Author: Vickywoo

Stuff and things

~ Vickywoo ~ 2 Comments

My husband and I say “stuff and things” as a reply that basically means “I can’t think of anything to say right now” or something like that. It’s difficult to explain our weird ways to others.

Anyway, I’ve decided to take “stuff and things” as a label for posts about our day to day life. Rather than all the comment on various DS/baby issues… Just a little catch up on what we’ve been up to (if anything!). So here goes, the first chapter of stuff and things…

This week I gave Audrey a cold sore 😦 it was always going to happen, I get at least 2 a year and Audrey and I kiss a lot).They don’t seem to be bothering her, but they are bothering me – mine has cleared up, she has one either side of her mouth in full swing, so we can’t kiss! Booo.

In happier news we went to Woodfest in our local park on Saturday. I held a tiny owl and Audrey watched. Then we headed to the Brighton Food Festival on Hove Lawns and Audrey went on her first fairground ride with Daddy!

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Audrey wasn’t that fussed about the ride, but she liked seeing me on the sidelines.

Sunday we went to a DS picnic back at St Ann’s Well Gardens. I didn’t take any pictures, doh! But we met up with other local DS families and Audrey managed to nap even though a little 3 year old monkey called Thomas came over to investigate and squeezed her foot. She also slept through Elliot passing by whilst roaring like a dinosaur… Ahh the toddlers are quite an eye opener!

Fun to see other little uns with DS doing well and having fun with their siblings. There was even a guy and his wife who popped by – their niece was born last week and unexpectedly had DS. How amazing that he took the time to look into the local DS community, his sister having only given birth last week! What a fab uncle.

Last night Audrey had her sleep study to hopefully sign her off from the care of the hospital (and confirm she doesn’t need to go back on oxygen at night), no idea how it went as she is in her own room these days. The probe was off her foot in the morning though, wriggly little lady! Fingers crossed….

Too much information?

~ Vickywoo ~ 2 Comments

Instagram has become an obsession… What was once a place for my food photos has now become an Audrey micro-blog and a place where I am part of a DS community. It’s an amazing place for inspiration… Little ones walking, talking, starting school… positive images of families going about their life with an extra chromosome in the mix.

But there are downsides to following these other mummies/families… Operations, sleep studies, hospital visits, illness, delays in development, disappointment… We are all sharing our lives and this includes the downs as well as the ups… But the thing is, we are all very different. Kids with DS may share characteristics, but they are all still individuals and have varying needs.

For the most part I have avoided medical information on Down’s Syndrome. I pick up snippets of info from other people, but on the whole it’s not fun to be worrying about Audrey going back on oxygen, having an op to remove her adenoids or losing her hearing. Unfortunately, following these other T21 families has exposed me to some of the possible issues Audrey might face and have also led me down that unhealthy unhappy path… Comparison.

I’ve seen on more than one occasion this quote posted on IG:

“Comparison is the thief of joy”

And indeed it is.

It’s fine seeing Audrey’s ‘typical baby’ friends walking, talking, growing… But what about a baby with DS very close to Audrey’s age doing things Audrey can’t do? It’s tougher to be relaxed, I guess because we all have high hopes for our kids, even if from the outset they have something about them that prepares us for delays. Our expectations for Audrey are that she will be the best that she can be (and believe me, I don’t mean we’ll be pushing her and forcing her), we just expect her to be the best downsie ever! So when you’re following the progress of another little one and they are signing/crawling/holding their bottle and your child isn’t… It’s hard not to feel… Deflated.

The best advice I can give to anyone else in this situation is to focus on the positive and, as Wayne would say; “Live in the now!”.

Audrey is currently getting on just fine, with no major health issues. She sits up all day, she waves, claps, rocks to music, feeds herself finger food, attempts to hold her water cup, nods when we nod, plays peekaboo, babbles all sorts, hey, when I start to list things she can do a lot! Phew!

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Daddy and Audrey x

The Richard Dawkins malarkey

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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…

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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.

What say you?

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I’ve read a few posts about the best way to react/what to say when a friend or member of your family has a baby with DS and a year down the line I feel I can add my 2 cents.

As with anything in this world we’ve found ourselves in, I often wonder what I would have been like on the other side of the fence… If a close friend rang me to say they had just had a baby and – shock – the baby had DS… Would I have said the right thing?

A couple of weeks ago we were at my brother’s 40th birthday party. Many of his friends had last seen me when I was pregnant, or even before that, none had met Audrey yet, a few had seen her via Facebook pictures and videos. Now, the drink was flowing and it must be tricky chatting to someone who’s had a child with DS – do you make reference to it or not? But two of my brother’s friends (both male) had similar conversations with myself and Ted that we discussed the following day. To be honest, we just laughed/shrugged it off, but we acknowledged it’s a shame people have this response… The general gist (and they were in no way trying to be offensive, both the complete opposite) of their chat was; how well we were “coping”, how it must have been “devastating” and what “a blow” it must have been… Even typing this I’m thinking, “oh it’s not such a bad response”, and as I’ve said, they weren’t trying to be negative, but the truth is the best responses have been those who either don’t mention it and just ask how she is, how parenthood is treating us etc. or those who ask questions about DS in a genuine ‘what does it mean’ kind of way.

Yes, at the time we probably were devastated, but that seems like such a wrong reaction now. With the knowledge we have now, I’d never describe it as devastating. I’d say we were shocked, but hey, she’s perfection now, so we’re over it. I also wanted to laugh a bit about “coping” because at the moment we are just coping with having a baby… Same as any other parent, no one would mention how a parent of a typical baby was coping so well with handling their little one.

Our friends have actually all been fantastic, we really can’t complain. Audrey has a massive fan club, a ton of love and 99% of the time people say the right thing.

But back to responding when you hear the news that someone you know has had a baby with DS:

1. Congratulate them. Please. This is by far the best response.
2. Ask the normal questions about time of birth, weight, whether the little monkey is sleeping well etc.
3. Do express concern over any health issues etc, but don’t make assumptions about what the DS means (oh you’re breastfeeding? I heard they can’t breastfeed? Does baby cry? I don’t think they really cry much do they?).
4. As time goes on, be mindful that milestones might be delayed (we are constantly asked if she is walking yet and we haven’t got to crawling yet). Perhaps just asking how the baby is doing in general is an easier question for parents to respond to. I’m very proud of Audrey’s rolling, babbling, waving, clapping, kisses… Oh I could bore a lot of people with things she’s achieved, but it’s not my favourite thing to explain we don’t know when she’ll be walking.

Just try to remember, a baby coming into the world… That’s an amazing thing that needs to be celebrated. I wish we’d have celebrated more in those first difficult days… We are certainly making up for it now!

Happy birthday Audrey!

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Just a quick post to mark Audrey’s first birthday!

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Here she is this morning. Ted and I had the day off whilst she got spoilt at nursery. We went to a photography exhibition and stuffed our faces at Five Guys (in the sunshine in London!).

Sunday was Audrey’s party in the park with friends and family…here she is with Mummy and Daddy…

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Amazing to be one year in. I still wish we knew then what we know now, but I also get what Ted subscribes to… That you have to live through the tough times to appreciate the good. But I do feel like I was robbed of joy. Somehow we need to teach people that DS isn’t something to be screened out of society. Why are we trying to cull them? The screening message just makes you feel like it’s a very bad thing that must be avoided… But I don’t want to dwell on the negative here. Today was Audrey’s 1st birthday and she was surrounded by love and happiness.

She is the best.

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Pride and Joy

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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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Waving

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In the last week or so Audrey’s waving has reached epic proportions! Who knew that this kind of interaction would be so amazing? We are constantly waving at her like nutters and cheering when she waves back!

It’s the best 😊. I can’t seem to add a video of her performing, so here she is just looking lovely for a birthday message for my best friend…

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Life

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Just reading an article about abortions of DS babies not being properly recorded in the UK… But what upset me most was this;

“Under the Abortion Act, termination of a baby with Down’s Syndrome is legal right up to the point of delivery.”

UP UNTIL THE POINT OF DELIVERY.

I’m reeling from this discovery. I’m pro-choice and all that but… With abortions you imagine a traumatised youngster making a difficult decision at under 20 weeks… Not a heavily pregnant woman backing out last minute. In fact, the abortions this late in the pregnancy are available to woman who discover the baby has a “disability”, this is a loose term that incorporates cleft palates! Shocked to say the least.

The thing is, with Audrey not being diagnosed until she was born, I can’t really say for sure what our thoughts would have been had we known earlier… I know I would have discussed abortion as an option, simply because I would have been so scared… I also know that Ted would have been amazing and talked me around… But one thing I feel strongly about now is educating pregnant women and their partners – helping take the fear away. DS is not the end of the world. I feel like I’m repeating myself (and I probably am), but I want potential DS parents to know that they will love their little one no matter what. How can we get that message across?

I guess one way would be making DS part of “normal” society. We need everyone to brace “inclusion”. With the help of people like Hayley in the world, we are on our way;

http://www.telegraph.co.uk/health/children_shealth/10922996/There-are-no-limits-to-what-Natty-can-achieve.html

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Changing sides

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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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