Tuesday, November 19, 2013

Big Stuff

There's a quote I heard one time that goes something like this: "If you want your children to tell you about the big stuff when they are big, take time to listen to the little stuff when they are little.  Because, to them, it's always been big stuff."

I've been trying SO hard to follow this advice lately, but lately ... well ... here's the thing ...

HE'S SUCH A BOY!

I love my son, I'm amazed by my son, I cherish my son ... but he's SO BOY!  And I cannot burp on command or say, "Pah-choo, pah-choo" at the right time when playing with toy guns or understand whether his story he's telling me about a sporting event is funny or not ... "Oh, dear, I hope that player didn't get hurt" has been the wrong response more than once ...

I'm a girl.  And I'm accepting that my role in my son's life is not always going to be easy.

But I can listen.  And I'm trying really really hard to listen and not squash his desire to tell me things.  I ALWAYS want him to tell me things.

So when the breakfast table conversation went down the following road, it was everything I had not to tell him to stop talking and get ready for school.

"Mom?  Did you know that they say that the tongue is one of the strongest muscles in your body?

"Mm Hm"

"And I think I know why they say that.  Cuz, look, I can stand up and lift up the edge of this table with my arms, right?"

Proceeds to demonstrate ... but only about an inch ... nothing spilled ... so I didn't reprimand him ... I was so close, though ...

"But then," Charlie says, "I try to lift the table with my tongue and I can't"

I look over and he is honestly trying to lift the kitchen table with his tongue.  Standing in a squatting position next to the table with his tongue stuck out trying to lift the edge of the table up with his tongue.

Again, it was a momentary thing, not overly silly, not mess-making ... and again, I was this close to telling him to stop being silly and get dressed ... but he stopped and sat down and kept talking ... I could tell he had more to say and I was trying so hard to be a good listener.

"So you know what I think they mean when they say the tongue is the strongest muscle?"

At this point I was, again, this close to telling him why the tongue is considered such a strong muscle ... about the anatomy and physiology of the tongue and it's immense job in our bodies ... my inner science teacher was just begging to be unleashed.  But he had asked if I knew what HE thought.  And I didn't.  So I said, "What, buddy?"

"I think they mean, like ... and this is just an example, Mom, I don't mean this for real ... but I think they mean if I were to say to you that I think your glasses are ugly.  My tongue would be saying that.  And it would hurt your feelings.  I think they mean the tongue is so strong it can hurt feelings more than arms can, even if arms can lift tables."

Thank you, Holy Spirit, for reaching down and taming my tongue so I could hear my boy say that.  I am such a slow learner, but I hope I will eventually figure out that if I am quicker to listen and slower to speak, I will be blessed.

Monday, November 18, 2013

Silver lining

I overheard Charlie and one of his school buddies chatting the other day.  Charlie's friend was talking about his little sister, telling Charlie that she was "annoying."

I was so curious ... so later I asked Charlie if he ever thought his little sister was annoying.

"Nope."

"Oh, I'm glad to hear that, buddy!  Why not?"

(tone of voice: the "duh" was implied) "She has CdLS!  She doesn't talk!"

I literally laughed out loud. :)  Fair enough, big brother, fair enough.

Friday, November 15, 2013

Emma sized party

There are two types of people in the world; those who want to be celebrated on their birthday and will tell you exactly how you should plan said celebration, those who want to be celebrated on their birthday but will tell you they don't want anything special/don't want to be a burden/don't care, those who regret the fact that they're a year older and don't believe that's a reason to celebrate, those who don't like to be the center of attention and therefore would honestly like it to be just another day, and those who have no idea it's their birthday.... Like I said, there's two types of people in the world.....

The Princess Diva is in the second category, she doesn't have any idea it's her birthday and would prefer it be just another 'stick to the routine' day. Cause if you don't stick to the routine, you get this!
All 23 lbs of Angry Bear!

So, in the interest of avoiding that......Becky and I debated; how/what do we do for her birthday that's really about her? What would she enjoy? Big family get together at home.....nope. She's not big on people being in her space. Big family get together at a different place.....nope. She's not big on new places. Takes her a long while to warm up. Some fun activity with friends.....nope. She's not big on new things/places. Again the warming up period. Maybe go out to a nice dinner! Oh wait.....she threw a whole chicken breast at someone while we were out not too long ago. Nope.  

Charlie and I decided to make her cupcakes. If she throws one, we have more. (see a theme?)

We picked a family friendly (read: we could pick our own table and place Emma strategically in front of a wall. She only throws backwards!) restaurant, and then we came home and let Emma go at the cupcakes.


You want me to do what with this?

There are some distinct advantages to having a child who grows up very slowly. This is at least the third year we've done the "make a mess of yourself and straight to the bath" part of the party.

I think I remember this!
Squishy!



I must study and yell at it!

Charlie! You must understand my excitement! They gave me a second cupcake!


One moment! It seems I now have a third cupcake!

Now I must wear it!

So, that was Emma's 5th birthday. A smashing success!



Ok, I just thought this pic was cute. - Josh









Thursday, November 14, 2013

Sometimes love is NOT throwing a party

So the Bear turned 5.

And we did NOT throw her a party.

Here's the thing about my girl.  She's a child of routine.  She doesn't necessarily understand when something "out of the ordinary" happens, so routines help settle her.  And lots of people in her house is NOT a part of her routine.

Yes, she eventually adjusts when we have people over.  There is some yelling involved (on her part, not ours), but we usually know that we can just sit and wait and after a bit she'll adjust to the idea of it being fun to have people at her house.

But a party in her honor doesn't seem like something she should have to "deal with" or "adjust to" or "get used to".  It doesn't seem loving to a Bear to put her through something that she won't enjoy simply because she's graced us with her presence for a full five years.

So we didn't.

Instead, I let her loose in a craft store :)



She is a child who loves textures and color and patterns, so I took her to a craft store and just let her have her way with things


At first I thought maybe we'd be bringing home peacock feathers, but she eventually lost interest


She zeroed in on rubber-band bracelets.


Charlie and his classmates have been exchanging these as friendship bracelets, and she's been coveting his, so it didn't surprise me that that's where she landed.

Charlie was thrilled with her choice and immediately set about to making her a bracelet.  If she'd hold still for long enough, I'd show you a picture of it, but she dances around with it and it's become her security item for the week, so you'll have to take my word for it :)

She had a delightful birthday.

It wasn't what I thought a five-year-old birthday would look like ... but I think you know me well enough by now to know I'm over that, right? :)

Thank you, Heavenly Father, for the gift of Emma

Wednesday, November 13, 2013

See? Happy.

Oh, how I love this sweet girl!











Thanks for all the birthday wishes for the Bear.  It was a pretty great day :)

Tuesday, November 12, 2013

Dear 29-year-old self ... five years later

Dear 29-year-old self,

Today is Emma's 5th birthday!  I can hardly believe she's turning 5!

I wanted to write you a letter ... actually, I wish I could reach back through time and give you a hug.  Your world has just been rocked by a diagnosis.  You hate the letters CdLS right now, and the future looks scary and uncertain.

But somehow, amazingly, five years have passed, and truly, it really is okay.  I mean, it's not your current 29-year-old definition of okay, but it really is going to be just fine.

You are happy!  Five years later, Becky, you are going to sit down and realized that your life is blessed and you and your family are happy!

Yes, she doesn't talk (yet?).  But you look in her eyes and she tells you she loves you.  Without words.  You just know.  She smiles and dances a little when you pick her up from preschool.  She has a knowing twinkle in her eye that tells you she understands, and when she wants something, she CERTAINLY gets her point across.

And you are happy.

True, she still wears size 2T clothing.  But she's ADORABLE.  You'll look back at yourself, bragging about how big Charlie is (as if you had something to do with that), and laugh.  You'll realize that there are things beyond your control, and that the height of your children is one of them.  She's your tiny dancer, your little princess.  You often have to defend her size to doctors and rude strangers alike, but you're okay with it.  You are proud of her.

And you are happy.

She does walk, but she doesn't really follow directions, so she's a bit of a stinker.  And you think it's hysterical!  She has this strut, marching into a room at church like she owns the place or marching away from you when she doesn't get her way ... it makes you laugh out loud.  She makes other people who love her laugh, too.

And you are happy

And of course, medically, she's had quite a road.  She's had over a dozen surgeries at this point, in addition to illnesses and hospital stays that have been terrifying.  But you know what, self?  She's so strong.  And when you really stop to think about it, so are you.  Christ is going to give you more strength than you can even imagine right now.  Right now, Emma is healthy.  Your family has fought hard for it, but she is healthy.

And happy

And if we're being honest with each other, self, I know you're worried about Josh.  You know the statistics that the divorce rate in situations like ours is staggering.  I'll be real.  Five years later, you will COMPLETELY understand why.  It's hard work.  Really really hard.  But you have no way of knowing how much deeper in love with your husband you will be five years from now.  You don't know this yet, but he's one of the good ones in ways you can't even comprehend.

And you are happy.

Oh, and Charlie.  He's so great.  I know you worried about him still getting to be a "normal" kid.  His life is not normal.  It's so much richer, deeper, truer, and more blessed than your current definition of "normal."  Yes, he cries when Emma is in the hospital.  Yes, he bears the burden of explaining CdLS to his friends.  But he rises to the challenge and amazes you.  Yes, there are times when he misses out, and times when you miss out on him, but no member of your little family of four is EVER taken for granted.  You will see God work in the life of your son in ways you cannot anticipate.

And he's happy

Emma knows she's loved.  Every day.  I don't think she knows it's her birthday, today ... but I am CERTAIN that she knows she's loved.

Which means that today, she'll have a Happy Birthday. :)

Friday, September 27, 2013

Friday Fun Fact

Did you know that actually orally eating a food containing garlic has nothing to do with your breath smelling awful after you consume it?

In fact, that terrible odor is not even phased by an esophagus having been surgically altered to prevent reflux.

Nope, a delicious stew containing tomato and basil and onion and GARLIC, once blended, will give an individual offensive-smelling breath even if it is tube-fed directly into the individual's belly!

huh

who knew?

She's lucky she's cute :)






PS - Thank you so much for all your prayers!  Recovery is still going amazingly well.  We've had a couple of rough nights of sleep, but I suspect it's just finding the balance between Emma still needing pain meds vs needing to back off on the pain meds because they are upsetting her tummy.  We'll figure it out!  Praising God for a mostly very happy little girl!

Friday, September 20, 2013

So what happened with that little ear?

So on one hand, surgery was a tremendous success!  The Not a Tumor is gone, no re-growth, no more damage.

And recovery is going pretty smoothly, also, all things considered.  The first couple of hours after surgery were pretty rough, and we're pretty drained both emotionally and physically, but overall it's not nearly as bad as we anticipated.  She's needing pain meds and has periods of fussiness, but it's nothing compared to last time we had this type of surgery.  After the last ear surgery like this, her tummy was VERY unhappy with the amount of pain medicine she needed, and this time things are going MUCH better.  To have her have actual periods of happiness and periods of contentment only a day out of surgery is unheard of for this little girl, but today it's what we've been seeing.  Praise God!

The ease of the recovery, though, is partially due to a disappointing outcome of this procedure.  The hope was that if our Fabulous ENT did not find any more evidence of cholesteatoma, he would begin to re-build the tiny little bones in her middle ear that help facilitate hearing.  His plan was to synthetically reconstruct some of those bones, assuming he found no re-growth.

However, once he was actually in there, he found that there simply was not enough real estate.  The space was just too small, so he made the call that it would not be beneficial to re-build those bones.  I agree with the decision for several reasons.  First, Emma's ears have a tendency to grow granulation tissue and there doesn't seem to be high chances for success of placing synthetic bones in such a small space and not having the body try to fight them off.  Second, any manipulation we do in anything other than perfectly ideal conditions increases the chance of growing a new cholesteatoma.  And finally, she's always going to need hearing aids anyway.  If she didn't have underlying hearing loss, the cost/benefit analysis might be different, but she needs amplification under even the best conditions, so risking the ear health to try to improve hearing doesn't seem worth it to anyone involved.  She can still hear, we just need to re-test her hearing once she's all healed and adjust her hearing aids accordingly.

The short version of the story?  He opened her up, took a look around, and closed her back up again.

So we could look at the situation and say that Emma had the side of her head opened up for no good reason, but I am absolutely NOT feeling negative about the surgery.  Looking at the situation as a whole, I refuse to be disappointed.

I'm glad we don't have to wonder if that disease was still there.  We know it's gone

I'm thankful that Emma is showing us how strong she really is.

I'm very proud that her tummy is in such a better place.  I firmly believe that her new "real food" diet is helping her cope with all the stuff life is going be throwing at her and it's good to be able to see the positive results.

And I trust her ENT that he made the right call.

I feel like the event just brought out so many blessings.  She's doing so very well. 

Our God is so big, so strong and so mighty, there's nothing our God cannot do.  He sustains her (and us), and He shows us his tangible love by surrounding us with wonderful people to support and pray for us, and He never leaves our side.

blessed :)

Tuesday, September 17, 2013

More medical details

... as much as I understand, anyway :)

So last December, you may remember that Emma went in for an ear cleaning, and came out with one less ear drum.  A cholesteatoma (known around here as Not A Tumor, because it acts like one but isn't one) had basically eaten away at her middle and inner ear.  She had surgery in February to drill out the disease from the mastoid bone and reconstruct her ear drum.  That surgery was successful, but recovery was painful and difficult, partially because she was also recovering from c diff that had her hospitalized earlier that month.

This week's surgery is a follow-up.  There is no way to tell without going back into her ear whether or not the Not a Tumor was completely removed.  This will be another "open ear" surgery, and our Fabulous ENT will be removing any disease he finds.

I'm not clear what will happen next for sure.  IF he goes in and finds that this disease was truly completely removed 6 months ago, and therefore has not re-grown or spread, then he will try to re-build some of those tiny little bones that facilitate hearing.  If he finds more disease, then obviously he will remove it, but I don't think he can do any re-building until after we are sure the Not A Tumor is really gone.

Does that mean that if he finds disease this time that we're back for Round 3 in 6 months, opening up her ear again?  I'm not sure.  I think that's a question we don't know the answer to until we see what he finds.

And what does this mean for Emma's hearing?  Again, I'm not sure.  It's been a really long time since Emma's ear health has been stable, so it's been a really long time since her most recent sedated hearing test (ABR).  My understanding is that her hearing aids are currently set to a "best guess" setting based on her reactions in a sound booth test (behavioral hearing test), but if you know my daughter, you can be as confident as I am that those settings aren't completely accurate. But at the end of the day, who cares?  If this setting helps her and she tolerates it, then ... great.  Right?

But Emma is much more healthy going into surgery this time around, so we are praying that recovery will be less difficult.

I can't tell you how touched I am that people have asked questions about the details of this surgery.  As usual, I offer these details with complete humility.  I am not a doctor (but I play one in real life, ha ha), so I could be wrong in my understanding of this procedure or of the possible outcomes.  And we all know that curve-balls are Emma's specialty, so who knows what we're going to learn once we open her up? :)

Thank you so much for your prayers!

Monday, September 16, 2013

The phone call I may or may not have made this morning

Emma has had over a dozen surgeries in her little life.

This one is not the most major or the most risky, nor is it the most unexpected.

(we knew 6 months ago when our Fabulous ENT had to remove the cholesteatoma (aka Not A Tumor) from her ear that a second surgery would be necessary to make sure it wasn't growing back)

But for some reason, it's been throwing me for the biggest emotional tailspin.

I AM DREADING this surgery!

This does NOT get easier ...

The having to say goodbye part, I think, is what's actually getting much much harder.

She still does not have any way of understanding how this process will actually help her in the long run, but she IS starting to understand "goodbye" more and more.  In fact, lately, she's been starting to use a sign with me that sort of approximates the idea of "I'll be right back".  When I have to run down to the laundry room and Emma is playing upstairs, I always get her attention and tell her with a sign that I will be "right back".  Pretty reliably, lately, she has been signing it back to me, confirming that she understands that I'm coming back.  And she's also been spontaneously using the sign to ask me what's happening next.  We went to a friend's house this weekend, a place where she has been dropped off before without Mom and Dad staying.  We walked in and I was chatting and Emma was roaming a bit, and then she found me and tilted her head a bit and looked into my eyes and signed, "right back?"  I am CERTAIN that she was asking me to confirm that, if I was leaving, I would be right back.  I shook my head no, and told her that I was staying.  She signs that question when I drop her off for Sunday School as well, and once she even did it when Daddy put her down for bed instead of me ... I think the bedtime one was asking if I was coming to say goodnight.

A child with that level of understanding is MUCH more difficult to send away into surgery.

She trusts me.  She trusts that, when I say I'll be back, I'll be back.  And she is searching for clarification when she's uncertain. 

How can I possibly clarify this to her? 

And, more importantly, how can I leave her?  Yes, it's sort of a situation in which I will be "right back," but in the meantime something is going to happen to your little body that is going to cause you pain when you wake up.

So I may or may not have made a phone call today ... to Emma's Fabulous ENT ... asking if this truly was the only option ... are there other things we could do to follow-up on the cholesteatoma that are less invasive?

Whiny subtext:  I DON'T WANNA DO THIS!

He was very patient in explaining why scans and other options aren't effective in ruling out re-growth and that if we waited for symptoms to show up we may be waiting too long and it could cause more damage.  This is protocol and I have to trust it.

He told me nothing I didn't already know, but ... still ... I DON'T WANNA DO THIS!

The only thing that's calming me down when I start crying about it is this promise:  I cannot be with her during her surgery, but her Heavenly Father will NEVER leave her side. 

I am holding tight to that promise.

Thursday, September 12, 2013

Updates - another surgery

Yup, once again it's been awhile, but a lot of stuff has been going on around here.

Charlie's first month of first grade has been great.  He's growing and thriving and making lots of friends and re-connecting with friends from last year and it's wonderful.  He's also in soccer at the moment and we're gearing up for "musical season" ... rehearsals for our church's Christmas musical started yesterday, and we're excited for another great year with that.

And Emma is doing SO SO well!  She's back in school now and doing great.  Wearing her hearing aids full-time still, and doing wonderfully with the transition to a Blenderized Diet.  There were some concerns for a bit about her out-put, and her GI ordered a lab test to check out her pancreas, but we just got those results back and everything checked out just fine, so I guess for right now it's just a matter of fine-tuning her diet.  But she's honestly doing SO great!

Which makes it really hard to know that she has surgery next week.

Her ENT needs to open up her ear again.  We knew this surgery was coming; it's a follow-up procedure related to the Not A Tumor in her ear.  But I'm not gonna lie, it sucks.  Recovery after the last "open ear" procedure was pretty rough, and she'll probably be staying the night at Children's after this time as well.

We've done this lots of times, but I swear it's getting harder and harder instead of easier.  She's more aware of lots of things now, but still not in a place where I could even begin to explain this to her.  And unlike surgeries that have promised to remove a source of pain, this time we're taking a happy healthy Emma in and we're going to walk out with a miserable little girl.  In fact, she's happier now than she's been in a really long time, and it makes it harder to bring her in for a procedure that will be a rough recovery.

She's so strong, though, she'll bounce back.

I may throw a few temper tantrums between now and then :)

But we know our Great Physician is already there and will walk by our side as He always has  

Wednesday, August 7, 2013

wisdom

Charlie started first grade this week and he has been LOVING telling me about his day.  Yesterday, he told me about Phy Ed and Music and punching in his code to get lunch and the "clip up" system his teacher uses to redirect students' behavior.  And then, after all that, as sort of an afterthought, he told me,

"Oh, and I stood up to a bully today!"

He said he was in the hallway during dismissal time, lining up for the carpool,  and there were two boys in "3rd or 4th grade?" interacting in line in front of him.  He said that one boy had glasses and the other didn't, and that the boy without glasses kept yanking on the backpack of the boy with glasses.  The boy with glasses kept asking him to stop, but he wouldn't.

So Charlie, apparently, walked up to the boy and said, "He asked you to stop, you should stop."

The response was something along the lines of, "I don't have to listen to you, KINDERGARTENER!"

Charlie said, "Nice try, I'm in first grade, and anyway, it doesn't matter how old I am, if he wants you to stop pulling on his backpack, you should stop."

At this point, a buddy of Charlie's chimed in with, "Yeah, how would you feel if it were you?"

Charlie then told me that at that point, the boy had some "not nice words" that he "didn't know what they meant" to say to him.  I asked Charlie if that hurt his feelings.  He said no, and that the boy didn't yank the backpack again.  Then it was time to go.

That was yesterday's story, and it made me so proud of him.

What made me even prouder, though, was today's story.

Apparently he ran into the boy he had confronted again today by the drinking fountains.

The boy who had been yanking the backpack yesterday looked at Charlie today and said, "I recognize you."

Charlie walked right up to him with a friendly smile and said, "Hi!  Hey, I never asked you, what grade are you in?"

Apparently the boy responded and they had a friendly "nice to meet you" exchange.

I clarified when he told me the story: "So, like, you were kind and he was kind and everything was cool today?"

"Yup."

I have been praying very specifically this week for the Spirit of God to pour wisdom into the heart of my son.
I praise God for answered prayers :)

Tuesday, July 30, 2013

Food

I was unprepared for the emotions that swept over me today at lunch.







Emma and I shared a salad.

Chopped up veggies and seeds and avocado and greens ... a portion for my plate, and a portion into the blender.

Real food, prepared by me, pushed into her belly through her tube.

I ate what she ate.  The good feeling I have of knowing that I've eaten a healthy lunch ... multiplied, somehow, by the knowledge that I've prepared what's best for her also.

I kind of almost cried. :)

Since her birth, a machine has had to feed her.  And yes, for a time, a machine fed her breastmilk, but that went poorly.  She had such an awful reaction to my pumped milk that the ER doc didn't even bother suggesting that I try to cut out dairy or something; we just went straight to super-hypoallergenic formula. 

And let's be clear: the formula kept her alive and I'm thankful for that, but it was NOT food.  


But now I can prepare her a meal.  From food.  Real food.

I wasn't expecting it to be so emotional :)

And as a side note ...

I need to tell you about our blender.

Blender?  Like the kitchen appliance?

Yes

Okay.  So.  When we first started playing with blending fruits and veggies for Emma's tube, it became obvious that what we had in the way of blenders was WOEFULLY lacking.  In order to get real food thin enough to push through Emma's tube, we were burning through blenders at an alarming rate. 

But I knew that it was something I really wanted to pursue with Emma.  I firmly believe that her history of c diff is tied to the lack of real food flora in her gut.  Given the (poo-related) changes we're already starting to see, I am absolutely convinced that food vs formula will make a large difference in Emma's health.

So I had heard from some like-minded special mommies that Blendtec (you know, the company that makes the super-expensive blenders that will grind up your cell-phone?) will sometimes offer medical discounts for families like mine.

(I promise, no one from that company knows that my little blog will be promoting their product!)

So I sent them an email, including a picture of my adorable girl and sharing her story.

In return, they sent me a blender.

No strings attached.  They saw the need and met it.

WOW

I am so thankful!

(so while i'm not being paid to say this, if you are in the market for one of these crazy-powerful blenders, i would encourage you to consider this company.  shameless plug finished)

I cannot describe to you how wonderful it is that I can throw carrots and lettuce and spinach and mangoes and sweet peppers and nuts and ... all sorts of life-giving FOOD into a blender and then give it to my daughter.

So wonderful.

I may sound crazy, but I have come to believe that God made food and God made us and God made us to live best when we eat the food He provided.

Emma included :)

Sunday, July 28, 2013

Overheard conversations ...

between my son and some of his friends.

I was in the minivan with Emma, Charlie, and 2 of his friends.

So 3 boys were in the back seat, deep in conversation.

I think it opened with, "Does God fart?"

"Oh, man, if He did, you wouldn't be able to go anywhere to get away from the smell, cuz He's EVERYWHERE!"

"Well, but what if He was helping someone in another country when He did it?"

"Nope, I'm pretty sure He's everywhere all the time."

"And seriously, dude, it would be STRONG, cuz He's the most powerfulest in the world!"

"But if God farts, does it stink?"

At this point I couldn't resist any longer ... from the front seat, doing my best to keep a straight face, I said, "I just want to make sure I'm hearing you correctly.  Are you discussing GOD passing gas?"

uncertain pause ... "he started it" ...

"Nope, I just want to make sure I understand the conversation," I said.

"Yes."

"Just clarifying.  Carry on."

Seriously.  BOYS!

Thursday, July 25, 2013

Trust me, these are really big events in my life :)

Emma is wearing her hearing aids!  Like, all the time! 

She doesn't love the process of getting them in her ears, but she's doing really really well with them and it seems to be really paying off.  She's attending more to people and activities and just in general doing great!

Which goes along with our second REALLY exciting thing that's been happening around here :)


Emma's Teachers Who We Love have been working really hard with Emma to teach her to communicate using PECS cards.  These are small cards with cartoon images on them that represent various things Emma might want.  The trick has been teaching her that she can get what she wants by handing you a card in exchange for the desired object.


Apparently, a few weeks ago, a light bulb really turned on for Emma at school.  She hit a HUGELY important moment of understanding that "I can get what I want if I ask for it using a card"

Her Speech teacher (who we LOVE) has been coming to the house to teach us the protocol, and I cried the first time I saw Emma purposely look at an object, find the corresponding card, pick up the card and hand it to her teacher, simultaneously reaching for the object knowing that she was going to get it because she had asked for it.

Tonight, Charlie and Emma and I sat down for about an hour to play "card games" with Emma.  Their favorite, I think, was a fishing game.  Charlie had one of those magnet "fishing poles" and Emma had cards with colors on them.  Charlie would fish for the color she asked him for, and then Emma would take it off the pole and put it in a blue felt bag "pond" :)  Charlie was SO proud of his sister!  I think he's been yearning for communication, too, and it filled my heart to see it really truly happen. 

And they did a lot of giggling when Emma caught the fishing line instead of the fish and Charlie made a big production about how he "had a BIG one on the line, here!  I'm not sure if I can pull 'er in!"  tug tug tug ... you get the idea.  True beautiful wonderful sibling play.

*tear*

Thirdly, and I honestly think on a not-unrelated note, we've been changing Emma's diet up a bit.  This really deserves it's own post, but I honestly believe that it's contributed to Emma doing so well in other areas. 

We've been blending up real food and putting it into her tummy through her tube.  For example, this morning for breakfast, Emma had an oats, spinach, mango, and pineapple smoothie (as did I, by the way, and it was delicious!)

We're sort of stumbling through figuring out what works for her tummy and what doesn't ... as well as what works for US and what doesn't ... but I'm really excited about this!  It makes me feel so good, knowing Emma is getting closer and closer to living off of REAL food!

So that's what classifies as REALLY REALLY exciting around my house :)

We're praising God from whom all blessings flow.  We are so thankful!

Thursday, July 11, 2013

In love

This is going to sound a bit morbid.

But it's truly a wonderful thing, I promise

Almost 5 years ago now, during my pregnancy with Emma, I was told to prepare for her death.  There was even paperwork involved.

Now, I know I've shared that before, but I don't think I have thought about, lately, the real impact that had on me.  It's not a simple thing, telling a mother that her child might die.

But because of that, I held on loosely, even after she came home from NICU.  Not that I haven't fought like heck for that little girl's well-being on more than one occasion ... but I was still "preparing"

Which makes bonding with your baby difficult.

Particularly when that baby doesn't relate in typical ways.  I'm still waiting on that first "I love you, Mommy."

And medically, she has had her fair share of complexity.

I think maybe I've been guarding my heart?

Fast-forward 4 years.





She's doing so well!

And this summer, once again, more light bulbs seem to be turning on in that little girl's head.

She took me by the hand the other day when we were outside.  Very intentionally, she led me to her little plastic slide.  Then she pointed at it!  I held her hand and she climbed up and then went down the slide!  She got up, walked back around to the stairs, and reached for my hand again.  And again, and again.

She's DOING things.  She reaches out to me to help her, and she WANTS to share her play with me.  She HANDS me things.  Not that I wouldn't love her if she weren't doing those things, but it's just another piece to the fact that I feel like I'm getting to know her so much better.

And she mimics me :)  She took a pair of little kid's sunglasses out of a toy box this weekend and tried to put them on.  Then, she took them off and cleaned them with the skirt she was wearing!  She's doing such big girl things.

I swear she looks into my eyes more and more every day

And I cheer for these things so deeply, and it reminds me of how wonderful she is and how lucky I am that she is mine.

But the other night I had a dream.  I dreamed my family and I were in a speed boat and Emma slipped and fell off.  She sank under the wake.  I dove in and tried to find her, but I couldn't, and I woke up in a panic.

It made me realize something.

I am no longer "prepared"

I am so massively in love with that little girl that my heart is no longer on guard should "something happen"

It's a pretty vulnerable place to be

But I'm okay with that. 

Sometimes love is best served vulnerable

Tuesday, July 2, 2013

Little Blessings

A wise woman recently mentioned to me that she loves how carefully Emma examines the world.

One of my favorite things to do with Emma these days is to walk with her in my backyard and have her "help" me dead-head our flowers.  I love it because I can hand Emma a wide variety of beautiful little flowers to play with.

She examines it closely.

She twirls it

She sniffs it

She rubs the petals in between two of her tiny fingers to truly get a sense of it's texture and feeling.

For a moment, for her, there is nothing in the world but this small flower.

She is searching for understanding, I think.  And, after she has studied her object, she seems satisfied, smiles, and moves on to find something else to drink in deeply.  (you have experienced this if Emma has ever taken a liking to your jewelery ... or beard ...)

There is so much Emma doesn't understand

She does not understand the "Big Picture" stuff.  She cannot comprehend the idea of what tomorrow might be like.  She doesn't plan, and wouldn't have the wisdom to do so.

She drinks deeply in the now.  A flower, a blade of grass, a moment of sunshine, her hands in the sand ... all are wonders that require her full attention.

Even the hosta plants that I take for granted must be investigated.  Who knows?  They may carry a secret scent

Jesus said, "Do not worry, saying, 'What shall we eat?  What shall we drink?  What shall we wear?' for the pagans run after all these things but your Heavenly Father knows that you need them.  But seek first His Kingdom and His righteousness and all these things will be given to you as well.  Do not worry about tomorrow for tomorrow will worry about itself.  Each day has enough trouble of it's own." - Matthew 6

What of His Kingdom do I miss because I'm too worried about tomorrow?  One of the biggest lessons my daughter has taught me is that my relationship with my Heavenly Father needs to be one of trust because His understanding so completely exceeds my own; just as she needs to trust in areas where she doesn't understand.  So if I were to concern myself less with things I can't possibly understand, would I find the joy that Emma finds?

If I let tomorrow worry about itself, will it free my mind up to see more joy today?

I think Emma would say that it would :)


Sunday, June 30, 2013

Movin on up!

... or down, as the case may be :)

Emma did something HUGE today!

During church, she did not go to the nursery ... or the toddler room ...

she went downstairs to SUNDAY SCHOOL!

This is so so big for me.  It's kind of the moment I've been dreading for awhile, actually. 

I think I'm spoiled in some ways, because of Emma's size.  She'll be 5 in November, but she's still only 22 pounds.  So while I have no denial issues regarding the fact that she has significant delays, there are many "shoulds" that I haven't really confronted yet.  She didn't look out of place in the toddler room at church on Sunday mornings.

But she really "should" have moved downstairs to PreK Sunday School last fall.

Let's be clear: I didn't want her to move.  Until now, she wouldn't have been successful.  I didn't want to cause a disruption or inconvenience anyone.  And honestly, I was all set for another school year in the toddler room until a friend pointed out something profound to me:

Emma has friends.

In the class of kids who will move to PreK Sunday School in the fall, there are children who honestly consider Emma to be one of their friends


And through conversations with wise fellow-travelers, I started thinking about what it will look like, 10 years from now, for those kids who have grown up with Emma.  What impact will a friendship like that have?

So I was hesitant, but eventually convinced that she was ready for this transition.

I'm not sure if I'm conveying how big a deal this is ... I had been dreading this transition for years, actually.  I've been terrified of the day when she would no longer be appropriately placed with the babies, but unable to be successful with kids her own age.   And who, I thought, would want to chase her around while other kids are able to follow directions to go to the snack table?  Can I honestly ask that of anyone?  We are only one family of many, who are we to ask that much of someone's time?

We are so blessed.

A young teenager in our church is willing, able, and has signed on to be "Emma's helper"

She helped Emma play with other kids, sit in circle time, move to the snack table, and BE SUCCESSFUL in big kid Sunday School!!

(have i mentioned recently that i love my church?)

I am so very thankful. 

And I'm sorry if this post is kind of rambling ... but I'm a super proud mommy ... and feeling amazingly, abundantly blessed.

Tuesday, June 25, 2013

Why, yes, yes I am ...


... pouring liquified spinach into my daughter's tummy.

Wouldn't you? :)



Friday, June 21, 2013

Just another night at the park



The kids and I were at a park near our house last night.  We hadn't picked the playground for this reason, but when Emma and I walked over to the swings, I saw that there was a swing set up that larger child with a physical disability could use.

Emma still fits in the baby swing (although she prefers to swing on my lap), so I just sort of smiled and thought, "that's nice" and moved on








Charlie played with park friends and Emma and I hung out.  We're working on playgrounds this summer.  Swinging, walking on uneven surfaces, climbing, sliding ... all very difficult for Emma, but something I feel like she could enjoy.

After we had been there for a bit, I noticed a man and his son walking toward the playground from the parking lot.

I recognized the boy's very thin limbs and unsteady walk

I recognized the way the dad held both his hands, despite the fact that the boy was clearly middle school age.

I recognized the boy's arms flapping to show excitement.

I recognized the way he held his head.

And sadly, I recognized the dad's determined look.  He made eye contact with no one.  He had the look of someone who knew he was getting stared at and who was not in the mood to educate today.

He walked past where Emma and I were sitting (she was playing with the rocks on the ground with her back to them) and refused to meet my gaze.

The caring father helped his son into the special swing, which was clearly the sole reason for their visit, and the boy settled in and smiled as if to say, "At last!"

I don't think Emma knew that a member of her Club had joined the scene.  I think she was just interested in the brightly colored swing and the keys dangling from the father's belt.  But I felt so bad. The father seemed to be avoiding looking at us because he thought a toddler was staring at his boy.

I hovered near Emma as she walked toward them, and once we were close enough, I said, "I think Emma is thinking that maybe today might be the day she'll be brave enough to try the swing."

The father finally turned and looked at Emma.

When you meet a fellow-traveler along this unique road, it feels a little like being in a foreign country, where you don't speak the language, and finally hearing someone fluent in English.  It's not like you're going to be best friends, for all you know you may have nothing in common, but the familiar sound is a breath of fresh air.  You feel relief.

"Oh!  Hi, beautiful!" he said to my girl.

The conversation was familiar and comfortable.  Eyes,  Ears,  Heart,  GI,  Nissen,  Tube,  When? Non-verbal,  Do you work?  Siblings? Which docs do you see?  Did you know?

So Charlie made his way over to us after a while and heard us talking about various medical commonalities between our kids.  I introduced Charlie as Emma's big brother (he loves that ... I know he won't always love that, but he still does). I told Charlie that we were chatting about how this boy eats like Emma does.

Then the man asked Charlie, "Is it hard to have a sister like Emma?"

Charlie didn't answer immediately.  "Sometimes"

The man told Charlie that his other son felt the same way.

Charlie didn't really know how to respond to that ... so he took a couple of steps away and picked up his sister.

At that point, the boy in the swing tapped his dad's arm and they started to head home.  

"It was nice to meet you!"  ... and really, it was ...

But the man's question to Charlie stuck with me

So today, the kids and I picked up a few things at the grocery store.  When we got back to the van, Charlie asked if he could help Emma into her car seat and buckle her.  I said he could if he also hooked up her tube for a snack on the way home.  He said okay, so I put the groceries in the van while he took care of Emma.

While we were driving, I told Charlie that I was very thankful Emma has such a helpful Big Brother.  I asked him what he thought about the man's question last night.

"Well," Charlie said, "I wasn't really sure what he was talking about.  I mean, I understood his question, but I don't see it that way.  We're just brother and sister, you know?  I mean, it's hard if it's a stressful day, but ..."

pause

"She's just my sister!"


Oh, how I love these kids!  I am unworthy of the honor of getting to call them mine. 

Tuesday, June 18, 2013

An attempt ...

...  at a lovely picture of Daddy and the kids out for Father's Day dinner ...











Um

Well

It was lovely, trust me :)

So thankful that my kids have such a wonderfully amazing Daddy!



Wednesday, June 12, 2013

I am invincible (Part 2)

I've been thinking for awhile about whether or not to blog about this.  It seems like an odd topic for me to write about, as I am IN NO WAY an expert ... and it seems unrelated to the typical scope my blogging. 

This is not a food blog

And I am NOT a nutrition expert.  AT ALL.

So how is what I eat related in any way to my "Emma Journey"?

But then I thought about this post about how I can't die.  I thought about Emma's dependence on me.

And I thought about the toll the last 4 years have taken on my body ... my brother may or may not have accused me of aging like a president ... he loves me so he can get away with saying things like that :)

I remember one summer when I was young, there was this bird's nest with eggs in it in our backyard.  It was built in a shrub low to the ground, so my mom would bring us outside to look at the nest, until one day we went out to find the eggs had hatched and we were greeted by the thrilling sight of baby birds.  We were told not to touch them, of course, but Mama Bird didn't know that, and was sure we were a threat.  So Mama Bird flew down to a lower part of our yard and started acting very strange.  She spread out one of her wings and started limping, as if she were hurt.  My mom explained that Mama was trying to draw us away from her babies, that she was willing to make herself look like a better lunch than her young in the hopes of saving her little ones.

I think I think I'm doing that sometimes.  I think I tell myself that my lack of care for my own body is a trade-off for doing "this life" well. 

The sleepless nights.

The worry.

The lunches coming from a drive-thru in between Charlie's carpool and Emma's therapies.

The lack of exercise (other than chasing a Bear or running from appointment to appointment)

The adrenaline addiction coming from episode after episode of packing a hospital bag and deciding when it was time to run to the ER.

It takes it's toll.

I weighed more at my physical in March than I did when I was 9 months pregnant with Charlie.

Now, I tell myself I have an excuse.  I could even convince myself that I am sacrificing my health and well-being for the sake of what my kids need.

But that logic doesn't do anyone any good.  I can't die, remember?

(yes, I'm joking about not dying ... you know what I mean, right? :) )

So what am I doing about it?

Well, about a month ago some dear friends introduced me to an interesting healthy drink.  It sounds gimick-y, but I promise you it's not.





I have become a firm believer in, and absolutely addicted to, green smoothies.

Yes, I know, they look ... a little different

But they honestly are delicious.

All you need are a blender and some produce.  No special additives required.

I started by replacing my morning coffee with a tall glass of yummy green-ness every morning.  I now no longer drink morning coffee.

But they are so yummy that I now average two a day, one right away in the morning, and the other for an "afternoon snack".

And, without even trying, I've lost 10 pounds. 

More importantly, though, is what has happened to my food cravings.  I no longer want crap.  I honestly would much rather have real food.  A bowl of berries sounds much more appealing to me than an order of fries.  And when my family does decide to order pizza for dinner, I'm not stuck trying to stop myself from eating an entire cheese pizza myself because my body was trying to wring all the nutrients it could from the scant amount of vegetable goodness in the tomato sauce!  I am much more nutritionally satisfied, so I'm not over-eating.

Here's what I do:
When I do my grocery shopping for the week, I always grab a bag of frozen fruit (whatever sounds good), some bananas (because I like them), and a LOT of dark, leafy greens.  You know, those ones that NONE of us get enough of, like kale and collards and chard and spinach?  I stock up.  Then, every morning, I fill our little blender with half fruit and half greens.  I add water, sometimes some fresh mint or ginger, and blend.  It takes less time than coffee.  Delicious.  The majority of the taste in the drink is the fruit, and I'm learning how to do the textures right (like, kale is more fiber-y, so it's texture doesn't mix well with the smooth sweetness of peaches, but goes deliciously with frozen blueberries)

I feel better and have way more energy.  My body is craving real, natural FOOD.  Haven't had a Tums since I started the routine, and people keep telling me how great I look.

But it's NOT about how I look (even though I wont' deny that fitting into old jeans again does feel really good).

It's about giving my body the right fuel to do what God is asking me to do.

He made us.  And He made the earth around us.  It's not surprising that when we eat what the EARTH provides (and not artificial things that aren't food), we are more equipped to do the good works He prepared in advance for us to do.



Thursday, June 6, 2013

In which I link to a friend's post without her permission...

... I'm sure she won't mind :)

My friend Maria is mother of one of "Emma's friends" named Ella.

Ella is just a little younger than Emma.  She's adorable!

Maria blogs, and while she is MUCH more artistically talented than I am (and would CERTAINLY know how to re-attach a "lattice thingy"), many of her posts echo sentiments that resound in my heart also.

Our journeys are different, of course, but parallel.

She shared a post this week about our girls being so very special.  It really resonated with me, so I'm sharing it.

I would encourage you to hop over to M Avenue and read about our One in a Million girls :)

Wednesday, June 5, 2013

Thankful for the skin on the bones

While I'm not quite ready to say that our new house feels completely like home yet, it feels more and more comfortable every day.  Thanks to everyone who has helped in that process!

Sitting down at the computer while Emma naps feels a little like my feet have found solid ground and my head is finally above water.  It feels luxurious, and I am so thankful for a chance to sit down and reflect on God's many blessings.

I am SO thankful for our new home, but I feel a little like I'm ready to think about something else for awhile, you know? 

Yes, there are some boxes to still be unpacked and some projects not checked off the "To Do List", but it feels like it's definitely time for those jobs to fall back into balance with the rest of our life.  I don't want to be lazy about making this house a home, but I also REALLY don't want that to be all-consuming.  I don't want to treat Charlie's 15th "Mom, wanna see something cool?" as an interruption ... my kids are WAY more important than the unpacked boxes.

And, as He often does, my Father used his Word and my children to remind me of that yesterday :)

Charlie recently got a copy of The Action Bible.  He's been devouring the stories, and I think he will have it read cover-to-cover before the week is over. 

Yesterday, he paused in his reading to show me a story.

"MOM!  Wanna see how amazing God is?!?!"

love him

He showed me the story of Ezekiel and the dry bones.  "God can take SKELETONS and give them their skin back and make them see and live and breathe again!"

Of course, the pictures of skeletons with half of their skin on was what drew my six-year-old to the story, but he's right; God is pretty amazing.

Because without God's spirit breathing life, we're all just dry bones.  Without God's helping power, all my efforts are as good as dry bones.  Without God's peace and joy and grace in our lives, this house is just dry bones.

I am thankful for the life God has given me.

Thursday, May 16, 2013

Becky

Ok, so Becky would never post this, but that's why I'm here! Here's a video of Becky giving a testimony last night. It's AWESOME!! The video quality is not so great, but the content is worth it!


Wednesday, May 1, 2013

Trying to conjure the emotions ...

We have lived in our current house for more than 7 years.  Two babies and a LOT of other stuff later, we are moving.

I gotta be honest, I thought I'd be more emotional. I honestly have been wondering when the tears were going to start.

I am the type of person who gets comfortable.  I dislike change.  In my early 20s, when it was time to admit that my first car wasn't reliable enough to drive anymore, I cried like a baby, patted it's hood, and told it that it was going to be going to a nice place with an open field where it could run and play with all the other cars ...

seriously.

But for lots of reasons, our current house is not right for our family anymore.  Many of those reasons are Emma-related, (it's a split-level floor plan and our bedroom is not on the same level as hers) and I sort of have been assuming that I would eventually start grieving that.  The house that I LOVED 5 years ago is not right for us any more because of a medically-complicated and developmentally delayed little girl.

But I am not sad :)

I am thankful that we can move.  I am thankful for where we are going.  I am thankful that we are actually going to be closer to the kids' schools and our church.  I am thankful for the friends who can help us.  I am thankful that Charlie is excited.

(and, as a side note, I mentioned to a few of my friends that Emma has been panicking whenever we've gotten out a box to pack ... she made her peace with the boxes this week, asserting her dominance over them by unpacking some and repacking others with half-eaten animal crackers ... I am counting that as a victory ... and I am thankful :) )

I am surprised by my lack of sadness, and loving it.  I really am ok.  I really do believe that home is where the heart is and the pieces of my heart that walk around outside my body (with my husband and kids) would be better elsewhere, and so I am joyfully and thankfully going.

Yes, if these walls could speak, they'd have tales to tell.

But they can't

So we are moving on.

Praise and glory to God, I think it's possible that I may have grown up a bit since I cried over my car. :)  And I am thankful for that, also.

Wednesday, April 24, 2013

It's not okay to neglect the kids, it is okay to neglect the blog.

Hello, there, Blogland!

I needed a little break :)  Not in a bad way, I just have had other things pulling me in other directions and, well, to be honest - its not okay to neglect the kids, it is okay to neglect the blog. 

I enjoy this space and the relationships it fosters and the mutual blessings we experience from public reflection ... but I hope you'll agree with me that when life gets busy and a mom is pressed for time ... a bloggy-break is the correct decision.

I had a break in the action today, though, and realized I missed this outlet.  So here I am :)

I think it's okay to share that we are moving soon.  We are staying in the same area, but we found a house that fits our family's needs better.  We are very blessed that this is not a move that we were forced into, and we are so thankful for this new place. 

And in the midst of that process, Emma came down with c diff again (yes, again again).  As empowering as it felt to have a doc willing to send a prescription based on just a Saturday morning phone call from a mom who knows what c diff smells like ... I'm a little over it and so are her docs.  We are all a little unsure of what happened here and why.  However, for the time being the infection is gone as she's back on medicine.  We will talk to her GI doc soon and come up with a plan.

God has been so gracious to our family.  I am constantly reminded that I do NOT have what it takes to live this life and that's when I turn around and remember that He's always in the canoe with me - so we just keeping paddling.

Happy Wednesday, everyone!

Friday, March 29, 2013

Holy Week and carols

I've been thinking a lot about Christmas carols this week.

I love ancient carols.  You know, the old, good ones that sort of reach back in time and reassure us that our faith isn't a new creation of this generation.

"God and sinners reconciled.  Joyful, all ye nations rise!  Join the triumph of the skies!"

I love the "holiday season" that comes with Christmas

But Easter hasn't really ever been that for me.  No "hustle and bustle" 

And I love it.

I love the quiet, the reaching back and being thankful that
Christ has died
Christ has risen
Christ will come again

Many of us learn these carols before we really understand what they mean.  I think the fact that they are so deeply ingrained makes them that much more meaningful.

"Fall on your knees!  Oh, hear the angels voices!"

Then rang the bells more loud and deep, God is not dead, nor does He sleep

Peace on the earth, good will to men from heaven's all-gracious King

The hopes and fears of all the years are met in Thee

Especially at Easter :)

Friday, March 15, 2013

Happy Friday!

We are so thankful!  God is good and we seem to be heading toward happier times :)






Praise and gratitude for happier days!