For those interested, here are a few videos and articles I have come across lately (so if you're looking for pics only, skip this blog update!)
The first is a lovely positive one about a UK get together of the T9M families. There are now four T9Ms in NZ - an approx 3.5year old, an approx 2.5year old, Nate at 17m, and an approx 4m old baby. Three girls, and one boy. One day soon we hope to have our own gathering, hopefully later this year when summer rolls around with its warmer weather. Amazing to think there are 4 in NZ alone, given the odds of having a T9M (based on current known numbers worldwide), are actually one in a hundred million....
The next two are quite interesting articles about latest research into detecting trisomies. Gradually doctors are learning more and more - although frankly it really can be like a needle in a haystack - as you can see from these......
Latest research into advancing trisomy detection
Amazing story of a family fighting a one of a kind disease
Some may find the rest of these a little harder to read - they can be quite confronting (well they are for us), about the path ahead and the realities of life with genetic conditions. I see this everyday in the various Facebook groups I belong to, and while it's really comforting to have those support groups, it is also challenging to see and think of the possible path ahead, both medically and developmentally.
One of our biggest fears is what happens for Nate when he is older (given that we ourselves are older) - who cares for him, and how on earth do we fund that when we aren't here. Esp when there is some evidence of a Trisomy 9 person at age 65years (see below) - on the one hand, that is just so pleasing and hopeful, and on the other, also somewhat worrying! There are many parents with special needs kiddos sharing that exact same concern for the future - in fact beyond the biggest fear, which is of course around their health, the medical unknown, and the risk to life - it's the next major concern for parents, and it can all be pretty tough stuff to deal with.
One UK 14year olds story with a rare chromo disorder
One wee boys very rare genetic disorder
Evidence of a 65year old Trisomy 9
It can be really hard not to fret about the future, and to live in the moment and enjoy our wee man, but we try really hard to. That is something that being part of the Super Power Baby Project has really taught us - and the recent, and hugely sad, loss of one of the SPBabies has only emphasised the importance of that even more. So who knows exactly what our journey will be, but we hope daily for miracles, and at this point we seem to be remarkably blessed with what we've had to deal with.
More recently I have read some articles that I think sum up very well how we can feel at times, as we balance the highs and lows of this journey, but also show that time does help things.....sure it never goes away, but the pain and the grief does ease.
Dear Newly Inducted Special Needs Parent
Special Needs Parenting, what dies and what is born
There are of course lots of articles giving support and advice for families too, albeit more so globally than locally. It's stuff that we may well need in time, but at this point we're just picking what works for us, and mucking on through it kiwi style! I'm including the links now as who knows, might help someone :-)
Advice on dealing with a rare chromo disorder
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