Saturday, August 28, 2010

Well, it happened

I knew it would, it just hadn't happened to me yet.

We were at Target. Emma was in the stroller.

As we were walking up and down the aisles, there was a family we kept encountering with 4 boys between the ages of 7 and 9 (judging by their ages and races, I'm guessing they were not biological siblings). The man and woman with them seemed to be good parents, but they were busy.

One time, when I passed them, I heard one of the boys excitedly tell his brothers, "Hey! That baby is a freak!"

I turned the corner and blinked back hot tears.

At the end of the next aisle, one of the boys peaked around the corner. He had the look of a boy who was disobeying his parents, probably on a dare from another boy.

"Hey," he yelled at me, "your baby is a weirdo!"

Then he ran away.

I felt my face flush. I made a conscious effort not to cry. I heard the mom one aisle over doing her best to reign him in. I'm not sure if she heard him or not, but I'm sure that she heard the first comment because I heard her trying to tell the boys that they weren't being very nice.

I got ahold of myself while I was in the freezer section, but then I had to go back the other way and I knew I was going to find myself in the same aisle as this family soon.

So I swallowed and walked right up to the woman.

"Excuse me," I said, "Would your boys like to meet my daughter?"

She breathed a sigh of relief and very cheerfully said that sounded like a great idea!

So I introduced Emma. I told them that I had heard them notice that she was different. (At this point they started pointing fingers and tattling about who had said what). One boy decided to try to defend himself by pointing out that she drools a lot.

I said, ""You're right, she was born with something wrong with the inside of her mouth. She's different. But she's happy and she loves her big brother and she smiles and we love her very much."

I picked her up. "Would you like to say 'hi' to Emma?"

They said hi, still a little unsure of whether or not they were going to be in trouble.

But then, of course, Emma noticed the father's sunglasses on his head and reached out for him. His heart completely melted and I said it would be ok if he wanted to hold her.

He smiled and snuggled her, and asked how old she was. I said she was almost two.

One of the boys said, "She's so little!"

I smiled and said, "Yup!"

At this point I turned around to see that one other couple and another woman were standing behind me, watching all this. They all immediately started talking about how cute Emma was.

I was a little self-conscious at this point; it wasn't my intention to draw a crowd.

The dad could see that I was ready to be done, and he handed Emma back to me, thanking me and saying something about how important education is.

I started to say good-bye and the mother pulled me aside and thanked me and stumbled around saying that she had tried to tell them that they weren't being nice.

I told her that it was ok, that they are just kids who don't know what to do with something they haven't been exposed to before.

She said I had a beautiful daughter.

sigh ...

Tuesday, August 17, 2010

Parenting as a Competitive Sport

Charlie loves to get his haircut at this kid's barbershop that has toys and bubbles and stuff.


Unnecessary, I know, but he likes it.


When you walk in to wait to get your child's hair cut, there is a little table and chairs, a toy bin, and a TV playing a Pixar movie.


Last time I was there with my kids, there were several other mommies there with multiple children waiting to get their hair cut.


We walked in and Charlie surveyed the scene. There were 3 children sitting and coloring at the table, 2 children sitting and reading with their mommies, and a large open area next to the toy bin.


Charlie walked up to the toy bin and pulled out a little plastic bowling ball and 5 pins.


He set up the pins very neatly next to the wall (in the obvious place where such activity was supposed to happen), took aim with the little black plastic ball, and knocked over 4 out of 5 pins.


They did not fall silently.

Charlie was thrilled.


And I got dirty looks from the other mommies there.


But just as I was about to tell Charlie "No more bowling," I realized something:


Every other child in the shop at the time was a girl.


A 6-year-old girl was quietly and sweetly coloring with her 4-year-old sister at the table, undeterred by the sound of plastic pins (not to mention the sound of Aliens fighting the Monsters on the TV screen above them ...)


And their mother looked pretty convinced that she was a better mother than I am because HER children were quiet and MY child just knocked over 4 out of 5 plastic bowling pins.


At least, I think that's what the dirty look communicated ... but the point isn't made any less if I am just projecting that feeling ...



I think moms of boys feel pressure not to let boys be boys.



Now, I am NOT talking about saying "boys will be boys" as an excuse for poor behavior. Anyone who knows my family knows that Charlie has VERY well-defined boundaries and he has a reputation of being a pretty well-behaved kid.



But he is a BOY


And I am a girl :) but that's another post for another time ...


It's just that sometimes, I think we as parents don't exactly focus on parenting the child God gave us as much as we focus on the APPEARANCE of parenting the way we feel peer pressure to do so.



I've been thinking a lot lately about making sure that I NEVER discipline Charlie for the sake of those watching. If Charlie is within the boundaries I have set for him and he is respecting his surroundings and the people he comes in contact with, I'm not going to ever tell him he can't be a BOY just because another mother gives me a dirty look.



God matched me and Charlie perfectly, and I am not going to be a good mom to Charlie if I don't respect the heart and person God CREATED him to be. I, BECKY, am going to mother CHARLIE the best I can.



Which is actually kind of freeing, because it allows me to realize that maybe another mother is parenting her child with respect to that child's heart the best she can, too.


Discipline is important. We are called to train up our children to respect and honor us and the Lord and we do NOT spare the rod or spoil the child in this house.


But I decided today that even if Charlie tells his friends at church that he would like to be called Maximum Destruction today because that's his favorite monster truck from when he and Daddy went to Monster Jam ...


that's ok :)






























































































































































Friday, August 13, 2010

i'm so proud

I really need someone to install secret video cameras in my house or something. :)

Emma is doing so much communicating and playing the past two days, but I can't catch it on video because as soon as she sees the camera, that's all she wants!

So you'll have to take my word for it.

Unless she's distracted, she is consistently waving back when I wave to her. Like, her little fingers open and close. Most of the time when I wave to her, she waves back at me briefly and then sits and waves to herself ... which is pretty cute, too :)

She's also playing clapping games back and forth with me.

And the one that warms my heart the most is that "Mama" sign, which seems to be evolving to be used sometimes to get my attention. Like when we were at the bookstore today looking at children's books and I was trying to pick out a new Waldo book for Charlie. Emma was on my hip, but apparently I was taking too long in the Princess's opinion. She started signing "Mama" and then when I said, "Yes? Do you need Mama?" She just waved "hi" and smiled. Be still my beating heart!

It makes me feel so much better to know that she's feeling so much better since we discovered the formula mix-up. We're still keeping an eye on some watery stools (a total of SIX yesterday, to be precise!!!), trying to return her formula feeding back to normal but still giving some pedialyte to keep her hydrated enough while her GI recovers, and she's still coughing a bit more than I would like, but I think a little TLC is all that's needed to get this little Bear back to full health.

Thanks for your prayers and encouragement!!!

And an update for those of you who follow our Facebook goings-on: Ella Grace, who also has CdLS, passed her sleep study! YAY! This is incredibly significant for her family, as it means that she no longer needs her trach. Click here to learn more about this sweet girl and her amazing family.

Thursday, August 12, 2010

in which becky hangs her head in shame ...

If you've read my most recent post, you'll see not only the usual typo's, but also something for which I should probably apologize.

Our visit to the developmental pediatrician was certainly positive, but PLEASE don't think that my insensitive "blah blah blah" comment means that I take that for granted!!

Believe me, if I have learned nothing else from this journey, it is that we should never take ANYTHING for granted.

We are so thankful for Emma's health.

And we are so thankful for every crawling step, every sweet sign, and every joy-filled giggle.

I was frustrated, I'm sorry.

Forgive me? :)

Tuesday, August 10, 2010

Emma's poor tummy (updated)

We had Dr appt #2 today ... developmental peds ... Emma's a rock star, blah blah blah

NOT that I'm not grateful that she's doing so well developmentally, but that fact has been a little over-shadowed by the other events of today.

I AM SO FRUSTRATED I'M CRYING RIGHT NOW!!!

Emma's retching has been getting REALLY bad over the last week or so. Like, she retched yesterday after only 30 ml (1 ounce)!

So last night we put her to bed and prepared ourselves for a sick Emma. Sure enough, she was up quite a bit last night retching. We even turned the pump off and prepared a bag of pedialyte.

This morning, Emma woke up and smiled at me. She doesn't have a fever. She's not acting sick, other than the fact that she's been retching every 15 minutes or so all day, even if her tummy has nothing but 10 ml of pedialyte in it!!

I called our pediatrician's office as soon as they opened, and they said they can't get her in until THURSDAY because so many kids need physicals for school. ARGH!!!!! So I left a message, asking a doctor to call me back.

Meanwhile, I went into the kitchen to prepare some very dilute formula, assuming Emma was very sick. I looked at her formula can and was very surprised to see that our company SHIPPED US THE WRONG FORMULA last week!!!!

1 can of Emma's usual pre-mixed formula contains 250 calories. This can said it contained 375 calories!!!!

I AM THE WORST MOTHER ALIVE - why didn't I notice that?!?!?!

I've apparently been over-feeding my daughter by quite a bit for the last WEEK! Not to mention the lack of water ... this formula, that we have been giving the usual amount of, is 1.5 times more concentrated than her usual stuff, but I didn't notice the mistake until today!

And now I feel like her GI system has just thrown up the white flag of surrender!

So I called her supply company and explained my discovery.

And as a side note, I'm pretty frustrated with myself about this point of the story, too: I apologized to our supply company! I was frazzled during the last phone call I made to them when I was placing our order, and I was trying to ask them to send us a different toddler formula with prebio in it, so I told them that I was really sorry if I had confused them during that phone call. The dietitian confirmed that, no, we were sent the wrong thing and that we have indeed been feeding her way too much formula for the concentration we received.

They arrived a little bit ago to switch out for the correct formula.

And then, 5 and a half hours later, Emma's pediatrician's office called back (her actual ped is out of town, of course)

The suggestion from them is that I should just try to return to our normal feeding schedule and call them back if she's not tolerating it.

SHE'S NOT TOLERATING 20 ML OF PEDIALYTE RIGHT NOW!!!!

Which I politely explained to the nurse who called and she said that she would have a doc call me back.

That was an hour ago.

Poor Emma! She is dependent on me to give her the right amount of food and water and I let her down.

So I'm having kind of a bad day ...

Update: I spoke with an actual doctor finally! She suggested that Emma be on pedialyte for the rest of the day and overnight and then tomorrow very very slowly introduce her formula back. It feels much better to know that she took Emma's retching seriously and is being cautious with her little tummy.

However, Emma has suddenly developed cold symptoms. Please pray that it's actually a cold and not pneumonia from aspirated reflux?

Thanks for all your encouragement!

Monday, August 9, 2010

Dr Appointment #1 for the week

We went to see an orthopedics doc today to determine if anything needed to be done about that arm X-ray Emma had a couple of weeks ago.

The short version of the story is that Emma's arms and hands are, indeed, different, but the doctor doesn't see a need to try to do anything about it right now.

One of the bones in each of her forearms doesn't join up with the elbow quite right, but it's not a crisis. She just won't straighten her arms completely. No big deal.

And she has small thumbs. After watching Emma play with some blocks, the doc said that Emma's pincher grasp is a little weak. She also noticed that Emma often grabs things with her thumb and middle finger instead of her thumb and first finger. This leads her to believe that maybe there's a muscle missing for Emma in that mass of muscle that pads your palm next to your thumb. (Look at your hand with your palm facing you. Right next to where your thumb connects to your hand there is a big soft pad full of muscles. Emma's palm is a little more flat, which probably means her thumb is going to be a little weak.)

But what's cool is that the doctor watched Emma play and seemed to think that Emma was doing a good job of working around her differences in this area, so she didn't think anything needed to be done about this.

It's always hard to hear someone describe a way that Emma is different, but I'll choose to take this news as positive, that Emma is doing a great job of overcoming yet another cute little obstacle :)

Thursday, August 5, 2010

A Crystal Ball day

I'm having a Crystal Ball day today.
Some days I just want to KNOW!
Will she ever talk?
Will she ever tell me she loves me?
Will she be able to ...
I sort of get myself into a place of coping where I assume the answer is NO, and then I enjoy a pleasant surprise.
But occasionally I allow myself to fall into the temptation to daydream.
What if she's developing totally typically, just in slow motion?
But then the daydream bubble bursts, and the hangover is usually a nightmare, where I entertain the other options.
What if she has terrifying behaviors?
But then what I say out loud is, "she'll either eat or she won't."
We'll do our best to maximize her potential.
But whatever happens, my Jesus will be there.
HE holds the future in His hands.
But some days I just wish He'd give me just a sneak preview?
No?
Oh, well. Can't blame me for asking :)