Telling our family Harry has downs.

Sam and I have always had so much support when it comes to raising Harry. And we will always be beyond grateful for every single person.

Telling our families about Harry's diagnosis was hard. It wasn't something anyone had ever expected, with us being so young, and let's be honest, you don't ever think it will happen to you. 

I remember after the doctor had spoken to us about running the tests. I couldn't think. The first thing I did after getting back to my hospital room was calling my mum. 

My mum lived just over 100 miles away at the time. When we told her I was pregnant she had planned to come down for the last two weeks of my pregnancy, but I had put her off. You can't know for definite when you will go into labour and I didn't want her to get excited, book time off work and come down, for me to go 2 weeks over. So when we told her Harry was in NICU she again offered to come down and again I put her off, what could she do? She wasn't able to visit Harry for the first week or so and she would have just been sitting at mine for the whole time she was down, with me and Sam at the hospital. But at that moment, making that phone call, I just wanted her here. She didn't get to meet Harry until just after he turned a month old with having to book the time off work and everything and while she wasn't here I felt kind of alone. She had missed the majority of my pregnancy and didn't get to meet my little boy for a month.

She lived that far away until recently. The 1st of September she officially moved back here and its been fantastic. I know she feels like she has missed out on so much of Harry she's trying to make up for it. Sam and I are super lucky that my mum now has Harry one day a week and my sister has him another now so we can save so much money on our nursery bill. 

My mum was so amazing when we told her about the doctors thinking Harry had down's. Her first words were, 'So? Who cares' She has never seen why it would be a problem. And she has always been one of Harry's biggest cheerleaders.

Telling my dad was harder. We waited until we got our confirmed diagnosis before we worried him because we knew he would worry. 

I have to say, my dad really shocked me. We felt it was best to gather at my grandparents (this has always been a meeting place for my family. If we need a gathering place its always at Nan's!) with my grandparents and dad there. I remember sitting at my nan's dining table, with everyone surrounding Sam and I. I think they had all expected something about Harry being in NICU. I think my dad was convinced he was going to be there for months. And we just came out with it. 'Harry has Down's syndrome.' My dad and my nan cried. I think my mum did too, to be honest, but I wasn't there to see that. We explained that right then we were just focusing on getting him well enough to come home, and we didn't know what Down's syndrome meant for us.

I dread to think what happened when we left.

But my dad did something I never expected of him. My dad has always been a typical Cockney. An East Londoner through and through, but he was confused and concerned. Normally this would just frustrate him, but he got in contact with the local SEN school's headteacher (i think he was a friend of a friend) and he had a meeting, he learnt everything he could about downs. And then when we also got the Klinefelters syndrome diagnosis he did the same. He learnt everything he could. I don't think my dad will ever know how much I love him for that. My little boy is my dad's world, and he wouldn't have it any other way. Growing up I never imagined getting my dad to babysit my children, but now, seeing him with Harry, I couldn't imagine not asking him to look after Harry when I need a break. My dad has given up nights out, football games and events he has brought tickets for, to look after my little boy when I ask. He's always happy to give us lifts and is one of the two other people, that aren't me or Sam allowed to pick Harry up from the nursery. I think my dad is one our biggest supporters, and I know he would do absolutely anything for Harry.

I was never really involved with how Sam told his parents. I was in a state, with having had no sleep while going through my six days of pre-labour and everything going on with Harry. Sam pretty much took over telling everyone to be honest. He has always been my rock and I don't think I have ever needed him more then I did in those weeks Harry was in NICU.

Sam told his parents when they came to the hospital to visit Harry. He sat them down in the atrium while I was in with Harry, wishing I could touch him. We were never concerned about how Sam's parents would react. We knew they would look past all of that and see Harry for who he was.
We are incredibly lucky to have the support we do from Sam's parents. They have done more for us then we care to admit, and I don't think I will ever be able to thank them enough for it all, but most of all I will never be able to thank them enough for how they love Harry. I don't think I've ever told them how grateful I am to have them as my in-laws. 

Sam's mum has been one of our biggest help. Not only does she do EVERYTHING for Harry when we visit, but she was also there for us during my pregnancy whenever we needed some help. She became my support while my mum wasn't able to be here. I'll never forget the first day I was having contractions. Sam called his mum, just to update and they travelled back from their caravan that very night so his she could sit with us at the hospital if we needed anything.

Sam's mum is also a great help thanks to her experience with children with special needs. Sam's mum used to work for the Visual Impairment service and has lots of experience with children with special needs. Although she hasn't done it for a fair few years she is still our first port of call if we are concerned with anything to do with Harry. She may get sick of the many questions but she never lets on. She is always there if we need her. 

Sam's dad is one of Harry's favourite people and we know that he loves Harry just as much as Harry loves him. He lights up whenever he sees our little boy and it's amazing to see them together. I know he will teach Harry to be just as cheeky as Sam is and to tell some brilliantly terrible jokes but I honestly wouldn't have it any other way!

I will always be thankful for our family and how they are with our beautiful little boy. I feel good knowing he has all of these people to support him through everything life is going to throw at him. I know his life may be hard at times, but I also know with the family he's got he will get through anything.

Why I blog...

This blog post is not something I would usually write, and honestly, I must have started this post a million and one times since starting this blog.

Today I want to talk about why I started this blog and my future goals with it.

When I was pregnant, Sam and I had discussed social media and the internet and how much we want Harry on things like Facebook. We weighed up the pro's like having my mum, brother and sister and all of our extended family we don't see often, be able to keep up with his goings on, but ultimately we had originally decided we didn't want pictures of Harry on the internet. 

Then we got Harry's diagnosis.

With getting the diagnosis of Down Syndrome and Klinefelter's Syndrome, and learning how rare it is for a boy to have both, we found that there was little information out there to help and reassure us, and we got thinking. What if we had gotten a prenatal diagnosis? All we would have had to go one was the information the doctors would give us, which let's be honest, is not the most reassuring. Would we have made the decision to end the pregnancy? Would we still have our amazing little boy? I would like to think we would have still gone ahead, but can we ever really be sure? And what happens now, when someone learns their child is 1 in 4.5 million and has both syndromes? How can we help that family?

And so Raising Harry was born.

I have always wanted to write, it has always been my dream, and so starting a blog seemed like the most natural thing in the world. It wasn't a type of writing I had ever tried before, but slowly I've been getting used to it. 

Writing has also had a massively positive effect on my mental health. I drove into this blog July 2017 when my depression had reached an all-time low and I couldn't work and barely even left the house, and slowly, blog post by blog post I was starting to feel like myself again. I've still got a long way to go with my mental health, but I'm getting there and this blog really does help.

As for the future with the blog, I'm not really sure what I want. Six months ago I would have told you I want to turn it into my full-time job, which I would still love, but I also love my job right now so I'm not too fussy if that didn't happen anytime soon. It would be nice to have some brands sponsor a few posts and I'm working really hard to get noticed (So PLEASE share the blog if you like reading! It doesn't seem like much but it honestly helps, and I'm eternally grateful of every person who shares!)

But the ultimate goal for this has been to help people, if we can reassure just one other family who gets a diagnosis of Down Syndrome or Klinefelter's Syndrome or even both, I will be happy with that. 

Questions we get asked about having a child with special needs

Happy October!!

Did you know October is Down Syndrome awareness month?

For my first post in October, I wanted to answer some questions Sam and I get asked a lot since we had Harry and got his diagnosis.

1. The first question we always get asked is, did you know when you were pregnant?

No, we made the choice while I was pregnant that we didn't want to know. It was a really personal choice for us but we researched the process of the testing and decided that if the results of the first test came back high risk we weren't comfortable with getting other tests, with the risk that comes with them, and so refused all testing. If the NIPT had been widely available when I was pregnant we would have chosen that because it comes with 0% chance of miscarriage.

2. How is having a child with Downs different to having a 'normal' child?

The real answer to this question is, honestly, how would we know? We only have Harry but we have always strived to treat him the same as we would have treated him if he had not had downs syndrome. Obviously, this hasn't always been possible, but we want Harry to grow up feeling like an equal to any brothers, sisters or cousins that may come along in the future.

3. Oh, aren't kids with Down Syndrome always happy and cuddly?

Have you seen Harry when we turn Paw Patrol off? Or tell him no? He has just as many tantrums as any other 2 year old! Sometimes I think he's worse. Don't get me wrong he will smile at every person in the street who gives him a little attention and he is such a flirt! But he certainly can strop and tantrum like the best of them!


4. So does he talk yet?

Yes and no, Harry can say words but at the moment he prefers to use his signs. He communicates perfectly with everyone who knows Makaton and we can carry a simple conversation with him, but he uses his words when needed. And since he moved to the toddler room at nursery he babbles constantly! Can't shut him up lately!

5. And finally, the most common question Sam and I get asked. Will you have more kids?

The answer to that question of course is Why wouldn't we? Our plan has always been to have two children, and of course Harry has different needs to other children and we have a slightly higher chance of having another child with special needs but our family doesn't quite feel complete without a little brother or sister for our monkey. I know, seeing him with his little cousin and any other babies he sees, Harry is going to be the very best big brother ever!

So that completes the first of my posts for World Down Syndrome Month 2018!! Happy October!!





Have You Read...?

Where It All Started

Birth Story

Harry's birth story seemed like a fitting first post on here. Bear with me because it was written months ago. More posts to follow ever...