General update

So much to write, so little time.

I just wanted to check in and say; we are surviving. Still get hit with the “my mum’s gone” slap in the face every now and then, mostly pretending she’s still here.

Job on the horizon. Weather too hot. Short break away with friends coming up. Trying to put my positive pants on and not be a wreck.

Audrey and Rex both thriving. So much talking! And climbing! And singing! And whining! I’m exhausted and struggling, but they are the best and I wouldn’t change a thing.

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Good grieving ?

Me and my mum, end of 79/early 1980

Around 2 weeks after finding out my mother had 2 months to live, she died. The decline was fast, you could say “at least she didn’t suffer any longer” or you could say “how cruel that she was taken from you so quickly”, either way, we lost our much loved mother, grandmother, aunt, sister, daughter and friend on 3rd April 2017.
The funeral was on Friday, which was 25 days later. People say “That’s a long time to wait” and “Oh I’m sorry it’s not sooner” but I liked the time. I don’t understand the rush. Between death and funeral there is a sense that you have not yet let that person go. Once the funeral is over, it’s all over. And yet it’s not.

I’ve been functioning normally. We had to move house and I’m currently job hunting. We have two children under four, so functioning was the only option. Yet friends were concerned, was I really ok? Was I bottling it all up? 

It felt like there was a movie moment expectation that I should be a bawling mess on the floor. But I was having coffee and singing nursery rhymes with the kids. I was clearly not ok because I was seemingly ok.

So what is the answer? Should I be in tears half of the day and should I ensure that’s when someone is around to see it? I actually started to wonder if I was grieving properly… But look, I’ve done this before, I’ve lost important people, but I didn’t have children then. You can certainly afford yourself more wallowing time when you don’t have two children under four. And anyway, grief is different for everyone.

You can pause it a bit. I guess you could say that amongst the singing nursery rhymes and answering job interview questions I’ve had my “moments”. Random tears, random staring into space as stuff runs through my head. She really has gone. 

When we first found out Mum was dying I had decided that at 3 and a half, Audrey would forget her and that would make life easier. No explanations, no upset. However, I’ve realised that actually, Nanny can “stay alive” a little longer in order for Audrey to lock her in. She recognises her picture, she knows her voice (I still have some voicemails on my phone) and she knows her house. We arrived for the funeral and the kids were hanging out at Mum’s old house with Bibi (paternal Grandma) and some friends whilst the ceremony took place. Audrey looked around the living room; “Mummy? Where’s Nanny?” a poignant moment and of course it brought forth a tear, but honestly I was pleased. My clever little girl knew where we were (Nanny’s house) and she asked a reasonable question. I don’t need to keep telling her Nanny is gone. Because Audrey will keep her alive for me. As will Rex. The next generation. Their Nanny-inherented-eyelashes fluttering at me everyday.

My distractions.

Stuff and things 11

As I am struggling to get time to blog, I’m just posting a quick update of what’s going on with us.

So let’s see…

Rex is nine months old. He can walk around the coffee table at an incredible pace, he loves to stand (with support) and I suspect he will be taking his first independent steps in no time. He grabs  and pinches and pulls and bashes and bangs… He is active and strong! We are really getting a varied parenting experience. His nights are… Random. Best case, he sleeps 6.45pm-4.30am, has a bottle and then goes back to seep until 7am. Worst case, he wakes at 9.30pm, midnight, 2.30am, 4.30am and wakes for the day at 5.30am. The second scenario is breaking me.

Audrey is walking more and more. I’m a little frustrated she’s not just striding down the street, but she will get there. She asks to go walking when we are sat in cafes etc and does laps around the room. Her speech is evolving at pace – she amazes every day with new words and phrases.

Rex enjoys eating and is a blueberry fan like his sister. Audrey is getting fussier and fussier (just like me as a child), so we are going to have to work on her food variety. Vegetables have to be sneaky!

I love Christmas and so the build up has began. Audrey will definitely appreciate it a bit more this year. Rex… Well maybe he’ll get it next year. At the moment I think the wrapping paper will be more of interest than the pressies.

Stuff and Things 10

  
Rex is finally 7 weeks old. That magical milestone you’re shooting for… “Everything gets better after 6 weeks” they say. We shall see. I didn’t expect an instant change, but I hoped!

Audrey had an audiology appointment last week, terrible timing as she is about as snotty as you could possibly be. So it wasn’t very productive. 

She’s been on good form lately though and is singing lots of songs really well just on her own.

We made it to a music class (something which had scared me), but Rex slept the whole time and I even managed to pick up Audrey for the Hokey Cokey with him strapped to my front. And we went to the group for people with pre-school age kids with Down’s Syndrome, which was great.

Rex is stretching some gaps between feeds out a little, but he’s still unsettled and suffering with wind. I feel he will be an expensive child as we keep buying things to fix the issues… The latest is a vibrating chair. He is not bothered by it, it doesn’t seem to make him any happier than lying still on a mat does. We’ve also got Infacol, a Sleepyhead (he’s not soothed by this either) and cranial osteopath appointments. Of course I want him “fixed” so I can sleep, but it would also be a nicer existence for him if he was happier.
I’m currently sat in my dressing gown with Rex asleep on me and Audrey shuffling about, entertaining herself. I’ve been trapped for 2 hours. I didn’t expect this, but after about 40 mins he woke up in pain and I spent some time massaging his tummy and lifting his legs before shushing and cuddling unti he fell asleep again. I’m regretting telling Ted I didn’t need anything when he left for work. I’ve finished my water and I’m crazy thirsty. I know what you’re thinking – just get up and get water! But he is asleep!!

Fast forward to a few days on and I’m now pacing the house with Rex in the sling. Audrey is again, entertaining herself, shouting various things (Alice! Oh look! Jump! Book!) which makes the sleepy man twitch from time to time. Being out and about is in some ways easier, because he sleeps better when I’ve got a genuine march on and you can sort two naps if you go somewhere , feed and then come home. Of course it’s insane to pace the house with him in a sling, but it’s spitting with rain and Audrey isn’t dressed yet. There’s only so much I can get done sometimes.

There’s just so much about this time that is a shame. Ignoring my daughter (or at least not giving her the level of attention I would like), doing lots of things to the soundtrack of Rex crying (because he has such a short window for happily being awake), only really enjoying Rex’s company for tiny periods of the day because he’s just so unsettled… God I sound like a broken record.

I just find all that newborn banter that people on the bus/in coffee shops give me hilarious… “They grow up too fast!”, “Enjoy this time while you can”, “Newborns always make me broody!” – I’d just like to say, he can never grow up fast enough at this stage, I cannot wait to get passed this and I will not be made broody by a newborn ever again.

Slap me if I ever change my mind on these points!

Yours, sleep deprived and grumpy.

Stuff and Things 9

So, I’ve written two posts about Audrey’s physio sessions on a Friday and they are not physio sessions! Oops.

We were filmed last week by Katy (who is going to be featuring us on a fabulous website, relaunching in January 2016, don’t worry, full details will be supplied!) and Katy casually asked something about the physiotherapy and the woman leading the group gave a glare and corrected her – this is ‘Conductive Education’. So there you are, that’s what we do on Fridays that helps Audrey and upsets Mummy!

Getting Audrey out of a two-week virus with horrible face rash has been great, she is eating better, her face is back to its usual beautiful self and she is on form. Chatting and playing happily, in constant need of cuddles and then requesting to be put back down – she is bossy!

This week I went on a 2 day Makaton for Professionals Foundation Course which was great. I now know the signs from Stages 1 to 4 (plus some additional) and a bit of background, as well as teaching methods. I find Makaton and lots of early years education very inspiring and I’m excited to share more signs with Audrey and potentially move towards working in an area where I can teach/use Makaton regularly.

Christmas is rapidly approaching and if you don’t already know, I am a BIG FAN. I love mince pies and Christmas songs and twinkly lights and the general good mood that swoops across the country at this time of year. Audrey is still a bit young to fully understand the joys that await, but we are getting there… The dancing Father Christmas we get out every year was a bit scary for her last year – she’s loves him now. He’s had lots of cuddles and I’ve listened to his “Oh if Christmas makes you happy…” Song more times then I’d like to at this point in December and Audrey has already worn her Christmas jumper 3 times!

Today we had fun at a Christmassy version of a local music class we go to. I watched a little girl sit with Audrey and dance with her and they both checked out each other’s feet… Another little girl very kindly gave Audrey an elephant during the crazy scramble for toys and I was just generally loving seeing children just get involved with each other – not seeing any differences. 

Actually kids do often point and stare at Audrey; because of her glasses. In a shop the other day, I heard a little boy say “That baby had goggles on!” Which made me laugh. We also got on the bus the other day and a 4 year old thought Audrey was hilarious, she said “I’ve never heard a baby talk before!!”.

In other news, Audrey’s baby brother is giving me a good kicking, we are on week 29 and counting, but having two children terrifies me, so best to keep him in there kicking for a while longer.

Here are some snaps from Audrey’s Conductive Education… It’s so amazing to have a picture of her standing up/walking!

   
 

The downs 

Audrey doesn’t have a lot of physiotherapy sessions as the NHS service here is understaffed. This hasn’t been ideal, but I haven’t been excessively worried about it.

As we near the arrival of Audrey’s baby brother however, I do grow concerned over her lack of interest in standing/walking and I want this to progress as quickly as it comfortably can.

The truth is, we’ve been given exercises to work on at home, but I hardly do them because Audrey gets grumbly/upset. I basically let her get away with 20 seconds of standing here and there and then give up.

Some other parents of children with special needs recommended a local service (funded by a charity) that offers physio on a weekly basis, so I got in touch and we attended our first session Friday morning.

I’m not sure I can quite put into words what it was like. The funny thing is, I’m sure the ladies running it would have had absolutely no idea that when I left I had a cry on a friend’s shoulder because I found it all so hard. When I was at the session I bottled up all my feelings and was polite and thankful for their help. And that’s the thing – they were helping, this wasn’t a torture group! But oh it felt like torture.

Audrey was given some shoes to wear (the new boots we bought her just a week ago aren’t supportive enough) and she was “encouraged” to be in certain positions (kneeling, standing, walking(!), sitting and crawling). Audrey was her usual friendly, kiss-blowing fabulousness – but she spent much of the time saying “nished” (finished), “no” or simply grizzling. The bottom lip came out in full force (I just wanted to cuddle her!) and there were tears (from her, mine came later).

The ladies running the session assured me she wasn’t that upset (they’d seen worse) and they were encouraging… But it was one of the first times I felt fully exposed to a feeling that things were hard. That having a child with Down’s Syndrome involves a struggle. And I was angry that I have to put her through that in order to progress her walking… It won’t just come to her, we’ll have to work hard and it will be hard.

It was also just really horrible going to a group that wasn’t fun. Don’t get me wrong, they sang and we looked at books and drew pictures and had a snack… Most of the usual stuff… But normally I go to groups specifically for Audrey to dance and have fun (sometimes whilst learning of course), but I sit there beaming with pride whilst she does her thing and we leave happy.

This involved all the grizzling, plus questions about what she can and can’t do. It just highlighted her issues, rather than all the positives I usually focus on.

And I appreciate that there’s no use in me ignoring the tough stuff – we have to deal with it and get through it. But I guess I am haunted a little by some lovely things people said when we first had Audrey… “She’s so lucky to have you as parents, you’ll work so hard for her”, lots of people said we’d be so great at helping her progress and I felt worried about this expectation because I’m quite lazy, forgetful and also a soft touch – this combination doesn’t make for a great task master! I knew we’d work hard on the signing, speech and read to her a lot, we would play and hopefully make it educational… But I wasn’t confident I’d “push” her. So I guess this group highlighted this insecurity – or rather exposed it!

Now it’s been over 24 hours since the group, I’m feeling better about it (and remember, I am a mess of pregnancy hormones), so onwards and upwards! We’ll work hard and Audrey will enjoy standing up eventually and when she’s walking, all this tough love will have been worth it.

I don’t have any pictures from the group, but I’ve always got pictures of Audrey to share, so here she is from this morning:

  
 

Stuff and things 8

So I’ve started a new job. I’m working 2 days a week and Audrey is at nursery, which thankfully I know she loves.

We had parents’ evening last week and whenever I told someone (workers at the nursery) that I was Audrey’s mum, they would say “Hiya!” And blow kisses. And tell me how socialble she is. I enjoyed parents’ evening a lot, because I felt so proud, I know that Audrey is a character and very memorable!

She is moving up to the transition room before ultimately joining the over 2s, which is scary as they’ll all be walking and Audrey will be this tiny bum shuffler amongst them! But I do want her to move with her peers and I know it’s good for her to see typical toddlers her age – great motivation to copy them when she can. The sad thing is, she’ll be changing key worker and that’s just hard because we know she is attached to her current key worker (that’s the whole point, obviously) and I’ve really grown to love that bond they have. But onwards and upwards for Audrey!

Last week we also had two bits of good news- a thyroid test came back normal and Audrey passed a hearing test with (almost) flying colours! She couldn’t be completely signed off from hearing checks, as she has a small amount of fluid in her ear, so they need to check her again in the winter time (when colds etc are worse). Fingers crossed we’ll escape the need for hearing aids/gromits, but it may be that she needs them and that’s ok. Her speech is coming along very well.

They will also need to continue to check her thyroid, but at least for now we know she is ok.

We’ve got Daddy’s birthday coming up and then Audrey’s, so we are in for some busy weekends of fun. I’ll start prepping the Audrey turns 2 post now…