What does perfect mean?

The perfect child. This is what everyone dreams about.

When you get the diagnosis of spina bifida, you think that the perfect child is shattered. You mourn that perfect child, you mourn what could have been. I don't like admitting it (even to myself) but sometimes I wish for that perfect child. That I could have normal baby worries, that I could dream of a future without braces and assisted walking devices. That I could have the dreams and worries that my parents had about me. That is would be easier.
BUT...
What does perfect mean anyways?

Is Katheryn perfect? Yes, I think she is. With her tiny size, her puking, her language, her finicky eating. Yes I still think she is. Is Nickolas perfect? I do hesitate, (there are so many things to think of when I write this). Yes he is perfect too. With the spina bifida, with the worrying and the anxiety. Yes I still think he is perfect. And I don't think I need to defend this.

What does perfect mean anyways?

Is perfect the child that comes into the world, naturally, with that first cry, nurses no problem and then falls asleep, to wakes every 3-4 hours to nurse and be changed. The smiles at 6 weeks, laughs soon after, sits on time, babbles early, rolls over ect. Pretty much reaches all milestones on time without causing the parents a night of worry? What about beyond? Is perfect that 50th percentile child that isn't too skinny, isn't too chubby. Has all kinds of friends, comes in when the street lights come on, doesn't talk back, only has nice friends, loves school, loves sports and does well in both, is never sick, doesn't talk back. Wow, that puts alot of pressure on a poor baby, and parents.

What does perfect mean anyways?

For me, perfect means happiness. If I have a child that can grow up to be happy, then I think this means perfect to me. I don't always mean that smiling, laughing child (that is nice), but it goes beyond that. In school we learn about quality of life. A happy life. Perfect has such societal connotations to it. Why do things need to be perfect? Nothing is ever perfect.

So perfect means whatever my kids turn into. I am not perfect, not even close. But that doesn't make me any less loved and happy and myself.

But... I wanted to learn about SB

Anyone who followed my posts last month probably notices that I did a Learning about SB 'series'.
I've moved it to it's own blog. http://www.aboutspinabifida.blogspot.com/ it is also a link on the side of this page. I hope you enjoyed it!
I plan to hopefully add more infomation to that site. My final plan is to make up a powerpoint presentation that I can present. But I might be getting ahead of myself (surprise, surprise).

Update!

We had a couple of appointments in the last couple of weeks. All with good news.
Nickolas got the all clear from neurosurgery. We were in and out in 30 minutes. Everything is looking great and we will go back in 1 year and get a followup MRI at that time. YAY!
Physio is going well, he is improving so much. He keeps trying to sit up, work those abs, and when he is sitting up it is much more solid. He used to sit very far forward, with his belly resting on his legs, now he is still leaning forward, but off of his legs and twisting around. All very good progress.

Katheryn got her language assessment. She got admitted to their service. I was concerned that they were going to say that she was ok. I know it sounds weird, that I want someone to say that my daughter is behind in something. But when they recognize it, it gives us help. So we had the assessment and Katheryn's language is at a 21 month level - 6 months behind. I'm amazed at how much she has improved in the last couple of months. And I am very glad I asked for an assessment at 18 months - when I found out that she was a little behind - because after an 8 month waiting list we finally were seen! But now the real work starts!

Whenever I think about how I want Nickolas to sit up by himself NOW, roll over more, start to crawl ect. I want it all now. I'm finding we are progressing, just not fast enough. But it will come. It is the same with Katheryn's language.

So yes both my kiddies gotta get some kind of therapy - my mom tells me that I went to speech therapy, and she is so much like me that I'm not really that surprised. Or worried. I guess that is the key, when to be concerned and worried and when to take things in stride and just go with the flow. We are busy flowing down the river right now!

Family Time

We need to schedule some family time, I guess with Kyle being home so much we always have family time. But we needed some stay-put family time. We are a bit over-booked as things stand anyways. So we had relaxing no-travel time for a couple of days and just stayed home and vegged. Of course by vegged I mean, I tackled the gardens - where weeds have taken over, vaccuumed, vacuumed again, did laundry, cooked, and packed for the next trip out of town. Because we are really busy on the weekends, cottaging, visiting, and our latest trip was to Ottawa for the weekend.

But then last weekend we headed to Ottawa - a 4 hour drive, for a surprise party, visiting time - and then heading back home again. The trip was very fun, we love visiting our Ottawa family. All of the kids get together so well. The kids did well on such a long trip, even Katheryn was able to travel puke free. She inherited her car sickness from her Daddy and so a 4 hour car trip was met with a type of dread. But some gravol and careful driving and things stayed where they were supposed to.

 Nickolas got his first taste of chocolate cake. Katheryn enjoyed feeding him from her (2) peices of chocolate cake that she had stoled from various plates. He really enjoyed the crumbs that he got. But was a bit shocked that he got caught!

I'll have to upload some other pictures. We stopped off at Tweed on the way home so that the kids could have some out-of-car time. It was just my parents and me and the kids because Laura, Mike and Jen decided to get lost. But Tweed has a nice lake beach that Katheryn loved running in and out of, and Nickolas just lounged under a tree, doing - what else - eating.
They had alot of fun (during the day) - and that's the important part. The night was a bit of a treat - think Katheryn getting caught under the crib, screaming for a couple hours, Nickolas waking up. I think we scared Laura away from children for a while. But we did get a couple of hours of sleep. And would totally do it again - hopefully without the rolling!

Golf Weekend and Canada Day

It was the annual golf weekend. Pretty much where we have fun, hitting some balls and hope they get within a fair distance of the hole. We (our team) is not there for the glory of the game. We are there to have fun with the cart, drink alcohol (well the other girls did) and an excuse to just have fun! We succeeded - we got 7 over!!! Kyle and his team won, with 3 under. So Nickolas got to wear the trophy hat! We have a picture of Katheryn and Kyle doing the exact same thing. - Kyle is a much better golfer than I am.

So Nickolas the flirt was in fine form. He was the centre of attention and LOVED IT! Being surrounded and adored by a bunch of blondes (yes I still think of Laura as a blonde even though she's a red head now). But batting those huge blue eyes at all the girls! And he knows he has it too!

We stayed at the cottage for 4 days, and it got nice and sunny and hot while we were packing the car! But it's nice being at the cottage, fresh air, family. And the kids just eat it up! They still enjoyed the water even if it was a little cold for the adults. We had a bit of a rough first night - mostly because Katheryn rolled off her bed (which is on the floor) and got stuck under our bed. Nothing like being woken up at 3am with a screaming toddler, and you are scrambling around in the dark and all you can feel is kicking feet sticking out from under the bed!!! Once I got her all calmed down, Nickolas woke up. BUT other than all of that, the weekend was nice and relaxing.

Here are some pictures of them just playing together. It is so nice that Nickolas can sit around, either in his bumbo or corner seat and then Katheryn is so much closer to him, he can be part of the action and the action - in the form of Katheryn - is not very far away from him.

Because I'm so late posting - I might as well include Canada Day as well - it seems all the days go by so fast that if I don't keep on top of my blogging I just need to squish everything together.

Happy Canada Day everyone. I took some days off to deal with some kiddies that were a bit tired and grumpy. We missed fireworks because Katheryn was a bit under the weather. But she's still young. We'll just have to have some fireworks for the August long weekend! Nickolas didn't really care either way. I don't have any Canada Day pics of Katheryn, but here is Nickolas wearing his red!