Tuesday, 27 October 2015

It's time we had a little talk....

Dear Parents,
October is Down Syndrome Awareness month.

It is also:

 I'm also going to assume that you're aware about the people with Trisomy 21 who read, drive cars, have valid opinions, work regular jobs, get married, have children, graduate from university, generally carry on with life without any ado. Also, of course, I assume you're aware of the growing number of child and adult models and actors generally impressing people out there. 

I'm also assuming you to be aware of my opinion on the striped socks thing. 

What I am not going to assume, however, is that you are aware of the "oxygen mask" phenomenon.
This is the phenomenon well known to airline staff, the one where parents are so intent on getting their children's oxygen masks on that they don't get the oxygen they need, and everyone suffers, the child included. It's so important that they tell us every time we fly, and we listen and we say to ourselves, "of course, that makes perfect sense". And then we give birth to a child with health issues and do the exact opposite. 

When your child is born with health issues, you immediately consult your practitioner, and usually very specialised ones, to find out what needs to be done to prevent permanent damage to your child's health, such as brain damage, hearing loss or dying, for example. You don't think twice about it. Your needs are pushed aside. You're the big one, the fully grown one with functioning bone marrow and a fully formed heart and lungs. 

This is how it always goes, because we'd do it for any of our children in a time of crisis. The crisis is dealt with and you go back to a more relaxed pace (not that I'm insinuating that anyone's actually relaxing here) but it's just a bit back from frenetic racing around or intense standing still, constantly on your guard.

The last three years have been, in my house, a bit ridiculous. It started with the sudden turn in my husband's health when I was about 6 months pregnant with Jacinta (and being pregnant with two other children demanding your attention isn't fun and games to begin with), through her initial hospitalisation, through the 'let's keep the weight graph trending upwards' (breastfeed, express, tube feed, repeat, every three hours - with a 4-hour window at night) before her heart surgery, through the IAHP training and the attempts to get the household in the one place at the one time to get co-ordinated to start a program, through the constant vigilance while the bleeds and bruises and tiredness were showing her illness despite the Dr's reticence to put her through a blood test (ha ha, in hindsight), through the diagnosis and sudden admission and weeks on end in the hospital, the family separated more than ever before, having to sneak out for a couple of hours to be there for my middlest's first day of kinder, having to see my two older girls and husband off at the airport so they could represent us all at his brother's wedding in England, staying home for 9 months to avoid catching anything at a gathering or at the shops, through being told on the day we were released from our last leukaemia-related admission that she needed surgery before the end of the year, through the waiting and waiting, and getting pushed back and putting everything on the calendar in very light pencil because you just can't commit, through the winter admissions while she was struggling to breathe with a bit of croup, through the second heart surgery with its twists, turns and sleepless nights like never before. 

This all finished about 3 months ago, and I kind of feel like I'm still there, in all of it at once. 

The thing is, about a year ago I had a cold. Not that badly. I think I had one day which knocked me flat, but after that it was just a normal cold. That illness sapped my energy right out. It gave me dry eye also. I went to the Dr about the eyes and the tiredness a few months later and she wrote up the eye drops and said I was probably tired because I was still breastfeeding. I hadn't considered this, so I considered it. 

When you haven't got time to think, and keep forgetting to make your children's appointments, you have Buckley's chance (none) of getting any appointments booked for yourself. Having mental fog and tiredness doesn't help either. 

I got to a point of being sick of it and deciding to look for someone who could get to the bottom of it so I can sort it out. A friend recommended a Dr in New Zealand. I booked in for a phone call. There was a 2 month wait. I waited. We chatted and she suggested I see another Dr about an hour from me for bloods and then contact her again if I still wanted to see her. I booked in with that Dr. Another 2 month wait. I went along and she had some very interesting suggestions re my health issues and sent me for bloods. On my return a few weeks later I found that she was spot on, my zinc and B6 were super low, my iron wasn't brilliant, nor was my magnesium. I had also requested to be tested for a gene mutation called MTHFR and the bloods confirmed that I had it from both my parents, meaning that my ability to methylate folate (which bodies do) was impaired by 70% (and that's as badly as it can be). Bloods also showed that my adrenalin was basically nonexistent. (For this to show up on bloods means that your adrenal glands are in serious trouble.) 

I'm in the process now of supplementing to sort out these, which is tricky apparently, when you try to supplement zinc with poor adrenal function. There are good days and bad days....

Still, my situation is fairly ordinary. Another friend of mine was diagnosed recently with breast cancer - a really aggressive lump that blew up in size in the two weeks from seeing a Dr to getting it out. Thankfully it seems to be all out, but it's a scary situation. This is a Mum who's had a ridiculous amount to deal with, none of it medical, up late finishing documents for lawyers etc. 

There are several others I know of also who have had to rest their adrenals so they can begin to function again. These parents are just exhausted, maybe just from worry that they're not doing enough, maybe from staying up too late blogging or chatting with other parents on facebook, maybe from tension at home or trying to be the perfect mother to their other children, one who can do it all - because they always used to...

I know you are aware that your child is as unique, in all ways, as all children are. There is no one defining characteristic for all people with Trisomy 21, except that they have a trisomy on the 21st chromosome - and I don't know anyone carrying a copy of their genetic tests around to show people. 

I know you are aware that the possibilities for your child are endless, and the only definite thing limiting them is the same as for anyone else, the idea from their mind or someone around them that they are limited. 

Please also be aware that you have to apply your oxygen mask first. I'm not going to insult you by suggesting you need to go for a facial or some other 'me' time while your child sits there at home having not met his potential yet. I am suggesting though that you go and get a checkup. I am suggesting that you take care of your diet and draw a line in the sand at 11 - or even 10pm and go to bed. I am suggesting that you confront any issues you may be having with your partner, your friends, your life in general, and sort them out sooner rather than later. I am suggesting that you (perhaps bit by bit) regain control of your life and be the one in the driver's seat in whatever increasingly bigger way you can. 

If you've dropped the ball on your own basic wellbeing, now is the time to do something to sort it out. Not tomorrow, now. I give you permission. Don't be the guy who misses the signs and winds up so unwell your child can't have you around to take care of them. Be the healthy one, who goes on and on because they have a check now and then and make healthy life choices. 

Now, I'm off to look up Dysautonomia....


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