Saturday, March 31, 2012

Work book

I started collecting every scrap piece of paper that Emma laid a pen on from the beginning.  I assume many other parents do that also.  

I kept every picture she "colored" at Sunday school and then started keeping all the work she brought home from preschool.  Every single thing a triumphant shout to those who lacked faith in the beginning.

However, I dislike clutter!  As the cupboard began to fill up with pieces of paper with one or two lines of crayon I didn't know what to do.  Then an idea came to mind, to put it all in a binder for Emma.

Not just a keepsake, but a practical place where she can review her work and enjoy looking at her achievements.  She really liked it...

At what point though, do you say it's okay to "lose" some of the things that come home?!!

Friday, March 30, 2012

Kids today

One day I came home from work and Scott had the kids outside.  He bought Toby a f-150 power wheels for Christmas, but Toby is too scared to get in it when it moves.  Emma on the other hand seemed to take to it like a duck to water...



Scott even had her delivering stuff...


Emma's pink Corvette is no running, but it's so much heavier, it's not as easy to manouevre.  Toby will get in the 'vette, but not if it's going to move!

He still prefers the more traditional form of transportation - hand-drawn carriage!


Emma has to park the car too!


The cool things kids get these days!!

Saturday, March 24, 2012

At lunch today Emma was determined to use a straw like everyone else.  At first I tried to dissuade her, not wanting her to get frustrated (as I imagined she would).

When I backed down and gave her the freedom to do so, she started out blowing bubbles in her water and then told me she drank some.  With a black straw, I had no way to tell if she was telling the truth.


When I gave her my glass of soda to try it out and sure enough she was clearly getting the liquid up.  I was so excited for her, she has often wanted to join in with the straws Toby uses. 

If you want to know why it's so hard, try sucking through a straw using your tongue and top teeth - no lips!

So exciting!!

Friday, March 23, 2012

Zoo-errific

It is 75f today and is as nice as a day in June or July, but less humid!  Thankfully we were in a position to take advantage of this incredible weather before it turns back to "spring".  Scott is laid off right now, for a little while (we hope!) and I was off today, so we decided to take the kids, Nanna and Pops to the zoo before out membership expires.

Unfortunately both kids had sleep issues last night, so our visit only lasted about two hours, but that was more than enough for some fun, and before the heat got too bad.  Check it out...









This was the most active polar bear any of us had ever seen, playing around with his "floaty"!


Giraffe's seem to be Emma's favorite, except the pony rides which weren't open :(


An uncanny resemblance don't you think? (To Scott!!!)


I guess the fun was just too much for some people!!

Thursday, March 22, 2012

Picture time

Meet Molly, our neighbors new Bishon puppy!  Nothing quite like a fuzzy little puppy to make you smile.

The kids trying on their new "Woody" pajamas (thanks to a generous hand-me-down!)...


Emma is quite the little model, strutting around the place!!


And check out baby Sophia, these two will be quite formidable in the years to come!

Monday, March 19, 2012

How do you eat yours?

My boss was in the UK last week and after much un-subtle hinting, brought me a favorite of mine that I haven't had in a long-time...

Easter in the UK differs from the US in one major way - while Easter here is accessorized with candy stuffed into plastic eggs and then hidden for a "hunt", in the UK Easter eggs are large (albeit thin and hollow!) chocolate eggs with candy or chocolate on the inside.

A small, delicious favorite of mine is the Cadbury's Creme Egg, which you can buy here, however they are actually Hershey's chocolate (as are all Cadbury products made in the US!).

So it was nice to enjoy a 'real' one!

How do I eat mine?  Slowly , by myself - I don't share chocolate!  (But I might let Scott have one since I got 4!!)

I'm on a chocolate high right now, since my mum sent me a couple big bars last week.  Perfectly timed, at the end of a long week and a frustrating day!

Ah, the little pleasures in life!!

Sunday, March 18, 2012

Humble Yourself to End the Argument

 by Rick Warren

“What causes fights and quarrels among you? Don’t they come from your desires that battle within you?” (James 4:1 NIV)

As I talk with couples, one of the most common complaints I hear from people is, “We just can't seem to get along. We argue so much. We love each other, so why is it we have major blowups over such minor issues?” I talk with parents who say, “With my kids there is constant tension. I don’t understand why we’re always in an argumentative mode.”

James doesn’t beat around the bush. Long before modern psychology came along, he had some profound insights on the cause of conflict. James 4:1 says, “What causes fights and quarrels among you? Don’t they come from your desires that battle within you?” James says that the cause of arguments is conflicting desires. When my wants conflict with your wants, the sparks are going to fly.

The Bible makes very clear that there are three basic desires we have that cause conflict: possessions, pleasure, and pride. These desires are legitimate and God-given unless they’re out of control. When you put them above other people and they become the most important things in your life, they will cause conflict.

So what is the cure for arguments? It’s one of the hardest lessons to learn: humility.

Grace is God’s power to change. What would you like to change about yourself? Whatever it is, you need grace to do it. What do you want to change about your relationships, your marriage, or your family? Whatever you would like to change, you can’t do it on your own. You need grace, and there is only one way to get it: You humble yourself. God doesn’t give grace to people who are full of pride and think, “I can do it on my own.” He gives it when we come and say, “God, I need your help.”

That's where you get the power to make the changes you want to see. 

Talk About It
  • Think about the last argument you had. Can you identify which of the three desires was the cause?
  • What one thing do you most want to change about yourself or your relationships? Do you believe that God’s grace can help you accomplish it?
  • How will your conversations and actions change today if you take a humble approach?

Thursday, March 15, 2012

Risky Business

Last night, as I sat down to read my Bible (it's been over a month now - every day!!), I started with Our Daily Bread, and this is what it said... 

John 14: 1-6
Jesus Comforts His Disciples  
“Do not let your hearts be troubled. You believe in God; believe also in me.  My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going.” 

Jesus the Way to the Father 
Thomas said to him, “Lord, we don’t know where you are going, so how can we know the way?” Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me.  

Life is a risky enterprise. Sometimes we fly high, enjoying great success. But then suddenly we fall into deep disappointments and the haunting reality of failure, leaving our hearts wondering if there is anything worth looking forward to. 

At a funeral recently, the pastor told the story about a trapeze artist. The performer admitted that although he is seen as the star of the show, the real star is the catcher—the teammate who hangs from another trapeze bar to grab him and guarantee a safe landing. The key, he explained, is trust. With outstretched arms, the flyer must trust that the catcher is ready and able to grab him. Dying is like trusting in God as the catcher. After we have flown through life, we can look forward to God reaching out to catch His followers and to pull us safely to Himself forever. I like that thought. 

This reminds me of Jesus’ comforting words to His disciples: “Let not your heart be troubled . . . . I go to prepare a place for you. And . . . I will come again and receive you to Myself; that where I am, there you may be also” (John 14:1-3). 

Life is indeed a risky business, but be encouraged! If you have put your faith in Jesus Christ, the Catcher is waiting at the end to take you safely home. 

Home from the earthly journey, 
Safe for eternity; 
All that the Savior promised— 
That is what heaven will be. 
—Anon.

Wednesday, March 14, 2012

Big Smile

Last night I was goofing around with the kids and my phone.  I decided to take a picture of me and Emma, which is easy because the phone I have has a camera on both sides so you can see the picture of yourself.  (Handy for self-portraits and in the absence of a mirror!)

In the first instance I said to Emma "big smile", which I always say, and she gave me one of her big beautiful smiles...

You're quite right, I look terrible, so I tried to take another one, and in the meantime Emma did this...

She loves to pull silly faces, but I'm pretty sure that she is not doing that here.  I think she is trying to make her smile go up instead of down.  Remember the chat we had a while back?  Well, given the amount of time she looks in the mirror and that normally she doesn't see the picture as we take it, I think that explains the extra effort to "smile".

Toby, not one to miss out on the action, joined us and Emma worked her smile.
Quite frankly it breaks my heart that she feels compelled to do this (even though it's understandable).  I want her to have such a sense of self-confidence in who God made her to be and how special she is, as she is, that she is comfortable to be herself.

Maybe I'm being selfish, because I don't want this feeling of utter helplessness that I get when I think my child is in pain (emotional or physical) and I can't change things.  I need to refocus on what I can do...

With incredible timing, this morning I read the following devotional (actually from yesterday!) and this is why I will do everything in my power to ensure that my children (and the rest of us!) get the message that God made us to be loved by him and without being open to receive that love, we will be a slave to our fear of rejection and the unrealistic expectations of others and yourself:
Let God's Love Save You from Fear 
by Rick Warren 

“Save me from the insults I fear ... I want to obey Your commands ... Show me how much you love me, Lord, and save me according to your promise. Then I can answer those who insult me.” 
(Psalm 119:39-42 GNT) 

The fear of rejection comes from all directions: your marriage, your family, your parents, at school, at work, from former friends, from disappointments, from criticisms, from a look. Have you ever seen a look kill somebody? Have you ever seen a parent manipulate a kid with an eyebrow? 

That’s the fear of rejection! And it can hinder your life in many ways.

The fear of rejection prevents us from giving and receiving love. Past hurts prevent future relationships. A guy says, “I got burned on a hot stove. I’ll never touch it again!” People say that about relationships: “I got burned in a marriage. I’ll never get married again!” The problem is, people are not stoves. They change. 

Your fear of rejection is based and rooted in two things. One is the idea that we all need to be loved. That's a fact. We do. We all desperately need massive doses of love in our lives to be healthy individuals. 

God says, “I want to love you.” God is love. You need to be loved. That is a deep profound need that you have. But what causes the fear of rejection is the false idea that we think that other people ought to be able to fully meet that need in our lives. When you expect somebody else to meet all your need for love, you're asking for trouble. You're setting yourself up for hurt. You're setting yourself up for rejection. 

You have to put God in first place, because he's the only one who can ultimately meet all your needs. Does God ever use other people? Sure. Does God ever love us through other people? Of course. Does God want us to love others? Yes. Does he want to use us as channels of love? Absolutely. But, you will never have all your needs met by any person or group of people. God never meant it to be that way. They just don't have enough love. Human love is limited. God's love is unlimited, unconditional. No matter how deep your need is, he can fill it. And he never runs dry. 

On the flipside, it is when we allow ourselves to receive God's love, we can be freed from these things that bind us...
There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love. 
1 John 4:18

The closer we get to knowing who God is and how much he loves us, the less we have to fear and the less we will need to wish we are something we are not.



Monday, March 12, 2012

Classic Kids

Our kids love to sing and dance as you can see here...



(While the thumb move was prompted, it was merely a request for what she had been doing before the video - all her own work!!)




Winner

On Saturday both kids participated at the Pinewood Derby at church.  (entries are cars carved out of a standard piece of pine wood, and adhering to a standard set of rules and regulations, then raced on a 50ft track).

Both Emma and Toby were in the "pre-school" category of 3-5 yr olds (I snuck Toby in!!)...
 

Yes, I helped Emma a little with decorating her car!

But Toby's was the one that got a trophy - 2nd prize in the category!

He really didn't care much about the trophy...

...but hasn't put the car down since!


Friday, March 9, 2012

My parents gave Toby this truck when he was a baby (before they had another grandson!) and I decided to give it to him today.  (He'll enjoy it more than looking at it on a shelf in years to come.)

He hasn't put it down and likes to talk about it a lot.

As you know, I've worried about his speech over the past year, and while he is doing great, I still fret.  Now it looks like we may need to get some help -fast.

Confused?  Let me put it simply, a lorry in the UK is called a truck here, in the US.  And Toby seems to replace the 't' with an 'f'...

Yeah, now you're getting it!!

Wednesday, March 7, 2012

American Women Crushed for Time: Have Themselves to Blame? (Study)

"Laundry will wait very patiently," wrote novelist Nora Roberts in What I Know Now About Success: Letters to my Younger Self. It's a lesson that the majority of American women have yet to learn. 

VIDEO: Stress Can Damage Women's Health
 
According to a new survey of more than 3,000 women conducted by Real Simple magazine and the Families and Work Institute (FWI), at least 50% of women say they don't have enough free time and more than 60% feel guilty spending what little time they do have on themselves. Surprisingly, 68% claim that work doesn't interfere with their personal lives. The full results are published in the April 2012 issue of the magazine.

Martha A., a former television producer who is now a freelance writer and stay-at-home mom, puts it this way, "When I had an office job, I felt my free time had to be spent on my kids, husband, and the house. Now that I'm at home, I feel guilty because of the nagging sense I don't deserve spending time on myself." Meanwhile, according to an executive summary of the survey, women see their lack of free time as the "main obstacle to achieving happiness."

At a panel discussion on the study, Ellen Galinsky, president of the FWI, said "Its like the new clean plate club." In addition to working and taking care of the kids, women feel they can't relax until all the household chores are complete. While the average husband's to do list encompasses two main jobs: repairs and yard work, the average wife's list contains at least eleven items from cooking, to cleaning, to managing household finances. "Your husband isn't going to say, 'You look really busy, you should have some free time,'" adds Galinsky.

Even though more men than ever are willing to participate in childcare and housework, women are loathe to delegate. Forty-five percent of women who say their partners have equally high standards refuse to cede control of tasks such as organizing and de-cluttering. "I love delegating," laughs Dida F., an accountant, "The question is will they actually do it? At the end of the day, I end up with doing the work."

Panel member Ruth Davis Konigsberg, editor of TIME Ideas, feels that women cling to their sense of authority in the domestic sphere and also acknowledges that men are great at "learned helplessness." Her solution? She advises women to walk away from chores they don't want to do. "It might not get done the way you want it to," she warns, "so, don't get upset about it." Panelist Amy Chua, author of Battle Hymn of the Tiger Mother, says she knows what she's good at and has figured out that "she's bad at a lot of things," including cooking and "anything to do with aesthetics." This allows her to let go of a number of household tasks. "It's liberating to realize what you can't do."

Chua adds that she "outsources chores right up to her income level." However, one of the survey's most surprising findings is that nearly 50% of women wouldn't hire household help if they could afford it and nearly 75% wouldn't hire additional childcare. While many working women feel emotionally tortured about not spending enough time with their children, research shows that even though women's labor force rates have gone up dramatically the last fifty years, women today actually spend on average four hours more a week on child care then they did in 1965. Emily B., mother of six-year-old twins and a university professor reassures others moms, "My children go to an after school program and I would be a very unhappy person, and thus an inferior mother, if they didn't."

So, how did women get themselves into this bind? One issue is that women fill so many different roles, they can always find an example of someone succeeding in ways that they aren't. Stay-at-home moms may feel insecure because they don't hold down paid jobs, and busy working moms cringe when another mother supplies homemade cupcakes for a kid's school birthday. Panelist Claire Shipman, ABC news correspondent, says it also goes back to the way girls are brought up. "Girls are raised to be perfect," she says. "Women are capable of being right most of the time, but at what cost?" Shipman advises women to focus on being "good enough." When you make the inevitable mistake? "Don't dwell, it's a waste of time. Move on."

The executive summary recommends that women get comfortable with delegating and actively scheduling in free time. And leisure time doesn't mean a multitasking mess of watching TV, checking emails, and folding laundry simultaneously. Konigsberg describes this as "contaminated free time" which does little to lower unhealthy stress levels and restore one's equilibrium. Merele B., a real estate broker, advises women to schedule in "me-time" on the family calendar. "I write down everything I want to do for myself just like the children's appointments and events. From exercise to manicures, nothing stands in the way, unless it's a serious emergency."

Galinsky recommends shifting one's mindset. "Many women see life as a marathon, but a better model is weight lifting." After working hard you need time to rest and recover. Real Simple reports that by maintaining the current paradigm, "Women are losing the opportunity to re-energize and bring real benefit to their lives."

IF YOU DIDN'T CLICK ON THE VIDEO LINK, DO IT NOW!

THE VIDEO

Monday, March 5, 2012

Picture Post

Last month went by so fast and I have probably forgotten all of the things I had wanted to tell you!  I'll try harder this month!  That said, here are some pictures from last month, snapshots into my beautifully crazy life with Emma and Toby...

A trip to the park with Joey, Kaylee, Lainey, Toby, Paige and Emma. Lainey and Paige are Scott's cousins daughters, who just moved back to our area and it's been fun to see the kids make friends.  Lainey and Emma are 8 months apart and Toby and Paige are pretty close too - but as you can see, they don't pair off by age!

Emma, after school (and some time playing in the dirt) had a tell-tale trail of mud on her face!

Scott's rennovating a basement in his free-time right now, so on one of my less energized nights I took the kids out for dinner...


They have been getting along so well lately (most of the time!), and I love seeing them play - even when it gets loud.  She's not strangling him - she'd trying to pull him in for a hug for the picture!

 Since baby Sophia came along, Emma is much more interested in baby dolls (or "beebies" as Toby says it!).  Here "Sophia" was taking a bath...

"Mommy" Emma loves her baby.  Oh yes, she's wearing a bathing suit, in February.  She took her nap wearing it too!  (I'm learning to choose my battles!)

Here Toby and Kaylee give some "cheese" to the camera at a birthday party!

Last Friday I [bravely] took the kids back to the soft playground as a treat for being so good when mommy has to go to work!  There were about 5 other kids total and my guys had a blast!

 I've noticed something start to happen with Emma.  She loves to say "hello" to people, especially other kids, and moms, at the playground.  Usually they ask her her name and she tells them.

However, due to the paralysis of her top lip, she can't really say "m", and people hear "Enna" and translate it to "Anna".  She has come to me more than once and said "she thinks my name is Anna."  (We won't go into our last name, which also starts with an m sound!)

I thought a good solution would be for her to spell it - the m sound is a little clearer when isolated.

So the last time we were at the playground she had said hi to someone and before the even asked her name she ran over to me and said "Mom, you tell her my name and I will spell it."   This is a clear example of how Emma does not seem to get upset or frustrated by things, rather seeking assistance!

Of course, my heart broke, but rather than try out her new strategy, I just said "Em, she didn't ask your name, she just said "Hi"!"  I don't know if that was the right thing to do - it was the truth, the mom had carried on following her own kid!  Trouble is, I'm not sure anyone can tell me the right way to handle this kind of thing.

It really stinks that my baby can't say her own name properly - but I won't let her know that!  It's just one of those obstacles we will overcome - she can always switch to "Hope" if she wants.

Since it was a special day, we hit Chick Fil A for lunch (special in that there was a 'y' in the day!!)

This past weekend Scott and I attended a conference called "Love & Respect".  I can't wait to share some of the details with you later this week!!

Thursday, March 1, 2012

Tuesday, February 28, 2012

Moving on

I have a 3" ringbinder that contains all of the visit summary's from Emma's specialist appointments, and the session reports from evey single therapy session she had until she was 3.  I figure someday she might want to see just how far she's come.

Earlier today I was putting away some of these reports and one was her discharge summary from the NICU, on February 27, 2008.  It was not so much of a surprise that it was four years ago - it seems like that was another lifetime.  

What really surprised me was that I had totally forgotten the anniversary yesterday.  In the past few years I've heralded the day as one of our triumphs, finally bringing Emma home.

I think it's even more of a testimony that Emma has come so very far that the her medical history is kind of the last thing on my mind!

Since she had her g-tube removed, not once has she complained of bellyache.  In fact yesterday she let out a loud burp in the car.  I laughed and said "got some gas have you?"  She responded laughing at me with "You can't vent me, I don't have a tube!" 

The only regular "intervention" that she gets is physical therapy once a week, and Pops takes her to that when I'm working.  The dentist, opthamologist and even ENT are standard for many kids.  The cranial-facial team don't want to see her again until May 2013!

Life is so very different now than it was even a year ago and Emma herself is so confident and couldn't be sweeter. 

What a wonderful milestone to reach, four years and so very different!

World Rare Disease Day

The Moebius Syndrome Foundation is proud to participate in Rare Disease Day on February 29.  As one of the 7,000 rare disorders which affects less than 6,000 people worldwide, our members are pleased to join with NORD and other foundations and rare disorder support organizations to help educate the public about the challenges of living with a rare disorder.  Together we are strong!

More information on on Rare Disease Day activities in the US:
Information on international Rare Disease activities: 

Monday, February 27, 2012

Sky-diving

It was a pretty low-key weekend. Ballet for Emma on Saturday morning,
while Toby and Scott hung out at home. Then Scott went to work until
dinner time, when I went to church.

Sunday was relaxed too, I went to church at 8:15 am because I was
serving, and Scott brought the kids in around 9:30am. After church
the plan was lunch, then nap, then off to a friends birthday party.

The party had been a topic of laughter as it was the same house where
a few weeks ago Toby split his head open. We joked about him wearing
a helmet etc, not really expecting anything to happen again.

So when I brought the kids home after church (Scott stayed behind to
finish "ushering") it was the same process as any other day. Get them
out of the van, coral them up the steps and in the back door.

As he has many times before, Toby climbed up on to the iron bars that
act as a railing around the top of the steps. He does it so often I
guess I'd given up saying "be careful, you might fall."

And if I was a better/more vigilant/consistent/ (insert your choice of
word here) parent I would have made him get down and enter the house
before me. Well, I didn't. So one minute I can see him from the
corner of my eye where I stood in the kitchen, the next second he's
not there.

It took me a second or two to realize that he hadn't come inside
before I ran out the door (in my socks!) and around to the far side of
the steps where Toby was picking himself up off the dirt! I was
thankful he did that since I would not have known whether to move him
or not - seeing as he just fell head first (presumably, since his head
weighs a good 20lbs) at least 5 feet.

I brought him inside (where Emma was watching curiously from a safe
distance) and sat him on the counter to try and get a look at his
face. Sure enough it seemed as though his gums were bleeding a little
but after some water they were fine. No signs of any cuts, bruises or
trauma - he was ready for action again right away.

I had been warned about the block that my little chip came off
(Scott!), and how he was a daredevil as a kid and I don't think was
ever seriously hurt. So between us we have a dramatic talker and an
angel-faced dare-devil!! Our parents will be laughing for years to
come at the poetic justice of it all!

Thursday, February 23, 2012

Let's Bowl

In recent summers, bowling has become a favorite past time of mine, and the kids.  It's free all summer for kids, and is accessible for all kinds of strength levels.

We've been taking them quite regularly lately because it's quick (5 minutes from home, and a game takes about 45minutes!), and we can interact with them during our time.  We went a few days ago, when Scott was feeling better, and here are some pictures...(I can't believe how cute my kids are, in my opinion, so I'm always taking pictures!!)
 
Check out Toby's bowling shoes - his first time, now his feet are big!! 


 Emma tried to tap dance in hers!


 Scott and I played too, for once, on the lane next to them...

And I won!!!(I know, he was still sick!!)