Christmas Tradition

Definition of TRADITION

1

a : an inherited, established, or customary pattern of thought, action, or behavior (as a religious practice or a social custom) 

Traditions can be good or bad, as with many things, it depends on your perspective.  America, for such a young country, is steeped in traditions.  

Our little family of four has yet to really develop any traditions for Christmas.  Emma's first was spent in the hospital.  Her second Christmas was spent in England.  Toby's first Christmas was at home and probably the calmest we've had.  Last year we were heading to England, but the weather threw us a curve ball and we had Christmas at home, with no tree!


This year we will be spending Christmas here and we are looking forward to both kids being able to appreciate every aspect.


Many people think I am incredibly organized and mostly I am (even when it's annoying!), but I have yet to successfully prepare for Christmas.  


I'm not talking about Christmas Day, that doesn't faze me at all.  No, I'm referring to the process that is gifts!  Selecting tokens of one's love for another to present to them at Christmas is a source of much anxiety for me.  I want it to be something that brings joy, not disappointment. 


I'm not sure if it is the (real or imagined) expectations of others, or the challenge of getting things purchased and delivered around the world in time.  Then last week, Scott was working all day and evening, so I have struggled to find time to even shop.  

Yesterday, after a week of work and managing the kids by myself (which should normally have been pretty straight forward) the pressure was too much and the kids being a little bit defiant broke me.  I put Toby in time out in his crib and sat on the sofa to sob!

An earlier text message to Scott prompted him to ask his parents to come and relieve me for a while!  Pops showed up after I had gotten the kids settled in front of a movie with some nuggets.  I took off to get some of the shopping done.  

I feel so ridiculous even getting stressed about it, I know full well that material gifts are not the purpose of Christmas, even when you can't be there in person.  It's a choice to stay focused on the reason for the celebration.  (Hint: it's not about you or me!)

Later on, when Scott was home we were able to bring some of the joy in celebrating Christmas, to the kids.  We decorated the house...(Grant helped out too!)

 

Metamorphosis (More playdate pictures)

Gift idea

Toby seems to be enjoying his friends chair. I'm struggling for
Christmas gift ideas..are you thinking what I'm thinking?!

End of the Tube

This morning I sent an email to Emma's GI doctors.  We are 8 weeks out from our next visit.

As you know, miraculously we were able to stop using Emma's tube for water back in the summer.  It was been a bit of a struggle incorporating drinking into our schedule, as Emma can only drink one sip at a time (not gulp it down like Toby!).  If you're not sure why that might be a pain, try drinking a glass of water one swallow at a time. 

Increasingly Emma comes to us and askes for water, and has even drank most of a cup by herself due to thirst.  She also helps herself to water from her bedside cup during the night (which is also whenI do most of my drinking, weird!).  This is a great step forward as it shows she recognizes thirst and can do it by herself.  The challenge: she won't do it by herself!!

I can sit with Emma at times and she'll drink a cup of water in 10-15 minutes.  However, more often she will put up a fight with distractions and whining, especially with people other than me.  It's really fair enough, what's fun about being forced to drink!   However, we are perservering until the act of drinking becomes easier and more natural (which it is slowly.)

I'm sure you're wondering, as most people have been asking us lately, can we take the tube out now?

This was the question I posed to her doctors, with the caveat that we do have to vent her about once a week or so.  Sometimes I think she uses it as a diversion from sleeping or drinking, but her belly does get bloated because the air cannot easily escape.  The doctors gave me the answer I did not want to hear - have her tough it out!

What? No magic pill that reduces the gas so that taking out the tube will not result in permanent bloating or discomfort? That sucks!

But there you have it.  Over the next week we'll have to be stern and do our best to explain to her that we can't vent her.  It will be tough, but let's pray (and this is the strangest prayer request ever!) that Emma can burp more often!

Quote of the Day

Toby: Mom...
Me: Yes?
Toby: I want juice
Me: How about milk?
Toby: I want juice
Me: It's milk or nothing
Toby: I want juice
Me: Milk?
Toby: Juice
Me: Milk, or nothing.
Toby: Juice
Me: Milk or nothing
Toby: I want juice
Me: Nothing?
Toby: juice
Me: milk or nothing
Toby: uh, milk.
Me: Sure.

This happens so often it's funny!

Like father, like son

I can't tell you how totally adorable Toby is, if you can't grasp it from the videos and pictures(!), but he just keeps getting more so!

Toby has picked up a few bad habits of mine, to my regret!  It's most pronounced when we drive around in the car and Emma asks a question (which is inevitable.)  Whatever answer I give, Toby immediately repeats.  

If Emma asks him something to which he answers "no", it is followed shortly after by "NO!"  This is usually how I respond when the kids are doing something they shouldn't and don't listen after the first, gentle "no".

I guess it might also be my fault that when Toby babbles at Emma she chuckles and says "what are you talking about Toby?!"

My bad.

Toby is the more clingy of the two kids, in a normal situation, like when I drop them off at Nanna and Pops house.  Toby requires coaxing to leave my lap.  The usual temptings of cars and bowling no longer work.  However we are seeing an emerging passion for...

...drawing!

I know it's not unusual for kids to like drawing, but it does seem at odds with this energetic, physical little boy.  And it's more than a like - he practically leaps up with a resounding "Yes!" when asked.  

Believe it or not, Scott was into graphic art as a kid, so I guess Toby's a chip off the old block there too!

Yes, I did need help to stay awake shopping for all those hours.  24oz of Red Bull to be precise!

(Just in case you were wondering!)

Happy Thanksgiving

Happy Thanksgiving!

What? Oh, I know, that was Thursday.  This is just the first chance I've had to say it!!

Thursday was great.  We had brunch with friends, dinner at Scott's parents and dessert at the Thompsons.  We spent the day together and with people we love - awesome!

Then it was time to shop!  

At 9pm Thursday night Scott's sisters - Kimberly and Julie, and I hit Walmart for the first of the Black Friday sales.  It was crazy, and people stopped being polite!  

We weren't there long, picking up a few things (Julie got two crockpots for $10 each!), before we headed to Toys'R'Us.

Thankfully it was a mild night, but I should have worn my jacket as we had to wait in line outside TRU for about 20-30 minutes.  What was the draw?  They had a camera on sale that I wanted for me, as well as some things for the kids.

Once inside I headed right for the line they had for the electronics department.  I kid you not when I say I was in that line for over 2 hours.  It wasn't long, just really really slow.  Julie and Kim picked up the stuff they wanted, as well as found the non-electronics I wanted.  Then they waited with me.

I don't know many people who would wait in line for 2 hours when they weren't getting anything, but these guys did - and Julie is 7 months pregnant!  It meant a lot that they would do that for me - and not complain a bit.

Next we headed to Delaware, for tax-free shopping at Target!  I got the DVD player for Emma - so glad because our DVD player is not working right and she spends every evening watching Strawberry Shortcake on my laptop - I can't get a thing done!

I picked up some other stuff before we moved on to Kohls and then the mall!  I was able to get several Christmas gifts before we called it quits about 6am.

Friday was tough - I only got an hour of sleep before the kids were up and then took a nap with them in the afternoon.  I dozed on the sofa during the morning!

Scott had to work in the evening, so I took the kids with me to do my returns (rarely do I shop without returns!).  Thankfully Kimberly came with me, and we let the kids spend the some money they got for Thanksgiving.  Emma got a "Bullseye" to go with her "Jessie", while Toby showed little interest in anything but cars!

Saturday Scott was out again so I did my best through the lingering fatigue, before we headed to a birthday party in the evening.  It was a great party, the 60th and 65th birthdays of some pastors we know.  There were not many other people there we knew, but they had loud music and a dance floor so Emma was in her element!

Emma and Toby made friends with some of the kids there, and really did great during the speeches and prayers.

I was feeling great about the evening and then something happened.

Emma was sitting on my lap, playing on my phone when the little 7 year old girl she had been playing with came over with a friend.  Before I knew what was happening she asked Emma to laugh, which she did.  Then the girl turned to her friend and said "See, she doesn't smile."

Feeling like I'd been punched in the gut I pulled Emma in toward me as if to protect her from an attack.  I tried to speak and explain to the little girl why she should not say things like that but the moment passed and she was gone.

Just days before we had been talking of the prospect of removing her tube in the New Year.  With Emma's progress in therapy (really incredible on all fronts) and this final hurdle in sight, "normality" was on my mind.

Then this encounter with an innocent little girl (I know she was not being malicious) had thrown me into an emotional whirlpool.  (Notice it was my emotional turmoil, not Emma's!).  

The instinct of a mother to protect her children from harm is a powerful and reflexive thing. Unchecked, it can paralyse you with fear of all the possible pain they may experience.

Last night Scott and I both tried to give Emma a coaching session on what to say when people make comments about her smile, without alarming her.  She didn't seem very concerned!

We went to church today, as usual, and as usual, Pastor Bob's message penetrated my heart.  

All kids, especially girls, face challenges of acceptance and differences as they grow up.  I know I did.  I also believe that having faith in Jesus, and understanding that God made us, unique and for a purpose, will get you through these trials.

Trials and challenges are what shape us into who we are, and God uses them to teach us and draw us closer to Him.  It is our prayer that both our children develop this kind of relationship with God.

Therefore, I can not and should not try to shelter Emma, or Toby, from the trials they will face.  I have to trust that God will do what I can not, and keep them from more than they can bear.  Only if we truly believe God loves us, enough to die for us, can we trust Him with the future of our children.

But trust Him I must, and will.

         Trust in the LORD with all your heart
                   and lean not on your own understanding;

in all your ways submit to him,
               and he will make your paths straight.

Proverbs 3:5-6

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.

Phillipians 4:6

Thank you God, for revealing Your heart to me, that my children will know you and have peace and joy in the midst of trials and trouble.

Emma had a blank wall in her room, and I planned a surprise makeover
for her birthday. I didn't have time, until yesterday, but went ahead
with it.

While Emma was busy I painted clouds on the wall. I later told Emma
her room was so cold clouds had formed!!

But that was just phase one...

And while she slept I put up the castle!

Emma woke me up around 4am calling for me. When I walked in to her
room she was sitting cross-legged on her bed. She looked at me and
pointed at the wall!

It was the strangest thing but I could see an expression of happy
surprise on her face!!

This is great - Toby will watch Strawberry Shortcake with Emma, but he
wanted to do it laying on the Eagles blanket, not Rapunzel!

Then he moved to the fire truck! He's such a boy!!

I've reclaimed the TV, and the kids are hanging out together - priceless!!

Cruel and unusual punishment

It hit me like a brick recently, that Toby is no longer a baby.  He's still working on his speech, which may have something to do with me babying him, or it may be that I don't want either of them to grow up so fast!

With age comes accountability, and sure enough, I can no longer excuse Toby's tantrums as the frustrations of a baby.  We are trying to figure out the best way to discipline him, within the parameters of what we feel is acceptable.

How can you not smile at that cheeky face?!

We are at a slight disadvantage here because most people practice with the first child.  Unfortunately (or rather fortunately!) we did not practice with Emma - there was no need!  Maybe we didn't recognize her tantrums, but I think they just weren't a big deal and the few times we did put her in time out, she got the point and the threat became enough!

Good friends of ours send their kids to their rooms for time out (or put in the crib where possible).  Since we have tried putting Toby in time out just in the corner of whichever room we're in, and it failed because he won't sit still, we decided to give it a go.

The first try at home came pretty soon.  Toby did not want to eat dinner and proceeded to scream "NO" and bang his fists on his tray.  (I don't know where he gets this tendency from!)
Scott promptly took him up to his crib and I set the timer for 2 minutes.  He yelled and banged on the wall for a little bit, but it was over really fast.

When he came back down he sat and ate his dinner like an angel.  It was awesome.

A day or two later I tried the same time out after he was hitting Emma [again].  I'm not kidding when I say he had a great time using his crib for a trampoline.  In fact, he didn't ask to come out for 10 minutes after I'd offered to get him out.

Since then we've tried it a few times, and it really does depend on the mood he is in.  Sometimes he will hit with a big grin on his face and those are the times he does not worry about where he gets put in time out!  I am hoping that as he learns to speak intelligibly he will be less frustrated and feel like his opinion matters more. 

However, Pops tells us repeatedly that Toby is exactly like Scott was at his age.  That's not good - Scott literally climbed the walls and furniture, and was quite the risk-taker.  We'll just have to find somewhere to channel that strength and energy.  In the meantime, hopefully consistent and loving discipline will help. 

I guess I also have to watch how I yell or even take things away from them when they misbehave.   I never realized that it's still snatching, even if it's my attempt to stop them poking their eye out with a pencil! 

Football Sunday

Getting the DVD software on my laptop was a great move. Now we can watch football and the kids can watch their movies!!

Longest Day

It was a long day! Emma and I arrived at the hospital for our "cranial-facial day" shortly after 8.30am. This was the second of the now annual check-ups, the first being last year and with Scott and Toby.

Emma and I waited patiently in the waiting room with other families there for the same reason. I didn't see any other kids with Moebius, in fact as I looked around (careful not to seem staring!) Emma had the least obvious facial differences.

This was quite a revelation to me, because although I know that Emma's differences are subtle and easily missed, I live in a town where all the teenage girls seem to be clones (or wannabes) of the trends of the time. It seems as though any differences will be glaringly obvious.

It doesn't take long when you visit the hospital to gain some real perspective on just how blessed Emma is to be healthy and on the mild end of the syndrome.

Emma quickly made friends with a 2 year old called Skylar, who was there with her parents and her 5 year old sister called Jaden. Jaden has Crouzen's syndrome, and her dad was telling me how much she hates the doctors especially the eye doctors.

Emma is really the exact opposite! After we'd been there a few hours she said at one point, "I like seeing doctors!!" clapping her hands. She then said "Am I a good patient?" In all honesty I told her she is the very best!

Our first session was with genetics. I wasn't sure what they could tell me, but I was surprised. There is a new theory on the cause of Moebius Syndrome - a vascular issue (blood flow) not genetics. This is good for the chances of the condition being passed on. Not so good for the ever-present question in my head - "what did I do to cause this?"

Anyway, I try not to dwell on that and won't here!

Next we went to audiology. I fully disclosed that she had been diagnosed with an ear infection, which they confirmed through testing her inner ear through the drum and also bypassing the [fluid filled] drum.

Emma is now a pro at the test where she has to "listen" to a block held up to her ear, for the "birdie" noise (which comes through the head phones she's wearing. To everyone's amusement, each time they played the sound at a different frequency she responded with "That doesn't sound like a birdie!" maybe 20 times, each time with the same incredulity!

We skipped the ENT doctor :-) , because we have to go back for retesting in 2 months! :-(

We visited opthamology, where Emma impressed with her knowledge of the alphabet. Unfortunately, she likes to mess with the person performing the tests and pretend she doesn't know it! That's when I have to step in and get her to do it for real!

There is a lot of wait time between the initial nurse evaluation and seeing the actual "doctor" in each department. Thankfully I brought the laptop (with DVD playing software downloaded) so Emma could watch her new Strawberry Shortcake movie (over and over!)...

And over...

We saw a pediatrician, who was very pleased with her.

We saw the cranial-facial surgeon, who had nothing new to report. It does look as though Emma's lower jaw has caught up and is less small.

We saw a speech therapist, who repeated the same word several times - "congratulations"!

We saw the dentist and orthodontist, who were happy with her progress.

Then we went in to see the social worker and they couldn't have put us in a better room...
Emma loves Jessie. Of all the toys she got for her birthday, Jessie is the one that comes out with us!

We didn't have any concerns for the social worker and she confirmed that helping Emma to be self-confident and independent, as she certainly is, is the best thing for her (and any child!)

We finally got done at 3.30pm - not kidding, that's a really long day with only a 45 minute break for lunch (not including the 4+ hours that we probably spent just waiting!)

Even so, I had to stop by the NICU and see my girl Taryn - we stopped by at lunchtime but she was saving a baby's life! By the time she came out Emma was moments away from passing out on my shoulder (which she did).

I also got to see one of my favorite nurses from Emma's stay, who I hadn't seen since we left, Denise (my Uno partner!)...

I was exhausted after this day, but I could never have anticipated the amazing triumphs we would have had in just four years. Tired, but joyful!

10 Ways NOT to Raise Your Toddler

I read the following article at my desk at work and literally laughed, out loud until I cried. Check it out...

I am a parenting editor and a mom. This means that all day, every day, I read about how to raise better children, and then go home and mess with my own. You know, it's all fun and games until the therapy bill arrives! In full acknowledgment of how little my advice will help any parent out there, I've decided to stick to letting the wonderful experts on this site tell you what to do, and give you this handy guide on what to DON'T:

1. DON'T ask, "Why did you do that?" Why did you bite that boy? Why did you hit your sister? Why is there spaghetti in your ear? Why am I asking you a question you can't possibly answer in any way that will make me feel better? Oh yes, because it's easier than accepting the idea that I am in charge of a tiny lunatic.

2. DON'T be surprised by the number of things that can end up in your toilet. This includes shoes, spatulas, cell phones, small animals, keys, and a whole eggplant that looks an awful lot like a human head to your middle-of-the-night eyes.

3. DON'T be surprised by the number of things that can NOT end up in your toilet. Number two, for example, can occasionally end up in your purse.

Related: 10 things you should NEVER say to your toddler

4. DON'T assume that repeating directions increases their likelihood of being followed. DON'T assume that repeating directions increases their likelihood of being followed

5. DON'T over-explain adult situations. "Sorry, honey. Mommy is just in a bad mood because she doesn't understand why she chose to make a living on the Internets. And taking out a second mortgage to fund your preschool appears not to have been the prudent thing to do. And wow, your sitter is expensive! That noise? Oh, that's just Daddy weeping through the wall."

6. DON'T say, "Let's wash your hair!" This is akin to saying, "Let's put this large needle in your eyeball." If you really feel like you have to warn your toddler about the upcoming sudsing, consider something relatively benign and tangentially related, like, "Let's put this large needle in your eyeball."

Related: 7 things toddlers don't actually need

7. DON'T wear a short skirt to a toddler birthday party. You know that fantasy you have about being unintentionally violated by giddy elves? Yeah, me neither.

8. DON'T let a boy shorter than the toilet try to pee standing up. Too late for that? Try not yelling helpful tips like, "Point your penis up!" Too late for that? Wipe your chin.

9. DON'T ask if your toddler if he wants to do something you need him to do. This includes Do You Want To Wear A Jacket? Do You Want To Eat Something? Do You Want To Hug Grandma? Do You Want To Wash Your Hair? and Do You Want to Keep Me From Running Out The Door To Jamaica?

10. DON'T try to catch vomit in your hands. A) It doesn't work. B) You don't get points for trying. C) You get vomit in your hands.

- Mira Jacob

Go here: http://blogs.babble.com/toddler-times/2011/11/10/what-not-to-do-with-your-toddler/?pid=1714#slideshow for the full 15 ways!

Quote of the day

"Can I have Plastic Surgery please?"

This greatly amused my colleagues as they heard me say it on the phone.  No, I was not requesting an expensive Christmas gift, but contacting the department at the children's hospital.  Emma has her annual follow-up with cranio-facial (aka Plastic Surgery) this week, as well as ENT, Dental, Opthamology and Genetics - all in one day!  

Unfortunately Scott won't be able to join us this time, but I don't expect there to be much news, although we are certain that Emma's lower jaw has grown and the overbite is smaller.

Yesterday I took Emma to the doctor, following her ear pain on Sunday night.  Sure enough she has an infection in one ear, but that's been the only one this year (if memory serves me correctly).  I'm not sure what that will do to our ENT appointment, but it's not worth rescheduling the whole lot.

One of Emma's Christmas gifts this year will be a portable DVD player, you know the ones that are like tiny laptops.  It would be perfect for this all day string of appointments, so I'm really having to fight the urge to just buy it now!  I guess I'll have to bring my phone charger and download a bunch of apps for her.

Something I'm really looking forward to is visiting the nurses in the NICU.  I'd love to take her in and show her where she stayed as a baby, but she is too young.  Hopefully we'll see Taryn and some others who remember Emma.  I can't believe it's been four whole years!

Party Pictures

Sorry to keep you waiting, here they are...

Emma turned to me and said "She's pretending to be my fairy Godmother!"


Everyone checks out the necklace the fairy brought

Then comes an even bigger surprise...


After the wig and gloves were gone, she came out of the corner...

"Duck, Duck, Goose" princess style!

Prince Charming and the fairy Godmother (aka Scott and Mrs Thompson)!

Quick change into one of the other dresses we got her...

A great time had by all!

Toby tries alternate rules...