I want to be his hero

This morning, while I was grabbing a quick shower, the boys spotted one of Aiden’s birthday presents at the top of the cupboard. I explained that Aiden’s birthday wasn’t for another week and that he couldn’t have it now, but Cam was determined to get it for him. 

While I was getting dressed, Cam kept trying. First he fetched a stepladder. When that didn’t work, he collected pillows from throughout the house and tried to build a tower with those. 

As impressed as I was by his persistence, I was about to get annoyed with Cam for disobeying my instructions. But then he turned to Aiden and said, ‘I’ll get it for you Aidy. I won’t let you down.’ That stopped me in my tracks. 

I took Cam aside for a little chat. I told him that it was lovely of him to help his brother but we needed to wait for Aiden’s birthday. And then Cam said, ‘But I want to be his hero.’ I couldn’t shut that down. So I grabbed the ladder, lifted him up to the top of the cupboard, and victoriously, he presented the prize to his brother. 

And I’m thinking, this is one of those teachable moments parenting gurus are always going on about. Delayed gratification is an important lesson for my boys to learn. But relying on each other? Helping each other? Being heroes for each other? That’s important too. 

I could leave this post here. I could end off by saying there’ll be other presents on Aiden’s birthday, but maybe this one will make a lasting impression for more important reasons – for both of them. But even as I congratulated myself on imparting wisdom to my offspring, even as I basked in the glow of my wonderous parenting, they started squabbling over the trains. Then Cameron started asking for juice and within moments that had escalated to a full-blown meltdown because I said he couldn’t have any. That lesson on delayed gratification involved tears, foot stamping and door slamming, before evolving into a tantrum about not going to school that lasted the entire drive there. 

I stand by my decision to let Cam get the present for Aiden. I hope it taught him that when one is persistent for the right reasons, it pays off. That he got a warm and fuzzy feeling inside from seeing Aiden’s delight, and that it showed him that putting others first makes us feel good. I truly believe his intentions were noble, that I saw a bit of gold in him and went after it. 

And the fight about the juice? As emotionally exhausting as it was, I had to do it. I know it’s just juice, but I hope he learnt that he can’t get his way just by throwing an almighty tantrum. That sometimes the answer is ‘no’ and we just have to accept that. But I always find these stand-offs leave a bitter taste in my mouth – maybe because they push me so close to losing my temper? 

As I sit here enjoying a quite moment while Aiden naps and Cam’s at school, I marvel at how much these little people pack into our hours. Golden moments followed by tough ones. Smiles followed by tears. It’s exhausting. It’s an emotional roller coaster. And there’s no getting off! I’ve just got to hang on and try to enjoy the scenery as it whizzes past. 


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. 

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. 

Prison Break, Season 2

Right. So we’ve had a crazy week and a half. On Wednesday 3 September, after spending a crafty day making blinds for the lounge, I started feeling that nasty back pain I had when I went into preterm labour with Cameron at 32 weeks. I phoned the doctor who sent me a script for pain killers and told me to take a warm bath. But an hour later I could still feel my uterus hardening so I packed a bag and Col took me off to hospital. I was admitted and spent three nights there in what felt like the worst sort of déjà-vu.

Colin and I were completely blindsided by this turn of events and spent the first 24 hours is a state of total shock. We just couldn’t believe it was happening again. The doctor hadn’t been able to tell us why I went into preterm labour with Cameron, and at our scan on Thursday afternoon he couldn’t give us a reason once again as the baby was absolutely fine from what he could see. But on the Friday morning, blood tests showed that my white blood cell count was high, meaning that I had some sort of infection. I was put on two antibiotics, and felt somewhat relieved that there was at least a reason for this repeat performance.

I was discharged on Saturday as my white blood cell count was dropping and clearly the antibiotics were doing the trick. The doctor told me to take it very easy for the first week and I’ve spent the last eight days either lying in bed reading or in my hammock contemplating life. It’s been quite peaceful really, especially since Thursday when I finished my medication and slowly started to feel like I had a functioning brain again!

And then in a nasty plot twist, yesterday afternoon I went into labour again. It escalated much more quickly this time and by the time we arrived at the hospital I was in substantial pain and could feel the individual contractions (previously it’s just been a constant sort of pain). So here I lie once again, hooked up to the fetal monitor and looping out on meds.

Whether it’s the medication, the shock or a defense mechanism, I’m feeling rather numb at this point. But when I do try to analyze my emotions I find anger, frustration and fear all bubbling around. I feel let down by my body which seems to have some sort of objection to being in the third trimester of pregnancy, and an utterly fruitless anger at the situation in general. I’m frustrated by the lack of understanding about why this is happening. And I’m scared – about this baby being born prematurely, about the possibility of spending the next seven weeks in and out of hospital, and about how all of this is affecting Cameron who we’d just managed to settle after my first hospital stint.

The fighter in me is still hoping to carry this baby to term and to even, God-willing, have a natural delivery. I’m quite aware that this sounds utterly ludicrous and unfeasible at this point, but that hope feels like a lifeline right now so I’m holding onto it. Aside from that, all I can do now is wait.

Our first family mini-break

This post is two weeks late but things have been a bit busy and this is the first chance I’m getting to update my blog. Two weeks ago we went to Dullstroom for the weekend with our good friends, the Maritz family. Dullstroom is a beautiful little town in Mpumalanga – the place is so tranquil that you just can’t help relaxing and with the busyness of the end of year we all needed a breather. In addition, Stef and Sophia are Cameron’s godparents and it was really great to have some time to just chill out with them and their kiddies, Daniella and Michael.

We spent a wonderful weekend with chilly evenings and beautiful days. On the Saturday we went trout fishing (unsuccessfully), explored the town and our surroundings and Sophs and I managed to fit in a massage (utter bliss). In the evenings we lit a fire around which we enjoyed great food and long chats. Relaxing as it was though, it was also a bit of an eye opener in terms of what travelling with a baby involves …

Firstly we played Tetris trying to fit everything into the car. Then we had to break our journey twice to give Cam a break (in the past we would have done a trip like that without any stops). On arrival we nobly attempted to stick to the routine and gave Cam his bath before putting him down. However between the chilly weather, new surroundings, long trip and bath in the basin we landed up with one seriously over-stimulated child and had a two hour crying marathon before he passed out. By the time the Maritz’s arrived we were looking pretty haggard and in need of a large glass of wine.

After a disturbed night of sleep (Cam was sleeping in our room and we’d forgotten just how noisy he is), we took a much more relaxed approach to Saturday. After a busy morning he fell asleep around 15:00 and didn’t wake until 20:00. We skipped his bath, gave him another feed and put him down. He went right back to sleep and only woke twice for further feeds. New rule – don’t bother with the routine for short trips!

Feeling refreshed and rejuvenated we headed home after a coffee stop in Dullstroom. On the trip there Cam had gotten cranky when he needed a feed but otherwise was okay (I landed up feeding him in the parking lot of the Belfast Spar – it should be noted that Belfast is incredibly dodgy and not an ideal spot to stop) . Since I’d fed him just before leaving our hope was that he’d sleep the whole way home. It started off well but then we had to stop for petrol and as soon as the car stopped Cam woke up. We then endured half an hour of Banshee Baby before the next garage. Twenty minutes from home he started up again, with the result that when we finally pulled into our complex Col and I were partially deaf and in need of another weekend away!

While travelling with a baby is more stressful, anything is hardest the first time and we know that the next time will be a bit easier. A bit of Banshee Baby is a small price to pay for family memories and we are looking forward to our next adventure already.

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