Motherhood

Keeping it real…

~ Vickywoo ~ Leave a comment

Ok, so amongst the Instagram pics of Audrey grinning up from our everyone-seems-to-have Ikea rug, what else is going on…?

Let me tell you – puke. Poop. Snot. Eye goo. Worry. Tears. Exhaustion. 

Audrey has been ill this week and I’m currently in the thick of it (well no, that was probably more 2am when she woke about 40 mins after I’d just given her cuddles and Calpol and it took me an hour to rock her to sleep…), but right now I am filled with cold, breathing through my mouth, with Audrey slumped on me asleep, covered in crusty snot, with laboured breathing and a dry pouty little mouth.  I am tired and worried and I would like nothing more than to have a good cry. But instead, I’ll keep cuddling and I’ll keep shushing and saying “Mummy’s here, it’s ok”.

You might have thought the low point of the week was Audrey projectile-vomiting porridge and blueberries all over us both and that trusty rug, but no, today is definitely lower… Because today Audrey has slept all day. At the tiny points where she’s been awake (nappy change, sip of water, doctor prodding), she’s been lethargic and whiny and her eyes are like slits. I feel so utterly helpless and just want to rewind to yesterday when she perked up and wouldn’t stop waving to the receptive young couple behind me in the cafe. This is horrible. Seriously, how do mothers do this? It’s so horrible having an ill child. I adore the extra cuddles and I love the accessibility of her tasty forehead… But I’d do anything to see my bright little monkey again. The claps, the high fives, the constant request for food (signing “more”), come back little Audrey boo, I miss you!

I also (stupidly), feel like I jinxed things. I kept telling people how losing my job wasn’t so bad – being at home with Audrey is fun. And then this happens and I feel like I’m dealing with a newborn again – not knowing what to do for the best, second guessing her needs and hoping a cuddle solves all. Meanwhile, it’s one of the sunniest weeks we’ve had and I’m glued to the sofa.

Funny how each tiny phase feels like an age… I know that by next week I’ll have those smiles back, but for now, it feels like we will be ill forever and that little Audrey has lost her spark 😦



The gap widens…

~ Vickywoo ~ 1 Comment

When Audrey was a newborn, we over-used the phrase “she’s just a baby”. Because at that time, her needs were not very different to those of her peers. She felt different (floppier) and she had a cannula on her face for oxygen, but aside from that… It was still all naps, boob, nappies, bottle, cuddles…

Audrey was actually the first from the NCT crew to roll from her back to her front. At that point I thought she’d probably hit all the milestones within weeks of her baby friends. I was sure we had a baby with Down’s Syndrome that would out-perform any other.

Soon they were all rolling… And then Audrey was a bit behind on sitting up and holding her bottle/feeding herself. Then they were all crawling/bum-shuffling and she’s finally mastered sitting up, but even so, she wasn’t that far behind. But before you know it, they are all walking. They are all saying words; “Mama”, “Bye bye”, “Down”, “Dog”. Their hands are very purposeful… there is a marked difference.

Of course, all of the NCT mums are great. They play down their child’s achievements; “Oh he’s still not that steady on his feet..” or “He says ‘Mama’ for everything”, but bless them, their kiddies are doing what they should be doing and these are exciting milestones. I’m pleased for all of them that they have toddlers (bizarrely I have a toddler, but she doesn’t toddle). I’m (at times) genuinely relieved I don’t have to run after a walker yet. But of course there’s a little ‘pang’ there. I’d love for Audrey to be running around with her friends. I’d love for her to purposefully grab the drum and hit it with conviction (rather than some tentative taps here and there). But at the same time, I feel… Ok. I feel… like Audrey’s slow pace and our expectations mean that every little new thing she does is so exciting.

The gap has widened and that’s a bit scary, but in many respects, it’s not as hard as I thought it would be.

Today I watched Audrey cuddle a teddy, hand it to the speech and language therapist (who would then have a cuddle and pass it back), cuddle it again and so on. I just sat there thinking “she’s so clever!”. In fact, there isn’t a day goes by where I don’t think “she’s so clever”. She amazes me everyday.

I have taken her to a music class these past two weeks and sat there, filled with pride. She just loves music so much and she dances so creatively and enthusiastically. I basically sit there wanting everyone to look at my daughter, because she is the greatest dancer.

We also go to a weekly special needs group (where she cuddled the teddy) and Audrey works on development. She achieves something new every week. She always makes me proud. This week, she finally made a choice. They always offer the kiddies two toys and make them choose – Audrey would always either shake her head and refuse or just sit there blankly. Finally, this week she selected the maracas over the sparkly stick and then boy oh boy did she shake those maracas!!

I still kind of have to pinch myself about all this… that baby that popped out as a complete surprise… all those worries… all the negative thoughts… she makes me so happy and so proud. And every day I tell her how much I love her and how clever she is. Amazing.

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Love love love

~ Vickywoo ~ Leave a comment

I just wanted to write a post listing some things that Audrey does that I don’t want to forget… Perhaps I won’t forget, I’ll probably bore her with tales of her Hoover cuddles for years, but just in case…

I love…

Audrey’s eyes. The beautiful shape, the way they smile when she smiles, her eyelashes (that she inherited from me!).

The way she taps my should with her hand when I’m carrying her.

The way she reaches up with both arms to be picked up.

The way she dances… It’s a sight to behold! Rocking, head banging, hand wiggling… She is going to classes as soon as she can stand!

Kissing her forehead and soft hair.

When I ask her for a kiss and she cups my face with both her hands, so she can give me a full-on slobbery number.

Her sneezes. So tiny.

The way she picks up blueberries and eats them whilst maintaining eye contact with me the whole time.

The way she signs “finished” with a couple of turning fists.

Peekaboo with her own hands – it will never fail to make me proud that she figured out how to do that.

The way she claps, smiles and makes a positive “uhh” noise when she’s proud of herself (usually when we’ve praised her for drinking her water!).

The way her nose changes shape with a certain cheeky smile.

The way she giggles when she sees us putting on the sling/getting our coats on (because she knows she’s going out).

Her feet wriggling with excitement when food is coming.

The cuteness of her bottom lip before she cries.

Hoover cuddles! (Audrey is a little scared of the vacuum cleaner and clings to you like her life depends on it whilst it’s noisily on).

How she smiles and dances when I sing for her – even for the silliest made up songs.

The way she brushes her own hair, then holds the brush out to brush mine!

And many more… But that will do for now! X

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Mummy forum rant

~ Vickywoo ~ Leave a comment

Mummy forums. Personally, I find them horrifying. Like the Daily Mail online comments section, but scarier.

When you throw a question out to a bunch of sleep-deprived/shell-shocked/in-need-of-adult-conversation hormonal ladies, what sort of responses do you expect to get? And yes, I do think that us mummies can provide each other with helpful advice and support, but I also think we can confuse one another with conflicting advice and viewpoints. I guess this is why I would choose to look at medical professional sites for health advice, ‘proper’ parenting websites for weaning/naps/milk etc advice and personal mummy blogs for inspiration/comfort. I would never ask a bunch of mummies in a chat room about whether or not I can give Audrey x amount of calpol or if it was weird that she was doing so-and-so.

And NEVER go there to discuss immunisations. Yikes.

The problem is, I am a member of more than one mummy group on Facebook and various things clutter my feed… Ted says; “Just leave the group or hide the posts” and of course he’s right, I should do that… But I can’t help keeping them so I can judge/get annoyed/laugh/and sometimes (rarely) get some useful advice.

I spend a lot of time saying “Don’t these women have friends?!” Or “Haven’t they heard of Google?!?” But I guess the truth is, no, some of them don’t have friends they can ask and yes, they probably could Google it, but then they wouldn’t have an interaction with other mummies and maybe they desperately need that.

I’ve been hugely lucky in that I have several friends from school who paved the way and had kids a few years ahead of me. So we got loads of clothes, a cot and things we’d never even heard of (bumbo!). Then we did NCT and met a great group of people and shared an amazing experience together. Plus Tallulah from NCT did all the reading so I didn’t have to! Then I had some semi-blind dates with friends of friends with babies. Then there’s the local T21 group, who organise pre-school meet-ups so Audrey can meet other babies with DS close to her age (or more importantly, I can meet their mummies). There were plenty of people to sit and drink coffee with (decaf whilst breastfeeding of course!) and dissect the nap routine and symptoms of this and that and developmental stuff…

But what if you didn’t have that? I can’t begrudge these women their only outlet for baby queries and support, can I? Even if they don’t know the difference between “mummy’s” and “mummies”? Even if they ask questions that could easily be answered by a quick Google or a glance at an instruction manual? Even if they start a discussion about grooming pubic hair??

I give in. If it riles me too much, I’ll block… But for now just listen out for me muttering, “F*Â¥#ing Google it!”.

The power of love

~ Vickywoo ~ 1 Comment

From the age of 4 to 16, I lived next door to a family who had a son with Down’s Syndrome. I would say the overall feeling I remember when coming into contact with him (his name was Wayne), was: fear. To me, he was a giant man-baby, who had large, rough, dry, twisted hands that he would want you to touch. I did not want to spend time with Wayne. His mother, Betty, was (still is) a friendly lady with a cheerful voice and she was devoted to her family. She had two sons, (the younger was married with children), but Wayne remained at home, as intellectually he was possibly at the stage of a 2 or 3 year old and he was still in nappies (he was in his 20s/30s).

Sometimes my mum would send me next door to pay Betty some ‘catalogue money’ (she ordered things for us through her catalogues, god this was the 80s/90s, but sounds like the dark ages!). I distinctly remember that Wayne was more often than not, sat with large headphones on, listening to “his music”. As I grew older, I felt sadness for Betty. Her husband died at some point during our time there and so she was alone caring for Wayne.

My mum is a one for repeating stories, so I’ve heard 100s of times how when Wayne was born, the doctors left him on the side and told Betty he was like jelly, that he wasn’t worth her bothering with… she should call an institution to take him away… and how she held him and told them they were wrong, he was her baby and she was keeping him. She loved him instantly and unconditionally. I always thought it was amazing that she dealt with this ‘burden’ so well. I recall she had someone come for respite care – so she could go to bingo or just have time to herself and it just seemed like such a rough deal. Rough that as an old woman (old to me), she still had a ‘child’ to look after.

I also heard stories of how she had taken him out of a bad nursery because they had just dumped him in a corner and not worked on his development at all. Of how she had been advised to have a second child quickly so that Wayne would have a sibling to learn from. And how he had exceeded expectations on many fronts – because doctors had said he would never walk and also that he would die at a very young age. Wayne actually died a few years ago and he was in his 50s. I suppose it wasn’t that long after that Audrey was born. Betty was keen to meet her and I was really keen for her to, too. It’s funny how you become part of this club. Someone new joins the club and you’re so excited to welcome them, but you know from their perspective it’s not a club they wanted to join… But it won’t be long before they’ll be the ones excited to welcome a new member.

When Betty did meet Audrey, she kept saying how she was ‘high functioning’ and definitely more advanced than Wayne at that age etc. It was very sweet of her and of course I’m pleased to hear it, but I realise how it doesn’t matter. Of course I don’t want Audrey to be in nappies in her 50s and I want her to be able to hold a grown up conversation – in fact I have very high expectations for her… but…. I also know that no matter what, we will love her and be happy having her around. She is amazing and a joy to us. Just as Wayne was to Betty. I know she was happy to have had him. Her life was not the burdened one I imagined from the outside.

So the next time you see a mother or father dealing with their child with special needs, don’t feel sorry for them. Don’t think they are burdened. Just remember, there is love there and love is a very powerful thing. Huey Lewis knew it. I know it. Now you do too.

Work vs work

~ Vickywoo ~ 1 Comment

I used to think the stay at home mum option was the easy/lazy choice… My mother didn’t work until I was around 8 years old and even then she just did some part time work, which meant she was still around for the school run.

My sister got pregnant at 19 and decided to quit work and be a stay-at-home single mother. I honestly thought she spent most of her days in bed!

Now of course I know that motherhood isn’t one long nap or even one long playtime. Babies are exhausting and they require a lot of looking after. Yes, you might get a chance to nap when they nap… But they might only nap indoors in your arms for 6 months (thanks Audrey), so you can’t nap… Or they might prefer afternoon buggy naps (again, Audrey!), so you need to pace around when you’d rather have your feet up with a cuppa.

It’s all challenging and rewarding, up and down… I salute you if you devote your time to raising your children full-time. There’s a lot of walking in parks, but it’s not a walk in the park.

Despite motherhood not being quite the meander down easy-street I imagined, I still dreaded going back to work. I thought it would be such a shock to my system and I worried I would struggle with someone else looking after Audrey. As it turns out, it was a blessed relief! Work turned out to be easier than looking after my own child!

Since drafting this post a few weeks ago, where I basically just wanted to ramble on about the beauty of work/baby balance; I have lost my job.

I did know it was likely to happen (the company was clearly in trouble), but it was still a shock – we were all out of jobs so quickly. When a company goes into administration it can bring everything to a pretty abrupt end.

And so… a job-hunting I must go. This is where I realise that having a baby complicates things on that front. Can I get a quick-fix temp job in a shop? Not really… Unless they can give me 3 days a week that guarantee I can get across town for nursery pick up by 6. And will the wage justify the child care?

I started to contemplate full-time work (since there are 100s more full-time jobs than part-time ones) and realised how much I do value my time with Audrey. It’s not about an ‘easy’ day or even about me having the control, it’s about our relationship and the fact that; time together = bonding.

Right now I’m riding high as Audrey’s number 1. She reaches for me when someone else is holding her, she moans when she thinks I’m leaving her and gazes at me with such love… What if her keyworker at nursery became that number 1?!

And so I shall continue my quest for part-time work, to keep that work/baby balance, but in the meantime I can work extra hard to maintain my place at the top of Audrey’s tree…

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Down’s Syndrome Awareness Month approaching…

~ Vickywoo ~ Leave a comment

When Audrey was born I wasted too much time worrying about the most ridiculous superficial nonsense! I thought about things like her not having any fashion sense! That she might be fat! That mother-daughter time would never be how I had once dreamed… I’m so ashamed by these thoughts.

One of the worst/craziest worries was that I would never think she was beautiful. Here we are at 14 months, she’s 100% the most beautiful baby I have ever seen. It should be a given that a mother would feel that way about her child.

I suspect my blog posts will get a bit repetitive, I apologise in advance! But I’ve realised the importance/benefit of “raising awareness”. If people were more aware and if disabilities were a part of everyday life, those of us suddenly thrust into this world might not feel so awful/negative about it.

October is Down’s Syndrome Awareness Month.

In October 2012 I fell pregnant with Audrey. In October 2013 she was 3 months old. Thanks to Instagram I found out about DSAM and found all the DS hashtags that led to me to become part of a community of wonderful people enjoying life and sharing their DS experiences. Seeing happy families from around the word really did make a difference to me. It has given me hope, support and also the confidence to share our story and share Audrey with the world.

Back in October 2013 I had around 80 followers on IG, a year on I (Audrey!) have 720!

I must admit, my first thoughts about Down’s Syndrome awareness was; “I’m aware of it, as are most people, not really sure why we need to increase awareness”. Ha. But gradually I realised what the “awareness” was doing for me and how much strength you can gain from seeing other people go through what you’ve been through and come out the other side.

And then I think about awareness and inclusion and what that can do for the world. If TV and adverts and mainstream media embraced special needs, disabled people, minorities… Maybe we’d all feel more comfortable around people who are “different” to the norm. Maybe we’d all feel less scared by “different”. And maybe a woman somewhere getting told her baby has DS won’t immediately feel the future has been destroyed, but will think “Oh, ok, unexpected, but people with DS lead happy and fulfilled lives, things are going to be ok”.

Audrey in October 2013…

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And now (Sept 2014)…

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The road ahead…

~ Vickywoo ~ Leave a comment

When you have a baby, you suddenly realise you are at the beginning of a very long journey. You look at this tiny bundle that is totally reliant on you and the scale of what you’ve taken on hits you – they need you for at least the next 18 years.

Now imagine that heavy realisation combined with all the preconceptions about Down’s Syndrome…

My husband has this amazing positivity that can turn anything into a good thing. When Audrey was just weeks old he was saying how lucky we would be potentially never experiencing “empty nest”! I liked his thinking, however I had always (when thinking about having children) imagined the “pay off” towards the end when they look after you!

It is natural to always be looking to the future (Where will our next holiday be? Where is my career going? etc), but Audrey is (slowly) helping me to focus on the present. Wondering and worrying about when she might crawl, when she might get teeth and what sort of adult she might be… It’s all pointless. I can’t predict these things and why do I need to know when these things will happen?! Do parents of “typical” babies fret about these things?

One of the biggest realisations after becoming a parent of a special needs child, is that life goes on and in not much of a different way to how you imagined it. However there are times where I worry we are in denial about what having DS means to Audrey and her life. Other times I’m just thankful we are positive people and that we don’t let it get on top of us.

The fact remains that Audrey’s life will be different to that of a typical child. There will be more challenges and there will be difficult times, but that doesn’t have to be our focus, we can choose to carry on as “normal”. I have certainly said many times how glad I am that we didn’t know Audrey had DS when I was pregnant. The pregnancy was so happy and we had no time to fret or form ideas about this baby growing inside me… It was relatively worry-free.

I think the best plan is to enjoy the journey and let the road unfold ahead of us like the magical mystery tour that it should be…The ups and the downs…We’ve already shown we can handle surprises…

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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