It's only been just over eight weeks since Nate was diagnosed, and this still feels surreal.
Lately I've been thinking that in wanting to share and diarise Nate's journey, and provide a more positive account for one baby than what seems to exists on the internet currently, I'm probably not being completely truthful. Too many people have told me how strong I am, and how well I am coping. But I DEFINITELY have more than my share of non-coping times!
I think maybe I'm writing this blog with a bit of a filter. Maybe so that I can try to stay focused on the positives, maybe because I don't want everyone to know just how incredibly hard all this is, and maybe because I don't want people to think or judge as to how we're coping, or worse yet, to pity Nate or us as a family.
But I think that if I really want this to do justice to this journey, then it's probably time for a dose of the honest truth. So here goes....
I have days where I think I'm handling everything really well (considering). And then completely out of the blue, I'll be struck again by the sheer enormity of the situation, and the absolute devastation of the diagnosis and 'all' that comes with that. And by 'all', I mean......
- more hospital, more doctor, more home nurses, more on-site therapy, and more off-site therapy visits than you could ever possibly imagine. In fact, at last count we had over 17 different health professionals of different disciplines involved, albeit at different frequencies. And that number may well grow as other things are investigated.
- the daily/weekly challenge of how many more times we need to practise/repeat the various therapy sessions at home (especially - but not at all limited to - the next five years, which are the critical early intervention years), as we try to help Nate reach the best of his potential.
- and that's just the logistics and the time commitment considerations, then there are the financial demands that go along with it. Nate's $45 fortnightly disability allowance needs to sssstttttttrrrrrreeeeettttttttcccccchhhhhhhh a very very long way. (Tui billboard -"5-star Care? Yeah Right").
- the medical jargon that you need to get your head around, and fast. It isn't simple. And that would be why med school is a 7 year+ commitment :-). But you have to. It's your child that they are talking about, and it's their life that they are impacting. You have to get on the front foot and be your child's advocate. When something isn't working, you have to be able to understand and push for alternatives.
- the impact on your daily life, and your family life. To manage the above, the daily life suffers. It has to. It's the only way to make everything else fit. All your priorities in the world change.
- and last but no means least, 'the system'. Getting your head around the different ministries (Social Development, Education, Health), and when things shift, the different supports you can apply for or not (carer support, disability allowance, respite care, Taikura Trusts), how and what funding is provided for the Child Development Team and disability aids (or not), obtaining the free prescription scripts after the first 20 per year, navigating the wait-lists, applying for early intervention teacher aid, and generally completing SO much paperwork, repetitively, and what will be annually from here on out. Don't get me wrong, you can find some amazing social workers and people who can help you navigate all this (I found one, and she is awesome), but it's hugely taxing stuff. The world just isn't made for a child with special needs.
'Daunting' would be the filtered word. 'Bloody stressful' would be the polite version. Anxiety-causing, emotionally devastating, and pressurised would be another.
So many lovely people have reached out to offer support via email or text (thank you, that is just SO awesome), and sometimes I'm just completely overwhelmed with emotion reading it. It's humbling to know so many people care, or want to help out. At times, I feel like I'm balancing on a very fine wire emotionally - one moment coping fine and strong, the other in despair. There are days where you have waves of emotion - overwhelmed, sadness, grief. Those times aren't every day, or even all day, but they are definitely there.
I know that none of that is unusual. Recently I talked with another kiwi Mum who has a child with a disability, and she told me to google 'chronic sorrow', because in her view that's what you go through. She said she felt like she went through that for well over a year. She says she is in a much better place now (her child is 4). Yes good that's hopeful (a little bit of sarcasm sneaking in). Only 28 more weeks to go to get to the year mark. Wait, do you count from birth or from diagnosis? So okay, maybe 43 more weeks to go then?!
Another new friend in the States (one definite positive here - I seem to have made loads of new friends around the world, all Mums of T9M kids, or other very unique chromosome conditions) has been blogging about her experiences too (see Faith.Family.Felicity.blogspot.com if you're interested). Stephanie has a gorgeous wee girl called Felicity (one day older than Nate, and who was diagnosed T9M just one week earlier than Nate), and recently wrote about the emotional extremes she is having as she works through the cycles of grief. That's pretty much me too. Only I don't think I'm moving through them in so much a sequenced manner - shock, denial, anger, depression, bargaining, acceptance - I seem to be able to swing from one to another quite merrily (a touch more sarcasm).
It surprises me that I have been in tears more times in the last eight weeks than I can count, and at times in front of people I barely know. On that note, sorry to the lovely palliative care social worker who I had literally just met and who was simply just listening to our story, only to be greeted with tears for her troubles :-). Oh and lovely Nanny Sylvie. And the CDT social worker. And Nicole, a lovely lady with a special needs child, who I met on the internet and who came all the way into town to visit a complete stranger and offer support and advice. And I'm not even counting friends and family. It's actually quite amazing how waves of emotion can come up and bite you, just when you think you've actually got it rationally together.
The other thing Stephanie writes about is the resentment and jealousy that you feel - which is then quickly followed by guilt - when you see see or hear of how 'typical' kids are faring. That's the weirdest thing to experience - on the one hand you're so happy to see a child being held in its mothers arms while holding its own head, shoulders and back straight - while on the other hand, you feel absolute sadness as to why your child can't. The unfairness of the situation just seems SO unfair, that it isn't even possible to put more words around it. I often try to rationalise it back to his prem-ness, which of course is a factor, but sadly not THE factor.
Like Stephanie, I find myself reading facebook posts from the other T9Ms (yes another plus, I finally got to a stage where I could be bothered with Facebook :-)), and feeling happy and pleased for them when good times or news comes their way. In T9M world, good news includes things like a child finally being able to sit up on its own (which would be delayed from a typical child), maybe one day being able to say 'Mum' or some other word, being discharged from hospital after a successful surgery/sleep study/swallow study, perhaps being approved for extra teachers aid support in a system that doesn't always seem to want to support, receiving a new wheelchair, standing frame or support vest/suit, or maybe even taking their first steps. But as I read those, I am struck again by the fact that this too is likely to be Nate's life. No it won't be exactly the same, as no T9M child is. But it won't be a typical life either. There are times where that seems manageable, and times where it doesn't. No other way of putting it.
So that's it. The dose of honest truth as to how I feel some 9 weeks into this diagnosis, and as Nate approaches 25 weeks.
Enough of the wallow :-).
There really is only one way to end this particular post, and that is to say again just how much we love our little man. He is EVERYTHING. He is THE most precious little man in the world. I am so incredibly thankful that we had that fateful scan when we did, as I know we couldn't imagine life without him (even with all its challenges), and I'm really really glad that we don't have to.
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