Finding a balance

I'm having a hard time some days to find a balance.

Since Nickolas has turned 3 I have found him to be (and I feel like a horrible mom to write this) a winy kid. He doesn't want to go up the stairs, he doesn't want to sit on the potty, he doesn't want to crawl, he doesn't like anything wet on his skin, he wants to be in this seat, or that seat, he wants his sister, he wants his mommy, he wants his daddy.
Nickolas has found his voice and know what he wants, and what he wants is to say no.
A lot.

At first I was thinking maybe this is shunt irritability? But it's not something that happens suddenly or all day, in between all of these no's he is happy and smiling and laughing and a great kid.
But I'm finding it a little bit difficult. I need to balance between listening to his voice and wishes/wants and letting him know that he can make choices, while helping him to grow. Maybe I'm expecting too much from 3 years old.

I don't remember 3 years old being like this with Katheryn. At 3 Katheryn would be having a meltdown and I could talk her down. It was great. I liked 3.
Nickolas went into a whole hyperventilating meltdown the other night because he couldn't have a lollipop before bed. I had to leave him on the bed to calm down because telling him 'no' only made it worse. He kept crying "I don't want mommy to say no to me" in between catching his breath.

All of that is just behavior, age, maturity I think. I can't compare Katheryn at 3 with Nickolas at 3, that's not fair.
Nickolas will get a time out when he is naughty, when he needs to calm down. But he isn't generally naughty and doesn't need many time-outs. Katheryn definitely wins that count hands-down.

But it's not just the tantrums. He's a kid, kids have tantrums.

But now I need to find a balance with mobility issues.
Nick doesn't want to crawl up the stairs. He wants to be carried. He used to love climbing the stairs with Katheryn, half the time he'd be up before we even knew he'd gone anywhere.
We readjusted our family room so he is able to walk and cruise around pretty much the whole room. That's where he wants to be. It's a step down and his walking doesn't fit so we haven't been using his walker a lot in the house. He doesn't want to walk up and down the hall in a line with his walker.
Sometimes I don't know what to do.

In the evening Nickolas wants to be with me all the time, it's hard on him when I go off and work nights, or I'm on a long stretch of shifts. Just tonight he was standing in the family room, crying for me to come and get him. I was ignoring him. Not answering him when he was crying that he wants me.
Trying to get him to come to me.

I feed into this, I know. I need to work on it. It is easier for me to carry Nickolas down the stairs in the morning and put him in his seat for breakfast. But I'm missing a prime opportunity for him to move himself, just because in the morning we always have time constraints.
I think this has to be a goal for me, and for him.

Because I really need to find a balance. I feel that we are in a rut at home.

3 years!

How did my little boy become 3 years old?
I'm not quite sure, but there he is.

A little boy who shakes that bum to the Handy Manny song

Who loves it loud!
And loves to drum and sing at the same time (at the top of his lungs of course)
His favorite song right now - Twinkle, Twinkle Little Star 
or if he is in a pirate mood - Row, Row, Row your Boat

He is a big boy who will still share his brand new toys with his sister
Or will very sternly tell her no (until he's ready)

Is excited to ride his own school bus next year
Even if mommy is a little unsure.

He is a little boy who can watch his favorite shows over and over and over and over again
And was super excited to have a personalized message from Jake and his crew!

Who can't say the word 'bath' without needing to go upstairs immediately

Pretty much ditto for 'Hot dogs'

A little boy who didn't say very much a year ago, but now talks in 10 word sentences!
And he has such a little attitude!
"Don't want mommy say NO to me!"

Who wants to give the penguins at the zoo a time out ( to come and swim near his window of course)

3 years has brought me a boy who can have wicked temper tantrums
And he does not like time outs (luckily  he doesn't need them that often)

But he is still a little boy that loves to hug ... really tight

Who crawls and talks in his sleep - but looks so innocent when he's sleeping

Who drinks A LOT of chocolate milk

I have a little boy that loves to explore and investigate before playing
He was excited that this figure has a wheelchair - "just like me!"

Somehow I have a boy with big boy feet
Just look how big they are!
(They always just seemed so tiny!)

Somehow my little boy has turned into a 3 year old that has attutude, strength, personality all with a spark of silliness and the desire to see people laugh.

If this is what 3 years brings me - Bring it on!

Happy Birthday Nickolas!
You have brought such wonderment, amazement, joy into my life.

In 3 years you have changed our lives forever. And I wouldn't change a moment of it!

A Pirate Birthday Party!



Nickolas has been obsessed with being a pirate.

 

And I have been encouraging this obsession. So we had a pirate Halloween, followed by a pirate birthday party! Complete with the need to dress up (I do love my dress up parties - remember Katheryn's birthday tea party?)

There is a new Disney show called Jake and the Neverland Pirates.

One of the parts of the show has the Neverland Pirate Band singing songs - including this one Never Say Never to a Neverland Pirate!

There is nothing that you can't do! Definitely a motto I want to take to heart 

 

So Pirate Party here we come!

We had a big pirate ship balloon - that Nick just wanted to stare at!

Some more pirate decorations

 

For the swashbucklers who didn't come in costume - we were all ready!

And for the added authenticity - a whole pile of temporary tattoos!
We tried to put some on Nick, he completely freaked out and said he didn't want to be a pirate! (30 minutes before a complete pirate-themed party)

 

 

Katheryn liked the tattoos (even if she doesn't look very happy)

 

 

And if only I had a pirate ship lying around somewhere for kids to play with?

Oh yeah, I do!

 

My only rule for the pirate ship - they cannot destroy it before the party!
(and yes both kids are in there)

Then it was time for our costumes!

Even Sammie got into it!

Baby "peter pan" is wearing the pirate hat

We even  had a couple of pirate grandma's!

Somehow we were too busy for a pirate family picture - but this is what I got

Better than a bouncy castle!

We had some quiet time to open some pirate presents

Nick got something he's been wanting for a long time!

Now he is a real pirate rock star!

(and I anticipate posting some concerts)

 

 



The base for a birthday party of course came with the birthday cake!
I had the idea for it for a couple of months (and it turned out great - took me forever to find the right characters to put on it - never did find the right boat)

But Nick didn't care, he thought the cake was great!
Was a little unsure about blowing out the candle...

Then we had a very tired little boy.

Until the sugar rush started, and then he was good for round 2!

3 years

It's been 3 years.
3 years since d-day (diagnosis day). Actually 3 years isn't for a couple of days - July 16th I think - but this is Friday the 13th and I thought it was appropriate.

I don't know how to mark the worst day of my entire life.
Except maybe to show other parents that the worst day of their life can't turn into the greatest joy they can know. And review a bunch of past pictures...

A couple of words in a doctors office doesn't describe what life having a child with spina bifida will be like.

The waiting, and wondering and worrying before the big day!

The introduction and realization that he is actually here! In your arms!

The unbelievable, I-didn't-know-my-heart-was-this-big, kind of love

On d-day you can't imagine the joy you hear in the first sound of laughter

The words 'spina bifida' do not describe my little heart breaker

It does not define the things that he can do, or when he will do them.

A diagnosis doesn't tell you the incredible bond he will have with his sister

Or how beautiful your child will be.

Thinking about d-day gives me an opportunity to go through all of the wonderful things I didn't think I would have 3 years ago.

An all-around fun kid!

Who sometimes needs some encouragement, but really just redefines spina bifida every day.

Who is just a little nervous about trying out new things (like the first time he was upright by himself - December 2010)

How a mothers touch can make all the difference, even when you feel you are powerless

They don't tell you on d-day how much your child will love the bath tub and bath time

And waits until everyone is watching before showing off (standing for the first time unassisted - Feb 2011)

And is so proud of himself!

The diagnosis of 'spina bifida' doesn't mean that you won't have a trouble maker on your hands!

Or a silly monkey - with a quirky sense of humor!

A little boy who loves animals and learning about new things

And LOVES, LOVES, LOVES chocolate!

On d-day all you can think about is how your child will be different from everyone else. But that's not true, he will fit right in with your family.

Until he wants to stand out and show he is his own little boy!

And that he really, truly is the coolest boy in town!
(Even with geeky parents)

With a family who only wants to see him smile, even when he is sad

And will light the way on whatever path he wants to take

Spina bifida (and d-day) will show you that you are stronger than you think you are (October 2011 - outgrowing his stroller)

and will help you have an open mind about things that you were always worried about

On d-day you realize that you life has changed forever. But as long as you keep moving forward with a smile on your face you will get to where you were meant to be.

And there will be love

And there will be laughter

And the rest just slides into place

3 years after d-day I only wish that there had been more awareness of what spina bifida truly looks like when we got our news

And somehow in 3 years (OK almost 3 years for this picture) we went from this...

To this...

And I wouldn't trade this craziness for anything!

Anyone wondering about how life will be after d-day should check out this borrowed post Sometimes the Doctors are Wrong Thanks to Jamie for collecting all of these stories in her blog!