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.