Welcome

. . . in all seriousness, thanks for stopping by! This blog will no doubt evolve over time, and will include all sorts of content. My aim is to let you know what we're doing as a family, how I'm coping as the mum of a child with Cerebral Palsy, and a variety of other things too.

If you are the parent of a special needs child, I pray that you will find encouragement, hope and support within these posts. I'd like to get to know your story too, so be sure to leave a comment.

I hope you'll come back soon.



Thursday 31 May 2012

Through the Lens Thursday

If you've been following my blog for a couple of weeks, you'll know that usually I do a Wordless Wednesday with photos on topics from photoaday via chantelle of fatmumslim.  So where is this week's post?

I've been thinking that it wasn't working the way I wanted it to, and have been wondering what to do to change it up a bit and make it more me.  Driving to work this morning, I figured it out! I'm still going to use the subject list from photoaday, but I'm going to do it weekly on a Thursday AND it's not going to be wordless anymore.  I want to share with you the story behind the photos.
something new {what's something new in your life?}
It's starting to get cold here, we're getting a frost most mornings.  The boys and I have been enjoying curling up on the sofa with this gorgeous quilt, made by my friend Deb.
unusual {share something a little odd or weird}
There is so much deconstruction happening in the city at the moment, however, this is still not the sort of thing that you would see every day.  A crane holding a steel beam with some kind of mesh which was used as part of the internal make up of the building.  And check out setting sun reflecting on the clouds.

12 o'clock {take a photo at noon or midnight, whatever you're doing}
Saturday morning rugby was later than usual, meaning  a nice sleep in for mum!  Isaac loves going to watch Reuben play rugby, cheering him on, messing around on the grass.

something sweet {a candy/lolly, a cake, a person, something cute ... }
Hot chocolate, trim, extra strong ... I don't drink coffee or tea.  If you're a barrista and I order a hot choc from you, you better make sure that you get it right!  I'll send it back if it's not.  You think I'm kidding?

 
the weather {is it sunny, rainy, cloudy? Shoot it!}
Because we've been getting frosts most mornings, we've been getting lovely sunny days.  I don't mind this kind of winter.  I'd much rather have frosts and sunshine than dull and grey.

a number
There are so many of these around the city.  I drive through at least 6 sets of road works in my 15km drive to work each day.

personality {show us your personality in a photo, a word etc}
Does this little dude have personality or what?  He's also really really good a making a mess eating his yogurt!  When there's a huge mess to clean up, I often need to remind myself to pause and be thankful that he can feed himself and in fact that he is able to eat food fullstop.

So that was this weeks Through the Lens Thursday, let me know your thoughts.

Friday 25 May 2012

A Beautiful Gift From A Beautiful Friend

Yesterday I met a friend for lunch.  We'd arranged to meet a couple of weeks ago but ended up having to postpone.  I almost put it off again as I hadn't been at work most of the week 'cos Isaac had a tummy bug, and I couldn't really afford more time out of the office.  But I just knew that I had to keep this appointment.  I am so pleased I did.


To my utter surprise (and delight) she gave me a beautiful quilt.  I had tears in my eyes when she told me the story behind the quilt. Deb is a fellow Christchurch blogger and will tell the story a whole lot better than I ever could, and her photos are gorgeous too.  Here's Deb's post.  I've just realised that the quilt has lots of the colours that I love in it, which is remarkable because Deb uses lots of bright happy colours and she often uses lots of yellows and oranges in her quilts (I don't really like yellow or orange).  Blue, red, pink, black and white, are definately my colours!

We had such a nice lunch - I really should try to get better at remembering to take photos - the cafe was so cosy and the food was delicious.  We talked and we talked.  We talked about blogging and Deb gave me a couple of helpful tips about my posts.  We talked about the earthquakes - Christchurch had another 5.2 today. Apparently we've had 41 earthquakes with a magnitude of 5.0 or greater since September 4 2010. And we talked about raising a child with special needs, negotiating the corridors of the Champion Centre, and dealing with the uncertainty that it all brings.

I feel blessed to have met such a beautiful, generous friend.


Wednesday 23 May 2012

Wordless Wednesday #4

Ok, so I know that it's basically Thursday, and I've already done one post today, but I didn't want to do two Wordless Wednesday's in a row.  That would have meant that I hadn't actually done a post in the past week.  On top of that I was ready to put pen to paper (fingers to keyboard - just doesn't have the same ring to it) and let you know what was going on.  Truth of the matter is that I forgot that it was Wednesday when I did my previous post, LOL. I know, I know, Sssshhhh.




Snack, Something you made (and isn't he CUTE!)
A favourite place, Something you can’t live without
Where you stand, Pink (merino and really warm)
Technology (new phones for everyone at work)

Tuesday 22 May 2012

So Much to Process

I feel like I might have been MIA this past week.  There has been so much going on and I've just needed to take some time to process my thoughts and feelings.

Last week Isaac started his Early Intervention program at Champion Centre.  I had a function to attend after work that same day, and decided that I would drive home a different way to normal.  I had heard that one of the main one way streets through the central city red-zone had been reopened, so thought I'd go that way to see how different things were.  Work has been crazy busy - but I'll leave it at that as I'm trying to avoid putting work related info on my blog, due to the sensitive nature of my role in the company.  My weekend was not spent doing the things that I wanted/needed to.  And then yesterday was our (I mean Isaac's) second session at Champion Centre.

I'm not quite sure what I was expecting from Isaac's therapy sessions at Champion Centre, but the first one wasn't how I imagined it to be.  Part of my wave of emotional feelings came from thinking about what could have been with Isaac.  His disabilities could have been much more severe than they have shown themselves to be to date.  I don’t want to compare him with other children with disabilities but in a way I can't help it.  I know every child is an individual who progresses at their own pace, the ones who have special needs even more-so.  I'm relieved and thankful that Isaac can eat and drink, that he is able to communicate with us and can sit up on his own.  His independent walking is improving.

Amazing how we adapt to any situation we're put in, and how quickly we pick up the phrases associated with that situation.  I'm now talking about Isaac's independent walking rather than his walking.  Who knew that I'd want to be so specific about what I was referring to when I was talking about walking?

I was also thinking about what could have been if we hadn't had the complications in Isaac's birth that lead to his Cerebral Palsy.  Phil was probably the one who started this as he was talking about what Isaac will do for a job/career when he grows up.  Whether he will get married, or if his temperament will mean that he won't get to go out with the girl he wants because he is too nice and stands back when another boy likes her.  I hadn't gotten past thinking about how he will be when he gets to school.  Will he be in a regular class, or a special needs class, or a combination?  Is the after school and holiday program that Reuben attends going to be able to accommodate Isaac?

There were a few of the activities that Isaac did really well at and that had me wondering if he really should be at Champion Centre, or whether the other parents would wonder how we'd even managed to get in.  I know that it was done through the proper channels and that he wouldn't have been accepted if he didn't meet the criteria, but still....

I was a bit emotional after I took Isaac to preschool, but needs must and I had to go to work.  After the function that I needed to attend, I drove home via Madras St, which has only recently had it's red zone cordon lifted.  It was quite surreal driving up a road I've driven hundreds if not thousands of times before, but this time there were so many cleared sites I struggled to get my bearings, even though there were street signs all the way (and I am able to read maps!).  I drove past the sites of CTV building (which had the largest death toll in the quake), a couple of churches (one of which is now an artwork site covered with white chairs of all shapes and sizes), car dealership, backpackers and other accommodation, and there are so many that I couldn't tell you what used to be there.

The cordon is reducing and there are more buildings coming down all the time.  Recently the Crowne Plaza (aka Noah's hotel) has come down, and the demo crews have started on Westpac Building (formerly Canterbury Centre - which I used to work in years ago on the 5th floor, used to be able to go up to the 13th/top floor for Friday night staff dinner and enjoy the fabulous views of the city), Radio Network House, Price Waterhouse Building and Forsyth Barr House (originally Robert Jones House - I remember my first job was as a receptionist for the company who built this building - I used to find my way around the city when I first moved here based on what cranes were where.  That was in the late 1980s before the sharemarket downturn).  Now there are so many cranes around the city it is amazing.

So I'm going to skip over the work stuff, and the weekend.  Hmmm, this is turning into rather a long post, but I guess that's what happens when you have a weeks worth of writing to catch up on!

Yesterday, going to Champion Centre wasn't as intimidating, but I still need to ask about a few things, like is it okay to ask other parents about their children's disabilities?  In NICU, that was one of the rules, basically allow other families their privacy and don't look or ask questions.

Already the therapists have picked up on a couple of things that may be issues for Isaac.  Someone mentioned about Isaac overstuffing his mouth when he eats.  I just thought that he was being a typical boy enjoying his food, apparently not.  Seems that the sensors in his mouth may not be registering that he has food in his mouth until it is so full he struggles to get it eaten.  Another one said that she wants to check on his use of his hands.  Not quite sure what that's about, I thought he was doing ok, but maybe not.  And the PT tells me that he doesn't have much core strength or leg muscles.  Here was me thinking that he did have good core strength and strong leg muscles.

I know that I wanted to get Isaac the best treatment possible, and there will be more issues arise.  But it kind of did come as a surprise that they were able to see things so quickly.  Maybe it just means that they're good at what they do.

If you've reached the end of this post, thanks for hanging in there with me!

Wednesday 16 May 2012

Wordless Wednesday #3

I struggled a little bit with this weeks photos - forgive me for using a couple of archive shots.


a favourite word, kitchen
something that makes you happy
mum, grass, love
what you're reading

Sunday 13 May 2012

Mother's Day

I love that my boys still enjoy giving me kisses and cuddles, and even more-so when it's Mother's Day.  We stopped at the supermarket to get fresh bread for lunch on the way home from church.  Reuben had given Phil strict instructions to also get flowers and chocolate.  The instructions even included a reminder that the chocolate couldn't contain nuts (I found out at the end of last year I'm allergic to a variety of nuts).

This afternoon, I even got to have a wee snooze on the sofa, the sun streaming in the window, and after I woke up Reuben and I had more cuddles.  Isaac must have picked up on this when he awoke from his nap, because he kept on insisting on pickup cuddles, too.  We don't do those for Reuben much anymore, 'cos he's getting to be such a big boy and too heavy to lift for any length of time, and once you start, he won't let you finish.  But because Reuben asks for something, Isaac will too.  So today I enjoyed getting lots and lots of cuddles.

Five months old

Tomorrow is Isaac's first day at Champion Centre.  I'm looking forward to seeing what happens there, and the different kinds of therapy.  But at the same time, I'm a little apprehensive.  What if Isaac's disabilities are worse than we thought?  I'm noticing more and more things with his movements that could be Cerebral Palsy related.

I'm keeping a couple of scriptures in the forefront of my mind.
Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."
Philippians 4:6 "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."

Isaac was a very sick little boy - but God is a God of miracles

I kind of got side tracked the other day when I was talking about technology (the clothes peg thing). . . .so I'm going to finish that now.

With all the options for communicating with people, social media, etc it can get a little overwhelming, but at the same time it can be a lifeline.  Blogs, facebook, twitter, various email addresses (home, work, plus others - I keep a seperate one for my blogging), add to that cell phones (text, pxt, call) and regular phone lines.

A good friend of mine also has a special needs little boy.  He's been fighting for survival since their 20 week scan, and is now 2 years 7 months.  We worked together for a while, but remained friends after we both changed jobs.  We had really been looking forward to our babies being able to hang out and run around together.  Now that Isaac has been accepted into Champion Centre, we might have a better chance of catching up with each other - even if it is at therapy.  Last time we saw each other, it took months for our calendars to sync to enable us to do this, even though we only live five minutes around the road.  So we really rely on technology to keep in touch.

Isaac being transported for his MRI at 48 hours old


Wednesday 9 May 2012

Wordless Wednesday #2


Something you wore, Fun!
Bird, You
Someone who inspires you
A smell you adore, Something you do

Tuesday 8 May 2012

Technology and Clothes Pegs

Hasn't the world around us changed so much in the past century.  Ok, so a century is a long time.  Even the past 20 years, technology has moved forward in leaps and bounds.  And isn't it awesome the difference it can make in a child's life, but particularly those with special needs.  It's great that we can just pick up the phone and talk to someone, as though they were in the next room, or skype relatives that live overseas.  There are some any cool gadgets out there, but imagine what the next 20 years holds....

I do have a bit of a thing for information and technology.  I can recall all kinds of seemingly useless information and have been known to get a little obsessive.  You could even say sometimes even slightly obsessive compulsive, although if I catch myself heading down that track I am normally able to stop it.  Like with pegs hanging out the washing.  I use a particular kind of peg (pink pegs) for a while there I had 3 batches of pegs all of varying stages of colour fade.  I had to use pegs of the same depth of colour on a garment when I hung it on the line.  BUT, I also had to ensure that the total number of pegs was a multiple of 6 - that way it was also divisible by 3 and 2, and if it was divisible by 2, then there was a 50/50 chance that it would be divisible by 4, so a multiple of 12 was even better.  I willingly chose to do this, it wasn't like I HAD to.  When I realised how crazy it was getting, I went and bought another couple of packets of pegs, but the manufacturer had changed what they did, and now pink pegs came in packets of mixed pink, green and purple.  This could have been really, really bad.  But I was able to rationalise my way out of it and can now just use what ever peg I pick out of the basket.  It also makes a difference when you have a couple of willing little helpers who get the pegs out for you - that way you don't have a choice.  I'm not too worried about the number of pegs that get used, although I do still count to multiples of 6 when I bring the washing in.


But I digress, I really like numbers and patterns, that kind of thing. Really enjoyed algebra when I was at High School - see I really am a bit Tutti Frutti!

I have been interested to see what my blog stats show me about people who have been visiting my blog.  Here's a snap shot of my pageview audience stats:

New Zealand - 688
United States - 177
Australia - 38
Russia - 16
United Kingdom - 15
Canada - 10
Germany - 6
Japan - 6
Finland - 2
Ireland - 1

There was also one from South Korea but that disappeared!?


I have a global audience, and I guess that I can rest easy about no-one reading my blog, although that could change after today's post....

Sunday 6 May 2012

What's Around the Corner?

Sometimes I feel like the journey we've been on the past couple of years, is like trying to negotiate your way through a multi-level maze, and never quite knowing where you're going next or what you're going to discover lurking around the next corner.

This week I feel like I've reached a new place, a good place, but new and different.  It's kind of difficult to explain - I'm not sure if it's contentment, increase in my trust in the Lord, change in my medication, a lack of aftershocks or a combination of all the above.

I am amazed at how much improvement we have seen in Isaac in the month since he got his walker (I'm sitting here shaking my head in disbelief as I type).  His confidence has increased, as he is able to interact so much more easily with his peers at preschool.  He is so much more independent, and often leaves his walker behind throughout the day as he moves from one activity to another.  Often when I pick him up in the afternoon, we've got to go looking for his walker, sometimes it will be in the family corner, other times we've found it outside near the sandpit, and occassionally it is near the tables where they eat.

I knew that getting accepted into the Champion Centre was going to give Isaac a heap of therapy the he hasn't been exposed to until now.  The list of different therapies is quite impressive, and if you need other help, you get it.  They are cautious about releasing children from the program, which is reasuring - how a 9 month old with Cerebral Palsy can be released from 2/3 of his early intervention program, I am still trying to fathom.

Isaac at Reuben's rugby practice

We had a meeting with our Family Support worker Friday morning.  Isaac will be attending weekly sessions, and the team working with him will include: physiotherapist; speech language therapist; early intervention teacher; music specialist; play specialist; computer specialist; and an occupational therapist.  I'm picking that Isaac's favourite will be the music therapy. 

There are so many things that I'm looking forward to.  What his reaction will be to the therapists and the therapy itself?  How quickly will we see results?  I know, I'm jumping way ahead here, and shouldn't have unrealistic expectations.  Even though it's all new and kind of scary, it is very exciting, and a wonderful opportunity.

I think the thing I am most apprehensive about is the IP (individual plan).  We haven't done these up until now, and I guess the scary part is that Isaac's disabilities are going to become more, what's the right word, identifiable.  But we will also know exactly what areas he his struggling in.  Even though Reuben is 3 1/2 years older, it can be so easy to forget where he was at what point, and how Isaac compares.  Not that I want to compare, and I know that all children are different, but it would be good to get a gauge on how Isaac is developing and leaning.

Now that we're into the second school term, winter sport is getting underway.  Reuben has had two games of rugby and has been playing really well.  I'm glad that we made the decision to keep him in under 6 grade, instead of moving up to under 7s.  They've had two games, and Reuben is playing really well.  What a difference six months makes.  First game, Reuben scored two tries, then yesterday he scored three and was awarded player of the day.  His final try was a length of the field run.  I'm so proud of him.  He is enjoying playing in his new team and they are a great group of boys.

Reuben at the cross country

It was great to have the day off work on Friday, firstly so that we could have the meeting with Isaac's family support worker, but also because Reuben had his school cross country, so it was really good to be able to go and support him.  The thing that really impressed me was the spirit within the school community.  There were a lot of parents cheering their children on.  Children from year 7 and 8 classes were supporting the younger children, they would run around the course with them, encouraging them and also showing them where the course went.  If there were any children lagging behind, someone would join them and help them to keep going.  The special needs children were all included and supported.  I guess you had to be there, but it gave me a really good feeling about how inclusive and accepting the school is.  In addition to wanting our boys to go to that school, we wanted Reuben to be accepted on the ballot as this would give Isaac a better chance of getting in.  They have a great special education unit, which is an added benefit.  We don't know what needs Isaac will have by the time he turns 5, but it sure is reassuring to know that we have that option.

So does any of that make any sense?  Hopefully it does.  I'm really enjoying the boys at the moment, special family times, and just doing the little things.  They really are a blessing. 

Wednesday 2 May 2012

Wordless Wednesday #1 02052012



black + white, somewhere you've been (work carpark)
1pm (could be any time any day!), circles
something that makes you sad (these buildings have been like this for over 14 months), peace
skyline (previously taken on our Christmas holiday)

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