Happy Birthday Harlan

Dearest Harlan,

So here we are my boy - 365 days since you came screaming (literally) into the world. When I think of the last year, what comes to mind the most is your determined spirit. From the first day you were born, you have made your feelings known - that's for sure!

Your first couple of months were difficult for you - and it was terrible for me to watch you being uncomfortable and unhappy, without much that I could do to help. I often worried how you would 'learn' to be happy with so few happy moments to go on... But boy was I wrong! You are about the happiest little guy I've ever met (when you're not tired or hungry...)!

You brighten my day and challenge my resolve, you make me think twice and inspire me to give you the best. Your love for me is amazing - I didn't realise that someone so small could give so much love!

So, in the past year you have gone from helpless little baby to a fully mobile almost-toddler! You are not walking yet, but I am convinced it's because in order to learn to walk, you need to slow down a bit... not something you know how to do!

You do everything at warp speed - you crawl from one place to another faster than I've ever seen a baby crawl (you actually kind of 'run' on your hands and knees...). You climb up on things and want to imitate everything that your brother does... not always safe though my angel!

You love to eat and your favourite word is 'more' - which you repeat over and over again while you eat breakfast, lunch, dinner and each snack in between!  You can also say 'ball', 'dada', 'mama', 'woof' and 'juice'. You wave good-bye, do the signs for 'finished' and 'sleep' and you give everyone copious amounts of wide-mouthed kisses!

This last year has been an amazing journey for me, Daddy and Malakai - getting to know you and making you part of our little family. We love you so much and think you're one amazing little boy!

All our love baby boy!

Hooray!

Malakai's first two weeks at school have all-in-all been a good experience. I really kept an open mind, which helped so much!

Unfortunately he has refused to eat the wonderful cooked lunches (I was so hoping he would see the other kids eating the lunch and buckle under the 'peer pressure', but no luck as yet). So, I'm packing him his standard sandwich and fruit combo - he's really fussy and will only eat certain kinds of sandwiches (peanut butter or bovril).

Also, he started crying when I dropped him off at school in the mornings - I mean, he stuck to me like velcro and his teacher had to literally pry him out of my arms. Luckily, I know of an excellent remedy based on Touch Therapy, which really helps when our little ones are feeling a bit emotionally insecure. Three days of touch therapy and this morning he jumped out my arms and ran to play!

As for the staff - I have watched, waited and not been pushy at all. I wanted them to discover the magic of Malakai all by themselves. I can't claim to know what they were thinking, but each one of the staff members has pulled me aside at some point this last week to tell me what a wonderful child Malakai is - how 'normal' he is... I am not offended by this description at all - I'm just pleased that their eyes have been opened to the possibilities that exist for every child (including those with different abilities). *smile*

Malakai was naturally a bit shy and reserved for the first few days, but his teacher tells me that he's really taking part now, and there are two little ones in his class that he is particularly close to. Everyday, I hear a story that makes my heart beat a bit faster with delight.

I believe that when learning about Noah's Ark, Malakai was the first to 'name' (using signs and animal sounds) most of the animals on the ark! Malakai is also very good at pointing to his various body parts, faster than the other kids apparently? And my favourite so far? During prayers, instead of saying 'amen' with the other kids, Malakai screams "Hooray!" with his hands in the air...

Be still my beating heart...

So - I'd say these first two weeks have been a raging success. They have far outstriped my wildest ideas (if I'd allowed myself to have any... which I didn't, pinkie-swear...).

'The' link...

I always like to think of myself as a fairly organised and highly inquisitive person. I do well when it comes to gathering information - let's say, I like to be informed, it gives me a sense of control (although I know that much in life is way beyond my control!).

Anyway!

When Malakai was born and we found out that he had Down syndrome, it was something that I knew very little about. I had not even really met any people before with Down syndrome (contrary to every. single. other. person.... who spoke to us in the first few days who all seemed to know someone, or had a neighbour or had a sibling with Down syndrome...)

After the initial shock wore off and I felt that I had truly come to bond with my new little baby, I immediately ordered several books from the internet and went on a mission to learn more about Down syndrome.

Within a couple of months I felt that I knew almost everything that there was to know about Down syndrome... well not everything, but at least everything that was important to Malakai's development and health.

But I didn't know everything. I missed out on ONE BIG THING... I noticed references to Down syndrome and Alzheimers, but I thought that was for when Malakai was older, much older... So, in my natural (and annoying) way of 'taking in only what is neccessary', I kind of skimmed over the subject of Alzheimers, thinking it wasn't relevant right now in our lives.

I was wrong.

It is so relevent, it is scary. I am still kind of struggling to understand it's impact (and I suppose so are the rest of the scientific community...) on Malakai's development, but I do know that it is here - right now.

From what I understand, scientists have discovered one of the genes found to cause Alzheimers on the 21st Chromosome. This gene, called the APP gene, is responsible for manufacturing a protein (called beta-amyloid protein) that, when in too large doses (as is the case with Alzheimers and Down syndrome), causes 'potholes' to form in the 'highways' between brain cells. And when brain cells are not talking to each nicely (because there are potholes everywhere), they tend to die off.

Now, in the general population - this gene becoming 'faulty' and overproducing the bad protein occurs much later in life (hence Alzheimers being primarily a disease of the aged). However, because people with Down syndrome have an additional copy of the 21st chromosome, and hence more of the bad protein, the damaging effects start... well... from birth. This is why the average age of Alzheimers onset in the Down syndrome population is between 25 and 30 years old.

I always believed that Down syndrome was a 'fixed' condition. By that, I mean that I believed our children are born with a fixed amount of cognitive challenges. Of course, we cannot know what these challenges are exactly, as they will differ from child to child - but through early intervention and loads of love and encouragement, our children will be able to achieve almost anything they set their minds to - albeit at a slower pace (and sometimes not even much slower at all).

I've always been soothed by the fact that we are doing everything we can for Malakai and that he's just so incredibly motivated and wants to learn. He is wonderful and beautiful and perfect. I wouldn't change him (or his extra chromosome) for anything.

But I find it distinctly disturbing and completely unnerving that there is this constant, daily, hourly overproduction of a protein that is killing his brain cells. I am devastated at the realisation that Down syndrome is not a fixed, but a progressive condition.  How do I come to this conclusion? Well, this APP gene and it's protein is over-produced in my child. This protein, when overproduced is absolutely known to cause plaques on the brain that slowly rob an individual of their cognitive ability...

So what now?

Well - thankfully, the race to find a cure for Alzheimers is on. Unfortunately, this is not because our beautiful children with Down syndrome are almost guaranteed to develop it - no... rather it is because so many in the general population are in danger of developing this terrible condition, the treatment of which will rise into the hundreds of millions of dollars when the Baby-Boomers hit their 70's and 80's. This is something that that most governments cannot afford... hence the race...

But what now? What about Malakai? What can be done for him and other little ones with Down syndrome... now?!

I know of drug trials that are being done, by a Doctor called George Capone at the Kennedy Krieger Institute in the US, on people with Down syndrome - drugs that will hopefully counteract, or at least slow down, the development of further cognitive delays. So I hold my breath and pray and hope that these drugs are successful. In fact, one of the youngters doing the trial is from a blog that I follow - you can read more about Hannah's bravery here.

Malakai's First Day!

Malakai started school on Tuesday... It was a wonderful day! I am so excited that he's going to be attending creche (half day for the moment) because I truly believe that there is only so much I can teach him... The rest he is going to learn from interacting with and emulating his peers.

So far he's been a bit reluctant to eat or drink anything at school - I don't know if it's because he's having so much fun that he doesn't want to stop, or if he's just unsure of things (and he's a fussy eater as it is..). But we'll see! I am sure he won't starve to death in a matter of days...

Otherwise, the teacher tells me that he's getting more involved with each passing day. On the first day, he kept pretty much to himself and just explored the buildings and the gardens. On the second day, he didn't partake in drawing-time, but played with toys close by. And on the third day, he participated with the other little kiddos during circle-music time, and he and another little girl played together nicely...

I am just sitting back and seeing how things go at this point.  Oh yes, I have my fears that he won't fit in, or that he'll throw something at another child and hurt them, or that he'll want to hug and touch the other kids all the time (he's very affectionate) which will freak them out. Oh yes... I have my fears that Malakai will be 'obviously' different. But I am doing very well at keeping these thoughts in check.

I will not create stories about this that don't need to be told.  I want the true stories, the true journey, the true magic to unfold naturally and without any colouring from me.

I know that Malakai will do well - I know that he'll thrive in a fun and busy environment. I know that he has social delays - but I am sure this a purely because he hasn't really been exposed to many other children in his life so far. And the only way he's going to learn will be through experience.

So, our first week at school has gone well!

Next stop... Happiness

Wow! What a trip the last two weeks have been! We've spent so much time with our little boys, and as we've always noticed, they really do blossom when mommy and daddy are around!

But, I must say I am thrilled to finally be sticking my toe in the tepid waters of a new year... There is something about a clean canvas that really gets my creative juices flowing... everything is just so hopeful, so exciting, so possible when a new year opens it's door.

Malakai is starting school in a week's time and I am so excited for him! He could not be more bored and more frustrated within the confines of the home that has been his 'safe place to fall' from his birth. It is perfect though - he's been given everything he's needed here so far, but he's ready, so ready to spread his little wings and get out there into the big world.

I have so much to prepare for him. A signing book so that his teacher knows the signs that he uses and is learning. A letter that I'm writing for the parents of the children in his class. A special meeting, where we will discuss where he is developmentally and where we're working towards.

Oh, here we go! My little boy is leaving the safety and security of our home, where I have been able to guide every aspect of his development, to a place where I no longer have such influence... But I am excited about this, because I know that I do not know everything... and the world... the world is his too.

As for Harlan - he's just so adorable and determined. I think we have a little warrior on our hands. I know that his stubborn nature can make things difficult right now, but in future, it will fuel the fire of his self-realisation. So I am trying to find a way to introduce boundaries without making dull that fiery spirit of his. And this is not easy, but who said parenting would be easy?

As for Darryl and myself - we've got our own dreams this year as well... Dreams that we want to realise, as best we can. And somehow - even after 2010 pushed us and squeezed us and pulled us to our knees - we feel that we have a fighting chance.

So I will end off my first post of 2011 with a quote that I shared when I finally decided to resign from my job and take on writing full-time... When I 'took the leap' into a dark abyss and really prayed that my wings would grow... I think sums up beautifully our vision for the coming year...

"The very least you can do in your life is to figure out what you hope for. The most you can do is live inside that hope, running down its hallways, touching the walls on both sides." - Barbara Kingsolver