The appointment
7th May 2012Sometimes in life, no matter how hard you search, you don't always get the answer you were looking for...
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The Undiagnosis
11th Jun 2011Yes it is devastating to hear the doctors tell you that your child has a syndrome, a disease, an illness, but, believe it or not, for some it comes as a relief after a long journey where not knowing has been far harder. A diagnosis, especially for parents who were unaware that there was a problem, can change a family's hopes, expectations and goals in an instant. With a simple word, parents...
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The Unsung Heroes
19th Jul 2011I am the proud mother of a disabled child. He is a dangerously cute, disarmingly intelligent eccentric who wouldn't be the amazing little boy that he is today without all the added extras that he was born with. I wouldn't change any part of him, because he never would have become the child he is without everything else, and he's perfect, in a beautifully human and imperfect wa...
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A Life with Tubes
24th Mar 2012Another great week of posts were submitted last week for the Define 'Normal' blog hop. Lots of great feedback on both facebook and twitter for the posts that were shared as well, thanks to everyone that took the time to submit a blog post and to those that shared the great ones that they read. This week I wanted to do something different, just to prove that really, anything goes with t...
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The Difference Between You and Me
8th Jul 2011When I first started blogging, which is all of 9 years ago now, I promised myself that I would record both the beautiful and the ugly side of parenting. I wanted to remember what it was really like, not what I would perhaps rather pretend it was like. Since Dominic came along, the definition of all aspects of my parenting journey has shifted in a way that I would never have imagined when I firs...
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Other People’s Children
14th Aug 2010I feel meeeeeeeeeugh. Is that an emotion that can be felt? Unsurprisingly I didn't get home today, Dominic was indeed too dehydrated and the nurses are currently hooking him up to ivs at the moment. I didn't argue with the doctor when he was looking through Dominic's charts shaking his head, just shrugged, said I'd like to go on Sunday instead then and left it like that (not, ho...
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Stop Wishing for Normal
1st Mar 2012We must overcome the notion that we must be regular... it robs you of the chance to be extraordinary and leads you to the mediocre. Uta Hagen I'm busy writing a blog post for the Great Ormond Street Hospital Charity. I say writing, but I guess I actually mean thinking about writing, as generally speaking it's during the quieter times of the day (when I've shut myself in the ...
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The Hardest Post to Share
7th Apr 2012Destiny is not the path that's given to us, but the path that we choose for ourselves. Megamind I've had two moments this week where the addition of a cartoon light bulb above my head would have been entirely appropriate. Certainly, the dustier parts of my brain were stunned enough to have any type of enlightenment that didn't stem from a Grey's Anatomy episo...
Read moreThis Blog is a personal account of what it is like to be the mother of a genuine, undiagnosed Medical Mystery whilst trying to give three children some semblance of an ordinary life, when we left ordinary behind a long time ago.
Having a special needs child like Dominic joining your family catapults you on the most extraordinary journey, starting with relearning everything you thought you knew about parenting. The lessons you are force fed can sometimes be terrifying, sometimes life changing, but always sprinkled with a true respect for the little pieces of joy that are found in the most unexpected of places. We are all better people for knowing and loving Dominic, and even though my stomach flips and I feel out of control, I'm clinging on to everyone as best I can as the roller coaster ride he's taking us on loops and swoops us through our lives. And for most of the time you'll find us smiling and laughing, just enjoying the ride.
Feel free to have a look around. You can read a bit more about Me and My Family or if you have something interesting to say, feel free to Contact Me. Perhaps you're more interested in the medical side of things as he is a very complex little guy who still doesn't have a unifying diagnosis, despite most of the doctors in Great Ormond Street hospital having a go at figuring it out at one point or another. I've tried to summarise what we know so far in the Medical History section.
Be sure to check out some of the weird and wonderful links I've stumbled across in both my search for answers as well as finding my feet in the special needs parenting community.
Or perhaps you just want the Story… If so, pull up a chair, grab some foil wrapped deliciousness and read on…
