Friends and Family

I’ve read blog posts where mummies (of children with DS) have said “you certainly learn who your friends are” (after a Down’s Syndrome diagnosis), so I just wanted to write a post in praise of our friends (and family).

Because we certainly learned who our friends were… and they were exactly who we thought they were. 

Lots of worries flashed through my mind in those first weeks of Audrey’s life. And one of those worries was that some people may not want to see us anymore, because our child had been born with special needs. I feel like an idiot as I type that now, but at the time it was something I genuinely  thought. I worried people would feel awkward having to say she’s cute (when really they would be looking at a face that just screamed Down Syndrome and therefore ugly) and that they wouldn’t be that interested in visiting her. 

Shall I enlighten you as to how our friends reacted?

Well, let’s see… EVERYONE wanted to see her. They were all interested and positive and supportive and… I suspect exactly as friends are when any baby was born, but it felt like they were extra in love, extra supportive.

Maybe this is just how people are when a baby is born (I have no comparison to a “typical” baby), but with Audrey it was like we had made a little celebrity. Friends went out of their way to shower her with love.
Of course it is an unwritten rule that when you see someone’s baby you have to say they are beautiful or cute or some positive adjective, even if the baby looks like a wrinkled old man or yoda. But you don’t have to say you love them. I didn’t expect other people to love my baby, but they did. They loved her. And they were wonderful at showing it and saying it. Not just through gifts of clothes or toys (although we were well and truly showered), but through visits, texts, emails, gifts of food (for us), lots of help, support and lots of gushing about Audrey. Over compensating? It didn’t feel like that. Honestly.

And as she’s grown, people haven’t shyed away or avoided contact, they’ve thrown their arms open to give the B-W family (but mostly Audrey), a massive hug. 

Why on earth did I expect any different? 

Ted are I are both blessed with an excellent bunch of school mates who still make an effort to hang out, as well as lots of cool university friends, Brighton friends, work friends and now NCT (antenatal class) friends, all of whom have been great. 

I have so many positive friend moments that play through my mind… Becs coming with me to hold may hand through the scan that discovered Audrey wanted to get out, the tearful hushed conversation with my brother as I explained why we had struggled to confirm her name, the dreaded tearful phone calls to Claire and Mary the morning after she was born, which were met with declarations of instant love. Unconditional love. Katie and Claire standing with me when the doctor confirmed Audrey’s heart was fine and the tears flowed again… I’ll stop there as I can’t name check everyone and I don’t want anyone to feel left out!

The unconditional love is the key. No one was planning to love her only if she was cute. Or only if she could walk at 12 months. Or grow up to be a genius. 

They love Audrey because she is a little piece of us, their friends. Oh and she’s awesome.

Here’s a little dig through the archives for Audrey pictures with friends and family…

   
                  

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Eyes

In my day, it was called a lazy-eye or being cross-eyed. Apparently we now call it a squint, so Audrey has a squint.

If you had told me years ago that my child would have a squint, I’d have been pretty upset about it. It wasn’t exactly a blessing as a child and I have always thought how unappealing it must have looked – people cross their eyes to make an ugly face and well, that was my face!

I have memories of being bullied about this at primary school (under 10 years old), as well as at secondary school, but at a very young age it didn’t bother me. Although I do remember one incident from when I was probably around 6, when I was at home crying to my mother because a boy had been teasing me and calling me cross-eyed. I recall my mum telling me that the children were teasing me because they were jealous of my “beautiful eyes and lovely long eyelashes” and I just thought she was deluded. Because it certainly didn’t feel like I had beautiful eyes.

After some time with glasses and a patch, I had an operation around the age of 4 to correct the lazy eye. Shortly after, my other eye decided it too couldn’t be bothered to work in conjunction with the other one and face forward, so I had another operation shortly before my 8th birthday.

I don’t remember the first operation as such, just being in a bed with my parents at my side, constantly doing crosswords or playing this join the dots game my dad always played (that was a little like noughts and crosses). Oh and I think my parents’ best friends bought me a Minnie Mouse cuddly toy back from Disneyland around that time. Other than that, no pain or scary memories.

The second time I remember more clearly. I had a private room (with a TV!), I made friends with an old lady down the corridor (most other patients were there for cataracts), people gave me presents (I got a personalised Peter Pan book, very cool) and I had a terrible reaction to the anaesthetic. I awoke and became some sort of crazy angry child, thrashing my arms, trying to rip the patch off my face, shouting I was going to be sick… no I’m not… I still remember it so vividly and how my mum said I shocked all the nurses as I had been such a lovely little girl who turned!

Anyway, funnily enough, the fact that I’ve been through the operation (twice), makes the thought of Audrey needing surgery not such a big deal, my main worry would be her being on the receiving end of any bullying.

Although my operations did much to ‘clear it up’, my eyes were (and still are), subject to the odd turn in. It was always bad in photos (and I hasten to add I have never been able to control it and was only semi-aware of it happening) and if I have to look someone in the eye from a distance, I always worry it is going to happen, even though most people who have only known me in the past 10 years or so say they have never seen it happen.

But as anyone who has lived through secondary (high) school knows, if you have an obvious “flaw” of any kind, you are screwed. And it’s difficult to forget how brutal teenagers can be. Around the age of 12 or 13, a song came out called ‘Kriss Kross’. Wow, spectacular timing. It was sung at me a lot. There was also a horrible girl who used to ask me what it was like to have “bumble bee eyes” (wtf??), her profile now sometimes pops up on Facebook as someone I should befriend, ha. 

Eventually my eyes were getting better and better and people seemed to have short memories as the bullying faded away. Luckily, shortly before turning 15, our dog bit me and I had a hideous scar on my lip as a new focus for the haters (!); but that’s another story…

Anyway, what’s odd is that I don’t think Audrey’s squint is ugly. I sometimes forget she has one (at her last eye appointment we were asked if she squinted less whilst wearing her glasses and neither my husband or I could answer the question). I’m actually surprised by how little it bothers me.

But then sometimes one of us takes a great photo of her and there is the squint… And I think; “If only her eyes were straight, that would be a lovely photo”. And I feel bad about that. Because it’s not a big deal and like my mother before me, I genuinely think Audrey has the most beautiful eyes. 

The fact is, kids are bullied even if they have no obvious things to pick on (maybe they are too pretty or too thin or too clever), so we can’t do anything to protect our little ones from the harsh realities of school life. But as I passed a noisy school playground the other day, picturing what Audrey might be like as a little girl in her uniform, I decided she will be ok no matter what life throws at her, because she is awesome and she has so much love in her life.

   
   

On the move!

Watch out world, Audrey is on the move! 

It’s been a surprisingly underwhelming transition from random bum-shuffling (pivoting in a circle, sometimes resulting in movement by chance) to purposeful bum-shuffling (moving her legs to travel straight ahead to reach a specific target – usually a shoe or rucksack or the coffee table).

I expected whoops and a fan fare, but we were more like “is she moving forward properly?” And it was tested with her interest in a shirt sleeve dangling from the ironing board (as you do). Ted kept moving back and Audrey kept getting closer… Then we knew. Mobility was here.

When Audrey first rolled, I was cheering like crazy person and filming her to capture the milestone. I decided she was a genius and I wanted everyone to know what she had achieved at that very minute. She was ahead of her “typical” peers, it was very exciting.

Fast-forward to now. Her “typical” buddies are all walking (of course) and have been for about 8 months or more. Some where along the way the pressure for her to smash records and be a genius baby wore off. I guess I realised that one day it just won’t matter when she started moving. She’ll be walking alongside me and I’ll probably have a few little moments in my head (“yippee hurrah she’s walking!!”), but eventually it’ll just be something she does. I mean, it can be a little odd having a toddler who doesn’t toddle, but you get used to it. She does other things that are pretty great, like signing lots of words, dancing like a pro and an amazing elephant impression.

But now she also moves. Which is pretty major, so why the lack of fanfare? Well, she’s not very fast, so it’s not causing major stress in terms of baby-proofing (yet), in fact, she can sit still for quite some time when occupied by toys or music. I guess I also feel less inclined to prove she’s “achieving”, whereas before I wanted to be sure people knew she was doing well and progressing, I think I’m more comfortable with who she is. Life isn’t a competition; not even for kids with developmental delays. We’re not trying to beat her DS peers to the finish line. It still feels like Audrey is growing up ridiculously fast, even though she’s traveling at a much slower speed than typical kids, so why would I wish this time away?

Anyway, in the interests of full documentation, Audrey started her purposeful bum-shuffling on Saturday 28th March 2015.