Thursday, December 23, 2010

You aren't going to believe me

Josh doesn't believe me.



I'm not entirely sure that I believe me.



Emma's SLP (Speech and Language Pathologist) has been trying to get Emma to follow directions and identify objects. I've been ... supportive, but rolling my eyes at her in my mind.



The child does not walk or talk, she's NOT going to choose the right card when asked to identify the dog or the car on those pictures ...



right?



So today she put Emma in a chair with a tray and said, "Let's just try it."



The first two pictures were a car and a baby.



"Emma, which one is the car?"



Emma grabbed the card with the car on it.



Um, ok, sure, lucky guess. The car has more bright colors than the baby doll.



A train and a duck.



"Emma, where is the ducky?"



Right ... see, both times the correct card was on her left, so that MUST be what's going on, because MY child does NOT know how to do this! Believe me, I've tried!



Realistic pictures this time of toes and a hand.



"Emma, which picture is the toes? Grab the toes."



Well, ok, it was on her right this time ... ummm ....



We set aside the cards she grabbed for correctly and tried all sorts of combinations, switching the right and the left, asking for boring colors and not interesting pictures.



With over 80% accuracy (the SLP was counting because that's Emma's documented goal), Emma correctly reached for the card picturing a car, a train, toes, eyes, an ear (and for bonus points reached for her own ear also on this one!!!!), a duck, a baby, a hand, and a truck!



I cried.



The SLP was absolutely thrilled.



Now, I know that sometimes Emma's skills come and go. I know that she did it today but that she might not do it tomorrow.


But for today, it was a GREAT early Christmas present.

Sunday, December 12, 2010

Treeing....

It's a tradition I married into. "We go frolick and find a tree" I was told. Silly me! I thought we went to the nearest parking lot with trees and picked one........oh no! You must take a whole day to do what should take about 2 hours!

First, you must bundle!

And then you get in the car and unbundle because bundling makes you warm.....

And then, upon arriving at the tree farm (yes, farm, not parking lot....) you must rebundle and look cute!
And then we're off to find the "perfect" tree....or to be clear 4 perfect trees. Now that Becky and her 2 brothers have all have houses of their own, we need 4 trees.

Nana picks the first tree she sees, and the rest of us ignore her because we're just starting to look.


And then we go through and check each tree and come to an agreement on the perfect tree. This part is actually a lot of fun. It's a debate every year between tall/short, skinny/round, big/small needles, etc....

About 2 seconds or so into the process, Charlie is pooped! So much work to walk when you're all bundled and there's snow.......so there's Uncle Dave for that!



Maybe we need to go up there where all those cars are going!



So we all load into the truck, and it's off to......yet another part of the farm.



And after the quick nap on Uncle Dave, it's off to the frolicking once again!

And when we land on a tree, we ask some poor unsuspecting passer-by to take the family pic!



And again......



And again....poor unsuspecting passer-by


***Only Minnesotan's will understand, but yes, I have the lovely pink really warm hat. It's tradition! We usually use it to mark a "maybe" tree until we're decided. And yes, Uncle Dave is wearing an equally interesting, yet warm, hat. And yes, Uncle Mark (far left) is wearing hat, jacket, snow pants and.....shoes! uh huh....we're nothing if not fashionable!


And then comes the cutting! Charlie is VERY! helpful.





And Emma thinks we're HILARIOUS!!











Good work Daddy! Keep it up!



Are you done yet?



So, who's bright idea was it to ride in the back of the truck up to this area? Who thought riding back down with four trees in the back would be fun?



Uncle Dave and Charlie are under there somewhere....





I think.....



And Mommy and Daddy squished in the back.



Lucky for you I'm out of pictures and patience!

Next comes the shaking and bagging of the trees, the trip back to the city, and then four stops to get trees put up, and then decorating of the family tree at Nana's. It's a long, tiring, REALLY FUN day!

Saturday, December 11, 2010

Friday night at a local dive



Click the music video and listen while reading the post - it really lets you experience the atmosphere of our evening better, I promise.





Charlie wanted to try bowling, and there's this bowling alley (DIVE) 2 minutes from our house, so we thought we'd let him give it a shot.


We had a REALLY great time! Just the 4 of us.


Charlie and Josh bumper-bowled (Charlie ALMOST beat Josh because Josh couldn't find a ball that fit his fingers!)

Emma crawled around on the floor and laughed at me while I cheered for Charlie.

And then we had dinner at the bar. I ordered a tall tap beer and danced a giggling Emma on my lap to "Sweet Child o Mine" by Guns n Roses.

We had apps and fries and Charlie and Daddy watched football on the big screen TV while Emma charmed the waitress.

It was really great!

We are SO not barflies, but since most places in the Twin Cities don't let people smoke if there's food being served, it's not like it's physically unhealthy for the kids. The worst that could happen is Charlie could ask further follow-up questions about the song "She thinks my tractor's sexy" that was blaring from the juke box.


We laughed, we ate, Josh and I had a beer and the kids laughed at us singing along with bad '80s music. It was a REALLY good time :)

Feeding Therapy ...


is going well :)


Wednesday, December 8, 2010

Charlie's sick :(

C: "Mommy, you know what I really like to do when I'm sick?"

Me: "What, buddy?" (bracing myself for a request for another movie or possibly Wii)

C: "I like to snuggle."

LOVE that kid :)

Monday, November 29, 2010

Nothing

Nothing profound to say today.

I declared today a p-jammie day. We are having a VERY rare day of no appointments or playdates or anything, and since Charlie and I both have some sniffles, I decided not to seek out any company or run any errands and just declare it a do NOTHING day.

As sweet as it has been, it's reminded me that "normal" stay at home mom days with nothing to do have their own version of difficult. It took Charlie a little while to stop asking where we were going today.

But finally we hit our groove. He played legos. I folded laundry. Emma helped.

It's been a nice day so far.

I really just wanted to share a story and a video:

STORY:
Charlie loves Toy Story. Well, really, he only loves Toy Story 2 because it's the only one he's seen. Toy Story 1 has that creepy mean neighbor who scares me and Toy Story 3 has a bear and a clown that both scare me ... I'm a wimp. So Charlie loves Toy Story 2.

He loves that Buzz Lightyear goes to rescue his friend Woody. My boy is very tender-hearted, but also has a lion-hearted spirit. Remember when he was fighting bad guys to take them away from Emma? My mom had car trouble last weekend and called us and I told Josh that she needed to be picked up. My little boy lit up like a Christmas tree, on fire about the opportunity to go "rescue his Nana."

I really like him :)

But on the Toy Story theme, he cracked me up today.

He looked at me very seriously over lunch and said "Mommy? You know how in Toy Story 2 Buzz Lightyear says 'To infinity and beyond'? Well, does that mean that in Toy Story 3 he will say 'Three infinity and beyond'?"

Hee hee hee

~~~~~~~~~~~~~~~~~~~~~~~~~~~
And now for the Princess:

This video is nothing but a happy girl in her usual evening good mood sporting her new "I'm in feeding therapy now" haircut.

She's been feeling so much better!

video

It's so nice to have her back!

Saturday, November 27, 2010

Thankful

I was at a baby shower earlier today and someone asked me who was watching the kids.

It made me realize how spoiled I am. I TOTALLY take for granted that we are blessed enough that my husband has a job where he can be home on weekends and that I don't have to work.

Not only that, but I also take for granted that, while I'm gone, Josh is more than happy to spend time with the kids. He's not baby-sitting, he's being a daddy.

Even more, they didn't just hunker down in their PJ's and watch movies. Josh took the two kids to the zoo by himself.

And THEN, when he came home, he acknowledged that it's a heck of a lot of work to take little kids out when it's cold outside. In fact, he tells me regularly that he doesn't know how I do it, showing his appreciation that the job I have is not an easy one.

I'm sorry for the times I take him for granted.
I'm very very thankful for my husband.

Wednesday, November 24, 2010

My poor neglected blog

ah, well. life has been crazy busy.

Emma has been doing really great at feeding therapy. She had really developed an oral aversion after that facial paralysis in May, so we've been working on that. She now accepting a spoon with food on it with an open mouth and is pretty happy and excited about it! She's still not swallowing much, but this is a huge step and we're really proud of her.

She's also on the road to recovery regarding all her other GI stuff, and she's also finally well enough to wear her hearing aid again (the left one, anyway. She still screams about the right one)

Charlie's a rock star as always.

I really am incredibly grateful for my husband and my children. I am determined to have a joy-filled Thanksgiving, focusing on all the Lord has done for us this year.

God bless you this Thanksgiving!

Monday, November 15, 2010

Second post on purpose :)

I'm sick of being a downer. I'm sick of pity and I'm sick of stress. Not in an angry way - more in a 'Mary Tyler Moore throwing her hat in the air' or possibly a 'trading my sorrows' kind of way. I'm ready to choose some joy!

So while I wanted to give you an update on what's been going on, I didn't want my blog to be negative all day today (or tomorrow or whenever I get to it to post again)

So here's my other post today :)

I'm thinking about the Christmas story a lot right now ... mostly because I'm helping out with the children's musical again and so Charlie is singing a lot of "No fear, good news, great joy for all" lyrics around here lately :)

I'm amazed by Mary. An angel comes to her and says "Ok, so. You know YOUR plans? They are going out the window. You're going to get pregnant, even though you are not married, which may or may not ruin your life (you know, socially). Your son is going to be the Messiah."

(and by the way, He's going to be arrested, tried, and crucified before your very eyes. You are going to watch your firstborn son die a horrible death for all mankind.)

Her response?

"My soul glorifies the Lord and my spirit rejoices in God my Savior ... the Mighty One has done great things for me."

She gives birth in a STABLE and is visited by smelly shepherds.

She understands STRESS

My stress is nothing compared to hers, but I'm trying to learn from her response to stress.

She sees the blessing past the inconvenience

Raise your hand if you've been blessed by Emma.

:)

just kidding

But you know what I mean. My daughter is a blessing that I feel COMPELLED to share with the world. But part of the blessing is the stress. She's not going to be able to display triumph without struggle. There is no overcoming adversity without the adversity.

God reminded me of this on Sunday.

Our church supports a mission in the cities that is a residential drug and alcohol treatment program. It's not like a '28 days' type of thing - my understanding is that most folks are there for months and if they weren't there they'd be in prison. But it's a faith-based program with an over 75% success rate with their graduates.

Once a year our church has their choir come and lead us in worship. Men and women give testimony to what the Lord has saved them from.

They sang "Mighty to Save" - POWERFUL

So after the service I ran into a couple of women from the program outside the women's restroom and I had Emma on my hip. One of the women was wearing a pretty shawl, which Emma OF COURSE wanted a closer look at. As Emma leaned over, the woman asked me if she could hold her and when I said yes, her eyes filled with tears.

(if there's ever any social situation where you know you'd like to approach someone and talk to them but you're not sure how, leave it to my daughter to just stretch right over those walls with those tiny little arms)

She just stood there with tears in her eyes rubbing Emma's back while Emma played with her scarf. The woman started whispering over and over in Emma's ear

Jesus loves you. He loves you so much.

The other woman standing there and I swapped miracle stories and when Emma was ready to go, I think all three of us women had our hearts absolutely FULL.

I'm not sure the scenario would have had the same effect without a special Emma in the middle of it.

And you don't get a special Emma without all that comes with that.

So thank you for your prayers and support. God blessed my socks off this weekend.

Now go find YOUR blessing, too! :)

Emma update

For those of you who don't know, we've had a crazy couple of days.

Last Thursday, Emma had surgery to replace her ear tubes and have a sedated hearing test.

Her left ear was a bit of a challenge to get the old tube out and the new tube in.

Plus, the left ear showed WORSE hearing than 9 months ago. Neither the audiologist or I believe the results and she wants to re-do the test when the swelling has gone down.

And actually, I'm a little nervous. We've been thinking that she's acting like the right hearing aid is turned up too loud. The results of this test show that the right hearing aid is programmed correctly and the left aid is too quiet. If that's really true and we get the same results in a couple of weeks, then her theory is that Emma has a sensory input issue with sound. It's possible that she's tolerating the left hearing aid BECAUSE it's too quiet.

Ok, we'll cross that bridge when we come to it ...

But back to last week.

On Friday (Emma's second birthday), she woke up crying in the morning, which is strange for her. I went in to find little patches of blood all over her bed.

I picked her up and put her on the changing table to clean her up. While I do her diaper and stuff in the morning, I usually open up her Gtube also, just to let any overnight burps out. That morning, there was blood coming out of the tube.

There was also blood coming out of her ear and blood coming out of her mouth.

After trying prilosec and pedialyte to get the tummy bleeding to stop and drops to get the ear bleeding to stop, both unsuccessful, we went to the ER.

9 hours later, after seeing ENT and GI, it was decided that the ear bleeding is to be expected with the difficult tube placement. GI said that it was likely that she had some big retching coming out of anesthesia and it either cause some bruising or some tearing in her tummy. After 24 hours of pedialyte "gut rest," she was sent home.

She's not feeling super great, although now that we're getting those calories in, she's having bursts of Happy Emma again :) That makes me happy.

Thursday, November 11, 2010

Surgery's done

Well, the good news is that she now has new tubes in both ears. Those little ear canals are now big enough for "big girl" tubes, so hopefully we'll have fewer clogging issues.

The left ear tube had been grown over by some membrane of some sort, so that ear drum had to be messed with more than the other. The ENT said there was some fluid back there, so hopefully she's more comfortable now

But the surgery left us with a slightly inconclusive hearing test.

The bad news is that the right ear (which is the hearing aid we've suspected of being too loud) tested the same as before.

The left ear tested worse, but the audiologist felt that the way it tested worse was consistent with swelling from the surgery, so she wants to test again in 6 weeks.

yipee

But we're thankful that she made it through the whole thing safe and healthy and she's home and happy about it.

I'm exhausted. But we're doing ok :)

Wednesday, November 10, 2010

crazy week ... month ... year :)

Emma turns two this week!

We thought we'd celebrate by having surgery ... we're lots of fun like that.

This one isn't a big deal, just ear tubes cleaned and/or replaced, and then a sedated hearing test (ABR).

Our hope is that someday those little ears will get bigger and she'll outgrow her hearing loss. This is possible. It happens with CdLS kiddos all the time. I'm not sure if we are there yet or not with Emma, but it's nice to think that it's possible that we won't need those stinkin hearing aides anymore!!

So please, if you feel so led, pray for Emma's hearing?

Thanks :)

Oh, and while I'm posting ... yes, she got those ankle supports (AFO's). She hates them. She refuses to stand in them. So no, she's not walking in them yet. :)

We'll keep you posted as we get results from surgery!

Thursday, November 4, 2010

So now we have ...

"Why does her hair smell like BBQ sauce and pickle juice?"

And

"What are those things on her legs?"

To add to the usual

"Why does she drool so much?"
"What's the tube for?"
"She's HOW old?"

and

"Are those hearing aids?"

Oh, well

She'll show 'em once she's walking, talking, and eating, right? :)

I'll post pictures of Emma in her new AFO's and boots as soon as I can get her to stop crying about them. Actually, no, I'm lying, she did ok with them for about an hour tonight, but like anything, I'm sure it'll be awhile before Emma is back to "normal" with them on. Everything's an adjustment.

Other than that, we're fine. How are you?

:)

God bless

Monday, November 1, 2010

Fall

In between lots of medical stress and therapy appointments that seem to be increasing frequency at an alarming rate, we really have had a very nice autumn.

We found a cute little apple orchard this year with hay bales and a hedge maze and everything. Not too big or commercial, just a perfect place for a Charlie to play and an Emma to have a stroller nap :)














And we blinked and it was halloween!
Our church puts on a very fun Pumpkin Patch carnival every year and it was a blast, as usual. I LOVE my church family!!









Our Buzz Lightyear and our beautiful butterfly played and hopped and bounced and giggled until they could hardly hold their heads up. Today is a bit of a Halloween Hangover, but worth every minute of exhaustion!
Hope all of you stayed safe this halloween! We have a CRAZY week this week and by the time you hear from me again, Emma will have started feeding therapy and will also, hopefully, have some leg braces to help her learn to walk. LOTS of new and exciting stuff coming up ... I guess we'll sleep sometime in January :)

Tuesday, October 26, 2010

My Journey

Sometimes I shake my head when I think about the fact that I am sort of letting you all read my diary. :)


And then I think about how wonderful it was to have other CdLS bloggers sharing their thoughts and feelings back in those first few weeks of fear and unknown when Emma was born. I pray that somehow maybe my blog will fall into the right hands someday and encourage someone else.

I have several reasons (other than the obvious cathartic ones) why I blog; I hope to encourage others, I hope to receive encouragement, I hope to educate and spread awareness, I hope to introduce someone to our amazing God.

So with that hope, I'm attaching a link to this post to the side of my blog.

This post is full of links to posts from the past that mark significant steps in my own journey. Not Emma's journey, but mine. What has God taught me? What do I really want to share? What emotions did I have that I wish someone else had told me were normal at the time? :)

I blogged before we had Emma, so you'll read posts from my pregnancy and NICU, as well as Dx-day (diagnosis day) and my journey since then.

But fair warning: if you do actually make yourself some hot cocoa and sit awhile to read about our journey, please realize that these are uncensored posts. I haven't changed them since I wrote them, so they are there with all the naivete and ignorance and fear and raw emotion you are used to if you've been around here long enough. Which means I hadn't met Emma yet in some of them, and I hadn't fallen in love with other CdLS kids yet, and I hadn't embraced special needs parenting yet ... please extend grace where appropriate! My goal is to share our journey so that others may be encouraged

I'll probably add more links to this post as time goes by. I'm just hoping to have a place to link to the really amazing stuff the Lord has taught me through my life with Emma ... you know, so you don't have to wade through all the cute videos of Charlie that no one cares about but the grandmothers!! :)

So here goes:

These are from my pregnancy:
20 weeks
30 weeks
A revelation from an MRI
Prayers for healing
Trusting God - Be Still

Birth, NICU, and diagnosis:
Birth
NICU discharge - a rough day
diagnosis day
Dx honesty

Reflections on Emma's first birthday
part 1
part2
part3
Emma's first Birthday

Lessons God has taught me through Emma
Dear Stranger
Detours
Giggles and Bad Guys - the blessing of Charlie
It happened in Target
Non-political pro-life
Charlie: "I wish Emma didn't have CdLS"

From Emma's 2012 Nissen re-do and hospitalization
Do Not
Shouldn't Haftas
I {heart} Scripture

Fighting Dragons and Chasing Bunnies
How?
Understanding

Those are the ones that I think about when I think what God has taught me. If you've been around here awhile, do you have others that you think I should share? Let me know!

God bless you!

Wednesday, October 20, 2010

things i yell into my pillow at night

(disclaimer: everything is fine. nothing bad happened. charlie has an ear infection and i'm just trying to balance therapy schedules. but i'm having a bad mental health day and so ... i dunno ... for some reason i'm blogging about it)

if i say that we're going to focus on feeding therapy instead of speech therapy right now, does that mean i'm choosing between emma eating and emma talking?

i'm really sick and tired of having to explain what i'm sick and tired of

and listen, lady, i bet i know my child better than you do and i don't need your permission about what i can feed her when, so stop looking at me like i'm not doing everything i can for my daughter!

when i say that there's only 24 hours in a day, please believe me when i tell you that i'm not saying it to be lazy, i'm saying it because emma deserves some time to be just a child, too!

and did i mention i have another child?

and did i mention he's 3 and still needs me but that i'm realizing that he's leaving me in his wake as he speeds toward boyhood?

but you better believe i won't be able to sleep at night now, wondering if this decision will affect whether or not she'll ever be able to communicate with others. oh the things i took for granted with charlie ... he'll walk, he'll talk, no appointments necessary.

i'm not sleeping ... which is fine, because my son has an ear infection that i didn't notice until now and so he's waking up at night screaming in pain while we wait for the antibiotics to take affect

where is the line between powerful mother's instinct and irrational mother's worry? i know my husband does his best, but am i keeping him informed enough after every appointment so that his opinion about every decision can be worth as much as my opinion? he is supposed to be that voice of reason

and emma is night-waking again ... am i in denial that she's doing that behaviorally? or is something really wrong?

should i be waking up and going down to play with her while she's awake? she doesn't need me, she doesn't cry ... but should i teaching her a new sign? singing her a song to help her learn more speech sounds? stimulating her brain in some way? when i stop to think about the hours my developmentally delayed daughter has spent awake alone in a dark room i'm ready to call a social worker and turn myself in for child neglect.

i shouldn't be worrying ... stop worrying!

i'll put that on my to-do list ... for tomorrow

Saturday, October 16, 2010

My husband rocks!

Have I mentioned before how much I love Josh?

Although that last post was not written by him, it was unexpectedly posted by my darling husband. Because he loves me :)

He thinks I'm pretty cool.

Men, take note!

Public declaration that you think your wife is pretty neat -

it does amazing things in a woman's heart

:)

Wednesday, October 13, 2010

To my wife

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make not...es in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child".

The angel is curious. "Why this one God? She's so happy"

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you"

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"

"And what about her Patron saint?" asks the angel, his pen poised in mid air.

God smiles "A mirror will suffice"

The Special Mother
by Erma Bombeck

Thursday, October 7, 2010

Sweet Snuggles

Poor little girl has an ear infection and is just generally a little under-the-weather.

Nothing too concerning - just that beautiful place that mamas secretly love somewhere between really really sick and feeling too energetic to stop playing for some Mama Loves.

That wonderful Land of Lots of Snuggles
She still loves the praise she gets when she waves, so in this picture she's waving on my shoulder :)




signing Mama


Not too sick for a little giggle :)
Love that girl

Wednesday, October 6, 2010

What Emma CAN do

There's this little ticker on the side of my blog that's been taunting me for a couple weeks.

That little fairy that represents Emma is getting dangerously close to that big number 2.

Two - it feels ... difficult for some reason.

Like it's full of "supposed to's"

She's "supposed to" be walking and talking by now, but she is doing neither.

In fact, I've been practicing saying it out loud. You know, to strangers in the store who ask how old she is ... I've been practicing answering that she's 2 because then I can console myself with the fact that I'm lying if their response is outrageous.

But there's some embracing in that answer, also. No more pretending that she's "just a little behind." People don't ask anymore if she was premature and then try to make me feel better that "she'll catch up." That part feels good.

So here's my praise for today.

I want to make a list and praise God for everything Emma CAN do.

  • Her lungs can breathe without help and her heart beats without so much as a murmur (not to be taken for granted given her congenital hiatal hernia.)
  • She smiles at us and knows and loves her family
  • She rolls over (since 4 months)
  • She sits (8 months)
  • Her little legs have supported her weight if she's standing next to something since 10 months
  • She got "army-crawl" mobile at 10 months and pulled to stand at that time, also
  • Her palate repair is behind us
  • She cruises (12 months)
  • Her traditional crawl (14 months) is pretty much the cutest thing EVER, especially when she comes around the corner looking for me
  • She's just recently exploded with communicating and curiosity. She has about 7 or 8 signs (help, mama, all done, pick me up, hungry, more ...) but they come and go depending on what's really motivating her. PLUS! She can wave back when you wave to her and she claps along with you when you clap. This makes my day :)

Thank you, Jesus, for my precious Emma! We are so grateful for everything she does and everything she is and every good and perfect gift You have given us through her life on this earth.

Friday, October 1, 2010

Pro-life: A non-political post

I went to coffee with a new friend this week. Her older daughter is in Charlie's preschool class; her sweet little 10-month old baby girl has Down Syndrome.

(as a side note, it's amazing the connection I find with other moms of kids with special needs.)

As we were finishing up our time together, both Emma and her new little friend smiling sweetly on our laps, the college-aged girl who had made our drinks came over and said,

"I'm sorry, I know this is going to come out wrong, but I just had to come over and say something. I know that so many of these kids get aborted and I just wanted to tell you that you have beautiful babies and you guys are awesome."

She had tears in her eyes, and went on to explain that her sister works for a crisis pregnancy center downtown and that she's pretty passionate about the issue of abortion.

Despite the fact that it was stated a bit awkwardly, I was moved by her sentiment.

It made me think about an article I read recently about reasons abortion statistics are so high for babies with special needs.

Before some of you stop reading, I want to be VERY clear: I DON'T CARE HOW YOU VOTE ON THIS ISSUE. THIS POST HAS NOTHING TO DO WITH POLITICS.

BUT

If you consider yourself to be anti-abortion, consider this ...

In a conversation about terminating a pregnancy when something has "gone wrong," before long someone is going to say the phrase "quality of life."

Have you considered the fact that YOU may have the opportunity to impact a disabled individual's quality of life?

Not by your political vote,

but by your love for them after they are born.

Let me see if I can explain myself with an imagined scenario ...

Imagine a pregnant woman in turmoil because she has just learned something is different about her unborn child. Is there a decision to be made?

She goes to a coffee shop and sits down to clear her head.

At a table across the restaurant, she sees a mom playing with a child with special needs. The pregnant woman watches the mom bounce the not-yet-walking 2 year old on her knee. The mom is struggling a bit to finish her coffee as her child is so squirmy, but she seems to be handling things ok and the pregnant woman thinks, "maybe I could do that."

But then she sees the reactions of the people around the special child. The stares, the "tsk"s of pity, the eyebrows raised as they decide to get their coffee to-go ...

And she considers the "quality of life" of the child she is considering bringing into the world.

If you could read her thoughts and walk into the restaurant as another customer, what do you think you could do that would convince her to not terminate her pregnancy?

Hand her a pamphlet about how her unborn child already has fingernails and can smile in her belly?

Show her a protest sign saying all children have a right to life?

or maybe

Could you walk up to the 2-year-old's mother and tell her she has a beautiful child?

Am I explaining my thoughts well? I don't mean to be preaching about being pro-life ... my point is that if you consider yourself to be opposed to abortion, what could you do to show love for all life?

Could you hold the 2-year-old who drools a lot in the church nursery, making it clear they are welcome?

Could you support their family when their child needs surgery, bringing them a meal?

Could you get to know them well enough that when she comes to your church on Sunday morning, you run over to greet their child and swing them around until they giggle?

Because I promise you, the One who said, "suffer the little children to come unto me" would smile quite a bit at that kind of 'vote' for life.

(and those of you from a certain wonderful church we love ... you may recognize yourself in those last few lines of this post ... you all are amazing ... we are forever thankful)

Tuesday, September 28, 2010

Sorry I've been gone for so long. :) There's this blog post I have written several times and deleted several times ... it's either called Emma and the Amazing Technicolor Chromosome or Did God give Emma CdLS ... written after re-reading the story of Jacob's son Joseph in Genesis ... but I'm pretty sure there's some bad theology in there, so I'll post that another time :)

It's ok, you can laugh at me ... I do :)

The actual excitement for today is that I FINALLY got some of Emma's new skills on video. In the past couple of weeks she has just EXPLODED with curiosity, both socially and in her play. The magnets on the fridge are no longer safe, I'm deciding what is a 'no' and what to just sit back and wonder what exactly she's going to do with, I leave her playing with her toys in the living room and go to put laundry away and come back out and she's gone ... Charlie and I found her later in the bathroom :)


The skill in this video, though, is the one I'm most excited about. It's totally social and appropriate and consistent (unless, of course, she's distracted by something shiny ... hence my excitement that she was finally willing to do it in front of the camera)

video

She's clapping at the beginning because we have clapped so much for her waving that she now thinks that when someone waves you're supposed to clap for them!

hmmmm ... i have more cuteness to post, but i think we're experiencing technical difficulties ... i'll be back later

Monday, September 20, 2010

Wrestle with the angel

It's been awhile since I've done a Bible post.

I'll admit it, I've been kind of coasting again.

Well, no, that's not entirely true. Sometimes, in some seasons, I just can't make it through another history chapter in Genesis and just need to stand in the shower and repeat one short verse of comfort over and over again. "Cast all your cares upon the Lord ... " or maybe "Do not be anxious about anything but in everything through prayer and petition with thanksgiving present your requests to God and the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus"

Those are good.

But then I get lazy and forget that maybe God has MORE to say to me.

I'm trying (again) to be a daily Bible reader. I've done it before, but ... well, you know, life happens. So I'm starting again this fall with Genesis (again). Sometimes, for me, anyway, the fact that I've read most of the Bible before at one time or another is actually kind of a stumbling block for me.

Like, yes, yes, I KNOW that Joseph's brothers sell him into slavery. The story hasn't changed, so why should I read it again?

BECAUSE I HAVE CHANGED, THAT'S WHY!

Tonight I read the story of Jacob wrestling with God again. I've never really had any big revelations about that story before, other than the fact that it was kind of a turning point for Isreal.

But I think tonight God wanted to remind me about something. He is willing to wrestle with us. It's not an "either you've arrived or you haven't" type of thing, this walk with our Lord. Twice in Genesis, the promise of a great nation was questioned, once by Abraham, and once by Jacob.

I don't get it, God. You SAID you'd bless me, but life doesn't look like it's headed toward blessing right now, so what's up with that???

And twice, God doesn't pooh-pooh the question. With Abraham, he reminds him of the numbers of stars in the sky and grains of sand at the shore.

With Jacob, he wrestles.

God could have knocked Jacob out in one punch for being so arrogant as to WRESTLE with Him. I mean, really? "I'm not letting go until you bless me!"???? Where's the reverence there?

But he gets his blessing.

For me, I think there are times I'm afraid to ask the hard questions of God. Partly because I know the Christian-ese answers, but also partly because it doesn't feel respectful to question.

But tonight through that passage, God reminded me that I DO need to "press on to take hold of that for which Christ took hold of me," which means I HAVEN'T "arrived", and I DO need to wrestle.

And if I am willing to wrestle with God, I WILL be blessed.

Wednesday, September 15, 2010

Charlie

(second post today! Scroll down for update on Emma's ears)
When did this little man get so BIG?!?!?!?!
I've sort of been in denial about the upcoming school year. I've been a stay-at-home mom since Charlie was born. Sure, we've sent him to Sunday School and VBS and stuff, but this whole ... I dunno ... dropping him off and leaving the building thing?
I cried. :)
Backing up, though.
The night before his first day of preschool, we were coloring together. Then I went to do something with Emma and left him to finish his coloring at the kitchen table.
He's so focused when he's coloring these days. He's really turned a corner about this; it's pretty cute.
So after about 10 minutes, he brought me his picture to show me:

I HAD NO IDEA HE COULD DO THAT!!!!!!
I would be super proud if I had worked with him on writing letters, but really, I've been busy!
An odd combination of Mommy guilt and pride swept over me. Yes, I know, he has not written his name PERFECTLY, but for a child who has never been instructed in handwritting, I think he did a pretty good job!
I'm fighting the urge to feel REALLY guilty, though, because I feel like ... well, if he's doing THAT without any guidance, I bet he could be reading and writing by now if I had the time to really NURTURE his gifts.
I'm proud, don't get me wrong. He's smart.
So I asked him if he could write MY name on my picture. He asked me if I wanted him to write 'Becky' or 'Mommy.' I asked him if he knew how to spell 'mom.' He thought about it and actually came up with M-O-M with very little prompting. I also knew that he could spell Emma because her name is up in her room, so I asked him if he could write 'Emma' on my paper, too, since she had "helped" me color mine :)

Apparently letters he's unsure of are circles :)
So I wrote 'MOM' and asked him to write it underneath were I had. I think he did a pretty good job!!!
We didn't finish 'Emma' (there in the middle) because Daddy was home by then so I excused myself to go and cry in the bathroom for awhile.
I'm a little emotional about him going to preschool :)


I tried to get a nice, cute picture of him in his first day of school outfit, but it's hard when a three-year-old boy is SO excited!

Putting on his backpack:





Finding his hook:



Putting his sticker next to his name for the day:




Checking out the fish:

And then he found the train table and it took some convincing before he would even hug me 'goodbye'! He was SO ready. "See ya, Mommy!"
I held it together until Emma and I were in the car ... driving down the road, of course ... and then I started really crying.
(yeah, I know, probably not safe ...)
So Emma and I went shopping and stopped at a coffee shop and before I knew it, the time had passed and we went back to get the dude.
When we went into the classroom, he didn't greet ME; he yelled, "SWEETIE WORM!"
(I'm not sure ... this has been Charlie's nickname for Emma for a few months now ... Nana called her a wiggle worm one time ... I think that might be part of it ... anyway ...)
I went to sit down to give him a hug and sat Emma down next to us. Emma just sat there clap, clap, clapping away :) Charlie almost knocked her over with his hug.
For the rest of the day, it was obvious that they had missed EACH OTHER. Not sure if Charlie missed ME at all ... oh, well. :)


I couldn't get him to stop TALKING long enough to take a good picture of him being picked up from preschool!

And he wanted me to take a picture of the outside play area. I think that was his favorite part :)





So there you have it. Charlie is now a preschooler. I know he'll do great. I know he'll thrive and flourish.


But let me know if you have any ideas about what I'M supposed to do without him!!!!!!

Kidding :)

Emma

(I'm shooting for today being a 2 post day because big stuff is going on with both our kids, so each is going to get their own post)

Hearing test is not going to happen on Friday.

We had an appointment with Emma's ENT doc today to have him make sure Emma's tubes were open and clear before testing her hearing. I'm glad we did, because Emma's left ear doesn't have a functioning tube anymore.

Which means we're off to the OR again soon!

He said he could see that sort of a membrane has grown over the tube. It's still in place, but not working anymore.

So he wants to replace the tube and then we'll just do the ABR while she's still under general anesthesia. I'm kind of glad for that, because this way we'll know that she has two working, open tubes and I will feel more confident in the results of her hearing test.

BUT

In the meantime, Emma has a clogged tube, and I think it's causing some discomfort. And it probably won't be until next week at the earliest that we can schedule this because ENT has to coordinate with audiology ...

Plus, this is the ear that we've been having her wear the hearing aid in, it's the RIGHT hearing aid that we suspect is programmed wrong (she shrieks when my cell phone rings, cries when toys make noise...). So no hearing well for Emma until we get this resolved ...

(Remember this spring when her ENT doc told us to just "sort of plan on being frustrated by her ears for the next couple of years"? yeah ...)

She's been REALLY not sleeping well, and not tolerating feeds well, either. We were wondering if she's teething; she's been grumpy and rubbing that side of her face. So we've been giving her Tylenol to help her sleep, but now she's got some ... ummm ... we'll call it GI distress (ewwwwww) ... and I don't know if that's from the Tylenol or if the GI stuff is actually the root cause of everything and it just so happens that she also has a clogged tube?

I HATE knowing something is wrong and not knowing what it is!!!!!

Saturday, September 11, 2010

Bonfire!

Fall seems to have quite suddenly arrived here in MN.

Now that the sun sets before 7:30 again, we had the kids out tonight for a fire.

Why am I out here?


Oh, that looks cool. Ok, I'll hang with Mommy for awhile. :)





A baseball bat? Of course! Why WOULDN'T we play baseball in the dark by firelight?


I love this time of year.
It's particularly good sleeping weather :) Good night, all!