Aiden – a survivor and a super star

There’s a song by Baz Luhrmann called Sunscreen. He says worrying about the future is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life will always be things that never crossed your worried mind. – Tim, About Time

When I watched About Time a few weeks ago, this quote really struck me, because it so encapsulates the unexpected turn our lives took two and a half months ago. It’s a difficult thing to write about,  but for the sake of closure on the journey so far I’m going to give it a go. Maybe putting it out there in the big wide world will take me a few steps further down the road of acceptance too. 

I suppose the best place to start is at the beginning …. 

A few months ago we started to notice that Aiden wasn’t using his left hand and was falling behind on some developmental milestones. An OT assessment and a conversation with Colin’s doctor sister later, we found ourselves in a paedetric neurologist’s office on the 2nd of September. The neurologist examined Aiden and then told us he thought Aiden had suffered a mild stroke before birth. He sent us for an MRI, after which we reconvened in his office to look at the scan. I will never forget that afternoon – a day when previously distant concepts crashed into my world, surreal yet crushingly real all at once. 

The MRI showed that Aiden suffered a severe peri-natal stroke consisting of a shower of clots, and consequently has extensive damage to the right hemisphere of his brain. He has been diagnosed with cerebral palsy, manifesting as left hemiplegia. We’ve since discovered that his right leg has also been affected, so while it hasn’t been confirmed by the neurologist (we only see him again in April), his therapists are treating him for diplegia as well. Within these hard and heavy words though, there is a lot of hope. Despite the severity of the stroke, Aiden is showing remarkable functionality. So much so, that the neurologist was frankly amazed. His speech and vision don’t appear to be affected, and the delight of his temperament is something everyone who meets him remarks on. 

Those are the facts. 

The emotional implications are much harder to express, partly just because we’ve gone through so much since receiving Aiden’s diagnosis. The first six to eight weeks were utterly awful. We thought and talked about it non-stop – we couldn’t turn it off. Short-term implications, long-term implications. Anger. Grief. Denial. Fear. Worry. It was all there and it was exhausting. But one can’t maintain that pace and expend that much emotional energy for too long. Eventually the storm blew out. We burnt out. We are in a different space now. We can talk about the effects of the stroke without breaking down. We’re a little more detached, and a lot more knowledgeable. Aiden’s physio and occupational therapy are now part of our routine. But we are still in the process of accepting this awful, horrible, unfair thing that happened to our boy. An event that we had no control over and that we could not have prevented. It’s not something you get over – it’s something you learn to carry. And the responsibility of it is heavy. 

The hardest thing is the uncertainty. We just don’t know how the stroke will affect Aiden in years to come. At the moment the impact is manifesting as a gross motor development delay. Aiden is nearly 14 months but isn’t crawling, cruising or moving independently. He only started sitting three months ago. He’s got the physical capabilities of a 7/8 month old because of his low muscle tone, but the desires and instincts of a pre-toddler. It’s frustrating for him and hard on us. But we have a lot on our side – early diagnosis and intervention, great doctors, plasticity – and he is showing a lot of progress from the therapy already. He’s using his left hand a lot more, is starting to transition between positions and is trying to pull himself up on things. But it’s hard to keep fear from the heart. It’s hard not to compare. It’s hard, but so vital, to hold onto hope.

In the process of processing there have been a number of things that have lodged in my heart and are helping me move forward. One of them is the word ‘tension’. Some wise people we met recently, who are on a different journey but in some ways a similiar one, warned us that the fear of the future is not something that goes away. They also warned that the things you worry about aren’t necessarily the hard things, and the challenges often come from unexpected quarters. There’s tension between reality and expectations. There’s tension between carrying on with life and learning to carry this new load. There’s tension between realism and hope. The tension will not go away, but we will learn to manage it better. 

It hasn’t even been three months since this bomb went off. Debris is still falling from the sky. There’s so much more to say, but it’s impossible to recount all we’ve been through, and I’m not sure it would be a helpful exercise. The important thing is that we are starting to recognize and focus on things that we can be grateful for in this new reality. And the biggest thing is Aiden. He is a precious, wonderful child who’s place is so deeply entrenched in our hearts and who’s value is so indescribable. He’s a fighter, a survivor, our little fiery one. And we love him madly. 



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Aiden’s nine month update

Our hopscotchy, bunk-doodling, splendiferous, wondercrump, whoopsey-splunkers, phiz-whizzing, whipple-scrumptious ickle grunion is now nine-months old. The physical transformation I described in my last post is now going toe-to-toe with the emergence of a delightful personality. Somewhere in the last two months our solemn baby has transformed into a cheerful little cherub. His vocal range is much in evidence and we’re finding ticklish spots that never fail to elicit a heart-warming chuckle.  Aiden’s social side is becoming more evident. The time Colin has put in with Aidy lately is really showing dividends, and our boy always has a smile for his daddy, even if he is mid-howl when Col walks through the door. It’s quite funny to watch this crying child stop, assess, smile, and then go right on crying again! 

As far as the brothers go, there’s a simply beautiful relationship developing. Aiden really has eyes for Cam and will endure an surprising amount of abuse at his hands. Being whacked on the head with a variety of objects doesn’t seem to bother him if his brother is doing the whacking! (Obviously we don’t encourage the head-whacking and are trying to promote gentler interactions!) Cam is great at imitating the noises Aiden makes, which Aiden simply loves. He’s also building up a reportoire of tricks that always get a smile or giggle from his adoring younger brother.  We have been a bit worried about Aiden’s development as there are a few milestones he hasn’t reached yet – like sitting on his own and reaching for his toes. So earlier this week we took him to an OT friend of ours for an assessment. She said that there’s nothing to worry about. He is behind in some areas, but ahead in others, which is quite normal for a prem baby. Developmentally, he’s about the same as a seven-month old and she’s told us not to expect more. It’s amazing how big the difference is from being born those few days earlier than Cam was, even though he was also prem. We’ve got some exercises to do now to help Aiden catch up and I’m sure it will come right soon. 

I’ve seen a marked difference in the past two months in terms of my ability to cope. Having two little ones is becoming much more manageable with every month that Aiden gets older. It gives me hope that our plan of having the boys close together wasn’t so foolhardy after all!   

Aiden’s seven-month update

Our bunk-doodling, splendiferous, wondercrump, whoopsey-splunkers, phiz-whizzing, whipple-scrumptious ickle grunion is seven-months old now and is going through a bit of a transformation. In the last week he’s started rolling from his tummy to his back and is starting to experiment with moving his body. There is much back arching, half rolling, leg lifting and arm waving in evidence as he starts to figure out what these limbs of his can do. He’s starting to grasp nicely, is enjoying tummy time a bit more and has even achieving a bit of lateral movement through wriggling. We watch the process with relief and delight. 

Our Aidy-bug is clocking in at seven kilograms. He outgrew the Moses basket about three weeks ago and is now sleeping in the big cot. There are still no teeth, which brings us to three solid months of unnecessary teething gel use! He’s enjoying solid food, but we’ve been introducing these very gradually as his digestive system has been struggling a bit. He gets really cross if the next spoonful takes to long to appear, or horror of horrors, his portion is finished! The reflux is still bothering him a bit but I’ve stopped the medication he was on for it, and it’s manageable without it so we’re grateful for that. He’s also really bonded with Colin in the last few months and lights up whenever he sees him.

On Saturday night he had his first sleep over at Colin’s mom while we were at a wedding. Col and I enjoyed our 20 child-free hours immensely, the seven hours of uninterrupted sleep being my favorite bit! Laura, Menno and Leigh-Anne in turn survived their 20 hours of babysitting, even if everyone concerned was exhausted by the end of it. 



How I survived my first six months with a toddler and a tiny baby 

A letter to an expecting mom who already has a toddler. 

Dear mommy-friend

In my previous life (you know, the one where I actually used to sleep) I was a bit of an adrenaline junkie. Ever since my parents took us to Disney World when I was 14, I have loved roller coasters. There’s nothing quite like that moment of anticipation when you have climbed ever so slowly up, up, up and are now braced and waiting for that first stomach-churning plunge. You wait on the precipice, totally committed and hugely excited, yet a small part of you is shouting ‘This is madness! Get me out of here!’ And then it begins, and you just have to go with it. A barrage of swirling, twisting, turning, flashing that leaves you breathless with laughter and flushed with excitement. It’s over before you know it, and that moment of apprehension is forgotten in the tidal wave of adrenaline and the relief of solid ground beneath your feet once more. Continue reading

Aiden’s six-month update

Our splendiferous, wondercrump, whoopsey-splunkers, phiz-whizzing, whipple-scrumptious ickle grunion is six-months old today and thriving. He’s such a happy little chap, is getting delightfully vocal and bestows charming grins with marvellous generosity. At 6.7kg, he’s getting really chubby. His eye colour is changing from blue to the browny-green Colin has. His hair still has a reddish tinge, but it’s hard to know what colour the new hair is as it’s still so fine and there’s not much of it. 

He’s coping well with his older brother’s increasingly boisterous affections. On Saturday he had his first taste of solids. Cameron got very excited about this milestone and took it upon himself to make sure it took place. So not only did Aiden have to cope with an entirely new texture, he had to cope with it as speed as his brother kept the spoonfuls coming! He didn’t bat an eyelid, swallowed his sweet potato happily and seems content with his place in the pecking order. 

We’ve been working hard at our exercises and Aidy is starting to roll over by himself (when on a slope and given a gentle push-start). He’s also starting to sit nicely when supported. There are no teeth in sight yet, but he is chomping on whatever he can grab so perhaps they are imminent. 

His personality is emerging and we are getting to know a friendly, pensive, calm little man. We just love him madly. 

Aiden’s four month update

Last Friday we hit the four-month mark with Aiden. He’s picking up weight well but is a small little fellow, clocking in at the lower end of the growth chart. Perhaps the Goodwin genes are stronger in this one; perhaps he’s just a late bloomer. Time will tell.

At 11 weeks old (14 December to be precise) he started smiling, and this time round I was the lucky recipient of his first grin. He’s gurgling delightfully and his level of interaction grows each day. He’s generally a very easy baby and, as non-first children must, has learnt to be fairly adaptable. He loves being in both the sling and wrap, neither of which I got right with Cam.

The only thing blighting our existence right now is Aidy’s reflux. Just when I think it’s getting better it seems to get worse again. He’s also struggling with wind and those pesky ones that I don’t manage to get out during the day, build up and come back to haunt us at 3am. It’s for this reason that I chose ‘ickle grunion’ (little someone who moans) as the Roald Dahl phrase for this month’s photo – the soundtrack to our wee hours is the poor mite complaining about wind-related discomfort.

We are nearly at the three-month mark in terms of his corrected age, and I mention this with a mixture of trepidation and hope. Hope, because at three months some things usually get easier – winding, longer stretches between feeds, more interaction to fill one’s heart. But trepidation too because at four months Cameron started cutting his first tooth and The Dark Days (which lasted for the next five months) began.

In some ways the last four months have flown by, in others I feel like my entire life has become a never ending loop of feeding, burping, rocking … Do it all again. But from our previous flip on this ride I know how many changes come about in the months ahead – solid food, more sleep, mobility! So at the risk of having to eat my words, I’m going to say that it feels like we are through the hardest bit. The very fact I have written this post after months of silence seems proof of that. We live in hope!

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The tiny people days

There’s a song on the radio at the moment called ‘The Days’ by Avicii. It’s one of those upbeat summer anthem types, yet I can’t listen to it without getting choked up. Because while the carefree lyrics are, I think, aimed at those in their halcyon university years, somehow they have come to carry a much more substantial meaning to me. While I have found various lines that are applicable to me for weird, personal reasons, it’s really the chorus that gets me:

These are the days we’ve been waiting for
And days like these who couldn’t ask for more
Keep them coming
Cause we’re not done yet
These are the days we won’t regret
These are the days we won’t forget

On good days, these words feed into my joy. On bad days, they become a bit of a mantra, helping me regain a bit of perspective and reminding me of the value of the time I’m investing in my tiny people.

Colin and I often talk about the paradox of the toddler years. They are so fundamental to who we become, yet we don’t remember them. As children we don’t remember how cute we were, or all the games and outings we had. But as parents, once the trauma of sleep deprivation has passed, I think they become golden years. Already I know we are going to miss these days and look back on them with nostalgic fondness. And isn’t that the strange thing about time? Because right now, the average day is pretty hard!

The exhausting days
At two months old, Aiden is now such a part of our family that it’s hard to imagine a time without him. But wow, it is exhausting! Cameron is an absolute whirlwind, always on the go and perpetually bursting with energy. When that force (and believe me, it is a force) is combined with the energy depleting nature of breastfeeding and broken nights, it’s a deadly cocktail. And so the exhausting days have a number of spin offs including the ‘forgetful’ days, the ‘impatient’ days and the ‘what were we thinking having another kiddie so soon’ days.

One of my challenges at the moment is that my reserves have been depleted by a long and tough year. So I reach that tired, emotional breakdown point, where everything feels overwhelming, much more frequently that I did when Cam was a newborn. As Col is also suffering from burnout we are having to regularly call in the grandmother reinforcements. We are just so grateful to have both our moms near by and available.

The ‘just say no’ days
I am finding that if I keep my social and personal engagements to a bare minimum, and focus my energy on Cameron and Aiden, then life can be really pleasant. But the problem with this strategy is that it doesn’t leave any time for Colin or myself, and after a while I start to crave something other than finger painting, playing dinos, reading stories and rocking Aiden to sleep. But the moment I let my expectations include something not toddler or baby friendly, tension immediately arises because Cam wants to be involved or Aiden refuses to sleep and I quickly find myself frustrated and impatient.

So right now I am just trying to say no. It’s especially hard at this time of year when there is so much going on socially, and there are so many little traditions that I love but need to shelve (like making fudge – a truly risky undertaking when one is at the mercy of temperamental nap times).

The rapidly changing days
The equilibrium of peace and merriment in our house can change in an instant. We go from playing happily outside, with Aiden gurgling away under a tree, to Cameron hurting himself and throwing all his resources into fighting off my Savlon wielding hands. By the time Cam is sorted, Aiden in inevitably crying and my half drunk tea is stone cold. Next thing I know I am utterly drained and wondering bemusedly how twenty minutes ago I was feeling so energetic.

The thankful days
One of my coping strategies at the moment is my Happier app. I try to end off each day by sharing three things I am grateful for. Even on tough days there are usually far more than three. Because Cameron is just so delightful, coming up with the cutest statements and antics. Because our house and garden is a blessing and is full of unexpected wonders if you have the time to look for them. (For example, two days ago we saw a pair of hoopoes mating!) Because Aiden is growing before our very eyes and is starting to give us glimpses of his personality. So back to Avicii:

These are the days we’ve been waiting for
Neither of us knows what’s in store
You just roll your window down and place your bets
These are the days we won’t regret
These are the days we’ll never forget

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