Fork in the road

I went to church yesterday, which was awesome.  We've only been a couple times in the past 5/6 weeks because of various things, and we are usually there every week, if not twice!  

I've been missing that time which brings my focus back to where it should be.  When I am wrapped up in "life" too much I focus on the little things that aren't important and allow the fears and worries to engulf me.

It was clear from the first few words of the message this week, PB was pulling no punches and he delivered a great message from the truth of God's Word.  It really reinforced a change that had been trying to get through to my spirit.

Following Sunday's surgery, I had a lot of time to start questioning what happened and what was next.  And of course, what might have happened.

I was wondering what if it wasn't appendicitis and I may still have something wrong with me.  Or, what if there are complications from the surgery (still possible, scarring etc, but..).  And so on.

I found it very difficult to adapt to the interruption in my life schedule.  Our routine and daily plans were thrown on their head and I did not like the powerlessness I had in that.

As the week went on though, and I realized I've been denying God's hand in things, I decided I needed to change my thought process.  I had unquestioningly trusted the doctors, which was wrong, and had not prayed about the situation.  But I could choose to dwell on that or look for God.

When I did, it changed my attitude.  Something had prompted me to go to the emergency room for symptoms I wouldn't normally have gone.  They sent me home, without a diagnosis and I felt better than I had.  But they reviewed the CT scan and called me back in.

That chain of events, I believe was a gift from God.  I did not suffer for long with the pain and they caught it before the appendix ruptured.  It could have been a whole lot worse.  And it could have happened when Scott was in Equador!

The secondary pain I mentioned has gone and was probably a muscle pain because of the way I've been carrying myself.  

Today, the result of the biopsy confirmed I had appendicitis, probably in the very early stages.  I'm feeling pretty strong and hopeful that I'll be cleared to drive and work on Wednesday - if I'm ready.  

It's only been a week, but how intense!  I've learned a couple of lessons and probably missed more!  But I do have a greater appreciation for how precious each day is.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?  Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life? 

“And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin.  Yet I tell you that not even Solomon in all his splendor was dressed like one of these.  If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith?  So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ for the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well.  Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Matthew 6:25-34

Long time

It has been a long week, for several reasons!  One is that I spent most of the week alone.I could not have handled the kids by myself this week, and so we are incredibly thankful to Scott's parents who took them almost every day, including last weekend when I got sick.  In fact they even kept them Wednesday night because Scott was also sick.

That's another reason, with Scott sick time seemed to stand still.   Of course he went to work, but he was a hot mess.  Wednesday night he had an incredible fever and I was really worried.  He's bounced back for the most part now, thank goodness.

I've missed the kids a lot.  Not so much seeing them, as I would have been at work a lot anyway, but more being close to them.  I hug my kids a lot. I love to pick them up and squeeze them, tickle them etc, but I have really not been able to do that, and if you ask them to come over for a hug they usually refuse!!

I've really needed the rest though. I get very sore if I try too many routine activities, or get light headed.  I spoke to my surgeon yesterday (he really does not do well relationally!), and we are meeting Wednesday to discuss my return to driving and work.

In the meantime I've developed a pain just under my left ribcage!  This is a little concerning because my family doctor is not convinced I had appendicitis in the first place.  We have to wait for the biopsy results to confirm (although the surgeon says it was definitely inflamed.)  

I would certainly caution anyone who is told that the doctors think they have appendicitis, to get additional tests to confirm.  Also, push for laparoscopic surgery!  The surgeon was in such a hurry he really didn't offer much discussion on the procedure.  I'm really mad at myself, given our experience with Emma, that I did not take more time to discuss it.  I was a deer in the headlights!

And in the back of my head is the question over how much all this is going to cost us, since our insurance sucks.  It's really sad that I am evaluating how bad my health is in financial terms, it makes decision making complicated.

Thanks for all your prayers.  We've been so blessed by the flowers and meals we have received.  I'm hoping to go to church tomorrow and re-enter the real world!

Identity Crisis

Day one of my home recuperation was not what I thought it would be.  I woke up with a stiff neck and shoulders, presumably from my new sleeping position and lack of movement through the night.  Even though the kids were good, walking downstairs under their own volition, I soon realized I would not even be able to manage even the most skeleton schedule of care.

I had to ask Toby to open the heavy freezer drawer of our frideg-freezer, because bending and pulling would not be good.  I managed to give them both a toasted waffle, but opted for a juicebox rather than the heavy juice bottle for Toby.

I hovered around last nights dishes, that stared tauntingly at me!  I never imagined growing up that I'd find it so hard to avoid doing chores when I have not just an excuse, but direct order not to do it!  I guess some fruits of parenting appear well into maturity!

Kim came over to watch the kids for me, yet somehow I could not stop doing little things here and there.

I did take a half of a pain killer after breakfast (half, because the whole one I took yesterday evening almost made me pass out!), but I think there was emotional masking of any pain, not narcotic.  

I realized some time ago that I see much of my value as a person comes from what I can do for people.   Not doing anything for anyone, therefore makes me uncomfortable.  Maybe something I need to face!

Additionally, when I removed the outer dressing from my wound, I discovered a 3-4 inch scar. I'm not sure what I was expecting and I'd told the surgeon I wasn't worried about having a scar (when he seemed reluctant to do keyhole surgery).  However, something a little disheartening about having this long scar across my body.  

I guess it's more of a personal self-image issue than a public one, given that I retired the itsy-bitsy-teeny-weeny bikini when I had kids. Not being able to do my hair nice or wear my cute clothes doesn't help much.

I will need to watch my diet during this period of recovery. I'd gone over 2 months without eating carbs,losing 15 lbs before the surgery.  Since people from church are being kind and bringing us dinner each night, I felt it fair to not impose requirements on them. So, I'll just need to be mindful that my appendix was removed, not my self-control over thought and feeling!

One thing is clear, it was a miracle things worked out how they did.  I was really not in what I would've said was "critical pain", I just felt I needed to go to the hospital.  When they sent me home, it could have gotten much worse overnight. 

Back home

I just got back home after my night in the hospital.  I did not get much sleep last night, mainly because I usually sleep on my side or front, and that's not possible right now.  Additionally, lack of drinking or eating left me with a headache and that makes sleep elusive.

It was fun that my friend who is a nurse at the hospital was working 3-11pm yesterday, but that's the only fun thing!

The doctor came in to see me at 7am today, and cleared me for clear liquids - thank God!!  I'd been asking for hours, but this surgeon is apparently one you don't mess with so no one was willing to buck instructions!  I finally had some juice and water - and some headache pills!  I then slept most of the morning.

After more liquids at lunch I asked for some pain meds, which did not agree with the water ice and I was sick.  I was worried it would stop me going home, but they just gave me anti-nausea meds.

Finally the doctor came back and told me I could go home.  The catch: I can not drive or go back to work for over a week.  Right now I can see why, I'm pretty fragile walking etc, but 9 days!  I really don't like having to sit still - I like to be lazy on my terms!

You'll be hearing plenty from me this week I guess!!

Road to Recovery

Here I am, all alone, ready for a night of rest.  It's kinda funny really, I don't particularly like hospitals or hotels, but my bed here is really comfy and I have no choice, so I'm making the most of the peace and quiet.

Unfortunately I am not allowed to eat or drink all night, which is a pain, but the drugs are keeping my appetite down and I have fluid through an IV.

I just Skyped Emma and Toby, as Scott went home to be with them.  I had told Scott's parents they could take the kids to Target for a new toy if they wanted, on us.  Emma got a Minnie Mouse and fairy Silvermist dress, Toby got a monster truck.  They were very excited, but still so sad when it was time to say goodbye.

It was the right call not to bring them in here because I would've had a hard time letting them go.

I have these cool wraps on my lower legs that periodically inflate like a blood pressure cuff to increase flow.  It's like getting a massage!

I'll keep you posted, but for now, good night!

Surgery went well and I'm in my room. Looks like I'll be in overnight and off work for a week.

I'm so thankful that we got it in time, before it burst and everything seems to have been straightforward.

The poor kids seem very upset, but I promised new toys before I left them this morning!

Emergency surgery

It feels surreal to be writing this, from a hospital bed (mine) in the ER! So often I've been the parent, but now I'm the patient.

It started yesterday with abdominal pain and a CT that didn't show much of anything. I was in the ER for about 4 hours and felt much better when I left.

The phone woke us up at 8:30am this morning (much later than we should have been up for church!). It was the ER doctor telling me radiology reviewed the scan today and believe I have appendicitis. Could I come back?

Duh, yes!! I scrambled to get up and dressed. Scott called his parents to watch the kids and we planned to rendezvous at the hospital.

Before I left the house the dr called again and told me not to eat anything and a surgeon was waiting to see me!!

Change of plan and Pops came over to get the kids so Scott could drive me.

I wasn't really scared about the surgery, no time for that!! I know God is giving me peace about it.

Even so, I wrote out a quick will, a video for the kids and now I'm just waiting.

It's quite sobering to be faced with your own mortality. All the people you wish you could talk to, or share the gospel with.

Death doesn't scare me, I know where I'm going! The thought of leaving loved ones behind who may not join me there, now that's scary!

I'll post again soon...

Jesus said to her: "I am the resurrection and the life. The one who believes in me will live even though they die. He who lives by believing in me will live and never die. Do you believe this?
John 11:25-26

Be Loud

One of the most significant things that I took from the conference this weekend is the need to raise awareness for Moebius Syndrome.  The goal is acceptance, communication and freedom for those affected with Moebius Syndrome, not fear, self-hatred or isolation.

The guest speaker at the end of the conference was Rick Guidotti, a fashion photographer who stepped outside of the bubble of stereotypical beauty because he saw the beauty in those with differences.  Quite the artist.

For some really inspirational images of different beauty visit http://www.positiveexposure.org/.

So, wherever you can, whenever you can, talk to people about Moebius Syndrome.  Awareness that there is such a thing will change the way people see everyone with facial differences. 

One of the stories given at the conference was of a sample lady at the mall who offered her product except the person with Moebius.  In fact, she didn't even look at them, despite them walking by several times.

In recent years, I have seen myself responding differently to people with all kinds of differences and disabilities.  Why?  Because all anyone wants is to be loved and accepted, and a smile while you look directly into that persons eyes means you have told them they are worth it.

There's probably nothing better that you can do to help Emma and others like her, than to spread the word that different is not wrong.

Bad Dream

For several weeks now Emma has been showing up in our bedroom around 3am each night claiming to have had bad dreams. (Except for nights she has been up all day and a late bedtime so she is zonked out!) 

We've been debating whether this is legitimate or a ploy so snuggle with us for the evening. At the conference this weekend it certainly seemed to be likely that it's behavioral and she is repeating a pattern that works. However, my perspective on the issue shifted last night. 

Every night when I put Emma to bed (because it "has" to be me if I'm in the house!), I pray with her and sing a song (my kids are the only people in the world who appear to enjoy my singing, or at least tolerate it!!). Subsequently, when Emma prays herself she uses much of the same pattern I do, based on Jesus' instruction on how to pray (Matthew 6:9) She often will, or ask me to pray for her to have good dreams. 

Last night she prayed... "Lord, thank you for my dreams. Please can you give me happy dreams so I can trust you. In Jesus' name, Amen" 

 Trusting God was the theme of VBS last week, and clearly in Emma's mind. I tried to explain that no matter what happens, we can trust God. Good or bad, the key is that God is with us and enables us to handle what we face. 

When she came in to me at 2.30am she was upset at another bad dream. She snuggled up with me. Then she said: "I prayed for good dreams, but I still had a bad dream." 

:( 

I know the scripture: 

"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 NIV) 

So, if it's hard for me to understand why Emma still is having bad dreams (if indeed she is!), I can only imagine the confusion she feels. We tell her to pray, and she believes that means God will do as she asks. 

This is something I think so many of us struggle with. We pray for or about something, but it stays the same or gets worse. 

I always think back to Jesus, who, when he was faced with his imminent suffering, also prayed to His Heavenly Father: 

“Abba, Father,” he said, “everything is possible for you. Take this cup from me. Yet not what I will, but what you will.” Mark 14:36 

 And that's the key. Often we are not willing to accept that God's plan may not be the same as ours. If we do not get the answer we want to our prayers, quickly enough, in rebellious independence, we set about making the outcome we want ourselves. 

However, Jesus shows us that, in trust and faith, we can surrender to God's plan, and in doing so receive the peace of knowing that we are in His hands or protection and provision. After all, most parents know that you can't keep your kids safe if they don't follow your instructions! 

When she woke up this morning I spoke to Emma. I explained that even though she still had a bad dream, we can still trust God. Either the dreams will stop, in God's timing, or maybe he is teaching her to be brave through the dreams. 

I don't know the answer, but trust is the reliance on the integrity, strength, ability, surety, etc., of [God]. I choose to believe God's promises (and there are many times He has made good on those promises to me), and no matter what happens I will trust God.

MS Conference 2012 - Day 3

Did I mention the theme for last weeks Vacation Bible School?  The five daily Bible points were:

No matter who you are...
No matter how you feel...
No matter what people do...
No matter what happens...
No matter where you are...

TRUST GOD!

On sunday, before heading to the conference we went to church.  Any other Sunday we might have skipped for the conference, but not this week.  It was Family Day, and a VBS recap.  

Pastor Bob shared the gospel in such a simple way, with a girl standing on one stool (reperesenting us) and a stool some 5 feet away representing God.

The chasm in between us and God is caused by our sin - our wanting to have things our way, and to live independently from Gods control.  

One of the guys came up and strapped a huge piece of wood across his shoulders, like the horizontal part of the crucifix.  He carefully laid the piece of wood from one stool to the other, supporting it from underneath.  This represented how Christ's death (punishment for our sin as he had none), once again offered connection to God.  

Then PB asked the kids and adults that if they trust Jesus and want to follow him, they can take this symbolic walk.  (Although the "Jesus" stand in moved out of the way!)  Emma went forward.

Jesus said "I am the ressurection and the life."  The one who believes in me will live, even though they die.  He who lives by believing in me will live and never die.  Do you believe this?

John 11: 25-26

Choosing to follow Jesus is freeing because it means you are no longer bound up in trying to be good enough to get to heaven (and if you weren't trying, it means you don't need to worry about going to hell.).  After making that intellectual decision, and living in a way to honor God, learned by reading the Bible and listening to the voice in your heart that convicts you, God will refine you into the person he created you to be.  It's not about having willpower or the right words to say - it's about following.

And that brings me back to the conference.  We have taught Emma that she is who God created her to be and as she follows Him, trusting that He will be all she needs, she can face the challenges that others may seek to create for her.

We arrived at noon on sunday, shortly before the final sessions, but mainly to allow the kids time to play with the others.

We then had lunch and the results of the raffle.  Emma had eyed this crystal necklace and we put our ticket in for it.  It was so exciting when she actually won it!!

Emma and Toby were both sad to say good bye to Addison from California.  Toby again with his older woman interests!!

 After a long weekend of late nights, early mornings and naps on the go, it was all too much for the kids...

She's not asleep - just goofing around!!

MS Conference 2012 - Day 2

 We all had to get up much earlier than we would have liked to get to the conference on time - that hotel room would have been great!!

Emma was excited to go, telling Toby "Toby! We're going to meet people we don't know!!!"  Can a person get more sociable than that?!  We knew they had a childcare room and as expected, Emma could not wait to go.  She was engaged before I even got Toby out of the stroller!

Scott stayed with the kids for a while, until Toby would de-cling!  Before I left I saw a shy little girl come in with her mom and asked Emma to make friends with her.  She did not hesitate, loving to make friends (and be "in charge" if possible!).

I went to a session on "Being Positive" lead by an outrageous and dynamic woman from Venezuela.  She talked about basically loving yourself - and having Moebius herself, I am sure she was inspiring to the people with Moebius in the room.  She inspired me!

This quote was a great mantra for every woman and one I will share with Emma in the future.

I also attended a session by Dr. Kathleen Bogart, a social psychologist who has Moebius.  I was able to ask about when/how to discuss Moebius with Emma, because is was very clear that we need to help her address it with her peers.  We learned that since the facial difference is an "elephant in the room", it is best to bring it up lightly, so people can see past it and not be fearful.

We have really not emphasized Emma's differences with her, so we need to broach it gently so she does not become self-conscious or insecure.  We know friends and family, who show her such wonderful love, will continue to show her that she has a place of safety and normalcy.

Having had her hair done, nails painted and barefoot, Emma (and Toby) joined us for lunch.  As you can see here, the conference so far had only added to her high spirits!  (and the water coolers added to her water consumption!)

I went to a session on sleep disorders.  I was pleased that Emma's "bad dreams" do not seem in the same league as the "night terrors" so many kids experience.  In fact, it is more likely she is just playing us, to get into our bed in the night!  We'll be addressing that one soon!

After the afternoon childcare Emma had a rainbow and

 butterfly on her face!

 Toby opted for a dinosaur!

 As you can see, the kids had fun while we waited for Emma to have her eyes checked.  This was part of a genetic study on eye issues, that also includes Moebius Syndrome.  We signed up in 2008 and updated this weekend.  

During the eye exam, the consultants were getting very animated, and repeating certain tests over and over (fun ones, with toys and watching eye movement - nothing tough!).  When I asked what was up they told me that when Emma was looking at something she would drop her chin, so she was looking "up" at it.  At that point her eyes were converging laterally.

Have I lost you?!  Basically, the sideways eye movement she should not have, as per her diagnosis, was in fact there enough where she could pull them both in to give her a 3-D image.  Not impressed?  Imagine if you could only see out of one eye - see how your depth perception is affected!  Thats what we thought Emma had.  No more "lift your head up!"

This is Emma with Lauren...

And here, back in 2008 - Lauren is in the middle.

I knew that the highlight of the conference would be the talent show on Saturday night.  I told Emma about it and of course she wanted in!  She decided that she would sing acapella, her favorite song she learned at Vacation Bible School that week.  We signed up and were one of the last acts to go on.

She asked me to go up with her, but when we got out in front of everyone she got shy and told me to sing!  Even if it hadn't been "Moebius Has Talent", I would not have sung!  I asked for a couple minutes and we came off to re-group.  I got my phone and found the song she wanted on YouTube.

When our chance came around again, we went out and I played the song for her to sing along to.  Scott had to use his phone to video - hence the poor quality, but you can get a sense of it...

Emma was the youngest singer to go out and everyone thought she was awesome.  There must have been over 100 people watching, maybe 200!  

There were some great acts.  Check out this little girl...

One thing was evident, that this conference is huge in letting people with Moebius (and their families) know they are not alone, and giving a place where they can relax and not worry about explaining themselves or being stared at.

The kids especially get a lot of acceptance from others siblings, whereas unaffected kids might often shun them or even tease them.

As Emma gets older we know this will be a must for our family.  Thankfully the next one is down the road, in Washington DC!

More to come from Day 3...

MS Conference 2012 - Day 1

Those of you who keep up on the Moebius news will know that this weekend was the 10th Moebius Syndrome Conference, held really close to home!

This would be our second conference, the first being 4 years ago in New Jersey, when Emma was just 9 months old.  (We could not make the trek to Colorado in 2010!)

The first conference for us was over-whelming as we tried to get a sense of what may lie ahead for our daughter, and us.  We absorbed as much medical information as we could and had to resolve to take it day by day to see what would be relevant, and hope we would learn more as we went along.

Moebius Syndrome is very much on a spectrum of how affected individuals are.  At that stage, we had no idea where Emma was, although her limb formation put her in good stead - many others affected with Moebius Syndrome have severe deformation of the hands and feet.

I was filled with apprehension about this event because there was a new factor - Emma's own self-awareness and confidence.  How would Emma respond to being around people with facial differences, and would it spark self-consciousness in her?  How much would we learn - or did we need to learn?!  I was even hesitant to bring her.  We have been able to encourage Emma to develop such a strong self-esteem and independence, could that be damaged.  (This may not make sense to you, but with no-one to really guide us, we are making the "best" decisions we can!)

The decision was easy when her sunday school teacher pointed out that the other people attending needed to meet Emma!  She is such a ray of sunshine, I knew she would be a source of hope to many moms.

Because of the location, we were able to avoid the hotel cost and planned daily attendance.  For the Friday afternoon, Scott had work and I attended alone, leaving the kids with Nanna and Pops.  I wanted to scope the scene and see how it might go.  (Big props to Scott's cousin Lisa who had volunteered to serve at the conference, it's great when anyone with a link to Moebius steps up to help the cause!)

It was all kicked of with the Director of the US National Institute for Health (uber- big-wig) giving a presentation on genetic research.  Incredible stuff, and they are getting started on identifying the gene affecting Moebius - whether the mutation is inherited, environmental or spontaneous remains to be seen!  I really appreciated this fact, that we should all remember:

 "There are no perfect genetic specimens.  All of us carry an estimated 80-100 significant gene flaws."


The difference is where your flaws are!

It was a long 90 minute science lesson, but he finished of with a song on the guitar, that he wrote for the conference.  It was good!

Before I left Friday I saw the two couples we had met in 2008, and also connected with a few others. Participating in the Moms forum, for kids with Moebius age 0-5 was really rewarding.  I so easily remembered being in their shoes, but there were many more of them and I was able to offer hope, tips and friendship - a great reason to be there!

Summer holiday

When we went on vacation I made a decision, to not spend the entire time behind a camera.  I really wanted to participate!  So, the camera was left behind, and I took a few choice shots with my phone.  

Emma was so excited to be at the beach she was not scared of the waves at all.  That's pretty good given she is not very strong, and can not close her mouth or eyes against the water! 

One pair of arm floaties and she was swimming in the ocean at every given opportunity - without anyone holding her, as she bragged often!

Here Emma is on the boogie board...

After church Sunday, Emma looked every bit the diva in my sunglasses!!

There was a great playground for 2-5 year olds with a bouncy floor!

Toby tried out his goggles, a purchase we made for them both, although his never touched the water.  He was scared of the waves and when forced to go in he clung to us for dear life!  (It was crazy hot, so he had to get wet to be cooled!)

First day at the beach and Emma wanted to be buried!

Her dreams of becoming a mermaid came true!

Toby rarely left the safety of the tent and blanket!

Our water babe!

Classic!

Warming up after a swim...

Sophia found a place to stand and see the world!

The kids were scared being in a new place, but our bed was too small for us all to sleep in.  So Scott took the air mattress between the two of them.  A sound sleeper, he locked them in with him so they wouldn't come in to me!  Of course, who knows what they got up to when he was still sleeping...

I connected with my inner-child on this trip, by dragging the family out early to take a surrey ride on the boardwalk...

(Despite how it looks I did no pedaling or steering!)

Lunch time! 

The kids really got along great all week and it was so much fun to watch them.

And Scott got to spend more time with them than ever before.

We played pirate mini-golf...

(she posed herself!)

We hit the boardwalk

And on the last morning we couldn't bear to leave right away, and we stopped for breakfast with Melissa (and baby Layton on board - due October!)

And Keith

 

Unfortunately, I did not get any of Emma swimming in the ocean, or of the sunsets from our roof deck, nor the feast of snow crab legs Julie made for us, but the memories are there!! 

 

Close call

If you thought I was in summer mode last week you were right - not only was I not posting, I was on a full-blown vacation!!

Back in the spring we decided to make every effort to have a family vacation this year.  With me working, it seemed reasonable - we haven't been on a family vacation in 3 years, since I was pregnant with Toby!  And finally, last week it was time to go.

In the middle of a heatwave, we couldn't have planned better weather, but we did not anticipate one of the most dramatic journeys to the shore!!  (Remember the snow storm of 2010, when we were stranded at the airport on our way to visit family?  This was almost the summer version...)

We hit the road with a quarter tank of gas, intending to fill-up on the way - it's cheaper on the highway in New Jersey than it is at home!!  However, when we got to the one rest stop, half the gas station was closed and long lines were forming.  Despite the light on the dash telling us fuel was low, we opted to keep going and get off at the next exit.

As we drove down the road away from the busy highway we were surprised to see trees down everywhere, and even more that the first gas station we saw had no power.  Then another, and another until we finally realized the storm that passed over us the night before must have touched down right there!  Sure enough power lines supported fallen trees and whole towns were without power.  With temperatures soaring over 90f, stopping and waiting for a recovery vehicle was not a pleasant option.

With no end of damage in sight, we double-backed and headed back toward the highway - by now totally unaware of where we were, and without any GPS or cell phones in the power-less communities.  I was driving and getting more agitated with each precious mile. Scott kept me calm and worked on keeping the kids happy.  If I had not been driving I might have lost it!

There was no way to know how much fuel was left, or how we could even contact anyone to help us.  We had no idea how far we could go, and so were effectively helpless.  We prayed, and prayed!!  We knew we might possibly need a miracle!

Eventually, after pulling into a darkened gas station we were told of an oasis - a gas station a half mile away that had been open earlier in the day.  With little other choice we filtered into the heavy, painfully slow traffic and prayed.  By this point we had shut of the air conditioning and had the windows down for some ventilation - but not much.  Toby did not like this and let us know it!

Eventually we could see the gas station, and as we got closer we saw police blocking the entrances!  They were directing cars into a parking lot across the street to queue for gas.  It was so surreal.  People were walking down the side of the road with 5 gallon gas tanks in hand!

We got in line, and Scott got some freezer pops out of the cooler for the kids and shared them with the car behind!  From here Scott could push the car into the station if it died - but would there be any gas left!

After an hour and 40 minutes of driving around on "E" we pulled into a pump.  "Fill 'er up!"  Not a moment to soon as one of the pumps ran out and shut-down!

It took twice as long as it should, but we made it to the shore, so very ready for a vacation!!!  We had a wonderful week with Scott's family and friends who were in town.  Emma discovered her inner-mermaid, and we all enjoyed some rest and relaxation.

Pictures to come...

Reunited

On Sunday we went to the annual reunion for the center of fetal diagnosis and treatment at Children's hospital.  Emma was really excited when I told her about it, as she now remembers the fun things they have. 

This year was the 16th anniversary and the number of people is just growing and growing. They really do amazing things that could not have been imagined just 16 years ago.

We had a great time...

The continued all-time favorite- the carousel!

This little guy was the star of the event, in his little wheelchair. He could steer and move this thing like an adult.  Children are truly amazing adapters...

Emma got to meet the Phillies Phanatic...she was VERY excited about this!!!

Toby would not even high-five him, gripping tightly to Scott's shoulder.

Neither Emma or Toby would say hi to the Elmo or Cinderella walking around though!

This is Emma with Rafael.  For 3 1/2 months they slept in adjacent rooms and shared a nurse.  He was very sick and was in hospital probably twice as long as Emma. It is great to see him doing so well.  His family are very different from ours, being orthodox Jewish from NJ, but there is a common bond that we share and it's really like seeing family when we catch up! 

Emma pet the police dog. Just a couple of years ago she wouldn't go near a dog,let alone a a big one!!

Emma is now a moonbounce fiend!  Again, just a year ago she would have none of it! On Saturday we could hardly get her off the moonbounce!

 

Here we were two years ago...

And now...