Thursday, March 31, 2011

Socks

Matthew 7:7-11 Which of you, if his son asks for bread, will give him a stone? If you know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him.

A very wise friend of mine said something yesterday that I was so encouraged by I just had to share ... I hope she doesn't mind :)

You know how, when we've gotten a really great gift for a child, WE can't wait for them to open it?

We just know they are going to LOVE it and we can't wait to see them play with it.

Sometimes I think God is like that.

He gives us all sorts of gifts in our lives.

And sometimes, even though we are thinking, "Umm, gee God, thanks for the socks..."

He's sitting up there thinking, "I just can't wait for them to get it!"

He can't wait for us to get far enough down the line to see the amazing gift He gave us in the form of

a rough spot in a marriage

a difficult battle in illness

a loss

a child with special needs

Because the good gifts of peace and blessing and love and comfort and wisdom and compassion and even joy that come with those gifts

Those come from above (James 1:17)

Monday, March 28, 2011

Faithfulness

Life is pretty good around our house right now.

Emma has started tolerating her hearing aids a lot more, and she's also figured out that she gets a lot of attention from me when she says, "MAMAMAMAMAMA" ... although I'm still sure she has no idea what it means :)

Charlie is at a very fun age and we love him to peices.

Josh and I are enjoying good health and loving good family time.

But it's when life is good that I'm struck by the unfairness that there are those around me in pain, whether because of a sick child or a sick parent or whatever other vast relational pain we can cause one another in this broken world.

Just as one small example in my little corner of the world - I posted a video of Emma's new "talking" on Facebook the other day (yes yes, I'll post it, gimme a minute:)), and then I scrolled down to see what her other friends were up to and many of them were posting updates on extended hospital stays. Not that our little community doesn't love each other in good times and bad times, but it just seemed wrong to be on top of the roller coaster when I know someone else is at the bottom.

We sang Great is Thy Faithfulness at church last week and my eyes closed and my spirit just soared in praise of my awesome God who provides so many blessings ... but I opened my eyes and looked around at the people with struggles that I know of even in my little church family and remember how hard it is to sing that song sometimes when you are in the valleys ... I remember singing it when Emma was in NICU.

So I want to share a video with you. This is Selah's version of Great is Thy Faithfulness. Todd Smith is the lead singer, and his wife Angie has a blog I read called Bring the Rain. She started blogging a couple of years ago when she was pregnant and learned that the baby she was carrying would not survive after birth. She carried the child to term and they got to spend a few precious hours with her before she passed. This man knows Gods faithfulness ... he knows what it means to say that God is good ALL THE TIME.

I just feel like I want to encourage ... if life is good, then praise Him with the words Great is Thy Faithfulness ... but in whatever circumstance ... GREAT is His Faithfulness

Wednesday, March 23, 2011

Those things we do

In between therapies and tears and stresses and worries, we really do have a very wonderful life!

The evidence follows:


We do art projects

We play the piano

(even if we have to stretch on our tip-toes to reach the keys)



We are super-heroes



(and for those familiar with the concept, yes, that is his "fuzzy corner" peaking up through the top of Daddy's head-lamp/action-hero-cape-holder)





We draw pictures of Daddy snuggling Emma






And Charlie holding a flower






We try to do our part to Feed Starving Children ...




And wear super-fashionable hairnets while doing so ...

















(Feed My Starving Children is a charity we volunteer with that sends packaged dry meals to the world's hungriest of hungry kids. Each meal costs only 24 cents and the vast majority of their operation is volunteer-based. About once a month, we don our hairnets and package bags of "Chicken, Veggie, Soy, and Rice!" A couple of weeks ago, a larger church in the area hosted a "mobile pack," which meant that the whole operation was out of their church's gym. It also meant the age restriction for packing was a little looser :) Isn't Charlie's new cousin Sophie ADORABLE?!?!!?)


We take our responsibilities very seriously





We build "creations"












We visit the Children's Museum to build even bigger "creations"













We high-five dragons







And we just generally love each other a lot.

Sorry for the photo-dump, but this very snowy day seemed to be a great time to share with you some of the more "normal" things we do! :)

(Oh, and incidentally, we also make computer mistakes ... if you read this blog through Google Reader, you saw that I accidentally posted something a few days ago about lies I struggle with believing ... it was mostly about believing that I am in control when I'm really not ... but anyway, if you saw that post and wondered why it's not here, I just couldn't make it sound "undepressing" enough to be accurate, so I went to "Save as Draft" but clicked "Publish Post" instead. Sorry. I don't regret the post, just couldn't make it sound the way I wanted it to, so I attempted to ditch it ... and failed ... :) Just in case you were wondering ... and I'm sure you weren't ... but in case you were ...)


:)


God bless!

Tuesday, March 15, 2011

Preschool

About a week ago I went to observe the program that Emma will be going to for her preschool years. I was super-nervous about her going to a class designated for "Severely Multiply Impaired." I was afraid that when I went to observe I would be confronted with deep denial in myself about Emma's level of disability.

I anticipated my thought process would look something like this:
Emma doesn't belong here! These kids can't even crawl or communicate! MY Emma is more advanced than this!

(yes ... that's a confession ... I know those are not great thoughts, but it was the gut reaction I was afraid I was going to have when faced with those who have been designated Emma's "peers.")

But after observing the class, it was much worse than I had feared.

Kids were walking.

Kids were talking (one word at a time ...).

Kids sang along with the Slippery Fish song (poorly, but they were at least trying!).

Kids pressed buttons on communication devices to ask for "My turn" or even ... get this .. "bathroom!"

Kids went and sat in chairs when told to.

Emma doesn't belong here! She can't do these things!! So what you're telling me is that MY EMMA isn't even advanced enough for the SEVERELY multiply impaired kids?!?!?!?!

So I cried. A lot.

I called the teacher that afternoon to confess that I obviously have misled them about Emma's abilities and apologize for wasting their time (ok, not really, but that's what I felt like). Her teacher was super compassionate and reassured me that these kids couldn't do these things when they first got there, either.

The program focuses on communication and motor skills, all built around repeated routines that help kids be able to anticipate what to do next and build repeated success.

Emma's goals include being able to follow directions and being able to communicate wants/needs in a way that even a stranger can understand. They use picture communication and GoTalk devices and do a lot of "My turn" type asking.

So today was Emma's first day.

I'm not gonna say it went great by any stretch. Emma didn't really want to stay, but she didn't cry. After I left and dropped off Charlie, I did cry a little, but only because I realized that I hadn't even taken a first day of school picture!

When I got back to the center, I had an appointment with the nurse to teach her how to put a MicKey button back in if it comes out and then when I got back from there Emma was in the gym, which was totally overwhelming to her, and then I had to teach the nurse how to feed Emma for snack time, and then it was story time.

I ducked into the observation room for story time. Emma enjoys sitting and reading books, but on her terms, so I knew that this would be a good indication of how they would deal with my little diva.

I feel good about the tough love they showed her. She wanted to be done, but they insisted that she stay in her chair. She cried, but they held her hand and helped her pet the dog on the page of her book. They snuggled her when it was done and she forgave them.

I really do feel like this is going to be a good place for Emma, with high expectations and achievable goals, lots of care, lots of experience, and lots of hands to help her.

After that it was time to go, so while the other kids went with their paras to the buses, the PT for the class came and wanted to talk to me about Emma's AFO's, so I was still in "taking care of business" mode when I went to get Charlie from preschool.

I'm not sure it's all really sunken in yet ... I think tonight I'm going to have a glass of wine, a long bubble bath and a good cry.

Maybe on Thursday I'll be in a good place to take some SECOND day of school pictures :)

Monday, March 14, 2011

Short updates

Emma had a rough night last night, but she's fine today. We are going into the doctor later, but if I had to guess, I would say that maybe she's allergic to sweet potatoes. REALLY??? Sweet potatoes??? We'll see

On a happy note, our friend N is home! Her family SO appreciates your prayers, recovery will be long, but it's going well.

And stay tuned to hear more about Emma's first day of preschool tomorrow!

Wednesday, March 9, 2011

I (heart) her

Oh, the stories I could tell you about this young lady!

I could tell you about how much she loves Emma, that she walks up and signs "I love you" to her when we see them at church because she understands that Emma doesn't talk yet in a way that other kids can't relate to.

I could tell you about how she woke up from another surgery a few months ago singing the same Phil 4:6-7 song that she sang over the phone with her friends 2 weeks ago.

I could tell you about how nervous she's been for this heart surgery, but that she's been clinging to Is 26:3, reading it out loud to anyone who will listen ... You will keep in perfect peace ... those who trust in You ...

How she told her mom as they were anticipating this surgery that she wishes Jesus were still around today physically "because if He were then I could just touch his cloak and my heart would be healed."

How she wore a shirt that says "My heart belongs to Jesus" to her pre-op appointment at the heart clinic and their nurse winked at her and said, "My heart belongs to Jesus, too!"

But here's the burden ...

THESE STORIES AREN'T FOR FREE

You can't hear the heartwarming sound of a child praying for peace about an upcoming surgery without her parents paying for it with many sleepless nights, wondering if the reason she asked yesterday what Heaven is like is because ...

You don't get to see the blessing of a church rallying to pray for a child's surgery and the beauty of the Body of Christ supporting them without the child actually having to have her chest opened.

You don't get to hear about her faith unless her reason for clinging to verses about peace is the fact that she knows that she's going to be hooked up to a lot of machines today and the tape is going to pull at her skin and hair.

You don't get to have the tears brought to your eyes as you praise God for her younger brother and sister as THEY pray with THEIR friends without the burden of knowing that they are having to worry beyond their tender years as well.

You don't get the blessing of the silver linings without the storm clouds

And last night, for this family, the skies were pretty cloudy.

Please pray? Our little friend N is pretty darn uncomfortable right now. She's recovering as well as can be expected, surgery went off without a hitch, but she's in a lot of pain. Please pray the doctors can manage her pain so she and her parents can get some sleep? Please pray for strength and peace for the whole family?

Dear Jesus ...

Saturday, March 5, 2011

Some very special people

No, not Emma and her friends.


When we had our first appointment with Emma's Genetics doctor, I had both kids with me and the doctor, reading my worries, said that Charlie will be awesome BECAUSE of Emma.

I'm so proud of the fact that this is true.

Charlie has been putting his own laundry away for over a year now. He vacuums the kitchen, put his own cream cheese on his bagel, slices his own banana bread, clears his own dishes, he dusts, and more ... I'm not sure that sort of independence would have been my first choice, but I'm proud of it now!

Charlie knows how to pray. And not just, "now I lay me down to sleep, let us thank him for our food" pray. He knows how to PRAY. He prays for surgeries and appointments and days when Mommy is sad. When it's been part of his childhood to hear that "Mommy's job right now is to figure out where this blood is coming from and your job right now is to pray for Emma" ... let's just say HE'S the one who reminds ME to pray for his friends when he knows they are having their tonsils out.

Charlie has NEVER said, "It's not fair."

He knows that I'm very proud of him when he reads the word "shark" and I'm very proud of Emma when she signs "more." Someday, I'll be very proud of him when he gets an A on his calculus test and I'll be very proud of her when she uses a fork and that disparity won't be a problem for him.

He makes quick and easy friends with the boy in the wheelchair in the waiting room at Emma's appointments.

He mentioned to me today that he likes Emma's pigtails. He said, "People always come up and say that she's so cute and they like her pigtails. I like my sister ... " No jealousy that she gets all the attention, no bitterness that she takes Mommy away from him sometimes. Just love.

And I think that all special kids have this impact on EVERYONE around them. A girl with Down Syndrome who we love at our church had heart surgery today. The family has been stuck at home for a few weeks now, trying not to allow any germs anywhere near their sweet girl. Our kids at church have been memorizing Scripture songs and two Wednesdays ago, during Wednesday night programming, the kids and our children's pastor made an impromptu phone call to the stuck-at-home family. Over a cell phone's speaker, the kids all worshipped together, singing Philippians 4:6-7

Do not be anxious about anything but in everything with prayer and petition with thanksgiving present your requests to God and the peace of God that transcends all understanding with guard your hearts and your minds in Christ Jesus.

Do you find that one of the amazing powers folks with special needs have is that they provide an amazing opportunity for those around them to be shaped into something better than they would be otherwise?

Charlie is only 4. I can't wait to watch and see what Emma is going to help him discover as he grows into the man God has made him to be.


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PS - we are LOVING this group! It's called Seeds family worship and they publish Bible verse memorization songs that you might actually WANT to listen to :) Here's the Philippians verse. Enjoy!

Friday, March 4, 2011

Wordless Wed ... oh, wait! It's FRIDAY???? :)

Time seems to be flying by at an alarming rate around here.

So here's what we've been up to lately.

Emma got a haircut :)


Charlie's in swimming lessons. He loves it!


And here are the pictures from the Marshmallow Incident recorded last week ... or was it two weeks ago? What day is it? What month is it? How old am I? :)




























Have a wonderful, blessed weekend!