Mango Slices & Belly Laughs

Well... just some pictures from today! I had a rather busy weekend, I did 3 photo shoots this weekend, so my time with Malakai was very precious!

So, this post is complete update on my little man!

For those of you that I haven't bored to death with every blow-by-blow detail - my little man is now sitting! ...well, sort of! He will sit for quite a while on his own, and then depending on what he tries to do (bang his toy or reach for another toy), he'll topple over! It's too cute! Malakai is also starting to pull his legs underneath himself when on his tummy (like he wants to crawl), but for now his arms are not quite playing along! Regardless - he's very determined and will get clearly frustrated when he can't reach the toy he's after!

As for solids - Malakai still LOVES to eat! He's now tried (and loved) butternut & sweet potato, beef stew, pear & apple, paw paw, melon and banana! He has also tried 'droe wors' (Afrikaans for 'dried sausage') - sounds yucky, but it's actually very very yummy!! And today I gave him a dried mango slice which he loved (can you tell by the pictures???).

Malakai continues to amaze me with his physical strength - he just tries and tries and tries!

As for the 'Belly Laugh' portion of my post... Getting Malakai to laugh is like trying to pull teeth from a chicken (no laughing matter, I assure you!). I know he can laugh, I have heard it! Although it has never been a 'giggle', he has 'chuckled' (like choking on a cough...) for me before! So today I discovered something that he thought was hilarious - and by the picture above you can see that! But no sound... Just a little 'choke' noise once or twice. He IS laughing, but without sound? But just like everything else in my little man's life - he will do what he does in his time - he knows best after all!

Until my next post - I'd like to say that I am thinking of all my bloggy friends out there! I follow your stories, they inspire me, they make me think, they make me proud, they make me rejoice! I think of your beautiful children daily, and I pray for the very very best for all of them!

Love,

Loren

3-21: World Down Syndrome Day

The 21st of March is World Down Syndrome Awareness Day. This day marks 50 years since the discovery of the cause of Down Syndrome – which is the triplication of chromosome 21 – hence the diagnosis of ‘Trisomy 21’.

I am different I am the same.
I laugh I cry.
I give I take.
I learn I teach.
I love I am loved.
I am able I am limited.
I am me I am you.
I do I don’t.
I succeed I fail.
I dream I plan.
I am determined I am scared.
I feel joy I feel pain.
I am more alike you than different.
Some think I can’t but I can.

My Number One!

Today I was presented with an opportunity – a really great opportunity! Seriously - I would have loved to have grabbed it with both hands... really tightly... But, being a working mom, my time with Malakai is already too short and very precious. I spent a good few hours with a ‘why can’t I have it all?’ attitude, and then, just as I was allowing the feelings of sadness wash over me, a thought crossed my mind.
“No. I can’t have it now. It's ok, just wait a few years. Malakai comes first. Without. A. Doubt.”
This thought was not accompanied by any feelings of unease, but rather with feelings of love, excitement and pure adoration. Malakai needs me to be there for him. He needs me to give him as much of my time, attention and care as possible. An ‘opportunity’ is ONLY that which is good for me AND my son. I am already away from him 9 - 5 / 5 days a week...
Now I am not saying that a mom cannot have 'it all' – but this opportunity would have robbed my son of even more time without his mom. This is not about 'matyrdom' but about what I choose to do, what I want to (not have to) do for my son.
And as I arrived at home after my 'missed opportunity' and my dear husband was struggling to put Malakai to sleep and cook dinner and feed the dogs and and and... I went straight to my little boy, slightly sleepy and grumpy-looking and took him in my arms. I looked down at him and told him that I loved him, to which he smiled back at me - a big, warm, twinkly-eyes smile...
Malakai is simply My Number One!

*Ahem...*

*Ahem… again… yay!!
Jessica from Ten Squares Three Squiggles nominated me for the Premios Dardos blog award. This award acknowledges the values that every blogger shows in his or her effort to transmit cultural, ethical, literary, and personal values every day. While I never thought of my little blog as doing that, I am so very pleased that Jessica did! Thank you Jessica – I just love your blog as well!

Here are the rules:

Step 1: respond and rework -- answer the questions on your own blog, replace one question that you dislike with a question of your own invention, add one more question of your own.

Step 2: tag - eight other bloggers to do the same.

1) What are you wearing right now? A white-t, brown cargo-type pants and my new green and silver paisley-design pumps that I just adore!

2) What is your biggest fear? Not being around to give Malakai the best of me.

3) Do you nap a lot? Do chickens have teeth?

4) Who is the last person you hugged? My husband Darryl, when he left for work this morning.

5) What websites to you visit when you go online? I am a 100% Blog-Addict! Then I like to visit the Ds board on babycenter.com as well!

6) What was the last item you bought? I went on a full grocery shop… once a month… pain in my bum… but gotta do it!

7) If you could go anywhere in the world, where would you go? Europe for a full 6 months, traveling in a motorhome, stopping whenever the urge hits!

8) If you could go to the Oscars, who would you want to sit next to? I am stumped! I think it would have to be… John Travolta! Yes! I absolutely love him!

9) If there was something you could do over, what would it be? I would have been gentler on myself when I received my son’s diagnosis. I wish I had known then what I know now – I would have cried less I think…

10) What is your most frightening moment? Finding Malakai in his cot with his mosquito-net wrapped around his head and neck… Don’t know how he did it, but it frightened me to death!

11) What was the last movie you watched? The Bucket List

12) What is the luckiest thing that ever happened to you? My whole life – everything I have truly needed has been there for me. My husband, my son, my family and friends.

13) If you had a whole day to yourself with no work, commitments or interruptions what would you do? Take a road-trip to somewhere nice and have a picnic!

14) Is there a major goal you have that you haven't yet achieved? Getting a degree… I’ve studied for 4 years, but I keep on changing my major!!

15) What is the first job you had? I was a teller on a Friday afternoon and Saturday morning for a bottle/liquor store…

16) What is something that those in blog land might not know about you? I’ve shaved my head. Completely. And loved it!

17) What is something simple that relaxes you and you enjoying doing? Singing along to my favourite songs (at full volume of course) in the car

18) Do you make time for yourself everyday, and if so, what do you do? I don’t always do it, but I try to regularly run a bath, take my book and just soak…

19.)What is the last book you read? Other than the obvious parenting/sleeping/eating type books, my last was Roadmap to Holland.
Now to pass on the awarding of the award:

There are so many moms out there that really amaze me with their journeys and stories! But if I had to choose…

1. Melissa from Having Fun at Home with Master Dillon - for her constant strength, doing it better than I ever could!

2. Kacey from Ella Grace with the Pretty Face - for making me smile. Ella Grace has just crept into my heart...

3. Laura from Gracie’s Gift of 47 - for making the biggest effort to keep her blog positive, sharing amazing true stories of inspiration!

4. Tara Marie from Emma Sage - for having such a beautiful blog. Words, Pictures, Stories... everything!

5. Lisa from Bridget’s Light - for being such a powerful writer, her words simply Inspire me!

6. Jennifer from Three’s a Charm - for being on a constant journey of discovery, and then Sharing with all us so that we too may understand better...

7. Samm from Deqlan Higgins - for being just the most gentle and positive person that I know... well... in Person!! For being an amazing mom, friend, carer and advocate!

8. Chris from Mothering by the Seat of my Pants - for having a blog that is just always a joy to read! Everytime I see a new post, I just know I'm going to love it!

To visit all these wonderful blogs and more, please see my sidebar for the links (I don't know how to link them on the post...)

Spread the word...

This is an initiative that is all about the impact we have on others simply by what we say. I have been guilty in the past of using the word... so I can say from experience that when I used the word it was never in a positive light. I never knew the impact that saying the word could have. Until now.

I am now aware of how using this word Hurts, Embarrasses & Divides. Take a moment to think of how this word is aimed at a part of our society, a group of individuals, who don't deserve it. The word causes pain. It bites. It sniggers and sneers.

There are over 175 million learning disabled people living on the planet. They are a part of our society. They are our sons, our daughters, our siblings, our neighbours. They offer up love, lessons and friendship - if you'd stop and notice.

Please think before you use it. Please spread the word to end the word.

Shout Out!

Have I mentioned before that being a working mom is difficult??? I'm not sure???

Anyway! I've come to accept (and even embrace) that 'busy' will always be an adjective in my life for at least the next 20 years! Whew! But when my day becomes positively hectic, then it's always a blessing to have great friends!

When Malakai was born, we made the decision that we didn't want him to go to daycare if we could help it. Now, I know for many people this isn't even an option, so we are very blessed to be able to afford someone to look after Malakai while I'm at work. We are blessed that he is the focus of someone's attention during the day and that his nanny can do all his excercises with him, play with him, and they have really formed an amazing bond.

This is great - most days. Not today though.

Today Malakai's nanny did not come to work. She gave me about 14 hours notice that she wouldn't be coming to work. Which gave me hardly any time at all to make a plan B for Malakai. No notice = hectic!

I really don't like asking for help - I really don't. But I had to suck it up and ask my dear friend Megan if she would be able to help out today. She was only too happy to do this! Thank you Megs!

So Malakai had a bit of a Mini-Daytrip today! I know he enjoyed himself and I am so grateful to Megan for helping us out in this situation.

It is ideal (in my opinion) for Malakai to have individual attention at home, but that also means that when my nanny can't be here, she can't be here. That's it. Make another plan. Quick.

Well - believe me... today was one of those that I'm very glad to have behind me. But one that I know I may face again sometime. It wasn't easy to ask, plan, and execute - but friends always the make the journey easier, more bearable... more than ok.

Shout out Megs! You really made my day (and Malakai's)!

Gratitude

Down syndrome.

That term, which after almost 7 months of research, reading, talking, and getting to 'understand', is still so unclear to me. No two children are the same, even those children that have an extra 21st chromosome. It seems obvious now - but when I began this journey I honestly thought there would be a road-map or at least a few 'absolutes'! But Malakai's development will be completely his own - unique and special.

So why did I label this post 'gratitude'? Well, because I am just that! I am grateful for my son - completely. Would I wish him any different? Even just a tiny bit? No. Not today. Maybe tomorrow I will feel different, but today I can sit here and my heart is bursting and aching with gratitude for my son. For his softness, for his gentle nature, for the way he laughs as though he's choking on a sneeze, for the way he's learning about his world in his way.

This weekend I met friend's little girl for the first time. She was born a week before Malakai. She is gorgeous - really! And when I took her in my arms my heart constricted ever so slightly... a little hurt... I had to step back into myself and look at this little feeling, bewildered. But I thought I had dealt with this? I thought I was ok?

What I realised was that sometimes I will be a little sad, a little lost. But all I have to do is look at my son. Look at his love, his openness, his joy, his life. He is perfect, he is beautiful, he fills me with so much love and pride that I can burst.

Can you be grateful for Down syndrome? Yes you can. Yes I can. How? Why? Because it is a gift. It is a road that will take you to places you never thought of, to meet people you would never have met, to learn lessons that you would never have been blessed to learn. A little more compassion. A lot more understanding and respect for that part of society that is deemed 'less than'. For never underestimating the human spirit, the fight to live and be loved.

Thank you. I am thanking you for Malakai's beautiful almond shaped eyes. For Malakai's little hands that are creased in half. For the little fold on his right ear. For his little feet, big toe seperated from the others by his 'sandal gap'. For that extra bit of skin on the back of his neck that is so kissable! For these things are the outward physical signs of his extra chromosome, but together they make up more than that sum of their parts.

Down syndrome - those two words have changed my life... for the better... without a doubt.

This and that...

I'll take two... thanks...

What????

Really... What????

Moms! Can't leave us alone!!

I feel as though my life revolves squarely around Home, Work, Eat & Sleep... four points... day after day.

That is not to say that I am not incredibly grateful for my life, my family and my work - I am blessed beyond all measure! It is just that... well... I need to get into my 'new' life as a mommy. After 28 years of doing my own thing really, I need to consider the needs of another little person and this includes going back to my full-time job in order to ensure we are financially secure enough to provide for our son at the moment.

The long and the short of it??? Get to the point???

I don't really have much news. Exciting news.

It is really the day-to-day stuff of life, the stuff that makes up a family's life together - this 'stuff' is worth celebrating and embracing because it means we are ok.

So! My week?

Malakai is doing fantastic (as usual!). He still loves his food and is getting much better at controlling his mid-section while *attempting* to sit. He has recently decided that he only wants Joyce (his nanny) or me to feed him though... keeping me thoroughly busy while my dear husband watches on, unable to assist...

We attended our first Down syndrome Parents Evening on Friday. The experience was completely awkward, sitting around a sparsely furnished room in a circle of white chairs, with a bunch of people we would never have ordinarily met, all because we share an extra chromosome in our family... Other than the obvious feelings of being uncomfortable - it went off quite well! There are many babies in the group and local area and we have decided to meet once a month - so I am sure where there is now awkwardness will soon be interest, then sharing and then (hopefully) friendship - for both us and our children! The group is a local division of our National Down Syndrome Association and they offer many great services such as therapy, linking parents together, outreach programmes, placement of our children in integrated schooling and eventually opportunities in the open job market. They came to see me when Malakai was first born, and I have found that they have always been open, friendly and completely supportive.

Otherwise, our weekend has (as always) been just too short! It was Caden's 1st birthday party on Saturday (little love-bug)! It was great to lie under the trees, enjoy burgers and play with our kiddos!

Ok - so four points... that's it! Nothing really exciting...

I think it's definitely time for new pictures!!

Malakai just loves food!

This is his favourite time of day (and mine too)!

There is nothing like meeting your child's needs - you know he wants it, you know you can give it to him, he's a happy camper, and you're a happier mommy!

I just love it!

Maybe I'm just hormonal...

...but I could just stick my head underground and stay there for a couple of months!

*warning... this is about to get mushy*

I am having a 'save the world' week... By this I mean that I take a whole bunch of stuff that I have absolutely no control over and worry about it until my head runs around in circles... it's definitely the hormones I think... urgh!!

The global financial crisis, local crime, orphaned children, captive animals & the destruction of our natural resources - it's all so scary and so overwhelming! I just don't know when people decided it was ok to discriminate, take without giving back, abuse and look the other way... How do they sleep at night? Do they sleep at night? Is it any of my business what their sleeping patterns are?

I think it has something to do with becoming a mother - all of a sudden my actions (their actions) are shaping the future for my son. What I do today has a direct effect on my son's tomorrow.

Can I change most of the things that I fear? Poverty, crime, pollution, greed, disrespect? I realise that I cannot have much effect on something that is happening on the other side of the world... but I can change my family, my work environment and the small community around me. I can choose to switch off the unnecessary lights, conserve fuel, eat organic, rescue the stray dog on my block, save a little extra, raise awareness, smile at a stranger, offer help where it's needed. Those are things I can do. Today. For my son's tomorrow.

So, *with hormones raging* I am really going to try to do just my little bit. Nothing extravagant, just simple acts of sensibility in a world that seems to have lost it's direction somewhat. I can make an effort to keep my little world as peaceful and positive as it can be, for Malakai.

Be the Change you want to see in the World

(Ghandi)

(sorry for the rant...)
Loren

Letter from Granny Dye

Dearest Malakai,

Here is another letter from Granny Dye - she misses you so much!!

Dearest Malakai,

Thank you for opening up my world! Through you I have been privileged to be introduced to a worldwide community of parents and their children who have an abundance of gentle strength.

Before your birth all I knew about Ds was that there was an extra chromosome involved. To me these children had challenges that were no different to any other children. Your Blog has taught me so much more and I continue to learn each day.

I am inspired by beautiful people who grab whatever life delivers and do their own very best in every moment. I watch you and see your determination to keep trying until you reach your own potential which is absolutely perfect for you - A lesson that most people spend their entire lives trying to learn.

If the world followed your example, we would all be supported by perfect acknowledgement, unconditional love and comforting peace.

I Love YOU
Granny

Thank you mom!

I won an award!!

Awarded to me by Ruby's Mom

WOW!!!

*ahem*

I won an award!! Woo Hoo!! (can you tell it's my first?)

I've said it before and I'll say it again (yes...) - the blogging community is a place that I absolutely love! Full of amazing moms doing amazing stuff with amazing kids! Blogging has taken the 'science' out of my son's diagnosis and allowed me to glimse (thank you) at the life that is possible!

Now I must nominate 10 other bloggers (which will take some serious thought, because I love so many!) for this award - let's keep the love movin'

Happy 6 Month Birthday!

6 months ago today... what can I say?

My dearest boy, you are the most beautiful gift that we have ever received - so much more than we ever knew we wanted!

These last 6 months have been a journey for your dad and I. A journey of surprise, of learning, of acceptance, of joy, and of absolute LOVE! You have never failed to amaze us and a single smile from you is enough to make sense of everything, to bring a peace (and flutter) to our hearts.

We love you and words seem to fail to truly describe just how much.

Love,

Mom & Dad

HMPF!

Ok, so we had an evaluation at our new PT (another one...) yesterday and when asked where he is developmentally, we casually confirmed that Malakai is rolling all over the place... like, no big deal or anything...
And what do you think he does for the entire one hour session???? He lies on his back, like a starfish... like a very lame starfish...
HMPF! (as in the sound an frustrated hippo would make...)
The more I tried to tell the lady that he usually spends all his time on his tummy and rolls here and there and everywhere, the more she just looked at me with those 'some parents are just soooo out of touch with reality' eyes.
HMPF!

WTG My Boy!

Dearest Malakai,

Way to go my boy!!! I am so proud of you - I wish you could hear me as I literally sing those words at the top of my voice!!

"Why mommy? Why?" I hear you ask, just as excited as me, your eyes all sparkly...

Last night you showed me that as little as you are, you are soooo clever! I decided to see if you would move towards something that you like and you didn't waste a minute in showing me just how clever you are! I put your favourite singing toy (a little tortoise that lights up and plays music) off to your left and you rolled over to get closer to it! Then I moved it to the right of you and you rolled over to get closer to it again! Yay!!

"OK, so why is that so exciting mom?"

Well, it's exciting because it means that you're understanding your sensory experiences and making decisions based on that. So, you are able to see and hear your tortoise, decide that you like it enough to want to get closer and then work on a plan (roll left or roll right) to get yourself there. That means that you're super clever my angel! I can't wait to tell Meena (your new OT) tomorrow!!

You are really so fantastic and this new rolling to fetch your tortoise has just made me so proud of you - well done my little boy! Your dad and I love you soooo much!

You are all my Reasons for Being,
Love,
Mom