Twins – my life upside downs – 2018, we are coming to get you…

Happy New Year everyone! I hope you all had a wonderful time over the festive period.

I have just got my hands on our 2018 calendar, as produced by the lovely Tom Smith (he put a calendar together that he has sold with all proceeds going to PSDS, the charity which supports children with Down Syndrome and their families – absolutely blown away he chose to do this for PSDS). As I went through last years calendar to make sure I noted down birthday’s correctly, it made me reflect on what a year we had.

It has been filled with ups and downs…
Jack having lots of visits to hospital with croup and colds that see him not breathing great (but loads better than he was in 2016, so I am hoping this year there will be none of that going on!)
Jessica starting to talk, and to be honest she hasn’t stopped to take a breath! She amazes me with the words she uses and remembers and actually gets in context – and how cute it is that she can’t say words properly, v is replaced with b ūüôā
Jack starting Digbies, getting Portage support (and then losing it within weeks. We’re still waiting for a new support worker), being refused occupational therapy support – but after we sent a strongly worded email, getting granted¬†it! Being refused speech and language support, but after a few phone calls he now has a date for an assessment (this week!).
Jack started to walk, unaided, at around 21 months old!
They’ve gone to parties galore last year, started nursery, been in their first Nativity and throughly enjoyed their 2nd birthday and Christmas.
Jessica went to her first panto – oh yes she did!
Jack now being able to do five signs and saying some words (well, we are convinced he is anyway!). And in finding that voice he has hit the terrible two’s with a bang and gets very stroppy if he doesn’t get his own way – don’t know who he takes after…

2017 was a tough but rewarding year and I am sure 2018 will bring lots of highs and lows  too, but we are ready for them!

Some of my favourite pictures from 2017

 

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Twins – my life upside downs – 1 year on…

Yesterday, good ole Facebook memories and my lovely friend Donna Croft, gave me the reminder that it has been a whole year since I started writing this blog. As you know now, the twins (Jessica & Jack) have been around for just over 2 years, but it took me a while to get round to writing about our ‘journey’.

The blog started off as my own journal to look back at in future years, but due to the positive feedback I received from close friends and family, it made sense to go public, warts ‘n’ all and get my story ‘out there’. So that some women (and men) could hopefully gain some confidence to talk about similar issues and also hopefully use my journey as some form of inspiration to confirm that you are not alone and that you must keep fighting for what you want.

Anyway, near enough to the ‘anniversary’ of my blog I received a message that I wanted to share with you. I want to share this partly for my own gratification and partly because it epitomises¬†the reason I started my blog. When I read back that very first entry I had written that the aim of this blog was to:
1. give some hope to women who are struggling to get pregnant
2. talk about my experience of pregnancy (at age 42 and carrying twins there were some challenges)
3. raise awareness about Down Syndrome and how, despite a lot of negative information out there, it is wonderful and rewarding
4. impart insight on life with twins

Well, this message has given me the greatest of pleasures that I have achieved aim no.1, to at least one couple out there. And, it ended with an amazing result…

I have known Janet (I’ve decided to keep her name private although she has, confirmed that I can share her message and story!), for over 30 years now. She is one of my little sisters best friends, and whilst a bit younger than me, I have spent time with her and my sisters other ‘besties’ on holidays and at parties etc. over the years.

Janet had been having fertility issues and after reading my blog, and speaking to my sister, we started to chat about what I had been through and what she was going to embark on to get her dream family. This, of course, was over some period of time. If you have ever had fertility issues and been through any kind of tests etc. you will testify that it takes a long, torturous time, to get through!

Well, I am so happy to share with you all, Janet got her dream family and has recently given birth to her beautiful daughter, Megan (not her daughters real name).

Janet recently sent me this message, which I want to share, to confirm that I had managed to help someone – not get what they were after, but give that hope and positivity for Janet to finally have that baby in her arms.

A little snippet of that message is as follows:
“Hi Manda, I wanted to let you know how incredibly grateful I am for your support throughout my treatment. I want you to know what having you there meant to me. you helped to keep my spirits hight and my head in a positive place and I’m almost certain that contributed to my positive result and subsequently holding this bundle of life in my arms. Megan is wonderful and my love for her has reached a level I didn’t know existed. So, thank you to you Manda for taking the time out to be there for me whilst having twin babies to look after!”.

I cannot tell you what it meant to me that she took time out to write that to me, whilst having a tiny baby to look after. It has given me so much happiness that one person has found my journey helpful and that (albeit it took no time at all for me to be there for her, as I would do for anyone who needed some support), she has that little person in her arms. Of course, I know that Janet did ALL the hard work, and by god I am super proud of her, so please don’t think I feel it is all down to me – far from it! But, I want you to know, yes you who maybe struggling, that there is hope, there is light at the end of the tunnel for some of us. Stay strong and if you need me, want to have a chat, ¬†have any questions whatsoever then please drop me a message, and I will get back to you as soon as I can.

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Twins – my life upside downs – celebrate good times!

Today has been a great day and I wanted to share it with you – seeing as you’ve had to read my low times, I thought I would give you some ‘good’ news from the Grover camp!

Jack had his Occupational Therapy (OT) assessment today. Yes, after me having to write and push to get him to be assessed, following their decision to not support Jack, we got seen today.

We went into the room and Jack was his usual inquisitive self, checking the room out as well as the therapist who was assessing him. She gave him some toys to play with and he played whilst we chatted.

I explained how Jack was not getting any support now, bar from Digbies (which we pay for and is amazing!), as his Portage support worker had left and not been replaced. We (Richard was at the appointment too) went on to explain how Jack had responded so well to the sessions with Laura, Portage, and we had seen a marked difference in him following a couple of sessions – so what could he achieve with even more focussed support. With the best will in the world, Richard and I are not experts with kids, let alone a child with additional needs, and we need support and guidance to help Jack realise his full potential.

The therapist told us how well she thought Jack was getting on and how impressed she was with him. Panic set in, I immediately thought this was setting us up to say that she couldn’t give us or Jack any support. How wrong I was…

We have come away from the appointment extremely happy parents – she is going to go into Jack’s nursery and see him in action there and give them ideas and help in how to best support him; with equipment (chair etc.) and how to encourage him during play. And, she is going to see Jack every 4 weeks to assess his progress and give us goals and things to work on! We couldn’t be happier and to be perfectly honest, very relieved at the outcome. I was having visions of writing long letters and having serious phone conversations to push this further, if we had been declined support again – but I don’t have to do that and Jack will get what he deserves!

I suppose the point I am trying to make with this post, is that if you don’t ask you don’t get. I would encourage anyone who feels their child needs some additional support at any stage of their little lives, don’t stop, keep pushing, keep asking – of course I am not saying be rude or unsympathetic to why you may not get a ‘yes’ straight away – but to not take no for an answer. With Jack we knew from birth that he would need help and support – and that still took us 2 years to actually discover when and what that should be – it is not easy when you have a little one who needs additional help, whatever level that may be, but trust your instincts and go with them. We all want the best for our kids, and we will do exactly the same for Jessica should she ever need anything.

Tonight we have two very happy parents in Horsham – one of which is drinking wine to celebrate, can’t guess who that is…

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Twins – my life upside downs – me, crying, in Horsham town…

Well, I don’t cry often but last week I was reduced to tears in the middle of Horsham town centre, pushing the twins around, post soft play adventures.

Why, you ask? I shall tell you…

A few weeks ago I wrote about how Jack had been refused Occupational Therapy (OT), the reason for this is that he has ‘no functional issues’. We were notified of this decision in writing and the letter stated that the ‘referral criteria’ was enclosed with the correspondence however this had been omitted and no enclosure was provided. The day we got the letter Richard and I sat down and wrote an email to Jack’s Paediatrician expressing our concern at the refusal – in a nut shell we reminded them of the fact that Jack has DS and that he will need some support at some time and surely the sooner this help was provided, the better and easier it would be. We didn’t understand why they had refused to support him and we wanted to have an explanation of how they had arrived at their decision. Our email was sent on the 2nd October – so as I hadn’t heard anything back, 11 days later, I sent a chaser email asking if anyone was going to deal with our concerns. That afternoon was when Jack’s Paediatrician called me – she explained to me that someone from OT should have called me to talk through the criteria ¬†required to receive OT, but nobody had called me. She went on to say that it was probably down to the fact that Jack is doing ok, he walks, he can feed himself (although drops quite a lot still) and signs two words. Now, this is when I got upset… How and why does that mean he doesn’t ‘qualify’ for support?! He has DS, he is behind his ‘mainstream’ peers (and I can give direct comparison and did – I can have a conversation with Jessica but Jack can’t even say Mummy yet!). And, if he is doing well shouldn’t that be built on so that he can realise his full potential? Also, he and Jessica will be starting nursery soon and he needs to be supported there, to sit in a seat properly (he will do that, but he slips down easily, Jessica doesn’t), this will then help him when drawing, having a snack with his fellow nursery goers – and much more! I also let her know we had received a letter from Speech & Language (SALT) to say Jack was on an 18 week (yes, 18 weeks!) waiting list to be assessed!

Upon me explaining this, and she could hear I was getting upset (I couldn’t help myself, I think it is frustration, anger and determination all pouring out of me), she promised she would try and get a meeting with OT, SALT, Jack’s physio and ourselves arranged in the diary so that we could discuss him and his development and agree how to move forward. This made me feel a bit better, but I was still very upset and ashamed to say I ended up ringing Richard at work to offload. All the time Jessica was singing songs to me! ha ha!

I have felt quite down over the weekend just gone about this. It feels to me like I have to fight for everything… Even getting the twins was a huge battle, spending 6 years firstly trying to get approved to have IVF, then having a miscarriage, then being refused funding for further treatment as I turned 40, then a failed IVF attempt, then getting pregnant and having a pretty rough pregnancy from the off – quite frankly I felt we deserved a bit of a break and for something to run smoothly for a change. But, life is not like that is it. And my motto has always been ‘if you don’t ask you don’t get’ – so I pulled up my big fat pants (I really need to sort out losing this baby weight, they’re 2 now!) and decided that I would not stop fighting until Jack gets what he needs to help him through life!

A new week and we are on the up! I had a call from OT this week and after a lengthy conversation they have agreed to assess Jack, hopefully this will be in November as they have had a cancellation, just waiting to find out. ALSO, Jacks Paediatrician is working on getting a meeting with OT, SALT, Physio and us sooner rather than later – I can see light and we are so heading towards it! Watch this space!

Twins – my life upside downs – 2 years ago today…

The 9th October 2015, what a night that was for me…

It was my third night in East Surrey Hospital, I had been waiting for my twins to be delivered there but they had no room in the Special Care Baby Unit (SCBU) so I was sat waiting to be transferred down to Brighton Hospital.

I was 35 weeks and 2 days pregnant and struggling BIG time. I was about the size of a whale, which is quite some feat considering I am 5ft 1inc (and a half) and usually a size 8/10! I had severe oedema, was being monitored for pre-eclampsia and twin 2 had polyhyramnios (excessive fluid around him) and as a result I couldn’t really feel him moving and he was putting a lot of pressure on twin 1, our little girl. So all in all it was getting all too much for me. East Surrey were amazing and had giving me a set of floatron boots (as I was so swollen I couldn’t wear the standard compression socks, even the mens large sized ones were way too tight – so that gives you an idea of how swollen I was), they had also organised for me to have a special mattress, as I was in danger of getting bed sores as I struggled to get up and move around – going to the toilet was a proper mission, taking me a minimum of 5 minutes to manoeuvre myself out of bed and then a long time to walk to the toilet as I couldn’t stand upright for long. Quite frankly if they didn’t get the babies out soon I was in danger of being bedridden!

At midnight I was finally transferred down to Brighton. It was my second time in an ambulance (first time was rather embarrassing – don’t say a word Lisa & Holly!), and if you have ever had a trip in an ambulance you will know how uncomfortable it was for me. I was rolling around on the bed, as we bumped up and down. We did have a laugh though, two ambulance crew, a midwife and I – and we challenged the driver to beat her record time of getting from East Surrey to Brighton, she did not disappoint! I had to tell them to stop making me laugh too much though, it hurt to laugh!

I was settled into a private room, given another shot of steroids and instructed to be nil by mouth until I had the babies delivered. I am not going to lie, I was getting a bit scared, and very excited, by it all now – knowing I would be cut open in the morning and I would finally get to meet my little miracles. I had waited 6 long years for this moment… and it was a moment that has changed my life, for the better.

Twins – my life upside downs – a busy few weeks

The past few weeks have whizzed by and we seem to have crammed lots of great stuff in!

Jack started Digbies three weeks ago, we’ve had a couple of weeks of getting to know the team, other children and parents and today was the first group where we had a therapy session. Digbies is a service, that we pay a contribution towards, provided by PSDS and will give Jack and us support in three areas; occupational therapy, speech and language and social skills. The first week Jack and I went solo and Jessica spent the day with Richard. To make up for Jessica being dragged from pillar to post, Richard decided that weekend to take her on her first trip on a train, they headed to Gatwick airport to see some planes. Had lunch at Giraffe and went up and down on the monorail – with Jessica shouting “happy holidays” to everyone!

Jack also started his Portage support sessions too! This is where the lovely Laura comes to our house and he is learning by play with her. He has already come on in leaps and bounds – he now signs ‘more’ and ‘thank you’ on a constant basis.

The second week at Digbies; Richard took Jack and Jessica spent the day with her Nanny. It was more getting to know Jack sessions and Richard getting to know Digbies. Whilst I was mostly drinking alcohol with my friends, getting on a plane and jetted off to Benidorm! Three whole nights away… You may judge me for leaving my children or you may well be envious of me – it HAD to be done! This is going to be an annual theme (we went to Benners last year too), however, we all agreed that we have done Benners now and need to go somewhere with more culture, Magaluf was discussed – ha ha ha! On the coach ride back to the airport, on our way home, I was listening to some ladies discussing their children and starting senior school. One of the women was saying how she felt that her daughter doesn’t fit in and that she wasn’t really what would be termed as a ‘mainstream’ student. But that she had told her daughter that being different is good. That not everyone needs to be the same and how the world is made up of people being different. This made me smile, as I thought that I will use that with Jack as he grows up and so that Jessica knows it is great that we have Jack (who will never be classed as ‘mainstream’) and that not everyone, disability or no disability, fits in immediately – but there is a place for everyone in this world.

On his third week at Digbies we took Jessica along with Jack and I. Well, and I know I am biased beyond belief, but she was so so good! Played with all the children and didn’t kick up any fuss. Ate her lunch at the table with Jack and the other children. She came into Jack’s OT therapy session and she ‘helped’ Jack, so cute! Jack did really well with his session and we have been given some things to work on with him – which are hilarious as he just laughs when we do them! After Digbies we went to see the Morley’s and ended up going out for dinner – it was so nice to have all the kids round the table.

In-between all of the above Jack has his next hearing test. Now, I have never taken him to have this test, largely because I know that I would laugh, (my sister and I had to have hearing tests when growing up and I remember vividly laughing, with my mother, at Claire having such a test!). But this time Richard couldn’t take him so it was down to me. Jack was awesome and true to form I giggled through it! But the outcome is that his hearing is good and he doesn’t have to have another test for 6 months! Boom!

Also, Team Joggers for Jack completed the respective 10k, half marathon and 1 mile kids runs – we have raised over ¬£1600 for PSDS (the Down Syndrome charity we belong to, who provide Digbies). So proud of the whole team. We’ve signed up a couple of the Banners girls to do 10k next year (it’s in writing now, Hels & Zo! Ha ha ha) and Lisa and I committed to attempting a half marathon next time round – eeekkk! Watch this space for how big Joggers for Jack becomes in 2018!

So, all was going well in Team Grover world, until today… back in August when Jack had his last developmental check, I asked that he get referred for Occupational Therapy and Speech and Language Therapy too. We got a letter informing us that Jack has ‘no functional issues’ and therefore does not fulfil OT referral criteria! I can’t believe it – he has Down Syndrome and is behind where the average 2 year old is developmentally, therefore why does he not fulfil the criteria to get support?! Surely, with early intervention and support, Jack can become the best he can be? Then another blow… Portage support will stop after half-term and we don’t know when we will get it back! I am feeling so deflated by these set backs, but determined to push to get the support Jack needs and deserves!

Pics to end on a high!

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Twins – my life upside downs – what could have been…

My social media feeds (god I sound like a social media queen eh?!) are filled with pictures of gorgeous children, either going back to school, starting ‘big school’, starting school for the very first time or starting pre-school/nursery. It is so lovely to see all the kids growing up and moving on to new chapters in their lives – little do they know how quickly it all goes and that they should make the most of every day. Instead, like I was at school, they will be wishing the days and years away until they can be classed as adults! And, as we all know, thats nowhere near as much fun as being at school with all your mates!

Now I know what I am going to say is not really talked about and I by no means mean any offence or upset to anyone – but I am sure I am not alone in how I am feeling and if by writing this down it helps someone who reads it then thats a win for me! I started this blog to share my experience and how I became a mum to my two little miracles and I wanted to make sure I shared all of what happened. It wasn’t an easy ride and along the way I lost a baby. The baby died inside me – because I was taking progesterone to trick my body into thinking I was pregnant (as this pregnancy was following my first round of IVF) I didn’t miscarry it. I was given the option to stop the drugs and let the baby ‘bleed’ out but I couldn’t bear the thought of doing that, so I had an operation to remove it. Seeing all these school pictures did make me realise that the little one I lost would have been starting school this year and I have to admit it made me feel a bit sad. I know that my little one was only 9 weeks inside me, but I don’t think that should mean that I shouldn’t feel sad that he/she didn’t make it into this world or that I won’t see him/her starting school, does it? Don’t get me wrong, I am not crying or getting really upset at seeing pictures or feeling envious or anything like that, it just made me feel a bit sad. And, I am definitely one of the lucky people in this world – I have my rainbow twins, who bring me lots of joy, happiness, laughter and, I will admit, frustration. Would they be here if I my first baby had survived, I just don’t know – what I do know is that they are here and I am very grateful for the both of them. And when they come to go to pre-school and school, I too will be posting pictures of them, very proudly.

I know some people will question why I think I am lucky, I have one child who is not considered perfect in this world as he has Down Syndrome – but believe you me, I am the luckiest person I know. Jessica and Jack are amazing small people and Jack, although will bring different challenges for us as a family, is doing just great! So, yes, I am very lucky!

I wrote this blog as I just wanted to let anyone else who is feeling a bit low or a lot low about their little one not being here – it is ok to feel like that, it is ok to talk about it and it is ok to pick yourself up and carry on. And if you have not had your rainbow baby/s yet – I am sending you all the positive vibes I can that it happens very soon for you.