Reflecting on a year of change

Farewell 2014Some years come and go with barely a ripple but for Anthony and I,  2014 was a year of extreme highs and extreme lows and was certainly one year that will be forever  etched in our minds.

In January we welcomed a healthy, albeit premmie, baby into our world and began discovering a whole new way of parenting – one that doesn’t involve therapists, medication and tube feeding. Continue reading

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When push comes to shove…it’s time to act on discipline

Behaviour chartOn receiving Aidan’s school report card this week, it appears that discipline is well and truly back on the agenda.

I’ve talked about discipline in the past (see When ‘no’ is the hardest word) and my fears about Aidan turning into another bratty, sick kid. Yet despite a concerted effort this year, Aidan continues to struggle with rules and it appears more needs to be done. Continue reading

Could I have a terrible teen?

Photo by Sanja Gjenero via SXC

Photo by Sanja Gjenero via SXC

Fourteen years old, an age I can’t even begin to fathom, but last week by some miracle a Pearsons child turned this magical number. As the oldest living child (that I know of) with Aidan’s disease, this gorgeous young lady provides hope for many of us with children battling this rare disease. It enables us to think that with new technologies and better treatment for our children, we too could reach this remarkable milestone. Continue reading

When ‘no’ is the hardest word

Image courtesy of photostock/FreeDigitalPhotos.net

Image courtesy of photostock/FreeDigitalPhotos.net

Ollie was discharged from hospital last Monday and this last week has been a blur of feeds, tidying the house, catching up with family and friends, school pick ups and drop offs and of course, trying to spend quality time with Aidan. To say I’m exhausted is an understatement and I cannot promise that this blog post will be grammatically correct or even coherent. However, the hardest thing about the last week has not been my lack of time or sleep, it’s been the challenges of dealing with Aidan’s growing discipline issues.

One of the things Anthony and I have always agreed upon was that no matter how sick Aidan was we would always ensure he was well behaved. Having met many sick and terminally ill children over the years we have come face to face with little terrors who have never heard the word no and we vowed we would never let our child behave like that. The reality however, has been a little different. Continue reading

Limping to the next milestone

Source: SXC

Source: SXC

In a few days it will be August, Aidan’s birthday month. As I mentioned when it was Mother’s Day, all major occasions are anxiety provoking, but none more so than Aidan’s birthday.

I remember for his second birthday I went all out, planning his party three months in advance, making sure every detail was absolutely perfect. Yet with each passing year my fortitude has waned. Each year is one step closer to the day I will lose my boy and I find myself willing him just to make it to the next milestone, like a mother cheering her son from the sidelines through the last metres of a marathon. Except now, my throat is hoarse from all the cheering and I can see that he is stumbling at the finish line. Continue reading

If I had the choice?

Photo by CarlyMarie of carlymarieprojectheal.com

Photo by CarlyMarie of carlymarieprojectheal.com

There’s a quote that did the rounds on Facebook recently for parents who have lost a child – it simply says “I would still choose you” and it got me thinking. Would I still choose Aidan if I had the opportunity?

At the risk of causing a major uproar and being bombarded with hate mail, I really don’t know if I would. It honestly depends on what day you ask me.

Aidan is the most amazing little boy and I love his strong and funny personality. In fact, like all parents, I wonder if I could ever love another child as much. He has certainly taught me more about life in his five years than in the 29 years prior to his birth, but if given the choice who wouldn’t take the easy option? I understand that there are people who love to push themselves and climb the world’s biggest mountains but, while I’m not afraid of hard work, if there was an option to take a helicopter to the summit, I’d probably take it. Looking after a sick child is physically, financially and above all, emotionally draining. Continue reading