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...