Lack of faith

I'm starting to think that we give 'faith' too much credit.  We often say things like "my faith got me through this" or "without my faith I am nowhere".

The thing is that faith, alone, is just positive thinking.  You can put your faith in a banana for financial prosperity, you can put your faith in a "wishing boot" (if you saw SNL last night!), you can even put your faith in words on a page, but that alone does not do anything.

Faith needs to be put in a place that has the power to deliver on what you are believing for.

My faith is empty without Jesus Christ.  It is Jesus Christ who has brought me through deep valleys. It is Jesus Christ who has lifted me up to places of great joy, and it is Jesus Christ who gives me peace in troubled times.  It is Jesus Christ who has forgiven my sins and will vouch for me in front of the Father on judgement day.

When I am without faith, when I fall, fail and forget, he is FAITHFUL TO ME.  Jesus does not turn his back on me when I go my own way or make a bad decision - when my faith is too weak to trust that God will provide in his way, in his time.  Jesus stays with me, like a good friend, a loving parent, like a patient husband who loves unconditionally.  

There may be times that, in my humanity I am unable to see the big picture, the light at the end of the tunnel.  I fear, I doubt, I worry.  But when my faith is weak, he is still God.  He continues to love me, lead me and forgive me.

My faith is the conduit through which God's power flows into me.  When I have little faith, I struggle more.  When I have my eyes fixed on Jesus, on his purpose for my life, and the lives of those I love, when I remember that God is GOOD, God is merciful and above all, God is in control, I am filled with awe, and peace and trust.

Like a child who can be soothed with the words "It's ok, I'm here" from their mommy or daddy.  So too does my faith allow me to grasp the power of the presence of my Heavenly Father.

Faith is important, but without the source of power behind it, it is nothing more than positive thinking.

Feel the love

JHere we are, the big day and we were so touched by the response we got from our friends.

Here are the pictures that were shared in honor of emma on Moebius Syndrome awareness day...

A friend from church totally surprised us first thing with this picture of her whole office in purple!  She had shared Emma's story with them and they all wanted to join in.  So touching.

Our old next-door neighbor (we moved when I was 11!) who recently found me on Facebook was all over the cause!

Ex-therapist and good friend, Melissa joined the campaign

From our Italian family, Gina and Hailey!

Emma's friends from church

One of Scott's high school friends and her little boy (have never actually met Emma!)

Kali, once one of our youth group and now a good friend

Emma's school friends and their family answered "emma is special because..."

One of Emma's Sunday school teachers

Abby, daughter of our good friends, and lifelong friend of Emma's, who declared she had know idea emma had any syndrome!  Which goes to show that once you get beyond the initial meeting you just don't notice anymore - they were under 12 months old when they met!

Our youngest supporter, 6 week old Vanessa!  Baby sister of one of Toby's friends

Davina, my friend from church and only Brit I know here!  She makes me want my accent back when we talk all English!

Emma's friends from church (and sons of her favourite Sunday school teacher!

A friend of mine

A classmate of Emma's - all the purple he has!  This was by far the biggest surprise for her.  She seemed a mix of flattered, surprised and embarrassed that he "knows she has Moebius!"

Lexi, another youth group alumni!

My good friend Jess

And Uncle Sean!

Without a doubt emma was feeling the love and kept asking if anyone else was wearing purple!  She seems to understand what's going on.  She didn't want to do anything at school, she was too nervous about maybe talking to the class about it, which is fine.  She can always do it at the new school in September.

Moebius Syndrome Awareness Day

We are wearing purple today, as we want to raise awareness for Moebius Syndrome.

Our daughter, Emma Hope, was born with this incredibly rare syndrome and we want everyone to understand it so that she does not have to deal with so many stares and hurtful comments.

Moebius Syndrome is characterized by facial paralysis, preventing Emma from frowning, winking, blinking and even smiling.  Many people with Moebius also have limb issues, and also swallowing difficulties.

Emma is incredibly smart, friendly and kind.  She loves people and tries to make friends wherever she goes.  Many children, and adults, do not know why she looks a little "different" and may be hesitant to engage with her.

It is our hope that Moebius Syndrome Awareness Day will help people understand that some people can be smiling on the inside, and it's important to look beyond face value.  Everyone deserves to be loved, respected and treated with kindness, no matter what they look like.  You never know, they may just be the nicest person you ever met.

Tonight I put a post on the parent Facebook group for Emma's school, like last year.  It went something like this...

This is Emma Hope.  Emma is in first grade and would like me to tell you about Moebius Syndrome, the very rare condition she was born with, as this Saturday is Moebius Syndrome Awareness Day.

Moebius Syndrome primarily affects the nerve function in the face.  This means that Emma is unable to make facial expressions with the upper portion of her face, like frowning, smiling or winking.  While her jaw and lower lip do move, she is unable to close her mouth when eating, or make true "m", "b" or "p" sounds.  Emma also has no lateral eye movement (left to right) and does not blink, so it can appear as though she is staring, which we are taught is "rude", but she can not help.

Emma says that people often think she is crying when she is laughing because "they can't see on the outside what she feels on the inside".

Other children may be unsure about what makes Emma look "different", and often stare, or even call her "weird".  And this is why we have Moebius Syndrome Awareness Day.  

People with Moebius Syndrome, and many disabilities, are not usually mentally impaired, and so they are acutely aware of the reactions of people around them.  This goes for many people with physical disabilities or facial deformities (like acne, burns or scars).

Please help us to educate and show children that everyone is unique, and rather than avoid discussing someone they might see in public, let them know that they are a person with feelings, a family and quite possibly share interests with them!  Most people I have met with special needs, congenital or otherwise, would rather you come over and say "hi" and than avoid them.

Please feel free to contact me if you have any questions about Emma, Moebius Syndrome or great ways to start the conversation.

Thank you for reading.

~ the response was really positive, and lots of parents saying how much their child loves Emma or had fun playing with her at the pool in the summer.  I think they may be exaggerating in some cases, but my goal was to raise awareness not to get Emma a bunch of friends!

I did get one message from a mom whose daughter did the soccer camp with em, but is in the grade below her.  She told her mom that Emma is always too busy to notice her at school!  I had to chuckle.

I'm "friends" with some of Emma's classmates moms on Facebook.  One of them commented on a post about MSAD:

"Nicholas just said if it makes Emma happy he is going to wear purple on the 24th. He asked that I take a picture do she can see it☺. I am thankful that Emma is such a proud smart classmate of Nicholas'. And this pic is beautiful!"

And she also said "He is very fascinated by Emma. Not in a freaked out way. I am raising him in his Faith and so he tends to wonder why God chooses people for certain "jobs" on earth. He views Emma's job to teach people how to live through words and art (she must draw well) and how she helps people. Regardless of her Moebius, she is a great kid. This just adds to her gifts. At least from what Nicholas is teaching me."

Made my heart melt!

Another mom (also of a boy) texted me the other day and said that he "adores" Emma!

She is something that girl!

#MSAD15

In case you have not heard, this Saturday is Moebius Syndrome Awareness Day!

If you are on Facebook, please snap a picture of yourself wearing purple, and post it with the #moebiusawareness.

You can also download this form:

And post a picture of you with it on Facebook, same hashtag.  Em and I did ours tonight:

(I love writing my blog, and facebook posts!  Thanks for reading them!)

And let everyone you know to join in too.  We aren't asking for buckets of cold water over your head, but you can help us raise awareness!

Weight Watchers

If you didn't already think I was crazy, this might do it!  While driving, I found myself comparing my new Weight Watchers journey to following Jesus.  See, I told you!  Seriously though, hear me out!

First, I have heard of Weight Watchers (even gone to some meetings before), knew people who had been transformed by it, but never before decided that it was the path for me.  

Much like Christianity!  I grew up hearing about it, the bible stories, Easter and Christmas, but never saw how it was relevant for me.  Then I met people who had been transformed by following Jesus, and I decided I should try it.

So just like that, I started.  You don't lose weight to go to weight watchers, and you don't become "good" to follow Jesus!  Healthy people don't need a doctor (that's actually scripture!)!!

I have tried to transform my relationship with food (it's not like you can quit eating, like booze or drugs), but was still struggling.  I tried to find the purpose of my life myself too, hunting for a suitable husband, getting a house, making all the right moves - to no avail!

Like most things that involve change, it is impossible to get lasting effects without the support and encouragement of others.

I got up early one weekend morning, and headed to a meeting.  I was not dragged there, I was nervous, but I knew I wanted more in life and my way was not cutting it.  I needed to seek guidance and support.

I chose to surrender myself, my freedom (or maybe we should say hedonism), and subject myself to the plan that was created but is deemed to be the way.

Clearly here I could be talking about church or WW, but I feel I should point out that the difference between God's plan of salvation, and the WW plan is immense!  One was created out of love, by the Holy God of the universe, and is the only way for all of mankind.  The other is a lifestyle plan for eating that may not work for all people.  Kinda obvious, but just in case!

So here is the topic of surrender.  It is so often deemed a negative phrase, but in order to truly benefit from someone else's plan, you can't change the details to your own plan, then it is no longer the plan you want to follow!

And so it is with WW that I freely chose to eat whatever I want, while adhering to the tracking of the food and staying within the points range assigned to me.  It's not easy, and doesn't always feel good to say "no" to things I have always enjoyed, however, it is liberating to believe that my choices are in my hands and I can make the right ones.

Likewise, following Christ and his plan for my life is not always easy.  Much of the world actually pulls in the other direction.  Our culture calls for "me first" and success is measured in much different way than God. In fact God is not at all interested in worldly achievement.  His goal, before our pleasure, comfort or prosperity, is his purpose.  When we seek to stay within his guidance boundaries, saying "no" to the things that will distract or destroy, we are liberated to become who we were meant to be - and that brings peace, joy and His presence.  (*Note: I said "seek" not "do", because we are all fallible people and will never perfectly stay on the right path!  See Moses, Abraham and David!)

This might seem like a stretch, but I promise you, it's not an intentional comparison!  There are so many parallels to this journey, but it goes without saying that there is no purpose, no fruit, and no future to be had without Christ.  Being overweight?  That I could live with!

Update

So, better update you after last weeks epic fail! 

After Monday's meltdown, Emma regained her composure and happily complied with the two final videos for the trial, and as promised, we marked the date with a trip to her favorite diner.  We invited Allie, the therapist to come too - the least we can do to thank her for her help!

We had a great time and the kids have quickly got used to having Allie around!

Now we have to wait for the judges to assign Emma to one of the trial groups.  She could get the therapy this trial is hoping to get approved, or she could be in one of the traditional control groups.  

Then Allie will come three times a week for half hour sessions of the therapy we're assigned.  There will be videos mid-trial and at the end, but we will tackle them differently!

We'll balance that with 9 weeks of "pep club"!  This year Emma signed up for a club that is basically like mini-cheerleaders.  She's really excited and will do 45 minutes every Tuesday until the "show"!

She's adamant she wants to do gymnastics, which is great, except for the price!  We can wait until after the club is over, and then it will be almost summer and time for the pool, so perhaps we'll push it off until the fall!

We also go to the orthodontist in March for x-rays, with a view to get the palate expander in her top and probably bottom palate.  This will alter the width of her bite and hopefully allow the front teeth to move back in line with the rest of the teeth.

So, it's all go here for Emma, and I'm conscious that it's the last few months before Toby starts school and will participate in all the sports etc.  Both kids will start new schools in September, so I'd better save some vacation days for the chaos!

A Poem

There’s a giggle in my belly 

There’s a smile in my soul 

In my dreams I can talk clearly 

And my nerves I can control. 

But in real life there’s a problem. 

You can’t see beneath my skin. 

So you look just on the surface 

and you notice I can’t grin. 

My face can’t make a smile 

and it’s hard to close my eyes. 

I was born with Moebius Syndrome. 

What a name for a disguise. 

‘Cause I am not this syndrome 

 I’m a me that’s much like you 

Though I may look slightly different 

 and I may at times seem blue. 

Some people think that laughter 

must show right on your face, 

but if you lived with Moebius, 

you’d know that's not the case. 

So teach your heart to listen. 

It will hear what you can’t see. 

We will have the greatest friendship 

if you stick around with me. 

~ Joan Fleitas, Ed.D., R.N.

Epic Fail

Ugh, epic mom fail today.

So we signed up for the Talk Tools clinical trial at the conference in July.  Then we found a volunteer therapist (because Emma is not currently getting speech therapy we couldn't just use her existing therapist) and we were all set.  I forget when we did the first baseline session, but it was around sept/oct.

The clinicians had so many problems and delays that they could not work out the therapist had to quit at the end of November.

I was gutted, and mad!  We want to do the trial to help get this therapy approved for all therapists to use, and so we can get it for Emma.

Anyway, I approached her previous therapist from early intervention 3-5yo, and she agreed.  I couldn't believe it.  We scheduled to start in January, giving the team plenty of time to get stuff fixed.  And she has much more flexibility and seems into the whole discovery thing.

In the meantime I already moved back X-rays for Emma to have a palate expander from September to March - which is now cutting it really close because it's a 3 month trial!

We started a week ago.  We did the first video session and submitted it.  There were some things the therapist didn't do quite right, so we had to repeat it.  

We did two, on the following two days - leaving one to go.  Then she got an email from a guy who helped design the study telling us there was a problem with how we did the other two and we would have to start again.

So on Friday we did a fourth session, with two more to go.  Both me and the therapist were pretty frustrated and Emma was getting fed up having this camera in her face and having to do the same things over.

Today the therapist came to do session "2" (really 5!) and we got started.  Right at the start em made a mistake and said an answer, when she was supposed to just read the question.

I stopped the camera and said (nonchalantly) that we need to start again.  Well, Em burst into tears and ran over to me.  She was inconsolable for over 10 minutes.

I felt so bad.  We went up to her room and I let her know many times that she was not in trouble, she did nothing wrong and if she wanted to stop we would, no problem.  She said she didn't want to do the video.  She actually asked if she could get right to the therapy!

I was so worried she was done completely, bc we are only doing this for her.  Scott went in and "let her know we all love her very much, and when the difficult part is over we'll go out for dinner to her favorite diner!"  That saved the day and she's agreed to do the other two video sessions!  

It's so hard to remember that this stuff can be weird for kids, especially when they are as agreeable and capable as Emma.  I tend to assume she gets it as well as I do, but she's only little.

Time to remember she's my baby, not a project to be carried out.   Probably one of the toughest parts about being a special needs mom.

I'm posting this one for my Grandad!  I think he'll get a kick out of this!

You learn something new everyday, but this new trick just might be the best thing you'll learned all year! Watch this carpenter teach us how to get nail through wood without unnecessary holes.  He dips a piece of wood into boiling water and lets it sit for two days. The piece of wood looks contorted and worthless until he does the exact same process again. Viola! An awesome trick to pass down to your children! If I hadn't seen his process before, I'd think it was magic!

Out of the blue

Waiting at the bus stop this morning, Emma drops a bomb on me... "Yesterday at lunch, a girl said my syndrome was weird."

She was clearly not happy, but wasn't crying or anything. She knew it was not right and said it didn't make her feel good. I calmly told her I'd talk to the teacher, while my adrenaline started to run and my ears burned!  I immediately emailed her teacher and principal, and had to leave for work.


Before I ever had a chance to discuss the issue further with Emma I came to some conclusions of my own. I'm going to give the little girl the benefit of the doubt that when Emma probably explained the nature of her smile, and syndrome, that the little girl was exclaiming that this was something unusual to her, that she was unfamiliar with it, and that weird is simply the kid word that she chose to express that.

I am also going to acknowledge that not every family teaches their children that using the word weird to describe somebody, can be offensive. Unfortunately many families do not teach their children that the word fat or ugly, is also offensive even when said in jest. Part of me wonders if the f-bomb would be less offensive than specifically calling someone a derogatory name or word.

Unfortunately the discrimination of people with physical or intellectual disabilities is not as prominent as many other areas, and I, for one, never felt called to champion it until the issue became very present in my life. I assume that's the same for most people.

I absolutely want to equip Emma to handle these kinds of situations by herself, but she is 7, not 17, and since this is the first incident at school I am not prepared to ignore it. But I'm new to this too, so I'm going to have to work out where the balance is between support and over protection.

As it turns out, the school handled it very well, and Emma is happy with the outcome.  The school counselor took Emma and the other girl to sit down and talk. The counselor explained to the girl how her comments could be hurtful, and she apologized to Emma. Emma responded with "I forgive you", which the counselor was impressed by and told Emma that she was glad she said that and not "that's ok" because it's not!

I am so proud of my daughter, that she is so forgiving and also understands the concept of ignorance, even if she doesn't know the word for it. She definitely displays the heart of Jesus, even if people don't recognize it.

She is over it now and has moved on. Her pain was validated, addressed and importantly she released any withheld anger, which would have hurt her more than the other person.

We can't stop people being mean or ignorant, but we can teach our kids to forgive and move on, mainly by helping them to understand that not everyone is taught right, and often we too can be mean and ignorant. We can extend grace, even where it is not "deserved", without being victims or subjecting ourselves to further pain. When we forgive, it brings us peace and we are able to be whole again.

Nowhere is this more important than in how we (moms/parents) model for our kids what that looks like. I've gone the angry route before and my child was upset by my reaction, and the other kids had no idea I was angry or she was upset! It was only hurting us.  I am constantly going back to my role model - Jesus Christ.  Even in the midst of being tortured and killed, he extended grace, totally undeserved mercy and prayed for those who hurt him, that God would forgive them.

Skinnyness

As Emma and I shared the bathroom this morning she puffed her belly out and said "see how big my belly is?  I don't want it to get any bigger."  My heart sank.  "why not?" I asked.  "I like my skinnyness."

I was crushed.  I have tried so hard to keep body image issues away from Em.  We never use the word fat - I mean at all!  We have been addressing her weight but we never discuss it and only focus on being more healthy, as a family.  We talk about exercise and eating balanced diets so we aren't lazy and unhealthy.

I didn't even want the kids to know I started Weight Watchers because I don't want them to think that the number matters as much as developing healthier habits!

That said I know I mention her waistline when clothes don't fit her right, because that's where.  I have tried to use other words to describe the issue like thick (it doesn't mean unintelligent here) or a little girth.  

It's not even fat!  She's just had a big belly since they put her intestines in.  That's why I buy clothes one or two sizes above her age, and usually short sleeves (because they're always too long).  She only like to wear tights or leggings on the bottom, I think because they are stretchy round the middle and not too long.

Even if I am super conscious about my words, it's still EVERYWHERE in our culture, and it breaks my heart that she's so young and worrying about having a big belly. This motherhood thing is hard.  I'm thankful that success is simply doing my best, and I can trust God for the rest.

We are going to try and teach Toby to read before September, or at least get his "sight words" - these are very short words that appear frequently and are learned by memorisation, like "the", "a", "are".

As we were sat around the table we tried showing him a few words.  I was trying to get him to say "we" using the letter sounds.  When I finally said "it is we" his response was epic:

Toby: No! We is spelled W-i-i!

We cracked up!  You can guess what he has spend the last week doing, and is highly addicted too!

Happy New Year!!

For many years I have felt the pressure to make New Year's Eve a big event.  We either needed to go somewhere, do something or celebrate somehow.  

But this year has been different.  It just didn't seem like such a big deal!  Then I realized why.  So much is made of the new year as a "do-over", second chance, time for change.  While 2014 came with its challenges, I just don't feel the need to start over!  

It's a wonderful place to be, recognizing the blessing of where you are, instead of wishing things were different!  I couldn't imagine a more perfect-for-me husband, and the kids are truly a blessing.  We have new goals for the next year, dreams and prayers, toward growth and progression.  We aren't worried about fixing mistakes!

We weren't planning on doing anything, but some friends invited us to stop by their party.  Scotts parents kindly agreed to watch the kids for a bit, and we went, but were all home by 9:30pm, and asleep way before midnight!

It might not be the wild night others look for, but we'll be up with the kids, hitting the Wii early no doubt, and that is quality time!

Next year, maybe we'll make it to England for the Florida reunion!!

Flashback!

Looking through old files I found this log from the day I went in to be induced with Toby!  Kind of funny to look back on it now, 5 years later.  I do however remember not being able to get online, and how frustrating it was!!

The longest day

We all got up at 6am to get ready.  Grandma Ellen and Pops arrived at 6.20am and Emma was all set for a day of fun!  She couldn’t have cared less as I tried to cuddle on her for a few minutes.  When Scott told her to give me a big squeeze she hugged me, putting a hand on each shoulder and preceded to squeeze my shoulders!!

Scott and I headed to the hospital, got checked in and strapped to the monitors for a few minutes.  The baby looked good and started moving around right away.  I was quite relieved since he’d been quiet all morning.  We took a quick walk around, peeked at the babies in the nursery and contemplated how strange it will be to have a newborn at home.  We can’t wait to see how Emma is with him – and are thankful she is so gentle with things!!

Then we waited for the midwife to turn-up! 

We tried to get online many times, even had the hospital techy look at the laptop and we can’t get it to pick up the network.  (Scott is posting this from home!)  That is one of the biggest frustrations – my connection to the outside world!!

There are a few options for inducing labor and we opted to go for one that worked on contractions and cervix ripening.  It’s such a drag to not know if they will work, or how long it might be before labor even begins, let alone ends in delivery!!  God willing the whole process won’t be too long, whatever that means.

It’s hard not knowing how long I’ll be away from Emma.  If it looks like I’ll be here all night I labor we planned for Scott to go home and put Emma to bed so she doesn’t have to wonder where we both are.

Within two hours of arriving at the hospital our nurse, Jean and midwife, Sarah, had us sharing the story of how we met and also telling about Emma.  It makes everything worthwhile when you are able to share the goodness of God with the people around you!

By the time I ate lunch I’d had two doses of the labor inducing drug, with on very occasional cramping, no contractions or discernible changes.  The midwife didn’t see the point in checking me until I started contracting. 

In the meantime I struggled with boredom and restlessness.  Being stuck in a hospital bed with very little to do!  Scott was great though, and kept giving me foot massages. 

I watched a couple episodes of Baby Story and one had a woman in labor for over 24 hours.  It was not encouraging to me!!

Before the third (increased) dose of meds I quizzed the midwife on what we are facing.  She said she figured something would have started by now. In fact, I have the longest cervix she has ever seen – not good when you’re trying to go into labor!!

Shortly afterwards though the contractions started coming, although they are still drug-induced!

So far the plan is to change to a different medication for overnight to finish the job on my cervix and/or kickstart me into labor.  That’s right, we’re expecting to go overnight and then start contraction meds in the morning if necessary. 

They put the new stuff in at 6pm after I got checked again.  Something has been happening as I am 50% effaced and baby’s head is lower.  For now though, we’re still waiting for my body to take over the labor by itself.

It’s very difficult to not get discouraged.  I miss Emma so much, and had hoped (however delusionally) that she might be able to visit her new brother today!  Hah!

Instead Scott is going home and spend an hour or two with her before bedtime.  Tomorrow I will need to see her!  I haven’t spent more than 24hours away from her since November last year, and that was torture!  With any luck things will get going before hand! 

Want to help? Turn up the volume on those prayers, please!!!

Christmas 2014...in pictures!

Before church on Christmas Eve, this was the best I could get!

And new pjs - our tradition!

Christmas Day...
First up, opening stocking gifts on our bed - carrying on a tradition from when I was little and we would open our stockings on Mum and Dad's bed!

Hulk costume!

Princess toothbrushes - she was really excited!

This was a tough guy face for the Spiderman toothbrush!

Leopard print tights - you have no idea how nuts she went about these!

A wedding bouquet, ring and veil!

Then downstairs for the tree gifts, that the kids had been looking at since Saturday!  Kudos for their self-control!!

Emma got Toby a mini skateboard!

A Frozen nightgown - can you see the excitement?!

Bow and arrows!  Suction of course!

She has yet to take it off!

Boys and clothes!

Legos!

A scooter!  Apparently though, he's scared to try it!!

A microphone with speaker for our little performer!

Scott also surprised me with some gifts, which I loved!  He knows me so well.

And we were done by 8:30am!

Then it's time to play!

Scott and I got the kids a Wii, for the kids, you know!

I've made quite the village for the kids.  I give it 3 days before it's destroyed!  Toby still has to put his big one together.

We got some new ornaments in our stockings!

My sister sent four of these over, which I was thrilled about!  And I got a Union Jack umbrella from my Mum! 

 I made pork, roast chicken and roast spuds for dinner, and they came out great!  I forgot to do veggies, but nobody cared!

We had a lovely day, even though Toby got sick Christmas Eve night, and Emma got up at 4am (and every half hour until 6ish) too excited to go back to sleep!