Tuesday, 7 July 2015

Sleep: the forgotten state

Here I am again. 5am & severely sleep deprived. Not even quite sure how I'm typing this. Thank you technology for autocorrect.

If you've ever had a sleepless night, surely yes, we all have, you know the struggle that is the next day. Now multiply that by 14 and you're where I'm at. The constant twitch in my left eyelid is ever so slowly pecking away at my sanity.

This morning we've been attempting to get Turtle back to sleep since 230am. Apart from the 1 night where her grandparents rescued us (or was it 2, its all a blur), this spout has been non stop for almost 2 weeks. Nothing works, its just a matter of riding it out until she exhausts herself, meanwhile I lie here in a semiconscious state the whole time.
It's pretty obvious to me I'm not coping well with this; and really, who would?! I can actually feel myself getting stupider with each sleepless night that passes. It impacts my ability to make good decisions, to think clearly and to ultimately coordinate a standard day at work.

Ah, hello my morning alarm; time to get up & guess what... Turtle is now fast asleep.

I'm going to smile and wave at myself in the mirror.

To be continued...

Sunday, 17 May 2015

Global Development Delay: Dad's view

For me, having a daughter diagnosed with Global Development Delay has always been difficult to explain to people.  I mean, even Wikipedia only has a half-arsed explanation.  If you want a better understanding, check out this basic fact sheet before you read on.  FYI, Cailin is delayed in all 5 points listed, but I'll explain that in more detail later on. In short, the absolute truth is that she is in a space where if you watch her briefly or glance at a photo, most of the time Cailin displays all the normal characteristics of a 2.5 year old.  It's only when you spend some quality time with her & actually attempt to interact that most people will fast learn she is not okay. Again, more on that later.

I recently had a realisation that I am quick to avoid the topic of my daughter's progress.  I've never thought it be intentional but in truth it is. I certainly do find it harder each day to bring myself to work through the answer to the question "How is Cailin/your daughter going?".  The majority of the time I will respond with a simple "She's going good" and then lead into something along the lines of how she is the most amazing little person & how I love her like crazy. All of which are of course true, it's just that the "going good" is a mask, a brave face, for the fact that she is well behind to where she should be, but we are working hard every day to move forward with small wins every so often.  I'm now at a point where going through the true story with people is difficult because, unfortunately, most responses consist of telling me that she'll be right or she'll catch up or the almighty "It could be worse!", as though it's nothing to worry about, you know, business as usual.  The alternative to these responses being the experts who have not even attempted to understand Cailin's condition and prematurely stamp directives & advice as though it can be a quick fix to all of her problems.  This sounds harsh, I know. I understand that everyone has good intentions, and some just don't know what to say.  I get it.  It just doesn't make it any easier & is not something I want to be a part of a "small talk" conversation.  Hence, I choose to pass it off as "she is good".

Fast forward to yesterday.  Something inside me broke.  After a half hour swimming lesson with others around her age we headed back to the car.  I was down & out, mentally exhausted.  We put Cailin in her seat, buckled ourselves in & one simple "Are you okay?" question from Jade triggered it all and I became a blubbering mess.  To get straight to the point, in this case, it was not the comparisons to other children her age that hurt, it was the lack of understanding, the judgmental eyes and the avoidance of conversation, all from the other parents in the session.  I have felt this since we started the lessons earlier this year but today was different, after having a few weeks off it felt as though we were not welcome, like we were in the way & setting a bad example for the other children.  Three quarters of the way through we withdrew from the session and went to play on the other side of the pool where Cailin could be free & happy.

There is no quick fix to feeling this way either.  As a parent to a 2.5 year old child diagnosed with GDD there are still so many unanswered questions.  We are doing everything possible to give our daughter the best life, to find out what is driving these delays & help her reach her full potential.  It is a tough & exhausting road and it is everything about who she is and what she can do that keeps us on the path.