A perfect summer day

We spend a day enjoying ourselves by the pool. Nickolas went swimming - was alot happier that the water was a solid 80F and not 72F like the last time we went in the pool at grandma and papa's. My sister and I hijacked the pool at my parents house while they were away and brought the kiddies to play! Katheryn liked being near the water, but wasn't that excited to actually go in. But liked throwing and catching the ball that auntie Laura threw in from the water. And Nickolas just floated on by. With me of course. We had a floaty thing he lay on, but I didn't really trust it, and his life jacket doesn't fit him. It is too long and chokes him if we do it up - the oppostie effect we want from a life jacket! Uncle Mike came home and enjoyed the fun too!

I am so amazed at my brother. He is quiet and seems shy, but he has really stepped up with getting involved with the kids. He doesn't complain when I hand off one or the other, and carries Nickolas around like a pro. All we have to do is get him to change and cath him! (Kyle tells me that as a male it is harder to cath Nickolas).

The next day, since we are enjoying being outside. I thought Nickolas should have an upright view of the backyard. He's not sitting by himself, so usually he is lying with me on the grass, or sitting in my lap (where we overheat) and enjoying the outdoors. So we dragged his corner chair and enjoyed the grass, the hot weather and watching Katheryn run around like a crazy person. Until the hornets came back and scared mommy back into the house. I did have rescue BOTH kids and the chair in my 'race' back to a hornet-free zone. Katheryn couldn't understand why we had to go inside, but when a hornet landed on Nick's toys and there were at least 6 others that I could count flying around I thought I'd been pretty good up until then. I didn't pick her up and run - but I came very close. (I'm a little bee-a-phobic).

When I was looking at these pictures on the computer I couldn't beleive I had a red-haired baby!! But he really looks red here - usually he's more platinum blonde.

Nickolas is doing soo well with sitting. He was almost upright and reaching up for toys and could balance for a little while as well - I'm going to have to get a picture - even video of it. And when he starts to topple he catches himself! Not that he's ready to sit by himself, but it's a giant start!!!

Yay! Go Nickolas!!!

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!