A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Monday, September 27, 2010

Meterstone Monday

There are milestones and there are meterstones. Not quite a mile, but still moving forward, one meter at a time.
So here are some of our meterstones:

Sitting
sitting up straighter
sitting unassisted for extended periods of time
lifting arms up when sitting
reaching to side and turning upper body when sitting

Rolling
reaching to sides when on belly
lifting arms when on belly
superman flying pose
brings knees up/side when on belly
reaches up when on belly
moves in a half circle (both sides) when on belly


Puts some weight on feet when supported


throws toys
pulls off socks
picks up cheerios
pulls hair
waves
does high five

laughing, giggling
blowing raspberries
will make noises back and forth - 'conversation'
Will sometimes understand no

Has 4 teeth!
Has a schedule
Eats crackers, toast, noodles and anything he can find on the ground

All of these are big things in our household!
So way to go Nickolas! for showing off your newest meterstones!

And his biggest supporter...

As a PS - If you love those hats as much as I do (thanks Jill for the site) check out http://www.petalbabies.com/
Katheryn is actually wearing Nick's hat - she kept taking his off and trying to put her purple one on him!

Friday, September 24, 2010

A gift of spina bifida


It is easy to focus on what I am missing by having a son with spina bifida. (This is a followup to my last post - A Moment of Grief) When talking about 'a different kind of perfect' I might think and imagine what I am missing, how things are worse now that we have spina bifida in our lives. Concentrate on the worry, the appointments, and the hardships.

But thanks to a friend, fellow mother and blogger Joanna for reminding me that there are things that I have gained by having spina bifida in my life. I have been given a gift. Yes, you read that right. It might seem that gift is a strong word to talk about our diagnosis, but it really isn't.


It has brought me the gift of celebrating each little milestone, to recognize the amazing capacity children are born with. It has shown me that my child is stronger than I could ever be. It has given me the gift to realize that some things in life are important, and some things are not.

Spina bifida has brought me clarity.
It reminds me of when I first got my glasses. I commented to my mother that Now I could see the leaves on the trees when we were driving. I never knew before that I couldn’t see the leaves; I didn't know I was missing anything. But now that I had seen I didn't want to go back to the blurriness.
Having a child with spina bifida has given me glasses that I never knew I needed. It has opened up a life for me that I don't want to give up.

It has given me the clarity, time and opportunity to enjoy and marvel at little things (even during physio). To be thankful for every movement, every laugh, every smile and to marvel at the love that I see and feel every day. We celebrate each exploration of our world. I have less moments of mundane and more moments to bask in the joy of my son's accomplishments.

It has given me a voice to ask questions and seek current research. It has made (ok maybe I'm not quite there yet), I should say, it is making me into an advocate. Confident that I am a strong mother who has good instincts.


It has given me the gift to realize the strength of my partnership. That we have been to the bottom of the pit and have risen higher than we realized that we could. That we are stronger now than before we knew what spina bifida was. I have been given the gift to realize that we are four individual pieces of a puzzle that produces a beautiful picture.


 
It has brought me a gift of a family of mothers and their children that understand exactly where I am and what I am thinking. It has given me children that I have followed and will follow being born, growing older, rolling, standing, walking and running. I have found a whole community of people who have been there, and share their experiences to help you when you feel alone.

Let me finally say that it has given me to opportunity to realize how wonderful, loving and caring my family is. Who read about my moment of grief and reached out to see how I was. To reinforce their love and confidence in my ability to be a mother of a son with spina bifida.

So today I celebrate the gift of spina bifida. That I have been given many little gifts with this diagnosis that I didn’t know that I needed, but that I am not willing to give up. I do have moments of grief and negativity but these are more than balanced by gifts of clarity and love, moments of joy, realization of faith and appreciation of my many blessings.


OK hand me a tissue.

Thursday, September 23, 2010

A moment of grief

I caught a glimpse today. I tried not to, I tried to ignore it, but it still happened.

Nickolas, my happy and adorable child as a 10 month old, if at 28 days gestation his spine had closed. The glimpse came, out of the blue, when I was cathing him. We had just spent time outside playing, Katheryn was downstairs getting into who knows what. And the picture came.

Diaper changes without spina bifida, chasing a crawling infant, spending time relaxing and enjoying ourselves without appointments and forums and blogs, without scars and tubes and assistant devices. Yes the tears started flowing. Because if something had been different on that 28th day, then our life would have a completely different turn. I would still have my gorgeous and wonderful son, he would just be different, easier, more carefree; but he would still be Nickolas.

I wonder sometimes if parents of children with different diagnosis feel the same. Down syndrome, cystic fibrosis are genetic, something didn't happen during development they were created that way. So I feel guilty about what happened on that 28th day. Did I do something? Did I miss a pill? Drink too much tea? Have a hot bath or shower? Any of those things that they think might have caused that little bump in the road of development.

Of course I feel guilty even thinking these things. (And I love the forums and especially the blogs I read). And most days I truly believe that I am right where I am supposed to be. That things have worked out exactly how they are always supposed to be. I just didn't think that today, today I caught an image of something different, something that seems easier and more carefree.

I have a book called 'A Different Kind of Perfect' that has stories of parents of children with special needs. One of the chapters deals with grief. Grieving the child that you imagined when you found out you were pregnant.  I guess that this is left over grief. I wonder if it will ever go away, or if it will just fade into the background as I come to terms with our life. I actually had thought I'd come to terms with everything.

But while today brought a surprise need to reach for the tissues, I know that tomorrow I will once again bask in the joys of being the mother of two of the best children in the world! Just the way they are.

Wednesday, September 22, 2010

Sandbox Fun!

To enjoy the last full day of summer, we went outside and played in the sandbox. This was Nick's first time in the sandbox actually playing with Katheryn. He is sitting much better independently so I can leave him to play without holding him.


He liked outside the box much better than inside, and reaching in the play with the sand. And Katheryn really liked covering him with sand. I found a bunch in his ear! I had to make extra sure that there wasn't any sand left in between his toes.

But I think they had fun!

Saturday, September 18, 2010

Your wish is my command...



A couple days ago I blogged about wanting the feeling of Nickolas tugging at my jeans (you can read the post here). Well Nickolas was nice enough to comply. I guess I should have said that I wanted to be standing, or at least in,  my jeans when it happened!

Friday, September 17, 2010

Changes

Changes are coming. And they are supposed to be good.
We got a call yesterday saying that our name had come up for the wait list at Grandview (our local kids rehab centre). This is 15 minutes away from us, as opposed to the 1 - 1.5 hour drive to Bloorview where the spina bifida clinic is. This is the drive that I have been making at least every week to go to weekly physio appointments.

It's worth it, I really like Kim, our physio (I think I might have written about her before). And yesterday we were even talking about AFO's [ankle foot orthodics - braces for the ankle and foot] and a standing frame.  
Kim and I have discussed that there are various beliefs about a standing frame. Either waiting until children are able to stand, or helping them to stand to give them the feeling of being upright and the social connotations associated with being able to 'stand'. I like the idea of introducing a standing frame earlier so that Nickolas is not always lying down, being held or sitting. We discussed starting the process of measuring for AFO's before I go back to work in 2 months.

I am worried that this change, being called up from our 8 month waiting list is now putting this in jeopardy. We were getting things started, from my perspective giving Nickolas some independence and now this is being threatened. And I don't like it!

At the same time I recognize that maybe it isn't being threatened. Maybe the PT's at Grandview will be on the same page. Maybe transition will be easy and seamless.

We go on Monday to see PT [physiotherapy] and OT [occupational therapy] at Grandview. So I guess I have to wait until then to see how things will progress.

In the meantime, this is the newest thing that Nickolas has done.
It might not seem like a big thing, but he is rolling over to something and then reaching to get a toy - a big deal! And he's starting to attempt to investigate obstacles.

Oh yeah, and today was a better day. {if you have no idea what I'm talking about - see yesterday's post}

Thursday, September 16, 2010

Some Reality and Foot Stamping

For the last couple of months I can almost forget about what Nickolas is not doing. Forget is maybe the wrong word. I know what he isn't doing, what we are working on PT at him doing. Maybe it is really that I never forget what he isn't doing but I try not to look at what he isn't doing, and concentrate what he is doing.

Until I come face to face with babies the same age as he is. Babies who are crawling around, getting into trouble, coming up and pulling themselves up on their mother's legs. I want that.

OK I know that I am being unreasonable. That I will get that tugging at my jeans eventually. But I want it now! [insert foot stamping here]

We go to a friends house, with babies all the same age. 10 - 11 months. The other babies get put on a mat and are immediately off and crawling and exploring. Nickolas is put on the mat and he stays there, or rolls around but isn`t pulling himself up, isn`t playing with all the toys. Just playing with what he can get.

It just shoves reality in my face and won't let me look away.
I always thought that I had reasonable expectations for Nickolas, that I concentrated on what he could do and not at what he couldn't. That all that mattered to me is a happy child and mobility doesn't matter. I didn't quite realize how much mobility effects so much development and interaction at this age.

But as another fellow blogger mother has pointed out. He's not sad.

Yeah we're all laughing here.

Hopefully tomorrow will bring a better day. We've had 6 appointments (pediatrician, naturopath, opthamologist, repeat hearing test, urodynamics and physio) in the last 8 days. So I think I'm a little SB sensitive today. All the appointments went fine.

Tuesday, September 14, 2010

It's harder than I thought it would be

With a title like that, I could really be talking about anything, be it with our spina bifida journey or separate from it. When reading and imagining what all the hard stuff would be, this would never have even crossed my mind. I can do this, no problem. This will not be a challenge. I know the importance of this, and it will be on the top of my list.

So what is it? What is this simple-tough thing that I'm finding hard? OK suspense over. Not babying Nickolas. Not treating him like a baby and letting him do things.

I don't want to baby Nick, I do not want to treat him any different than his sister or cousin or any other child. But I think I might be doing it. He is moving out of the baby stage - he is 10 months old! and I'm afraid that I still consider him a little baby.

A prime example.
We go to the park, Katheryn plays with everything and Nick stays under a tree, lying on the ground or in his stroller. Because he's not mobile he can't play. I don't think I actually thought that, but that is still the end result. I have pictures of us at the park, and there he is, underneath a tree on a blanket while the kids are running around the playground.
Luckily I recognized this. So out he came from the stroller, I carried him around the park with me and we tried out some of the park toys.

We bounced on the bouncy teeter-totter thing, he twirled in this twirly thing and he swung on this swingy thing. This was a brand-new park and had a lot of things that I hadn't seen before (and obviously have no idea what the names of them are). A long way from the simple metal teeter-totter, metal slide, plastic S slide and swings that we had in our parks.

Nickolas had a lot of fun! And Katheryn had fun playing with him as well. The twirly thing was like a bucket on a pole. So Nickolas was able to sit in it and Katheryn and I twirled him around. He laughed so hard! His eyes were rolling around in his head because we got him really dizzy. I put Katheryn in the same thing and twirled her once - but she got scared and started screaming! But she had no problem twirling Nickolas.

They also had a large disc that was on 4 chains that you were able to lie on and swing. Nickolas lay on it and Katheryn liked pushing him and swinging him.
They had a little bit of R&R on the swing together as well.

So that is it!
No more babying Nick. No lying him down and setting him in the corner as other kids are able to be more active and play. Nickolas is still a baby (I think I'll always think of both kids as babies) but he is no longer a baby-baby.

Nickolas is growing out of his inactive babyhood and it is my job to ensure that he gets to appropriately play.
So we had a little speed bump and now I recognize that it will be harder to keep from treating him like a baby. But I like to think that I'm up to the challenge.


FYI I learned that when you go to the park do not dress your kid in dark blue or black. When Katheryn was running around and would get out of site and I was looking for where she was, the navy wasn't bright enough for me to identify her. I ended up looking for that little orange headband to keep an eye on her.

I have also learned that while Katheryn does not like twirly rides, she has no problem with climbing up ladders. But cries and screams when she gets stuck (4 ft off the ground)! Especially when I have my hands full with a poopie diaper and can't help her down. Thanks to that unknown mother who helped her down for me!

Sunday, September 12, 2010

A Bouncing Baby Boy!!



Nickolas is getting the hang of the exersaucer! He likes being in it now, and he actually BOUNCES!!!
Yes Katheryn likes to give him and hand, she also likes jumping up and down beside him and tells him to jump too!

I think he likes it because he is verticle, instead of being horizontal all the time. I just have to make sure that his feet are straight on the ground. But he can turn around the whole thing and plays with everything. Katheryn helps showing him what everything does.


The kids are playing together more. Together not just Katheryn bringing toys to Nickolas, or taking toys away. But side by side playing.

Tuesday, September 7, 2010

A Farewell to Summer

I always think of September as the end of summer, it doesn't matter if it's 30 degrees and humid and we are running around in shorts and tank tops. September means we are looking for that first red leaf, that fresh smell in the air and that nice refreshing breeze. I love wearing jeans all the time, and taking out my favorite sweaters and driving with the window down...

 I love the beginning of every season, but I think I especially love the beginning of fall. Fall is usually marked by the beginning of school - and for only the 3rd time in the last 28 years I am NOT starting classes. And that torch will be passed to the kids in the next couple of years (ouch). But for now, the beginning of fall can be marked by a special farewell to summer!

So we went to the beach! The last week of August my parents, the kids and I packed ourselves into the van and headed to Coburg beach, about 45 min away. This beach has beautiful sandy shores and nice warm Lake Ontario water at the end of the season and we had a beautiful hot, humid and sunny day.

Katheryn needed some coaxing to get into the water...


Nickolas needed to be dunked after he got overheated. Papa was happy to oblige...


A family picture didn't come out as planned. But who can get 2 kids to look at the camera at the same time, in a candid shot?! 


So thank you summer for some wonderful sunny and warm days, for encouraging me to get out of the house, when it would have been easier (and lazier) to stay inside. For warm water, beaches and cottaging fun, pool sides and outdoor parties, picnics and vacation time (so family can enjoy summer with us).

But I'm ready for some cooler, faller weather, where I don't have to worry about screaming and overheating children, or sunburns and of course the wonder of fall foliage.

Friday, September 3, 2010

More the same than different.

There is a SB group I go to the beginning of the month.

I really enjoy going. I missed it during the 3 month summer vacation. I enjoyed seeing how the other children are growing - when else is new with them, and with their parents. Our stories are mostly very similar.
What I like the best is realizing and watching how the kids remind me so much of Katheryn and Madison and other children I know. This is what Nickolas will grow into.

Everyone says how a child with spina bifida is more the same than different. And I do believe that. It just hit me that I could see it.
Sitting with other parents and their children, I didn't see braces or that they couldn't move their legs. I saw a child that was really interested in a specific toy, loved throwing balls, was exploring everywhere and who wanted to stare at the new baby.
I heard giggles and squeals and laughter.

I left the group uplifted. Sometimes getting caught up with milestones and developmental charts, worries and concerns it is easy to forget that at the end of the day, life is more the same than different.

Wednesday, September 1, 2010

Not wanting to leave maternity leave...

August has come and gone. That means that ... gulp ... fall is right around the corner. Fall means thinking about going back to work. I have never been so glad and thankful for the one year maternity leave. I’m not back until November 11 – it just seems to be creeping up that much faster. I said I wouldn't think about what I wanted to do until summer was over. September (to me) means summer is over - you wouldn't know it from our heatwave though.

While it will be nice to have some more adult human contact, I’m not that excited to go back to work. Then we’ll have to juggle the physio, doctor appointments, tests and my work schedule. And then there is the question of part time or full time? Going back to the hospital only, or apply to a college/university?

I just don’t know.

So far all the extra appointments hasn’t affected our lives that much. I just have to talk to Jenn (Katheryn’s daycare) about changing dates or times. No big deal (Jenn is an absolute Godsend!!!). But when I’m back to work I can’t just say yes I’ll take that first date. And I can’t get a consistent day off every week.

And we are doing physio once a week, OT might be in the future soon, hearing screening and whatever therapy might come from that, paediatrician appointments, urology tests, SB clinics and the SB group (something I am NOT giving up when I go back to work). Then we need to add Katheryn’s speech therapy as well. That seems like a lot, and it is not all the time, but these are just the appointments I keep thinking of when I imagine going back to work full time – and jamming all of those into my free time. Not to mention working on physio, speech and playtime at home.

No wonder I’m feeling a bit overwhelmed when I think about work!!!

I guess that is just the story of going back to work with 2 kids.

Talking about 2 kids....