Toby caught this fish all by himself today!!  

Lucky escape

I had quite the adventure today!  Driving home from work on the highway (think M4 if your English!) when I suddenly heard an odd sound like scraping and noticed the low pressure light indicating the rear passenger wheel.

Since I was in the fast lane (yes, going fast!) I pulled onto the hard shoulder next to me.  I got out and walked round only to see the tire dead flat.

Not as clear in this picture because the car was on a jack!

I didn't panic but I did freak out a little!  I only had 1/8 of a tank of fuel, 8% battery on my phone (despite it being plugged in all morning!) and I needed to pee!!

I called Scott of course, who told me to call our roadside assistance.  I knew that and already had my card out!  I just needed him to calm me down, which he does like a skilled lion tamer!!

I called, and after about 8 minutes of machine prompts increasingly pumped my blood pressure I got a person, in Texas who took at least five minutes to figure out where I was (um, next to the international airport!  How hard could that be?) before telling me I was not in her zone and transferring me (but not my details) to someone else.  After 20 minutes sitting next to whizzing traffic I got a text someone would be there in 38 minutes.  

I kept the car idling to Charge the phone, but didn't want to use the AC and waste power so I drove forward about 30' to under an overpass, in the shade.

I know I should know how to change a tire, but given the proximity to traffic and having paid for roadside assistance, I would not have done it!

I soon got a call from the repair guy asking me exactly where I was because he thought he could get there in 15 minutes, and he did!  Very friendly and professional, he put me at ease.

As he freed the spare from under the middle of the car, I took a look closer at the wheel: 

I soon was back on the road and carefully made my way to our mechanic who put on four new tires - coincidentally I was planning to get new ones this weekend!

I didn't get to run my errands, but I was safe and that's the main thing!

I did my friend Emily's hair today, for a wedding she's going to.  She has thick black hair, with a natural wave.

She seemed pretty happy I think!  

I love doing hair, and now I can't do Emma's, it's nice to do other people's!

New School Fears

Emma has been saying that she is a little bit nervous about starting 2nd grade.  It's a big step as the school district has one school for K-1 and then splits into two elementary schools for 2-5.  So although she'll know a lot of kids, it's a new building, principal and teachers.

I kept dismissing it, but the other day, when we were hanging out, relaxed, at the pool, I asked her what her fears were.  As she named them I asked her what she would do if that happens.  Then I helped her see the other things she can do in response or action.

The fears were:
1. there will be a mean kid. Interestingly she thought this would be more boys than girls.  I tend to think the opposite.

2. Someone would make fun of her syndrome - her words!  Since we sort of had an instance of this in first grade we revisited how that was handled.

3. She wouldn't like her teacher.  Here I explained that unfortunately that there's nothing she can do about that.  I said it was unlikely, and I feel sure her teacher will like her!  I told her that she needed to follow the rules, do her work and stay out of trouble, regardless of how she feels about her teacher, but I don't know that Emma's ever said she didn't like someone!

She didn't have much beyond that.

The summer is flying by, with only 6 weeks left, we've really not done anything major exciting.  I don't feel guilty - spending most afternoons at a great pool, mornings with their grandparents and cousins, my kids are living THE life!

That said, Scott's also been working way more than ever before.  He's responsible for the final stages of a 24 storey building that has to be finished by the end of August.  That means starting at 5am (leaving home at 4am) and working most Saturdays and Sunday's 6am-2pm (popping home for church!).  He's also been doing office work at home, so the kids have not had much Daddy time.

So this week we thought it would be fun to surprise them, and I'm thankful that they truly appreciate the simple things!

First we surprised them with dinner out at Chick Fil A (it's a fast food chain that sells only chicken, no burgers.  It's a nice place to go, food is great and it doesn't break the bank.). They enjoyed that and when they were done eating we surprised them again with tickets to go and see the Minion movie!

We love the new reclining seats at the movies!

The arm rests come up, so we could snuggle and watch the movie!

We won't make it on vacation this year, but we hope to take a few days off at the end of the summer and do some fun things as a family.  Whatever we do, both these kids have a long memory, so they wil remember the good times!

I Found this great aerial view of "our pool"!  You can't blame us for going there whenever we can - it's like being on vacation every day.  

Toby has been trying to teach Emma to whistle, by pursing her lips (which she's unable to do).  It's been making her feel bad and tonight she mentioned that she's also sad she can't snap her fingers!  I explained that was not because of her Moebius, so she asked what else she couldn't do because of Moebius.

I reminded her about the stuttering comedian on AGT, and said that she will one day be able to see the things she CAN do because of Moebius.  She already knows she can win staring contests!  I told her she'll probably not get wrinkles like me - which she thought was hilarious.  I also tried to explain what a "poker face" is, but that has limited application since we don't gamble!

Hopefully one day she will whistle - I know of a few other kids with Moebius who have managed it, but if not, I hope she can be comfortable with who she is, and how she is.

I know, it's been 12 days since I posted, and you have no idea if we're even still alive!  Rest assured, we are all well.

Scott is ludicrously busy at work.  They are finishing up a 25 storey building on the campus of Drexel University and it has to be ready before the end of August.  With that time crunch, Scott's company are all working every Saturday and Sunday until then.  He's been leaving the house at 4am some days, to catch up on paper work before the rest of the crew start at 7am, then finishing at 3:!5 with everyone else.

Most days we hit the pool in the afternoon, which gives him some relaxation.  The kids are still loving it, mainly because they know quite a few kids and are both swimming well - I need to get you a video of Toby.  Pops has really taught him well.

This past week the kids went to Vacation Bible School at our church.  It's 9:30am-12:30pm, Mon - Fri, and the kids have a great time learning new songs, dances, and importantly Bible points that will stick with them.  At church this morning we had a "recap" of the whole thing and the kids did a dance.

Toby isn't one to go for the limelight so I was really impressed by his participation at both services, in all the songs.  He's growing in self-confidence, which is fabulous.

New Do

On Saturday we took the plunge and Emma got her hair cut!  It was my idea because it was sooo long and not easy to deal with after swimming every day.  I changed my mind, but Emma was all in, and was most concerned with donating what was cut to help other kids get a wig!  She's so sweet.

I was happy to take her into the city to my trusted stylist and friend.  She got the royal treatment, and loved her salon experience!

She's thrilled with it and loves the freedom it gives her.

Family Reunion

On Sunday we had the Annual Family Reunion for the Center for Fetal Diagnosis and Treatment!  Hard to believe it was our 7th year, and there were few familiar faces, but we found the important ones...

This is Taryn, who was my favorite nurse in the NICU and helped me with the whole nursing/pumping thing.  I love seeing her every year!

This is the surgeon that closed Emma's belly up, and also put her g-tube in 3 months later.  It's the first time Emma would let me get her picture with him!  He's the nicest surgeon I've ever met (And I've met a few!!)  

Funtimes...

Every year they've wanted to do the rock wall and it was either too busy or they were too small!  So this time they did it.  And were both terrified!  This is as high as they got...

 

We had the family picture as always, but poor Scott had to work, so it was a partial family portrait!

 And here's the whole CFDT family in attendance!  See if you can spot Emma!

I got another email from Emma's writing teacher, and the coordinator for her therapy:

I hope that you and your family are having a wonderful summer!  Thank you so much for your kind words.  It means a great deal.  I consider myself extremely fortunate to have had the opportunity to work with Emma this year!  She is such a bright, curious little girl.  I know she will be very successful at the new school!  Please keep in touch.  I look forward to hearing how Emma is doing in second grade!   It will be nice to have her little brother here in September! :)

I'd say she is a chip off the old block, but ain't no block like that here!  She's in a league of her own!

Round 2

A few weeks ago I mentioned that Emma had been evaluated (round 1 of 3) for the giftedness program at school.  It's part of the special education program, making sure kids are getting the full level of education for them. 

As part of round 2 we had to complete a questionnaire, which I did, but had a hard time remembering specific accounts of things.  But, sent it back.

Yesterday I got a call from the school psychologist.  She explained to me that in round 1, Emma had needed a score of 5/6, but actually only achieved 4/6.  She had not qualified, but some people "higher up" decided that her results may have been skewed because of her existing diagnosis, and she was instructed to test her on round 2. 

On this round, which was one on one, Emma needed to hit 5 markers, and actually got 7!  In reading she was in the 98th percentile and for maths in the 99th percentile.  So, she qualifies to move on to round 3 which is an actual IQ test, and that will be done when she starts second grade.

It's funny because on one hand it feels almost like we should be willing her to do well, like it's an exam!  But in reality it's just a measure of where she is and what she needs. 

We haven't really told her anything about it, I'm sure she would feel the need to tell everyone and things like this aren't always celebrated by others!  In the meantime, I'll have to make sure she doesn't forget everything she learned in first grade over the summer!!

Then Jesus said to his disciples, “Whoever wants to be my disciple must deny themselves and take up their cross and follow me. (Matthew 16:24 NIV)

If* a Christian makes a wilful decision to surrender the authority of his life to God, a daily struggle ensues.  The old self, (often referred to as the flesh in scripture) will wrestle with the Holy Spirit, who has entered in by invitation and seeks to lead the person to make choices in accordance with God's will.

Each day, each choice becomes a fork in the road, a question of "my way, or God's way?"  It sounds simple, and it is.  But it is not easy.  

Some of the choices are so clear because they have been adopted as laws, both moral and societal, such as the choice to not take what does not belong to me, to not kill the person who bothers me, to not have a sexual relationship with someone who is not my spouse.

It is a struggle that has existed in us all since Eve was tempted to do it her way (eat, and know what God knows of good and evil) or do it God's way (and do anything she wanted EXCEPT eat from that tree).  Then, as now, the choice was presented by an enemy, a manipulator who sought to deceive Eve into thinking her way was better.

I don't know if you noticed the * by the word "if" above.  I said "if" because people can put their faith in Christ as their substitution on the day of judgement, but not actually follow him daily.  They continue to do things their way, and wonder why the peace, joy and freedom Christ promises when you follow him, eludes them.

For me, and many others denying myself seems to be failed attempts as much as successful execution of Gods will.  I struggle with self-control in my diet (gluttony), I struggle with not spending money I need to save (greed and materialism), I frequently lose patience and I do not always love others the way I should.  And so many other things.

But that is where the mystery and majesty of God's grace come in to play.  He knows I am not perfect, and in this life long process of transformation into the image of his Son, I never will be.  He sees my heart, he sees my desire, effort and resolve to please him - not to earn salvation, but out of love and gratitude.  I don't deserve his patience, his love or his mercy, but in grace, He gives me just that.

My point here is simply to explain (my thoughts on) the difference between being a Christian, who will always struggle against the flesh, and a sinner who has decided that God's way is not for them and they will not attempt to deny themselves.

Relationship with God is not developed by our good works or perfection, but through our surrender, and faith that He knows best, will give us the strength we need and we will be beside us in the battle.

This is what Jesus demonstrated when he came, he lived and he died according to God's will, not his own.

Again, the devil took him to a very high mountain and showed him all the kingdoms of the world and their splendor. “All this I will give you,” he said, “if you will bow down and worship me.” Jesus said to him, “Away from me, Satan! For it is written: ‘Worship the Lord your God, and serve him only.’ ” Then the devil left him, and angels came and attended him. (Matthew 4:8-11 NIV)

He took Peter and the two sons of Zebedee along with him, and he began to be sorrowful and troubled. Then he said to them, “My soul is overwhelmed with sorrow to the point of death. Stay here and keep watch with me.” Going a little farther, he fell with his face to the ground and prayed, “My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” (Matthew 26:37-39 NIV)

God does not spare those who are perfect, who are good, who are successful.  God saves those who are sold out, face down, desperately seeking his forgiveness and redemption.

We managed to get a few hours at the pool today before a big storm came in.

It's so cool to see the kids growing in ability and confidence, from the comfort of a sun lounger!!

After trying the diving board for the first time yesterday (to jump only, with special permission to wear goggles), she was in line for it most of the afternoon!

Pops has been teaching toby how to swim, but he is convinced he does not want to try the deep water test!!

We have three TVs at home: a small old one in Emma's room with a DVD player, the biggest one in the basement with the Wii and a DVD player, and one in the living room with cable.  Having only one TV you can watch live TV on, with 4 people, has some challenges, however it does also present some opportunities!

Take this morning for example - Emma was up early and was watching TV.  Toby got up, and after the show Emma had been watching was over declared it was his turn to choose a show.  (This is a rule for when they argue - they take turns picking the show/channel!)  However, Emma protested because she had only watched a half episode!

I was getting ready for work, and as usual was tuned out.  So when Toby brought me into it, calling up that "it's not fair" I shut the whole thing down and said "if you can't cooperate, turn it off."  Often they will immediately compromise (by they I mean Toby!), but this morning it may have been too early because they turned it off without protest - though Emma did say "See Toby!" 

Quiet ensued for several minutes, and Toby went to play in his room.  Next thing I hear was Emma, from the living room - "Okay Toby, you can have your turn." 

The one TV policy is good.  We always know what they are watching.  We can easily turn it off if they've had too much and it makes it easier to have family TV time - when Scott and I want to watch something and they are too lazy to do something else!!  We often watch American Ninja Warrior or America's Got Talent - maybe too much...  Last night I asked Emma if she wanted to sit with me on the sofa while we watched AGT and she responded with "That's a yes from me!"

Saying Good bye!

So I sent the team at Emma's school a thank you email to let them know how amazing our experience has been.  I got a couple of responses I thought I'd share.  If only I could guarantee they'll still be like this in her teenage years!!

From the Principal:

Your daughter is an angel and we were privileged to have both she and you in our SLC Family.  I’m thrilled that she enjoyed her learning experience at the SLC.  Please know that she brought happiness and inner light to her class, her teachers, and myself.  There was not a day that she did not go out of her way to say hello or try to make someone feel happy.  Her personality is perfect!  Now, and also as she grows, she has much to offer the world.  She has a wonderful family and a little brother to turn around and teach all that she knows (if he’ll let her!).  We will look forward to seeing him in kindergarten.

Guidance Counselor:

You are so welcome! Having Emma has been truly a joy and I look forward to getting to know Toby and having Emma visit!

Nurse:

It was a joy having Emma with us! She was always a bright spot in my day because she was always so happy!

Have a wonderful, safe, healthy summer. I am looking forward to seeing another Morton student here.

Emma drew each one of them, and her teacher, a picture and wrote a note on the back.  This was the one to her teacher:

  

Now the kids are both off school until September 8!  12 weeks of summer.  We are thankful that Scott's parents are able to watch them in the mornings, and then afternoons we will be off to the pool. 

One little fish

Several years ago I purchased a Jesus fish for my car. I so I wanted my identity to be linked with Jesus, that I wanted to put a fish on my car. I still do! But that fish remains in its packaging, never having seen the back of my car.  

It's not that I'm ashamed of the name of Jesus, far from it. In fact it's really the opposite.   I know I'm not the only Christian who doesn't have a fish on the car because their driving is fairly questionable some of the time! Hesitancy comes from not wanting to dishonor the name of Jesus by poor behavior, or driving.

So with my car, as in life in general there seems to be only two options. One is that you do not identify yourself with Christ, so that your bad behavior does not draw the charge that he is not real.  The alternative is to proclaim the name of Jesus, but pretend that you are totally perfect, so that you can lift up his name.

But since nobody is fooled by the pretense of perfection, it seems that both of these options draw criticism, draw condemnation, draw judgement. Both from the world, but also from within the church.

And yet I think that many of us find ourselves living one or both of these scenarios, depending on who we are with.

But Jesus didn't die so that we would continue to live in shame or that we would continue to pretend that we have it all together. Jesus didn't rise again so that we would continue to live in hiding.

 It is only in our brokenness that his mercy and healing is revealed. As the church we need to come out of hiding, and be able to share that we are broken, we are still very broken but we are with hope, we have a future and we have redemption.

Blissful Sunday afternoon!

I am truly blessed!!

Catch up

So... Emma went to visit her new school monday, and we got to meet her new principle (sp?) and guidance counselor at a parent meeting that night.  I'm still nervous about this new, less nurturing school, but it was nice to hear that 2 of the 7 teachers in Emma's grade were Scott's!  He seems to think that will be a good thing if she gets one!!

Emma is still doing great at gymnastics and is used to doing one flip on the bar each week, per my orders!  She really needs a boot up the bum until she realizes she can really do it!

This was a new move and I was so proud.  She always gives it her all and never gets frustrated or discouraged.  It's quite humbling.

Toby (and Scott) had their last t-ball game of the season on Friday.  This little group of small (literally), unique boys really bonded and wanted to finish strong.  Despite games where they looked like the team in a movie that eventually wins the lot, they had a blast and Coach Scott had a ton to do with that.

I overheard parents talking about him, glowingly, and they were asking him to come back next year, which he plans to do.  But Toby will also play in a couple of tournaments over the summer.

They also got Scott a gift card to our favorite restaurant!! 😊

On Saturday I had my last week of maintenance at Weight Watchers.  I joined on January 3, 2015.  I lost 23lbs by mid-April, which surpassed my goal.  Then I had to go 6 weeks of maintenance - trying to keep the weight the same, not being more than 2lb above or below goal weight after 6 weeks.

Somehow I did it - I say that because I ate whatever I wanted!  Often I want different things than I used to, but I still have a craving for good steaks and desserts!

So, I am now a Lifetime Member!

I only HAVE to weigh in once a month and stay below my goal weight, and I'll never have to pay again.  Isn't that such a great program?  They really want you to be supported for life!

I plan to continue weekly meetings as long as possible, lose about 10lbs more, as a buffer(!), and maybe become a leader as a little side gig!  I do love encouraging others to make these changes.  I feel amazing, and have already dropped 1-2 dress sizes!  Don't worry, there's still plenty protecting my bones!!

Less than two weeks until Emma finishes school for the summer and we take up daily residence at the pool!   You can't beat my schedule for work and pool time, and I don't take it for granted!!

No summer vacation plans as we save for a long overdue trip to England, which makes it even better that we can go to the pool with Scott's family and so many friends.

Good stuff happening here!!

Sight to behold

This is enough to make any wife smile from within!!

It's usually "my job", which makes this feel like a gift with a big red bow!!  You can keep your jewellery and flowers, I'll take a clean bathroom, kitchen and dining room any day!!