Last week we were fortunate enough to be featured in April 2018 edition of, Take a Break! I can’t tell you how excited I was about it!
Last week we were fortunate enough to be featured in April 2018 edition of, Take a Break! I can’t tell you how excited I was about it!
My amazing (or you may think mad) husband has decided to take on the Brighton Marathon, which takes place on 15th April. He’s not a runner, but decided take on 26 miles all to raise money for Psds – providing support for children with Down syndrome… – the charity I have mentioned many a time now, who support Jack and us as a family. Please take 5 mins to read, in his words, why he’s doing this and if you’re able to spare a bit of cash to help him get through the pain of running for a rather long time, then he and I will be so grateful xx
23rd February is a very significant day for us. Three whole years ago we had our frozen embryos put back in me – it was the start of a long and hard 9 months for us (well, me mostly), but finally, after 6 years of trying for a baby, 2 failed IVF attempts (which included a miscarriage), we got pregnant! And now we have twins – one of whom has Down Syndrome (an added benefit and challenge for us and our family and close friends) – who are 2 years old and bring us lots of joy, laughter and stress! What I really want to say though is, if you’re in that place I was a few years ago – desperately trying for a baby and feeling a total failure – I really hope you can take some hope from our story. And I hope, with all my heart, you get the outcome you want!
Anyone who knows me, knows that I am generally a glass half full kinda girl, all though I do have my moments! This year is whizzing past, I can’t believe we are already in February and so much has happened for us as a family already this year. We’ve had some ups and downs – as always.
First things first, I had a big WIN! I mentioned a while back how Jack wasn’t getting any support from NHS to help develop his speech and language – well… after me pushing and prodding and generally being a nuisance, we got an appointment for Jack to be assessed by the Speech and Language Therapy (SALT) team at Crawley hospital. On the 5th January, Jack and I headed over for the appointment. We were called into a small room and I sat down whilst Jack explored the room (checking for escape routes and working out what wasn’t;t nailed to the floor that he could then pick up chuck around – standard behaviour for Jack!). The lady assessing Jack explained that she needed to ask me lots of questions and then she would sit down and see where Jack is in his development, by playing with him. So, I duly answered all the questions – and I have to say, as all us parents do, I can’t help but try and defend Jack and why he isn’t talking or signing loads. I don’t know why I do it, as he is where he is, but I just feel I should do this, as his mother and protector! Anyway, she gave us some stuff to work on – mainly ensuring he can sign 5 words consistently (these are new words to add to the 6 he can already do). And she is going to go into Jack’s nursery to work with them on how they can support him while he is there – this is just brilliant in my eyes, as we do as much as we can and him having everyone who cares for him being consistent in how we are encouraging him then he will surely start to talk soon? Watch this space…
Following that high there was a bit of a low. We had to complete an early years form, this is so that Jack’s educational needs can be discussed and so that he is supported fully at pre-school and then going into school. It is called and EYPARM meeting and the form was one I wasn’t looking to complete, I know that I have to be honest and consider all Jack’s needs – but when we wrote it and putting this information down on paper really upset me as it highlighted where he is with his development and that really hit us hard. Donna, Jack’s key worker at pre-school, also had to write a report on Jack as input to EYPARM and reading that, although I completely agree with everything Donna wrote, it was very apparanet that Jack will need support and help throughout his life and that he is going to be behind in his development to his peers (I see it every day in how much more Jessica can say and do compared to him, and she is only a minute older than him – and doesn’t she know it, “my little brother, Jackie” as she calls him!). But it makes my heart ache that he will be behind and I worry that he won’t be accepted by his peers because of it. But, who knows, he surprises me on a regular basis with how well he is doing and hopefully that will continue!
We managed to have a long weekend away, celebrating Richard’s 40th birthday – old fart! ha ha ha! Our besties and us went off to Barcelona for 3 nights and it was so nice to eat tapas, drink cerveza and laugh, a lot! Of course we missed the small Grover’s but I do believe it does us the world of good to be just us for a few nights. Now we have our family holiday to look forward to.
Oh and then we had some more news, it is really minor to be honest, but I got all upset again (no good for my street cred all this crying…). Jack had an eye test earlier in the week and he has got to wear glasses. He’s longsighted and his glasses will have a strength of +6.00. I don’t know why this upset me, I suppose it is because his health has generally been good and he has no major issues, especially now he is older and can deal with colds much better now. And for him to now have to wear glasses it just really threw me, I just wasn’t expecting it. Richard & I do know that it will be for the better and if Jack can keep them on, then it we’re hopeful that it will help him with his fine motor skills when doing stuff with his hands. God only knows what he will be like with them – we went and tried some on over this weekend (see pics below – as you will see Jessica had to get in on the action!) and he was quite happy to keep them on then, but I think he was showing off to the optician (who was awesome and really helpful). But I have a feeling when they are on for longer than a few minutes he will be throwing them across the room or at me! We get them in 10 days – wish us luck!
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 🙂
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
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.
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…