*Ahem...*

A bit of an announcement today!

Mr. Malakai will have a little brother or sister to play with come January 2010... Yes, I'm pregnant again!

We are really excited about having another baby, especially because we think Malakai is going to make a really super big brother and we can't think of a better gift for Malakai (a sibling to love and share and play with), or a better gift for the little person I'm pregnant with (to have Malakai as a brother).

So - here we go again!

Guess who's....?

.... got two big teeth?

... and can drink from his own cup?

....Mr Malakai of course!!

It's a floater!

Malakai is such a star!

I thought I'd start with that! :)

He is becoming so mobile and really starting to explore (every single) aspect of his environment! He'll throw his ball and chase after it for ages! He's trying to pull himself up on things and his understanding of what's going on around him is amazing!

His crawling has improved so much over the past two weeks and I'm so proud of my little monkey!

Ok - so about my title - 'it's a floater!'

Well - Malakai loves to poo in the bath. Yes. In. The. Bath.

Almost every night he'll 'drop one' while bathing... Now I've tried delaying his bath, massaging his tummy before a bath, playing with his legs to get the poo flowing BEFORE his bath, but to no avail...

I dunno - maybe it's the freedom of floating around in water that does it for him? I've heard of people that go into libraries and the smell of books instantly makes them want to do a 'number 2'... so maybe it's psychological?

Well - Malakai used to suffer from the most terrible constipation, so whenever he poos I'm grateful! But, this obviously causes some logistical problems - namely - I can't bath my son in poo-water!!

Am I alone? Is Malakai the only one who loves to poo in the bath? Any guidance out there? Tips? Hints? It would make bath-time so much easier for me.

I wish you Love & Light

I have been doing some soul searching the past few days – questioning long-held beliefs and trying to make changes in my life that will bring into my life those things that I want – Love, Peace, Acceptance, Understanding and most of all Embracing this Moment.

Firstly, I have realized that if I want those things in my life, and I expect others to respect those things, then I must be able to ‘step up’ and deliver those things myself. Easy peasy? Not quite.

It means that I must give Love, Peace, Acceptance and Understanding to those that give it back AND to those that don’t. Nelson Mandela once said that revenge/unforgiveness/hatred for another is like me drinking poison and expecting the other person to drop dead… Not very clever. No.

But this is obviously easier said than done people. Which is why I think it is has been the most enlightened of our species that have displayed this tendency – it is not easy for us mere mortals.

In recent days/weeks I have chosen to join a group of concerned parents of children with Ds who want to educate the ignorant and call them on their outdated beliefs – in the hopes that we can make a difference for our children. This is noble and the intention is good. But what a ninny I am! The very first article we were lead to read, one that was so incorrect and so ridiculous about individuals with Ds, and I’m ‘chickening out’ so to speak.

The article itself wasn’t that bad – leaving a comment for the author would surely have given him food for thought. So everything is all good… until I read a comment on this particular article that referred to my child (or people with Ds) as ‘animals’ and not much better than ‘cattle’… ‘just because something looks human, doesn’t mean it is’.

What? My mouth just hangs open and my heart constricts. Re-read it. And again. Nope. Still dumbstuck.

This person, this comment from ‘Rob’, is just so cruel and so ugly that I have to step back.

Do I fight this? Will it matter? Can a person like this change their mind? Are they even open to another’s opinion? Somehow I don’t think so.

So – where am I going with this? Well, simply put, I’d rather not know thank you very much. I don’t want to invite that sort of disgusting thought into my life, into my consciousness, into my home (via my laptop screen) – I felt like taking a shower (with my laptop) after reading that.

So, despite spending my entire life thus far believing in ‘fighting the good fight’, I have now decided to choose what I allow into my mind and home. I will not go looking for negativity; I will not put myself in a position where this kind of thought can affect me or my child.

Yes, if I am physically confronted by a situation where teaching and explaining more about my son is appropriate, I’m all for it – otherwise, I’m really not interested in what someone on the other side of the world has to say – that’s their problem.

So, Mr. Rob, I wish you all the things I wish for myself.
Love – so that you may understand that some emotions don’t have conditions attached.
Peace – so that your heart is no longer so twisted by hatred.
Acceptance – so that you may understand and celebrate diversity instead of being afraid of it.
Understanding – so that you may try to learn about new things and broaden your horizons.
Embracing the moment - so that you may know that your thoughts of yesterday do not need to be your thoughts of tomorrow.

*Please note that I am no way downplaying in any way other parents’ choice to leave comments or to speak their minds. We each make the choice that is best for us.

A little hurt and confused

Recently, I have been made aware of particular people who have written things from a perspective of 'authority' and 'knowing', and yet, who know nothing.

I'm Sorry. Let me be more specific.

They know alot about alot of things. Ego. Plastic Perfect. Non Acceptance. Intolerance. Misunderstanding. and Hatred, to name but a few of their areas of expertise.

Now, don't get me wrong - everyone should be an expert in something that they feel passionate about. But when their passion is about Division and Ignorance, then I'd like to chip in.

So - they know alot about alot of things, but those are not things I wish to welcome into my life. Those are not things that have any place in my heart or the hearts of those I choose to surround myself with. I am all for a person who says 'I don't know. Will you tell me more?' because there is always the time and space to teach and share. But some people, with voices that are public and voices that are believed, sometimes say things that hurt and confuse me.

Why would a person say that my son is not worthy of life? of Love. of Respect. of Freedom? They haven't met me, they haven't met my son. And frankly, I'd probably have to stampede right over them like a mother elephant in a fit of protective rage over her baby. Now - you'd say that's probably not very nice. No, it isn't. But it is the way I feel when I'm hurt and confused.

What business is it of theirs what I choose to do, or who my son is? They don't care enough to know him and his Love and Life, but they do care enough to publicly say hateful things about him because of what? He has an extra chromosome? He's going to experience some difficulties in life reaching his goals? He's going to do all of this to the best of his ability and with me by his side, telling him that he can. And he will. Mark my words.

My son doesn't know hatred. He doesn't care for labels. His life is about Joy. His message is about Hope. He is a perfect expression of Love.

Why hate him Mr. Important Writer of Alot of Things? Come and meet him, get to know him (if I don't stampede you first) and then put your pen to paper with a clear conscience that you actually know alot about alot of Meaningful things.

No. I can't change the world. My son will face this kind of backward, prehistoric, eugenic-driven, plastic-perfect-worshiping, ego-driven dribble - I know that. But as long as he knows that it's just dribble.

Exhale.

Well Done Malakai!

That dorky laughter at the end is me :)

News!

I am so excited about my news today!!

Malakai started crawling last week! Yes! All by himself! I am so proud of my little guy, he's doing so well and is determined! Now, a whole new world has opened up for him (and us!!). We have had to ensure that our house is safe for him to explore and now I just can't wait to see him go further and further!

Other news is on the local front. I am not sure about how it works overseas, but locally our pregnancy/parenting magazines offer very little in the way of support for special needs. In fact, in the whole 15 months that I read these magazines I saw ONE article about chromosomal abnormalities and Down syndrome was mentioned of course. Otherwise, there really isn't a sincere effort to reach mothers of children with special needs.

So! A new parenting magazine has launched recently in SA called Mamas & Papas. It is fantastically Proudly South African, and is aimed at ALL cultures in our country (because our current magazines focus only on the white middle class). They have asked me write a few articles for them and they have launched their July/August edition which is completely focussed on Special Needs!! Malakai is featured, as are other children with Down syndrome, autism, cancer, ADHD, albinism etc. I am so proud!

Please go out and buy a copy of this magazine and show your support for their innitiative to include families with special needs in their magazine. Every new edition will now feature something about special needs, so this is a magazine worth supporting!

Oh My!

Well... where do I even start?

I have put a whole lot of pictures up today, taken over the past week or so!

Malakai has been a superstar as usual! He now has both bottom teeth, and thankfully we seem to be having a bit of break before the next teeth come through. He's sleeping so much better at night now (and so is Daddy...)

Also, as you can see, Daddy cut Malakai's hair this weekend! I was out and got a phone call to say that his hair was being cut. I wanted to wait until he was a year old (for reasons I can't exactly explain), but Daddy said his head looked like a hairy mango pip (What???) and when I got home and saw him - well! Do you know of a cuter little boy? Seriously. Do you?

Otherwise, Malakai is seriously becoming mobile. No crawling yet, but he makes a plan I tell you! I have never seen someone roll around with such conviction and purpose! Also, he just wants to stand and tries to pull himself up on things - a little scary! Yesterday Malakai had pulled himself up on the side of his cot after his nap!

On the food front - I must admit I am no closer to getting Malakai to swallow bigger pieces. A chocking child kinda does that to you! So, I'm thinking of learning the Heimlich Maneuver and then I'll try again!

Ok - so a small update... and some pics!

Malakai chilling with Elriza at the picnic!

Caden (Malakai's little friend) - running rampant

Caden - looking cute

Caden - looking even cuter!

Caden - dressed like a real mini-man!



Malakai - eating his toys (yummy) and before his haircut!

Striking a pose - pretty boy!


Could he get cuter?

Seriously. Could he?

Loving mommy!

Dressed in his dungarees that granny bought him before he was even born! This one's for you mom!

1976

Yesterday we had a wonderful public holiday! I love those! Darryl and I met some friends and had a nice picnic with Malakai and their little one Caden.

But we often don’t remember why we have public holidays… and so, this post is a little ‘101’ on South African history. June 16th 1976, South Africa saw one of it’s most violent and brutal uprisings. Now referred to as ‘Youth Day’, back in 1976 it was a terrible day for many young South Africans. In the deepest midst of the Apartheid Era (where segregation, racism, terrorism and fear was rife), black children living in the townships were only allowed to attend Bantu (for my foreign friends, this is pronounced ‘bun-to’) Schools. Bantu Schooling was specifically for the black population. Not only where these children not allowed to attend ‘white schools’ but they were also given an inferior level education, fit only for those children to one day become domestic workers and hard laborers. Then, in early 1976, these children were told that they were going to be forced to learn in Afrikaans (not their mother tongue)… Well, this was the cherry on top, and the youth of Soweto decided to plan an uprising and protest to show their anger at being forced to learn in a language they didn’t understand.

The 1976 Riots were made up of children, ranging from 6/7 years to 17/18 years old, marching through the streets of Soweto, singing and dancing in unison to show their solidarity. The South African Armed forces descended on these children with military tanks, tear gas, dogs, rubber bullets… real bullets… I forget now how many children were killed. But any loss of a child’s life… even one. And there was definitely more than one life lost that day.

So, yesterday we celebrated Youth Day, a day that remembers a time in our country’s history that is so violent, so brutal, so thoughtless and horrific. I am proud today to say that I am a South African, that I live in a country where everyone is free. No, we don’t have schools for every child, in some rural areas children walk barefoot for miles to reach their school, which is just a building without desks, chairs, books or even running water. But they go, everyday, to learn what they can with such little. Our country has come a long way, but still has a long long way to go.

This is about remembrance, but it is also about gratitude for what we have now.

Hello Tooth!

At last! Malakai's first tooth at the bottom made an appearance yesterday - the other little one can't be far behind either!

I am very excited that's he's going to start being able to chew bigger chunks of food - although, I am still a bit worried about his swallowing abilities! Although I wanted to make a conscious effort to give Malakai bigger and bigger pieces of food to swallow, I haven't done so consistently, so I really don't know if he can handle it or not... He has no fear or aversion to texture or taking bigger pieces into his mouth - it's just when it comes to swallowing he chokes up, even on pieces of food that are soft (like melon).

Otherwise, I've also added a few pictures of my little man with his purple hairy thingy that he clearly LOVES!

Sleepless Nights...

I know I haven't posted news in a long time! I just can't say why... I have been following all my blogs though, and I just love catching up with everyone and their kiddos! It is my little escape, when I find the time!

Mr. Malakai has been doing well - he has been keeping me up at night though! Now, I know I've been soooo blessed that for the most part, Malakai has slept through the night from 6 to 6 since he was about 3 months old... very blessed! So, I am not used to sleep deprivation people!! I don't know how to cope!

First, it was a stubborn runny nose that would wake him in the middle of the night and now it's teeth... yes! Those two little bottom ones are getting ready to make an appearance! I am excited that he'll soon be able to chew food!! But the night wakings... good grief!

Other than that, Malakai is really close to crawling - he is getting onto all fours and rocking back and forth - just adorable! And tonight, for the first time without any assistance, he's taken himself from lying on his tummy to sitting up. All by himself! What a clever boy! I am just so proud of him! We're also working on mimicking - so I'll pat the table, and he'll pat the table. I'll throw the ball and he'll throw the ball...

I didn't realise before becoming a mother that the little things are just so amazing! And, dare I say, more so because my little boy is 'apparently' DISabled? From my last posts it is clear that I was struggling somewhat with fitting in every conceivable exercise to maximise Malakai's potential. Then, I think because I'm so friggen tired, I just couldn't carry on beating myself up - it was too tiring... LOL! And hey presto - he makes leaps and bounds - just when I give myself permission to Let Go.

When will I learn?

I suppose when I do, I'll know! LOL!

Anyhoo - I just wanted to send a small update into Bloggy-World. Just in case anyone thought we'd fallen off the face of the earth... we haven't! Mommy's just very very tired and Malakai's very very busy!

Say What????

I have been thinking a lot lately about how people talk, the words and descriptions that people and I use, what’s politically correct and what’s not, and mostly – what hurts and why?

Now, firstly let me say that I was never a big fan of politically correct, and I’m also known to throw in a few swear-words for good measure every now and again (which I’m trying to curb, now that Malakai is around). So, I’m no angel… not by a long stretch.

But, since having Malakai come into my life, my ears have become much more sensitive to words such as ‘downs’, ‘retarded’, ‘disabled’ etc. But I think by far the most hurtful description used for my son is ‘they’. This word is usually used in place of ‘downs people / people with Down syndrome’, and it’s just shortened to ‘they’. For example ‘they usually don’t sleep through the night’ or ‘they are such happy children’ etc.

So, I have to ask myself why the word ‘they’ hurts so much? I have used ‘they’ to describe people from different backgrounds / ethnicities, like when I say ‘they have such beautiful hair’ of my friend who is Indian. So what’s the problem?

Well… the problem is that by saying ‘they’, the person who is speaking is separating themselves from the person being spoken about. It’s a case of ‘us and them’, a word that represents separation.

But I use ‘they’ all the time, and I do not mean it disrespectfully of the person/people I am referring to, it’s just a grouping. So, is it as bad as I think?

What I do think is that I have become more aware. I have now realized how hurtful labels are, how hurtful generalizations are, how hurtful it is when we rob someone of their individuality by lumping someone with a whole group of other people – as well intentioned as it may be.

All Indian people have beautiful hair? Really? Have I met all the Indian people on the planet? No. Can I therefore say that ‘they’ have beautiful hair? Absolutley not! Can I say that my friend, ‘So-and-So’ has beautiful hair? Yes, because I know her and think her hair is beautiful!

What’s my point, I hear you ask? Well, it’s that if I don’t want people to generalize about my child, and generalise about him as a ‘they’, then all I need to say (as nicely as possible) is, ‘Have you met every individual on the plant with Down syndrome? No? Then I would appreciate if you could refer to my child as the individual that he is. Thank you for understanding’.

And as for me – I am going to eradicate the word ‘they’ from my vocabulary in an effort to celebrate every person’s uniqueness, including my beautiful magical boy!

Runny noses and other icky things...

So, I got the flu from my mom and then passed it onto little Malakai. Poor little monkey is streaming rivers from his nose... I feel so sorry for him! But despite this, he is still smiling and generally a very happy little boy!

Malakai continues to amaze me every day! He is going through a bit of a development spurt with expressive & receptive language. He’s making all kinds of sounds that I sometimes have to stop in my tracks and go ‘what the??? Oh... It’s Malakai!’ And last night, while perusing our favourite books, I asked Malakai (as I always do) to point out the baba in the pictures and he actually did! Now, it may have been a complete coincidence, but I am sure I saw him actually think, look and then touch the baby’s face. Too cute!

Because Malakai is sick, we’ve skipped our therapy this week. Especially because I take him to therapy before work – at 7:00am which is not a good idea now that he’s sick and it’s cold outside! Winter is definitely upon us! But it leaves me feeling abit sad, because I really can’t seem to do with Malakai what his physio therapist does... She is so much more effective and her toys are actually interesting!! So I am left asking myself if I am Malakai’s mother or therapist? Or both? Or half/half? Or, or, or??? Or am I just lazy? I don’t know!!!!!!!!!!!

But what I do know is that I feel absolutely guilty... from the bottom of my toes to the tip of my runny nose...

I do not want him to miss out on any opportunity to grow and develop to his full potential, and yet I can’t seem to get it together enough to participate regularly in his excercises at home. Either he’s sick, or tired, or both, or throwing up, or I’m absolutely brain-dead from a hard day at work and I can barely keep a smile pasted on my face while feeding and bathing him, never-mind motivate him to crawl to a toy that he’s obviously not too interested in...

What I’ve realised being mother to my little monkey is that my mind is always focussed on – ‘has he spent enough time on his tummy today? If not, we could be seriously jeapordising his chances of crawling, and if he doesn’t crawl, well then that’s just absolutely terrible, and it’s my fault, and the sky will fall in.’ And then... I realise that I am getting worked up because I am moving away from the moment and into a future that I know nothing about... Oh.... that’s why I’m hyperventilating!

So, I try to push the thoughts away, because they aren’t helping, they aren’t actually making a good difference. All they do is make me feel bad, and when I feel bad I can’t be a good mom. The feelings and thoughts do nag at my mind though, but I suppose that’s normal? I can’t fight the thoughts and feelings, but I can realise that right now I’m doing my very best – and that’s all I can do – my best.

Somewhere inside me, I have a strong belief that Malakai chose me and I chose him, way before either of us came to this earth. So, we are made for each other right? What I have to offer today, is what Malakai needs today, because we are meant for each other. What I am able to give tomorrow, or next week, or next month will also be perfect, as long as I keep my mind clear of the negative and scary thoughts that often come to visit.

Malakai is 9 months!

Ok... so he was 9 months on Friday... my bad... But there is lots to update!

Malakai is just a super star these days! He has had a real spurt in expressive development. We just have to smile in his general direction to be rewarded with a wide toothless grin and a giggle! It is just so incredibly rewarding! He is also starting to make more definite consonant sounds like ‘ya’ and ‘ma’. He plays with more intent too, really manipulating his toys to do what he wants.

I, on the other hand, decided that he was ready to progress from first foods, such as butternut, sweet potato and fruits, to more interesting tastes... I went out and bought a whole lot of fresh ingredients and a cook book for babies and got started! The kitchen was chaos (note to everyone – I do not cook. My husband does all the cooking in the house. In fact, if he goes out in the evening, he’ll first come home and feed me... LOL!). So, making Malakai’s food was quite out of my nature – but I made my best attempt. Sweet Potato, spinage, peas and leeks; Chicken, cottage cheese, natural yoghurt & pear; White fish, sweet potato and orange juice were some of my attempts. Ok – so they didn’t all go down too well. When Malakai started to gag, I stopped. But he gave it a really good attempt and we’ll continue to introduce new tastes slowly. It has also been a bit challenging moving to bigger chunks of food – he takes them without any fuss, but he chokes very easily. So we’ll go slowly there and I have to really limit his finger foods because of any chunks he could bite off (those little gums are strong I tell you!).

Physically Malakai is getting stronger. He’s sitting more confidently, although he’ll just plop right over without notice – so he’s still got a nice big cushion to break his fall. But now that he’s sitting, he does not enjoy being on his tummy. As soon as his on his tummy he rolls onto his back and does a ‘sit up’ (lifting his head and legs clear off the floor) and holds the position – panting, moaning and straining. Over. And. Over. Again. I must say I am worried that he doesn’t crawl (and bum-shuffles instead) because I can’t keep on his tummy. So, I will discuss with his PT whether we should increase his visits from once to twice a week at this critical stage – because she is able to do things with him that I just can’t seem to get right!

I am pleased to say that Malakai has no seizures at all these days – I am relieved that it was the medicine causing them while being quite angry with the doctor for not realising it in the first place! But what is done is done and I am grateful that there was a relatively simple explanation and solution. As for Malakai’s reflux – it is a challenge still. We did a barium swallow and scan, which showed no physical abnormalities. So we are putting it down to low (internal) muscle tone. We have increased his daily intake of Gaviscon, hoping that he will outgrow the reflux in the next month or two. If this doesn’t happen, we have to do a 24 hour Ph test and then operate (a nissen). So, we are looking at all options and Malakai’s wellbeing and development is critical here.

Yesterday I was very sad and hard on myself for not doing more for Malakai. My husband brought me back to earth quickly though – I am doing my best with what I have. I work full time and only get to spend a short time in the mornings and evenings with Malakai, and with that time I am doing my best. Could Malakai benefit from having me home full time and stimulating him more? Sure. But he also benefits from an excellent medical aid (which pays for all his therapies), living in a comfortable home and a future that is being saved-for every month. These things all cost money. Money which my husband and I have to go out and earn. I have often wondered what was more important – but at this stage, with the global financial crisis, jobs disappearing all over the place, I need to play my part and be responsible to keep our family financially stable.

I wish that I could be home with Malakai more. I wish that I had more time with him. But I know that it will all be ok – it always is. As long as I stick to my two rules, firstly Stay in This Moment and secondly Let Malakai Lead the Way. The moment I don’t follow these rules I leave my peace and happiness at the door. It just isn’t worth it! So, for now, we’re ok. My little boy is probably the cutest little person I have ever met! We’re financially stable in a very unstable global crisis.

We have much to be grateful for. We have much to give thanks for.

Holiday Pictures

Just a short post with some pictures of our holiday!
Clarens was fantastic – I never tire of the beauty and peace I find in the mountains. I think every person has their ‘landscape’, that place that renews them – for me it’s Clarens.
As for Mr. Malakai – he’s doing much better! I have not noticed many seizures (and those that I do notice are so short that I am not sure if I’ve seen them or not). His reflux is unfortunately not really resolved, but I have it under control until I can get an appointment with a new Pead. On a positive note, Malakai is really starting to laugh out loud now – it is so precious! The sound of your child’s laughter... well... I didn’t know that something could sound so amazing! I just never knew...

Malakai and dada...

The landscape

cutie pie!

Having fun with dada!

The view from our chalet

One of our daily walks

A picnic!

wassup!!

more cuteness

Walking with mama!

On the swing!

On the trampoline

Malkai discovered a chip packet that just got his full attention for ages!

The said chip packet...