Motherhood

The Richard Dawkins malarkey

~ Vickywoo ~ Leave a comment

This week there was quite a fuss around some Richard Dawkins tweets. As part of the DS community I certainly took an interest and spent far too long torturing myself with what was said and how people responded.

To save me explaining, here’s a link for more info:

http://www.independent.co.uk/news/people/richard-dawkins-on-babies-with-down-syndrome-abort-it-and-try-again-it-would-be-immoral-to-bring-it-into-the-world-9681549.html

I saw some of the DS tweeters fighting back and the trolls who replied in offensive and upsetting ways, so I certainly had no inclination to reply to him. However I thought it worthy of a blog post.

To all those who explained why they would abort a foetus with DS, I understand your thinking… The old me (pre-Audrey) would have also thought that having a special needs child would mean;

That I couldn’t work.
That the child would have no quality of life.
That we would have a very depressing existence, filled with hospital visits and therapy.
That our friends and family would find it difficult to love the child.
That the child would be difficult to love.

All of the above seems laughable now we have Audrey in our lives.

I work 3 days a week.
Audrey has a perfectly happy life, she’s 13 months, but is a bit more like a 7 month old.
We have had hospital visits and some physiotherapy. None of this (so far, touch wood) has been as bad as I had imagined.
And the love… She is so easy to love and everybody loves her. Our friends and family have been amazing.

I do appreciate that from the screening, you won’t be able to tell if the child will be healthy or “high functioning”, however it’s clear that things have really moved on and children with DS have better lives than ever. Better life expectancy and opportunities overall.

Hayley from Down’s Side Up wrote a wonderful piece that really says it all so beautifully:

http://m.huffpost.com/uk/entry/5697336

And, as always, Audrey’s face says it all so beautifully for me…

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Future DS Mama…

~ Vickywoo ~ Leave a comment

I was sent an email (along with a handful of other DS mummies) this week… A woman in our area is 16 weeks pregnant and has had a blood test that has revealed a 99% chance of Down’s Syndrome… She has reached out for advice and I was more than happy to speak to her. We squeezed in a ten minute or so telephone chat whilst I wandered on my lunch break and she found a quiet spot in her office. And of course I came away thinking of all the things I should have said…

Unfortunately I couldn’t offer her the perspective of someone who had a prenatal diagnosis of Down’s Syndrome. I simply do not know what it’s like to be told that the life in your tummy is 99% likely to have DS and for that mysterious “bad news” to be hanging over you throughout pregnancy.

Ted and I have always said we were glad we didn’t know. I imagine the pregnancy would have been ruined by the dark cloud hanging over us. But then, is there something to be said about preparation? Would I have felt more joy/relief/love when Audrey was first born, had the DS been expected rather than a shock?

I spoke to the lady in question, starting by letting her ask questions, she kicked off with; “Well my mother said I wouldn’t be able to work if I have this baby, I’ll be at home caring for him/her, but obviously you’re at work? – Does nursery cost more?”

Yes I’m back at work three days, Audrey is at nursery twice and spends one day with Grandma (or Bibi as we have chosen). I said that possibly nurseries find a child with special needs a positive thing – they get funding and guidance on sensory toys etc. but at the moment, her needs aren’t very different, so it’s not a big deal for her to be at nursery.

We talked about health issues (Audrey being on oxygen for 6 months), the fact that once we got over the shock, we just had a baby to deal with… And she told me they have the heart scan for the baby this week so I said that could be helpful in putting their mind at rest. If baby escapes a heart issue, that’s a good sign… She did say they went for the amniocentesis but she couldn’t go through with it – she got upset seeing the baby on the screen. So I guess she’s not keen on termination. However the discussion revealed her partner was perhaps leaning that way.

She was going to meeting with another DS mama that evening and I think there were at least 4 of us on the email. But I still felt I had to get her more help, so I emailed some contacts and sent on the email address of someone who did know they were carrying a baby with DS. I’ve passed on the contact and stepped back.

I desperately want to email her a ton of blogs and websites, as well as say; “No matter what, I guarantee you will love your baby” and basically flood her with positivity in the hope she will keep this baby, but of course that’s not the right way to go about this. She needs space and not some crazy person begging her to keep a child with special needs!

I guess I’ll know which way things go when she either turns up at a DS group… Or we never hear from her again.

Pride and Joy

~ Vickywoo ~ Leave a comment

I’ve been saying (and thinking) “I’m so proud of you Audrey!” a lot lately and today it reminded me of something… Another shameful admission from Audrey’s early days when I was perhaps not quite as far a long as I thought.

I took her into Ted’s work (I think for the first time, so she was probably about 1 or 2 months old) and his work colleague said; “she’s lovely, you must be so proud?” and I smiled and nodded… But inside I actually thought “Proud? Really?”. I remember thinking it was a strange choice of words. I was still in a zone where part of me felt I’d created a “broken” baby.

Unfortunately I was a little… now ashamed feels like too strong a word… but I was certainly not proud of my baby in those early days. Part of this was the tube on her face. I felt like if failed as a mother, to have made a sickly baby, one that had medical complications. Of course it probably didn’t help that my mother admitted that before Audrey she assumed that babies with tubes on their faces probably had a mother who smoked during pregnancy!

In those early months I didn’t let my feelings out. I certainly never hid Audrey away, but inside I knew I wasn’t proud to show her off. I was just sort of muddling through because I knew she needed me. At some point of course this changed dramatically. I gradually came to realise that Audrey wasn’t “broken” and her DS wasn’t my “fault”. Life is just complicated. Things don’t always go to plan, but the change in plan isn’t necessarily bad. In fact it’s an amazing feeling when something you felt so negative about suddenly becomes this positive in your life. I do actually smile to myself about all those worries I had, especially when she’s giggling at me or clapping with joy. She’s a light in our lives and I can’t believe I doubted she would be anything but.

So anyway, I saw a group of pregnant women meeting for lunch on Monday. I made a (bad) joke to my brother (who was with me) that I wouldn’t get Audrey out of her buggy as I didn’t want to scare them. In reality I wanted to visit their table with Audrey and tell them that if any of them had a baby with DS they had nothing to fear – the baby would be wonderful and beautiful, but mostly importantly, still yours and you will love them. But I’m not that dramatic. We had our lunch and Audrey was out of the buggy on our laps, the mums-to-be didn’t seem to register we were there (I’m pretty sure I barely acknowledged babies when I was pregnant, except to check out their prams!), but of course I still wondered… Did they notice her and her DS? People are always acknowledging Audrey and how cute she is, yet these women didn’t so much as smile or nod… But I am probably reading way too much into nothing. Still, I wish I was dramatic enough to tell them just how great Audrey is!

Oh, here’s the monkey at physio last week…

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Changing sides

~ Vickywoo ~ Leave a comment

Since Audrey turned 10 months I have started to find the prospect of another baby less terrifying… Still terrifying, but just not as scary a thought as it was a few months back. So as my mind turned to thoughts of baby number 2, I couldn’t help but wonder… What about the screening for DS? Ted and I discussed and decided there would be no point having the tests second time around, as it will make no difference. However, I then started to wonder about the screening… Why do we screen for Down’s Syndrome?

Is it about the serious health issues associated with DS (heart, bowel etc)? Is it about being prepared for a “different” child? I even considered the possibility that the NHS might want to guide someone down the abortion route in order to save money (would a DS baby need a lot of additional care/medication/operations?).

The fact is I’m only wondering about this now because I have a beautiful baby with DS, who escaped the heart and bowel problems and is doing well and is a joy. Rewind to this time last year and I would have thought it perfectly reasonable to screen for DS… After all, I was someone who had made the declaration that I “couldn’t cope” with a child with DS! This blog post by Hayley of Down’s Side Up explores this area… http://www.downssideup.com/2014/06/the-sugar-coated-disability-abortion-lie.html?m=1

What struck me here (other than the horrible quotes where women were treated badly after deciding to keep their DS diagnosed foetus), was explaining to our children in the future why we screen for DS… Something I thought was perfectly acceptable (to screen for), has now become… Shocking. I guess this is because we (DS parents) could never explain to expectant parents that they will love that child no matter what… It will be ok, you will cope! The coping and the loving will only really kick in when that baby is in your life.

Not sure what the answer is here, the screening is there and a foetus testing positive for DS has a slim chance of survival… All we in the DS community can do is try to spread the message that there is happiness and joy in our family life and take away some of the “fear” if we can. I definitely found huge comfort and positivity in looking at blogs such as Down Side Up and Kelle Hampton’s Enjoying the Small Things when I was coming to terms with Audrey having DS. I was literally thinking “wow, they still eat out/dress well/have fun” – because at the beginning I felt like DS = end of the world. We need to show that it’s not the end, it’s the beginning… The beginning of a different world, but still a very fun/fashionable/foodie one!

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Life changes

~ Vickywoo ~ Leave a comment

Audrey is 10 months old and as the cliche goes… They really do grown up so fast.

She’ll be at nursery 2 days a week and with Grandma 1 day, whilst I try to remember how to “work”. How on earth will I get on back in the “real” world?!

Anyway, everyone keeps saying how it’ll be good for me, that I’ll get a bit of “me” back and good for Audrey as she will get a more balanced week too (not so mummy heavy!). I am sure this is true, we will both benefit, but what I will say is, nothing will ever get me back to “me” as I’m just not that person anymore. I really don’t want this to sound negative, but I guess another part of having a baby that I wasn’t prepared for, is how much it changes you as a person. I was reading an interview with Drew Barrymore this morning and she said;

“Being a mum is incredible, but it’s hard work, all day long. It does feel like 99 per cent of your time is for the baby and one per cent is for you. And that one per cent still comes with an avalanche of guilt. You’re like, “Oh God, it’s ten o’clock at night and I’m watching bad television. Yes, she’s asleep, but is this OK?” It’s like you’re doing something you’re not supposed to be doing”.

I do believe some women can probably make the split different, but I’m definitely there with Drew and my measly 1%!

Back at work I can be safe in the knowledge she is looked after well, but I do feel odd that a 20 year old stranger (who works at the nursery) is her “key person” and is in charge of her all day, 2 days a week. It’s going ok though.

I guess I’m just looking forward to a time when each bottle/nap time/food needs to be on time and go well – I need to chill out basically and time apart should help!

On that note… Off I go to a hen weekend with Audrey spending two nights with Grandma. Our first nights apart since she was in the baby unit (and that doesn’t count!!). Yikes.

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Fear and Self-Loathing in Motherhood

~ Vickywoo ~ 2 Comments

Last week I was suddenly ill. It was a time to be very thankful my husband now works only 5 minutes away, as I started being sick very suddenly at around 5pm and it didn’t let up until around 1 or 2am in the morning.

I could not have looked after Audrey alone that evening, the sickness was unbeatable, plus I kept falling asleep for 10 minutes or so between the vomiting. Yep, it was pretty brutal (just ask the bathroom door who bore the brunt when I didn’t reach the toilet on time!). So the next day Ted had to work from home whilst I slept a lot and then in the afternoon he took Audrey into work with him.

This was a difficult day for me, but not really because I was so weak/exhausted/nauseous, more so because I had to completely relinquish control over Audrey. I didn’t touch her for 48 hours after I was sick. So Ted was in charge of food, milk, naps, nappy changes, play time, outfits… The lot. I’ve been her dictator for so long, it was bizarre taking this step back. Definitely something I couldn’t have done so easily were it not for the fact that I was utterly exhausted and concerned about passing the illness on. If I’d have been well, I would have meddled. Ok, so I still meddled from afar, but I would have meddled more!

So the routine shifted and her outfits didn’t match. But life carried on and she still slept through (needed waking at 7am in fact). And Ted also managed to get her to self settle for her morning nap 3 times (I’ve been rocking her to sleep). So lessons were learnt thanks to Daddy!

But the whole experience left me feeling… Depressed. Guilty. Utterly useless. For some reason, since becoming a mum, I seem to have excelled at beating myself up about stuff. I just cannot get enough of questioning whether I’m a good enough mother, whether I’m doing things right and in questioning those things, I find myself crying and apologising for having such doubts. It all gets quite messy.

Ted is more level-headed (don’t forget, he’s a rock) and always manages to make me feel better, but nevertheless the self-loathing continues… Having not fed her for two days I started to feel like I couldn’t face being in charge again. The thought of our days… Bottle, nap, lunch, nap, bottle, dinner, bedtime routine, rinse, repeat… Filled me with dread. The monotony! This then spirals into guilt… How could I feel like this about my child? My responsibilities to her? And so the bad mother feeling resurfaces.

I was so focussed on all this and the dread of pulling myself together, I forgot something key… Audrey. I forgot that once I got to hold her again and make her smile, all the “monotony” would fade into the background. And so here we are, back to our routine… Accept now she’s napping and I didn’t have to rock her to sleep!

Thank goodness for my wonderful husband and daughter…

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