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 :)