "You must have a couple of older kids, too, in school now or something?"

"No. Why?" I asked.

"Well, because by now most moms are freaking out a bit more ..."

I just smiled and thanked her, not really sure how to tell her that once you've seen your baby's MicKey button on the floor, a plunge in a zoo exhibit is nothin' :)

Wednesday, September 21, 2011

That question wasn't covered in the Mommy handbook

Emma has "discovered" her feeding-tube button.

You know how most kids "discover" their toes? She will occasionally stop what she's doing, lift up her shirt to make sure it's still there, and then smooth her shirt back down ... so no one can steal it, maybe? I'm not sure.

It's pretty cute.

She's also quite concerned at the rest of her families' LACK of a button. She will come up to us and lift up our shirts, looking for our feeding tubes.

Charlie finds this particularly hilarious and actually kind of encourages Emma to look for his button. He finds that this is most easy to do when he's wearing a bright-colored shirt, like his Transformers shirt.

So yesterday, they were playing in the living room and I hear him laugh because she's searching for his button.

"Ha ha! Emma, I don't have a button, YOU have a button! I don't have CdLS! YOU have CdLS, you silly girl!"

(now, I know that may sound weird, but please keep in mind that he doesn't understand that CdLS might not be an enviable condition. He has brown eyes, she has green eyes. He eats, she has a tube. This is not something that he holds over her. He doesn't understand that some in the world are going to someday assign more value to him as a human being than her simply because he can do things she can't. Please see this through a child's eye. He doesn't see something to be pitied or fixed or explained away. This is his sister's condition, and it's something that not only makes her different from him, it makes her special. Not "special," but said in a happy voice special. To him, this is as innocently funny as a little boy looking for a little girl's ... um ... well, you get the idea ...)

And then he said to me, "Mom, I think she looks for my button more when I'm wearing my Transformers shirt because maybe she thinks the TRANSFORMERS have CdLS!"

I'm fairly certain that laughter was really my only option at that point, right? :)

Oh, the conversations you never thought you'd have ...

Friday, September 16, 2011

An interview worth watching

It's okay with me if you want to disagree with this pastor on some issues :)

But I'm sharing this link hoping that the truths spoken in this discussion will bless someone


http://www.desiringgod.org/resource-library/interviews/john-piper-interviews-john-knight-part-1

Have a wonderful weekend!

Monday, September 12, 2011

Charlie's turn

This boy. He is so sweet. And we had a pretty good summer
Feeding his little cousin

Building forts in the living room



Building creations





Writing in the sand




And today, he went back to school.

He was so cute, he was actually a little nervous, but tried his best not to admit it.







We really love the preschool where he goes. He learns so much and has such a great time with his friends







And this afternoon, he was beat :)

Thursday, September 8, 2011

First day

Yesterday was Emma's first day of school for the year. We really love her preschool program - she did so well with it last year.



At first she wasn't sure she wanted to stay and play. She's thinking she'll just hang with "Mama" in this picture (which is what she's signing)


But then she remembered that she'd done this last year and that this really is a good place to be.



Checkin out the "school bus"







(check out my super-fashionable boot! hopefully when i go in next week the doc will tell me that things are starting to look better...)





Emma eventually got to walking around like she owned the place, like the amazing little diva she is :)










She's off! She's ready! She's going to take the world by storm :)