Arrived!

So, we have arrived in Long Island, NY, with time to spare.  That was mainly because we left home 6 hours before our appointment! Just as well since I made us miss a turn off the Verrazano bridge and we ended up driving around Brooklyn, but got a great view of Manhattan!

that's the new World Trade Center looming in the background.  Scott's company is building it and he was recently treated to a visit and got to go to the top, and sign his name in the cement at the very top!

And the iconic Brooklyn Bridge, with the Empire State Building hiding in the bottom right corner!

It never fails to make me smile that we live so close to such a unique place.  This city is truly a place all it's own, and even the outer parts like Brooklyn dwarf Philadelphia.  I guess I'll forever be a tourist!

Having been stuck in traffic for a few hours we stopped at the first place we found after getting off the expressway, you know...!  We decided a pizzeria would do,  and also provide lunch.  As we sat by the window of this little eaterie, Emma suddenly yells "look, a plane!  Look how close it is!"   Her excitement was cute, but we felt rather awkward as we both had flashbacks to 9-11 and thought New Yorkers might not care to hear that.

Now we are burning time waiting for our appointment!

Happy Father's Day to my Dad, Scott, Pops, Grandad, brother-in-laws, and all the other guys who care for, provide for and take responsibility for others!

What do you do when the kids are off school for over two months and the weather will be 80f+ every day?  Join the pool!!

Here's where we will spend our afternoons this summer!

With a really good size baby pool...

Since only people from our town can join the pool, the kids will get to know others that they go to school with, and hopefully I'll get to see some friends too!!

It may seem frivolous, until you consider that in the summer here, the only cool place is indoors - in the air conditioning.  At the pool both kids will get lots of exercise and because they are distracted, it will help me get their eating habits under control.

Schools out for the summer!

It's official - summer has begun, or at least for the kids!  Emma had her last day of Kindergarten today, and will be off until September (Toby has been off for a few weeks).  I will be changing my hours from June 23 to work 5 mornings every week. The plan is that I can go and pick the kids up and then go do something outside so everyone is getting exercise and vitamin D!  Somehow I'll try and fit in some educational stuff, and make sure Emma stays on point to start first grade.

In the fall I will continue my new schedule and be able to drop each of the kids off at school in the morning - which I'm so pleased about with Toby because I can meet the other moms and help him build friendships!  I'll also be home in time to pick up Emma, so she won't notice I'm working at all - how great is that?  The best of both worlds (chores will get done when they get done!).  Toby will go to Nanna's after his short school day and hang with his cousins. 

It's been such a blessing to be able to work part-time and I am certain that I work for the most understanding and flexible people ever!  It wouldn't be possible with out the help and care of Scott's parents, and we are so thankful for them giving the kids a fun, safe and educational place to be.  I think the kids and I are all glad we aren't together all day every day!

Getting Nerves!

(Did you get it?  "Getting nerves!" - nerves/anxious, and nerve/movement for Emma!  I thought it was very clever!!

So Monday is the day we head up to Long Island to meet Dr. S. about the temporalis muscle transfer procedure (feel free to google it for graphic pictures of the procedure!).  This is also known as the Labbe Technique, which first came to our attention last year when a little boy (also 6) in Norway had the procedure.  Since then I've been in contact with his mum about the results etc (the sheer beauty of social media is enabling relationships that otherwise would not happen!).

It seems that the results were not as pronounced as they had hoped, with only slight movement.  Unfortunately, the tissue around his mouth was much softer than they had thought and the muscle loosened.  The decision was taken to go back in and tighten the muscle, which was earlier in the week.  Unfortunately the muscle retracted, and hid, behind the cheekbones and they were unable to reconnect it.  Now all they are able to do is try the lengthier, two stage gracillis nerve transfer, and hope that works.

As you might imagine, this has me anxious in all kinds of ways!  My initial reaction is that we should wait until she is older and her face a little firmer.  The doctor said he hadn't done it on anyone younger than 8 before, but mainly due to the extensive exercises post-op.  Of course, we will ask him on Monday - better to wait than rush it and blow the whole thing, now we know it's not a guaranteed outcome.

But then, perhaps we don't wait, and opt for the nerve transfer, though that is done one side only per surgery (each being 6-8hrs long and months apart.), because that is better done on young children.

Either way, we are going to New York on Monday (did I mention the $400+ fee?  We might need another yard sale, lol!) and Emma is without doubt really excited about the whole thing.  I will need strong resolve not to rush into anything based on my hearts desire to give her what she wants.  Anything else, no problem.  A smile?  I want to get it for her NOW!!

"Which of you, if your son asks for bread, will give him a stone?  Or if he asks for a fish, will give him a snake?  If you, then, though you are evil, 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!
Matthew 7: 9-11

At the Moebius conference this year Emma plans to sing in the talent show again.  Here is a practice from back in April...

Now, I'm on the hunt to find her an Elsa costume for singing Let It Go!  

At times I worry I'm spoiling her, or creating a self-entitled monster.  But most of the time I think I'm just trying to let her flourish and embrace life, because she's 6 and it won't be long before she feels compelled to either suppress her personality to fit in with the crowd, or just wonder if she's good enough, just the way she is.

We experienced a bit of that on Sunday at a birthday party.  It wasn't the old-fashioned kind where the kids gather in a home and activities focus on being together.  It was at a big "fun place" with lots of different bouncy houses and slides etc.  Though it wasn't busy, and maybe because we got in a few minutes late, Emma had a hard time connecting with the other girls, all of whom are in her class at school.

It wasn't so much meanness (all girls can be a little thoughtless when it comes to not including everyone), but she was upset.  I reassured her a few times that they would play, and she needed to join in their game instead of trying to lead.  But by the end it seemed she was the odd guy out.  I hugged her through the tears and said "let's get out of here!"  

When we talked about meeting other kids at the conference in July she was concerned they might not want to play with her.  I don't think it will be a problem, and I know she will be the one to take them by the hand and say "come play with me" as I've seen her do before.  I'm also in touch with many other Moms on the Moebius Moms facebook group, so I won't be so shy!!

Fun in the sun!

How we handle a hot day with nowhere to go!!!



It's not lost on me how blessed we are to have the outdoor space and resources to give the kids fun memories like this, or how wonderful Scott is at providing our kids with a childhood full of crazy memories!!

Thursday...

Family trip to Home Depot - and the best shopping cart ever!

Then dinner at Emma's favorite - the Springfield Diner!

With an Elmo cupcake...

And chocolate fudge cake for dessert!

More and more we are trying to balance our lives so that we take these small opportunities to "treat" the kids, spend time together where chores are not calling our names and generally slow down for a bit.  All too soon they will be heading off to college (12 years as Emma lets me know!), and if the past 8 are anything to go by, that will not feel like very long at all!

Work Week

So, I'm in slow traffic on the way to work,. It's raining. But I'm
happy! I realize I haven't posted all week, and it's really a good
reason for that. Last Friday I deleted my Facebook app from my phone,
which has severely restricted my ability to post statuses, and
pictures on Facebook. It's also reduced the drive to take pictures. To
share the minutiae of my every day life! And that's great. Facebook
was taking over my time and attention.

What else? Well I changed my part-time hours this week, from three
full days to 5/2 days. This is in preparation for the fall so that I
will be able to pick Emma up from school every day. I wasn't sure how
it would go but, I have to say I really like it!

Firstly, I have to get up every morning around the same time anyway.
And it is always up early so there's no such thing as sleeping in on
my days off! Also it's so nice to leave work right around lunchtime,
get home have time to spend with the kids, get dinner ready and even
do chores or errands, or before Scott gets home.

It will be a mixture of schedules over the summer, as we have doctors
appointments, and things like that so rather than use vacation I'll
switch my schedule so that I'm still working the same number of hours
each week.

This week I also started working out again. It's been a couple of
months since I was committed to it. So I started getting up at 5:30am
again (alarm starts at 5, and I "snooze for a half hour!), then a half
hour work out. It leaves me an hour and a half to get the kids and I
ready. When I don't work out I typically get up an hour before I have
to leave and it's a stressful rush!

Clearly I'm a creature of habit, and having the same routine for all 5
weekdays gives me a sense of order, and peace!

What Saturdays were made for!

Emma and I went to H&M today, to take advantage of the $5 dresses they have!  I got her one last week, so she knew it would be good, and was excited.  She went in her own fitting room, with more items than I had in mine!  

I do miss the kids being little, and so cute, but there's a lot to be said for the age where I'm her "best friend" and she loves to be with me!

Bully Update:

At Field Day yesterday (pictures to come), one of the boys was on Emma's team.  He called another little boy "stinky", and he told me because there were not other teachers or mothers around.  I looked at the kid and said "Do you want to apologize?"  He did say sorry and looked back at me.  I said "it's not nice to call people names".  I said it very neutrally and didn't raise my voice (maybe an eyebrow!).  He looked like he'd never been told that before.  I did meet his mother and watched the dynamic there throughout the day.  I made some conclusions, maybe assumptions, but importantly it helped me realize something.

I realized we can not change other people, including kids.  While I will report bullying when necessary, I also need to make sure that my children know that name calling is not okay.  Often allowed when it's "in jest" or even between siblings, but the truth is as they age, it escalates and kids love to get laughs which reinforces it.  It's hard to draw a line for kids, especially if they hear adults doing the same thing. 

"Sticks and stones may break my bones, but names will never hurt me!"  LIE!!!   

We don't use the words stupid, weird, hate or other things that reference physical appearance or intellect.  I never called my kids bad - I will tell them they are behaving badly, or made bad choices, but I don't want to devalue their self-worth that I've spent so long building up.  They need to know at their core they are loved, valued and have purpose.

The things we say are taken literally by kids and you don't know what sticks with them, replaying in their head like a hurtful soundtrack.   I can clearly remember some of the hurtful things that were said to me as a kid, but I am also ashamed of all the times I've taken the low road of picking on someone else, which I did a lot at school, paying it forward in a negative way.

If nothing else, I want my kids to be able to look at a bully, or anybody else and say "I've never treated you that way, what makes you think it's okay to treat me that way?"  My mantra with the kids is "you are not responsible for anybody else, but you are responsible for your response."  It's a tough one to live up to, for anyone, but it helps me to try and remember that too!

Clearly they will face bullying throughout their life, who hasn't?!  But no matter what they face I hope they always feel that our home is a safe haven where they can be themselves, find peace, joy, love and hope.  And the same goes for anyone else who visits!

Outta nowhere.

This just happened (and I have no idea how to handle it):

I'm eating dinner with the two kids and Emma looks at me and says "[two boys at her table in school] call that my creepy face."

Wha? 

She goes on to say "it doesn't bother me."

I probe for more details (of course) and it seems that when she stares at them (which I'm not sure if she gets that she always is "staring" or if it's when she opens her eyes wide), they have said more than once it's a creepy face.

I am clearly turning into momma bear and Emma starts to cry.  She thinks I'm mad AT HER!  Doh!

And my response now makes her conscious that what the boys are saying is kind of mean.  Double doh!

We've been through the unkind things like "I hate you" but not actual physical comments.  Not. Ready. For. This.

Yesterday Emma borrowed some of Toby's clothes, and he called her "brother"!  It wasn't long before she was back in a dress though!

Such a big girl!!

Best day ever!

The kids are spontaneously chanting "best day ever!" because their new swingset is here!

We made sure they know the yard sale paid for it, but what a feeling to bring such joy to your kids!!

Sunday sun

We headed up to our friends new house about 45 minutes away, and overlooking a creek, for a Sunday barbecue...

The idea was to fish from the banks, but you know Scott!  In they went,

And found some crayfish

(That's a fake smile!!)

It was all I could do to stop Emma diving in like the other kids were doing!  But she was walking around!

Got this awesome shot...

Good times!

Weekend work

We got our shed years ago, and other than a bench and a few hanging nails, it was completely disorganized and a dumping ground.

Scott's domain, he's wanted to get it straight for a long time.  After getting the attic done, and then the basement, and after last weeks yard sale, the day on the calendar arrived - shed day!!

And we were prepared!  Scouring the internet for ideas on how to organize and utilize a shed (without breaking the bank).

Scott repurposed as much scrap wood as we had and then got some more to create a spacious and functional shed!

Check it out...

We moved the bench, added more shelves, the "attic" shelf, between stud storage for bats, and wire drawers for gardening and sports equipment ( so no mud or water collects!).

Then Scott built the rack for all the rakes and shovels

Now we're feeling accomplished and somewhat organized.  Just in time for the swingset to come on Monday.

I've realized that at times I get very impatient and frustrated that the house is not where I want it to be - perfect.  I'm working on letting that go, for two reasons: you can't enjoy what you have if you are always thinking about what you don't have; and just like laundry and mowing the lawn - as soon as you're done, more appears in it's place.  So, you'll never* actually achieve the "finished" place, so may as well focus in enjoying the process.

*"never" may not be true, if you are prepared to spend all your free time and money on your home.  I do not want to do that.  What's the point in having the most stellar home in town if you sacrifice the people and purpose you love to get it.

Contentment, and even happiness is a choice.  A choice to want what you have, instead of focusing on what you think is better.  I'll keep working on it.

This just happened...

Emma: I'm a little scared about the surgery to make my smile go up. (I told her about the appointment last night)

Me: what makes you scared?

Emma: I think it's going to hurt a lot.

Me: I expect it will hurt for a little bit, just like when you bashed your face last year. But it stopped hurting after a while.

It's okay if you don't want to get the surgery.  You are beautiful just as you are.  If you have it done, it will hurt for a little while but your smile will go up for a long time.

Emma: forever?

Me: yes.

Emma: I want to have it done.

Me: you will have to do exercises in the mirror four or five times a day.  Do you think you can do that?

Emma: yes.  I like looking in the mirror!

I'm sure this won't be the last time we talk about it, and I hope I'm giving a balanced view.  She's always had a high pain threshold, but I'd better tell her she'll be on soft food for a month!!

Thought process

I can not stop thinking about this surgery and whether we need to go deeper into the gracilis transfer, instead of the temporalis.

Can anyone tell me if a spontaneous smile is possible, or if they are different techniques for the same result.

This for me is the most difficult part of being a Moebius mom.  I'm not particularly smart, wise or qualified to make decisions on medical procedures that could affect my daughters social interactions her entire life.  The pressure of making the right decision is crazy.  I'd be less concerned about deciding for myself!!

My only hope is divine inspiration/intervention.  Seriously.

I try not to lecture other parents with healthy kids, and I hope they never have to make this kind of decision for their kids!!

Operation Smile

Last night the surgeon from New York called, after reviewing the video and photos we sent to him.  We talked for about a half hour and he patiently answered all of our questions (which we miraculously remembered without writing down) and explained both types of procedure - he has done both, and treated Moebius patients before.

This morning his assistant Jeannie called me to set up and appointment for us to take Emma to see him in person.  Long Island is about a three hour drive from here, and our appointment is at 2:45pm so we can head out mid-morning and hopefully be home by bed-time!

Jeannie and I talked about all the insurance stuff and we are going to work together to find out what is/not going to be covered, but she seems confident that most if not all of the procedure would be covered (after the first visit!).

It's so intense, thinking about going ahead with this.  There is no rush - the temporalis transfer is not age dependent, in fact the older patients may be better with the required post-op therapy.  But, potentially, if we went for it, the procedure could be done this summer.  It requires just an overnight stay, and a follow-up visit in a week or so.

I'm not sure if we need to pursue meeting with the other NY doctor (who's team was decidedly unhelpful).  Normally I like to have a couple of opinions, but we already saw our doctor in Philly.

So much to pray and think about!

First year over

Toby had a graduation ceremony at school Tuesday.  I haven't quite figured out how often we will have these things, there seems to be a lot - but I know Emma won't have one for a few years, so it will just be Toby again next year!

I didn't know how to dress him for such an auspicious occasion, having been told they would have caps!  So, I went with this

He is really shy so he wouldn't walk down the aisle by himself, he came down with his teacher!

Then kids had some songs to sing, which he was nervous about!

He wouldn't even get his diploma by himself!

Or let me take his picture walking down the aisle!

But once the service was over he was fine...

 After the ceremony we went for a treat lunch to Chick Fil A, extra special because Scott had come home early for the service so we all went together...

And then Scott took the kids fishing!

I'm not on for the copious number so parades and celebrations we have in the US.  It seems little more than a reason to make people buy stuff!  But this time I think it's good because someone a shy and nervous as Toby needs to know that it's great that he made it through his first school year.  One of his friends ended up dropping out at Christmas because he did not like it.

In September Toby will not be in the same class.  His school has three levels: 2 (half) day, for kids who are 3 by September, which is where he was this year, then 3 (half) day for kids who are 4 by September, which is where is class will move on to, and then 5 (half) day, for kids who are 5 by September.  Many of the kids in the 5 day could start kindergarten but they might have late summer birthdays or not be "ready" so they have this extra year of prep.  Toby won't be 5 until October but his teacher recommended him for the 5 day class because he is already doing what the older kids do and is handling school well.  It will be excellent prep for kindergarten in September 2015 because that is also 5 half days.

I'm a little concerned about how he'll adjust to a new class, but one of his friends from church is in that class so hopefully that will help.  

Toby had a busy afternoon, and apparently felt a nap at dinner time would help!

As young as he looks when he's sleeping, my baby is growing up all too fast!

Buy and sell

The older I get the more I'm willing to try new things (I think), and that includes having yard sales!  We did our first one about 18 months ago when it was cold and not the season for it.  We worked hard to price everything and I was schooled in just how ruthless yard sale shoppers can be!

This time our purpose was to raise money to buy a good swing set for the back yard - and they aren't cheap!  We dug out every little thing we could find that was taking up space in the attic, shed or closets.  I'm not sure why, but I am increasingly less sentimental about things just because I've had them for a while.  The kids even went through their toys and selected a lot of things they don't want anymore.

We sold their existing playset and houses, battery powered cars, and so much more.

Scott cleared out old tools and even finally sold the spare wheels from an old car!

We got rid of all the big ticket items, and donated the rest so it didn't come back in to clutter the house.  We raised a good amount of money, but not enough to buy a new swingset, which we learned would be well over a thousand dollars.  So the hunt began to find a used one, that was within our budget but not too beat up!

On Tuesday we found this...

Scott went to see it on Tuesday and there a some pieces that might need replacing, and we'll stain it but in all it will be less than we raised at the yard sake, which is a total win!  The current owner got it for his son when he was 5 and he is now 10 and doesn't use it.  I figure it will get a lot of use from our kids and then we can restore it and sell it on!

This weekend we are going to work on organizing the shed, and then we'll clear a space for the swingset, probably next to the shed here

It's exciting and the kids are going to love having it at home - no need to go to the playground, and hopefully will help them both get more exercise.

School work

I love reading what Emma does at school!!

Proud moment.

Emma's Sunday School teacher (and Emma's favorite human!) told me about a situation at church today.  They were playing a competitive team game, where captains picked the teams and the last one left would be the judge.  Immediately I thought "Emma must not have been picked" but she was.  The game was to suck a cotton ball on the end of a straw and carry it a distance.  Immediately Emma raised her hand and said "I can't do that - my top lip."

Her teacher said she was mortified that she hadn't considered Emma in this, but Emma was nonplussed and thrilled when told that she could be the judge! 

When it came to the return part of the game -blowing the cotton ball with a straw - Emma declared she could do that and proceeded to demonstrate! 

There is no way to escape these situations, but I am so thankful to have people who love Emma so much that they care, and that Emma is neither shy nor embarrassed to explain her issue. 

We can kill ourselves trying to teach our kids what's right, and their worth, but when you see the fruit, when you see them have inner strength, boy does it make it worth it!!

Even Moebius Syndrome can't hide this family resemblance!!

Welcome to Holland!

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." 

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. 

But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. 

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." 

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. 

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

Written by Emily Perl Kingsley 

Bonding time

On my days "off", Toby and I usually run errands after dropping Em at school.  Then, if there's time, we come home and chill for a bit.

I love spending time alone with Toby.  He's got a great sense of humor and enjoys even the simplest of things, like escalators and looking at the cats and goldfish at the pet supply store.

"Mom, why do you always call me "baby"?"

"Because you ARE my baby, and always will be!"

I love my boy!

Last night was one of those rushed evenings.  We all arrived home at 6, then it was time to figure out dinner and the kids wanted to play outside.

By the time we sat down to eat I was ready for the day to be over.  But as only kids can do, they broke my tension.

First, Toby, who had been hysterical because Scott sat next to Emma, starts saying "ah, ah" and made this face

Concerned we said "what?"  To which he replied "my mouth - it's big!!"  LOL!!

Then Scott told me about about something Emma said outside.  They were playing baseball and Emma asked if she could be the person who says "strike!"  Scott agreed and she moved behind home plate and said "yes!  I'm the vampire!"  Hahaha - she meant umpire!!

How I laughed!!

Then we went back outside so I could power wash the kids play houses before we sell them at our yard sale on Saturday.

Fish tales

On Sunday Scott took the kids fishing to finish off the day.  They go to a little creek that runs through the town.  Apparently they had some luck...

Scott said a couple of guys walked past them and Emma said " we only caught 2 fish!"  They replied "we caught 0 fish!"  Apparently the kids think hooking a fish is easy!  In this case Scott hooked them, but Emma brought one in.

Last weekend Scott took Toby camping and Toby caught one...

When you ask him about it though he just tells you his friend caught a bigger one.  Already competitive!  Scott said he's a natural at casting though.

Mother's Day

We headed to lunch with Scott's mom and family for a big Mother's Day lunch, after church.  It's nice to have everyone together, and these guys are the cutest...

We couldn't let Mother's Day pass without stopping in to see Mrs T, our beloved Italian mother!  She got a serenade of some Frozen classics from Emma, and a less-than-shy Toby!

And we ended up getting a cute "after" picture...

Life moves at a frenetic pace, and for moms it is revealed in the changes we see in our kids.  So fast they grow, mature and become self-sufficient.  I found myself already dreading the day Emma gets married and my baby will be gone.  

It seems like forever ago that I had my first Mother's Day!

And already I have two beautiful kids, growing away!

In that sense, motherhood is a form of self-torture!  We invest our whole hearts in to little people who use it to leave us, lol!  And yet we wouldn't forfeit the joy that those few short years bring, and the honor of helping them find their way in life.

The longer I hold this position, the more I feel Mothers Day is a time for me to feel humbled and proud to be trusted with the amazing kids I have.  For now, they let me know how much they love me on a daily basis, and I try so hard to show them the love that floods my heart for them (when I'm not being impatient or overwhelmed)!!

I love my Mother's Day things from Emma, lol!

Spring Sing

Today was Emma's "Spring Sing".  Since there's no graduation ceremony this year, this was the grand finale, so she was rockin her new dress and curly hair!

Working the camera!!

Watch Jaci, to Emma's right!


My favorite