Princess Brooklyn - 3y + 4m

Princess Brooklyn,

You are starting to freak me out a bit now. Could you just stop growing, learning and getting all independant on me please? I can not imagine a more enjoyable, hilarious, infuriating and perfect age. You can have conversations about most things and your view of the world is just delightfully simple.

Racial Integration and Assimilation.
Me" Brooklyn, don't say dance (daence) say dance (darnce)"
Brooklyn "But we say daence"
Me "But we are from NZ so we say darnce"
Brooklyn "Well, we are in Australia now"

The Theory of Relatively
Brooklyn "Nico is tiny. And Tyson. And Bailey. And Sam is teeny tiny"
Me "Do you know the opposite of tiny is huge?"
B "Yeah, like dad, he is huge. I am half size of his huge. "
Me "Yes, you are half his size. And I am middle sized"
B "Yeah, you are short"

Don't be Sentimental
Brooklyn "I think that truck did crash into that car"

Me "Yeah, we don't want our car to crash do we?"

B "Noooo!!"

Me "I had a car crash once when I was younger, but it was just a little one like a bump"

B "Did you? Where?"

Me "In New Zealand when I was 20"
B "Well, you don't need to worry about that when we go there to New Zealand."

Being Tactful
(Cuddles in the middle of the night during a storm, you were a little scared, I was lonely with dad away and thought we would both like it if I fell asleep there)
"I love you Princess"
"Me too Mama. But you can go to your bed now"

You started swimming lessons again, for the first time in a year, two weeks ago. You ge to go in by yourself now and I sit in the wating room behind glass. I was a bit worried that when the teacher wasn't focussed on you, you would just be splashing around not knowing that you were meant to continue doing whatever it is. I was also worried that because your friend Riley is in the class too, you would be a distraction to eachother. You were PERFECT. You held on when you were meant to, you kept kicking/ floating/ lying back while the teacher was working with the other kids. You listened and most importantly, you had a fantastic time.


Swimming lesson. Fisrt one alone



Dad has been taking you to dancing every Saturday morning because I have been working. There was an open day last week which was my first Saturday off so I got to watch which was great. None of you can star jump properly and you sound like a herd of elephants as you all do "Butterflies" across the room. The tap dance part of the lesson was Nico's favourite because it was so clunky. I can not wait til the end of year concert.

 

It is school holidays coming up so swimming and dance will be finished for a few weeks as well as Nico's group. I am looking forward to catching up with your friends as the schedule opens up.

Hey Brooklyn, guess what?

I love you

Mama

Grateful for virtual strangers and virtual friends

Yes... this is pretty much going to be a similar vein as this one from the other day but the hugeness of what happened that day needs two blogs. That may not even be enough and there might be a blog about it every week until I feel I have done enough to warrant such an outpouring of kindness.

From virtual strangers. And virtual friends.

The virtual friends: This group of women, the ones that started this Nico's Toybox facebook thing, I am not sure what they were expecting. A few followers, a few items to get together $400 or so to buy Nico a switch toy if they were lucky (HA! "if they were lucky"?? Stupid expression, If IIIIIIII was lucky!!) They got a bit more than they bargained for though I am sure. I know I never even fathomed the response they are getting. Nor did I find out until days later that not only had they made this page... they had contacted Nico's physio/ keyworker to find out what they should get him!! Just from me mentioning once on here which Early Intervention he went to I suppose... INCREDIBLE!!


It has been 4 days now and there are 500+ likers in the group. There are about 50 items there to bid on. AMAZING items. They have a whole lot of work cut out for themselves getting this thing together, they have a baby the age Nico should be... some 2 kids or more maybe... and yet they are still encouraging more and more people to get on board. I need a bigger vocab because I am over hearing/ writing/ thinking the worrds AMAZING and OVERWHELMED.

The virtual strangers: The friends of friends of friends, all who knew nothing of me or Nico last week, donating items or joining up the group and sharing it to potentially bid. I am glad that if they bid, they will get something for their kindness, I really like that idea but still.. for everything that is bid on is a gracious, generous soul donating it to the cause, to my little man and for that, my family and I will be eternally grateful.

Thanks to Grateful with Maxabella, I can share my gratefulness even further

xxx's to virtual friends and virtual strangers

K

Overwhelming Kindness -

So back in the year 2007, I found out I was pregnant. I couldn't tell any friends because... well I don't know why but "they" say you can't and when you are a first time pregnant lady... or a first time anything, you believe "them" don't you?

I joined a parenting site, Babycentre and joined the group of ladies who were all due in March 08 and made some fabulous friends. Online and in real life. It was only natural that when I fell pregnant the next time, I joined. That was the due month of July 09 (maybe Aug 09... I think I have erased it from my memory) and I don't even know if I said goodbye to that group... I just slipped, quietly devastated, out the door after 14 weeks. Two months later I joined "January '10"  with a fair bit of trepidation. I was due 1 Feb 2010  but had a feeling I was going to be early. (Ha!!!) I didn't get too involved. I read most posts but being so pertrified of another heartbreak, I didn't post much. When Nico was born in October, I wrote the start of this blog, from pre-Nico's entrance there. I needed to get it out and I wanted to let anyone else who started getting even false labour to know that these babies  exist and are incredibly strong. then I went silent again, too busy to check more than facebook. Then they all got together on Facebook and I joined in again.

These amazing ladies, they have made me laugh every day since. They give words of encouragement and sympathy. Just generally the perfect "online" friends.

Today I get an email saying "We wanted to do this as a surprise for your family, because we want so badly for Nico to have a toy of his own. Unfortunately we can't keep the page hidden from you unless you're already a fan, so.. here it is."

:https://www.facebook.com/pages/Nicos-Toybox/230438753635663?ref=ts#!/pages/Nicos-Toybox/230438753635663

I had seen an update / share thing earlier in the day and was going to go back just because I thought "Oh, cute, great name" but I was in the middle of something so forgot all about it. I burst into tears before I even opened the link. I knew they had done something special and my my my... had they ever.

Overwhelmed is just not good enough a word.

I think I will have to buy a round Australia/ NZ/ China and Hong Kong (did I forget anywhere ladies?) plane ticket and give each and every one a giant hug... and more. Even that would not be enough

Post In Note

Dear Nico - 20 months

Dear Nico


There is not much new to tell you this month. Life is just trudging along and you are following your usual up and down pattern. Actually, you were following an almost predictable one for a few weeks; good night, bad night, good night, bad night.


I am trying to find suitable care for you for when I start working longer hours on a Monday. I didn't realise it would be so hard. The idea of you going to childcare doesn't fit with me so I am going to try and get someone at home. It's about $36/ hour from a care agency though and Windermere In Home care, the only place with affordable rates ($15) has no carers available. In Spring or Summer I would be les reluctant to send you to Brooklyn's daycare as there are less viruses then.. hopefully. I still worry that you are too demanding for them to deal with and that would not be fair to you or the centre. The great thing to come of my longer shift on Monday is that I will now have Saturdays with the family. I can not wait.


Tiffany from Bialla brought around a standing frame for you last week but we haven't used it much as you have been too grupy. I am sure you will like it when you get the gist though. We also still have the switch toy I talked about here  which has been great. I am not sure I will be able to talk them into another week though

In a Monkey standing frame

We have to get you a passport photo this week... I am not looking forward to it. There are so many rules and they are strict. It took 3 attempts to get them to accept one of Brooklyn at 6 weeks old and she was much more cooperative than you.

You have to:
have your shoulders square
look at the camera, dead on
not smile or frown
not have me visably holding your head
not appear to be lying down
have a plain background free from wrinkles or shadows
have both ears in the picture

Good luck with that. We really really want to see your Nana and Grandad though so if you could oblige.. I would appreciate it greatly, okay?

Love you much
Mama 

Grateful for night time antics

Geez. I have not been Grateful with Maxabella for a long while so I thought I better get with it this week

I am grateful for my iPod Touch.

More specifically I am thankful for Words With Friends on my iPod.

And if we want to really really fine tune it, I am grateful that I have friends in far away lands who take their turns on Words with Friends in the middle of my night. It gives me something to do while yo yoing between my bed and Nico's room... or while lying in my bed listening to his whinge/ cry/ whinge his way to sleep when I wave my white flag and give up.

So if you are in a far away land, come play Words with Friends with me, KazzBrooklynNico, and keep me sane through the very loooooooooooong nights

PS

I am also grateful for Milo.

And not having to work Saturdays anymore after today.. but that is for next weeks grateful list

Reality Bites

Talking with a friend the other day, she pointed out that I have never really written about the finer details of Nico, his prognosis and the reality of our day to day life... now and in the future. There have been allusions to things here and there, pointing to a few struggles but nothing concrete. I am not sure why.

So here we go. The Reality.

When Nico was born, at 24 weeks and zero days, 710 grams, he had or he developed a brain haemorrhage due to his prematurity. It was classified as Grade 2 but it resorbed and we thought that would be the end of it. Little did we know that this would leave a scar and 9 months later the first whispers of cerebral palsy would come about. As it can not be tested and is just something diagnosed by watching development, we never got a sit down diagnosis. It just evolved like Chinese whispers, I mention that the neurologist had said possible cerebral palsy and slowly the "possible" just dropped out of everyone elses conversation. Except mine and my husbands. We took a little longer to lose that.




6 weeks old


What does this mean for us right now?

Nico has very little control of his muscles. He has enough muscle tone to hold up his head and body but he can not control it so will either be too relaxed (floppy) or hyper extended and completely rigid, with his head and arms all the way back, like superman. He next to  never faces the middle, he will always chose to hold his head to one side, but the side changes. It makes him really hard to hold and carry around as you really need to hold him with two hands. Even if he is relaxed, you never know when he is going to fling himself into rigid mode. You have to forcibly break the lock of his legs or hips to get him to relax again. Getting him dressed is like trying to get one of those plastic dolls dressed.. but one that fights with you. His legs kick and his arms lock.

He doesn't play with things and he doesn't have the instincts to put his hand in his mouth. It must frustrate the hell out of him as I am sure he would love to play. We have a loan toy from his Early Intervention group which is called a switch toy. It is a regular baby toy (in our case a spinning type one) but it has been converted so that it has s giant button that is very easy to push. At  around $400 dollars per toy, I can't envisage us ever owning one, let alone more.   Heartbreaking thought, a child with no (useable) toys... and he really does seem to understand what to do and will concentrate really hard at times. So precious. Hopefully we can borrow one more often, but of course they are in short supply and needed for therapy sessions




Playing.. with encouragement from Big Sis.
Tee read "My dads car is faster than yours" hehehe.




Feeding is up and down. He is offered a bottle at every feed. He often refuses completely, other times he can drink upwards of 100ml. We just put any remaining feed through his PEG pump. If he doesn't really drink anything orally, the PEG will take about an hour to give him the 240ml. the plus side is, he can feed in the car while I drive, I can go and do dishes while he feeds and if he is too tired, I can just feed him while he sleeps. As I write this, I realise how crazy it is that this is just normal to us. Normal that there is a lilo valve in my little mans tummy that we just open and close to make sure he gets food enough to sustain him. Normal that if I go out for more than 4 hours with the kids (which almost never happens) I have to pack a little machine the size of a desk radio, a pole, a special bottle and hanger, a tube for the pump and a connector tube to attach it to his tum.  In a good mood, Nico DOES eat soft mushy food really well. I love to give him rusks and toast etc but since he doesn't hold it for himself, it is a chore.

In a week, I would say 3 days are bad days. Days where Nico cries more than half the time and regardless of what you do, you can't make him happy. He will be a bit quieter when being held but still voicing displeasure over something. Frustration perhaps. He is not stupid, he is not brain damaged, he doesn't have an intellectual disablitly He can think like any other baby of his corrected age. Can you imagine that kind of frustration? That kind of wanting? That kind of restriction? Knowing what you want and need but having no way of geting it or telling anyone, I would scream too.

Nights swing in favour of the bad. A good night is 3 wake ups.. or by some kind of miracle, less than that. A bad one could involve not more than 1 hour straight sleep at a time and an average of 1.5 hours with a few 2 hours for good measure. It is torturous, there is no other word. With a 3 year old munchkin to look after by day, there is little time for catching up rest. I walk around like a zombie half the time, broken conversations, a scatterbrain memory and no motivation to do anything. I would love to get to the bottom of it but the only answer we seem to get is "He will grow out of it"  which just makes me want to reply "Well, what if he doesn't just grow out of it" in a really nasal snarky mimicky patronising tone. The last week or two has been a good/bad/good/bad night pattern which has left me feeling a little better but somehow also makes the bad nights worse. It's like because I know he can do it, it grates on me more that he is not. I have been prescribed a sedative for him but i am reluctant to use it due to the side effects and addictive nature. He is barely one year old corrrected, a sleeping pill???

What does the future hold?

We will not know what he will be able to do until he does it. All we know is everything he does, will be a massive effort for him. Initially the speech therapist had said "We'll most likely be looking at alternative forms of communitcation" and knocked me to the floor. I had never even contemplated speech issues before. I was too focused on the physical. Last week she said, in a positive tone that we may get words from him yet. I wanted to cry. not because I was overcome with emotion exactly, but coz I realised how unfair it was for that statement "We may get words from him" to be such a big deal. How ripped off I feel, I can not even explain. Being robbed of pregnancy at 5 months was bad enough. Now I may be robbed of hearing my little mans voice too.

He won't be walking for a long while, if at all. Saying he will be in a wheelchair doesn't seem right for a child who doesn't look out of place in a pram... but I guess he kind of is/ will be. He still has a stepping reflex and he seems to bear weight well on his feet so I hold hope. He may be in a walker, depending how the head and trunk control goes. I saw a great tee shirt on line the other day, "Walkers: Not just for Old People" I doubt much will stop me getting him one of those, it is genius.

He is extremely unlikely to be involved in mainstream shool and if we remain in the area we are now, his school will be the Nepean School, 45 minutes away. Thankfully there is a bus but I can't even picture a tiny 5 year old, most likely in a wheelchair, being carted off to shool on a bus, even if it is a private one. The school sounds amazing and on top of CWSN teachers, incorperates team of physio and occupational therapists.

So that is the bad side of the truth. The harsher realities of my day and what I get to contemplate 24/7.  As I have said previously, overall though, I am NOT miserable. My children are the best things in the world and as much as I would change Nico in a million ways if I could, I love him as much as any mother loves their child, regardless. His smile really does make you forget he is anything but a perfect little creature.

How much I would love a new kitchen

We have recently been doing some renos and redecoration at our place. There is an opportunity for me to win a kitchen (I think from Bunnings., my favourite store) and I am DYING to win it

We have just done our ensuite ourslves and done a few little things in the kitchen because we simply can not afford to splash out on a new kitchen all in one go. Doing the bathroom reno etc  has also been fantastic to have something nice to focus on rather than Nico and his issues.


This is what my kitchen looks like. Its OK. Its not overly offensive. BUT in real life, the colours are awful together and the doors look cheap and are starting to peel. The dishwasher bangs as you open it and the oven randomly turns itself on unless you switch it off at the wall

This is what I would love it to look like (and believe it could on a realistic budget):  I love the red splashback and overall look of this kitchen. I would have a black benchtop and change the handles but it gives you the general idea.

The funny thing is, if this is actually from Bunnings, we have been and looked and chosen what we want from there. We priced it up and although the prices were great, the bathrooms were higher on the priority list.

Is it a coincidence that I ache for a new kitchen and this "invitation to express interest" in an opportunity for a reno appear in my inbox?

I know I am likely dreaming. My little blog is unlikely to win something major like this but  I can dream.... and wish... and think maybe one day karma will come and make up for the last 2 years