Some reflective time

So the end of 2018 is here

The thought of looking back over the year brings mixed emotions.

At the beginning of the year Oliver couldn’t crawl, weight bear and definitely not pull himself up. We end the year with a speedy crawler that enjoys being on his feet (with plenty of assistance but he is determined to get there on his own)

He also didn’t really sign or communicate too much and often got frustrated because of this. His frustrations are still there but he’s now trying to say things and will sign several things to us. Sometimes this is a guessing game as he confuses signs and has made a fair few up himself. His speech is still delayed but coming along nicely. Everything he can’t say is woo woo. For those that don’t know our dog is called Roo. Woo is Olivers best friend, partner in crime and often the follower of Olivers mischief. She also doubles up as a hoover when he throws (much to our delight) his food

We’ve had so many conversations over the year about how well he’s doing. How he’s exceeded our expectations and the point we are at now we never expected to get here so quickly. That’s not even between Mike and I, that’s with health professionals, family and anyone else who’s directly involved with him.

This however doesn’t mean that it’s come easily. There’s been tears. Lots and lots of tears. Many times where we’ve both been fed up, Olivers been fed up and if it were possible to call it a day and press a restart button then we probably wouldn’t be far off doing it

As far as breaks and rest have gone this year Oliver probably doesn’t realise that time off work should be time to do fun things. A week off in May he had impetigo so we were housebound because it’s contagious. We tried to go away on our first family holiday and Oliver had other ideas and spent the first three days having seizure after seizure. Then Christmas holiday time….he gets chicken pox. So all in all on the resting front we’ve not really had much opportunity for that as the other allocated holidays in work went on appointments.

This in itself has taken its toll. In the new year we’ve agreed to start sharing out appointments. One thing I never write much about is appointments. I write positive posts about how well we’ve been doing. I did promise myself I’d write honestly and for the most part I do but I often skip writing a post when there’s no energy to even cook tea never mind put a piece of me into a blog. Over the year I’ve weaved at least full time additional working week into my four day working week. Early starts and late finishes. Working on my ‘day off’ That probably doesn’t sound like a lot to some people but trying to balance out being two different fronts in a day is exhausting. Working additional hours not to have extra time off but to go to an appointment and fight for your child isn’t the ideal.

Getting up as mum, dropping Oliver at nursery or with one of his grandads and then going to work. Being work me, taking work me’s head off and putting mum head on, going to an appointment and fighting for what he needs/what we want. Drop him back off, process an appointment and then fill everyone in on what’s gone on, answer questions. Get back into work me and finish the day off…come back and be mum again, then be a physio, do some more signs. Take him to bed. I’m not really too sure where I actually am in the story. All spare time is spent researching how I can help Oliver and then bathing and sleeping.

It. Is. Exhausting.

People often wonder why I don’t fill them in on every little thing that’s happened/going on. It’s because it’s exhausting. I appreciate everyone wants to know but mentally it’s not always the easiest thing to do. I’m not intentionally withholding information. I’m just waiting for when I’m in a place to pass information on comfortably. Sometimes I just don’t want to talk about it. We have on average 2 appointments a month, sometimes more sometimes less. They’re often like buses nothing for a while then three all at once. We already have four booked in for next year.

One of my New Years resolutions is to make more time for myself. For me to be me, that person I was before Oliver came along. It’s a thing a lot of mums struggle to do but I think that anyone that has a child with any additional needs, struggles with even more because of all the additional pressures of making sure you haven’t missed anything.

I’m looking forward to 2019, no new year new me here. Just another calendar year where I’m trying to find the right balance.

We are two!

We’ve been responsible for another human for two whole years!

What a learning curve it’s been and if I could go back to this day two years ago I’d tell myself not to worry, it will all be ok. There’s more tears than I ever could have even imagined that there would be but after each time I’ve been pushed to the point of being unable to control my emotions and let it all out, I’ve got right back up, brushed myself down and gone head first back at it all again. I would tell brand new mummy me that there’s far more strength hidden than you can imagine and to just keep at it.

In two years we’ve gone from expecting the absolute worst to being surprised almost daily. Olivers two year review is coming up and I can tell you that a large chunk of that list that’s expected of two year olds we won’t meet, and I’m ok with that.

I am ok with that

12 months ago I probably wouldn’t and I’d have had a breakdown and go completely introvert over it and not talk about it.

Types of things they’re going to expect:

❌Independent standing and even walking independently

✔️Responding to his name

✔️Talking

✔️Independence

❌Brick building

❌Kicking and/or throwing a ball

❌Put two words together for a short sentence

I can tell you what he can do!

Find fun in anything that’s not an actual child’s toy. His number one ‘toy’ at the moment is a smalls peg dryer. To those that are wondering what that is. You know that plastic contraption that you put socks and knickers on, on your washing line? THAT! It is a wonderful noise maker.

He can read a book to me, well maybe he can’t read it, but he can imitate reading by running his finger across the page over the words and make noises as though he’s story telling

He is emotionally aware. If I’m sad he’s sad, if I’m happy he’s happy. He understands emotions and processes them accordingly.

He mentally stores things and brings them back out later. Like watching you pretend to be asleep and then later do the same thing

He can, and will, wave at every single person that he sees and has an unbelievable way of just making people smile by being him

He understands every word that you say.

I could have a child that ticks every item on the list that the nhs says they ‘should’ be doing by age two…but chances are they wouldn’t have half the personality, half the imagination or determination that Oliver has. Life would be much easier and there’d be much less worry than we currently have but I wouldn’t want to trade that for the hilarity, surprises and pride that we have each day.

Life isn’t always easy but loving him definitely is 💙

Prader willi awareness month

So May was prader willi awareness month which I intended on hitting full force…and well this fell on its arse a little

But I’m ok with that

First the first time in months and months I’ve been able to lift my head and just get on with family life. We’ve had appointments and what not still but I’ve been able to just enjoy the three of us. It’s crazy to think that in the 19 months Oliver’s been around this is the first time this has actually happened but I’m in a good place!

So!

Positives that we can share that have happened. We can now pull ourselves up. It’s a completely unconventional way but that’s how we roll in our house! Why do everything the ‘normal’ way…that’s boring!

We now have the fastest commando crawler I’ve come across. Getting from the play room to the kitchen in the blink of an eye. We can finally sit ourselves up unaided (I genuinely never even realised this had happened until I started noticing him sat up everywhere and spied on him)

We are starting to sign and gesture way more. This is making life so much easier for us. I don’t know what we’d do without the signing (well I do, we’d have a much more agitated child)

My personal favourite- arms up and grabby hands because he wants to be picked up. However this has also caused some heart ache as he will also go to anyone, and I mean anyone. He will throw his arms up to be cuddled by people he’s never even met, we will have to keep on with the stranger danger chat 😉

He dishes out kisses now. Especially to cuddly toys and it’s so cute. He loves to cuddle and he knows when he wants to cuddle and there’s no escaping (another favourite of mine)

A shout out to those who embraced go orange on the 25th with very very short notice, I didn’t get sent photos from everyone, some where snapchats but it never fails to remind me how far from alone we are in everything that is going on. The improvisation from some people made me howl. Oliver doesn’t have just Mike, myself and Roo as cheerleaders…he has our family and friends right there with us! We wouldn’t be as on top of things as we are without you

See you next year awareness month! Next time there will be much more awareness spread

One Small Step for us, potentially one giant leap in research

What a day Saturday was! This was the first of many One Small Step events that we will no doubt be attending year after year. 

So for those that have missed Olivers JustGiving page and what we were up to this weekend we’ve walked a massive 12.5 miles to raise money for prader willi research UK 

As soon as we’d heard about the event we decided that we would sign up. Raising money, meeting families and going to four pubs while doing both it sounds like a perfect event for us and it was! One of the pws families own a chain of pubs in Stockport and had arranged a walk that took us from one end to the other. We started with breakfast in a pub FILLED with families. There were babies, some younger than Oliver, some older, brothers, sisters, nans, grandads, aunties, uncles…..I think you’re getting the picture. 

I wandered around to see if I recognised any faces and found Catherine and Wills group and said hello! Every time I see William he looks bigger and stronger and Catherine always looks prouder. Catherine introduced me to another PWS mum who told me that last year her 7 year old son completed the whole walk. This is her 7 year old son who has prader willi syndrome. The syndrome that is often defined with poor muscle tone and therefore the kids get tired very quickly.

Google would never tell you that a seven year old pws child could do this, the only way you learn these things is by integrating and going to things. Google would tell you that your future is bleak and that your child will be nothing but a worry. This little was also called William. Maybe it’s in the name? Maybe it’s the growth hormone? 

I can tell you exactly what it is, he’s a product of his environment. He has parents that will do anything and everything for him and so far every pws parent that I’ve come across will move heaven and earth to get what they need for the child and will put everything they can into making their child be the best they can be. This is by no means limited to special needs parents, this is what every real parent would do! It’s just there’s heaven, earth and just a few extra walls for special needs parents.

We ate our breakfast of porridge and bananas and got ourselves ready to set off along with about 300 other people. All of us in our blue OSS tshirts

We stayed back and left last, there were seven adults, five kids and two dogs so keeping to the back meant that we could all keep together and not worry about getting lost. 

At the back was a great spot. One of our new pws heroes, William, was at the back. He kept a steady pace and to say at times I felt a little over whelmed with how well he was doing is an understatement.m

The day took from 10am through to around 5.30pm 

12.5 miles

Mud and lots of it. 

Picturesque walk ways


Not easy emotionally or physically but we did it! Oliver has his medal and in true Olympic style gave it a bite for the obligatory paparazzi photo 


I’ve not hidden how not inTouch and uncomfortable I am with my feelings in my posts and this day had a lot of anxiety leading up to it.  For a long time I’ve kept my anxiety hidden and for those that know me really well, you know how stressed I can get over the strangest things. Spending a day with 300 other people who I don’t know and seeing families with older children and potentially looking into our future worried me. 

I worry a lot. 

I play it down a lot of the time. I worry about our future, I worry how I will be perceived if I’m not having a 100% happy day. I worry about how people will react to me saying about how scary the unknown is. Mainly because they say oh you shouldn’t worry you should take each day as it comes. That is FAR easier if you aren’t stood in my shoes. As an outsider it’s always been my favourite thing to say. I don’t really say it now, well I do, but I say it to other people so they can’t say it to me. I’ve found deflecting it and getting it in there first stops it being fired at me. I’ve also found just telling people positive things also helps conversation. Mainly because being a negative nancy doesn’t really get you anywhere and doesn’t make you a joy to be around. 

On Saturday I wasn’t a joy to be around. I found that walking on my own with my own thoughts was a bit easier. Sometimes I’m a bit odd and I’m a bit awkward. Mainly because I don’t really know what to do with myself when my brains whirring away and I get lost in my spiraling thought process. 

I’m lucky to have a huge support network around me. 

I’m lucky that I had a team of 10 people with me.

I’m lucky that over 300 other people care as much about this cause as we do

I’m lucky that these events exist to meet new families

Basically I’m lucky 

I’ve no idea what the total amount raised was just yet and if you’ve read my post and wonder what the sponsorship will be going towards, to put it bluntly it’s Olivers future. It’s to help families just like mine get to the bottom of how we can stop the hunger, the hunger that won’t ever go away, it’s to look into new way of treating and managing the symptoms for the children and the adults who have pws.

Without research we will never find the ‘cure’ that we’re looking for and finding a cure starts with hope…..and money. 

So if you could spare anything at all Oliver, Mike and I will be extremely grateful along with every other pws family in the world. They can’t all say thank you but from all of us and the support network around us thank you. The support means everything to us

Oliver’s JustGiving page
 



Our future is bright 

A few weeks ago Mike and I met with Catherine and Wills and I’m so grateful that she asked us to meet up. 

Since we’ve had Oliver I’ve not hid that I feel a bit alone and a bit anxious about his condition so when I got chatting with Catherine and she suggested meeting up I said yes straight away. 
It was only after saying yes I thought about how it may affect how I feel. I was excited about meeting Wills and seeing what we have ahead of us, I was also a little aprehensive. What if I didn’t like what I saw, what if I burst into irrational tears and can’t stop….what if, what if, what if. 

Wills was different to other two and a half year olds that I’ve met before. This wasn’t in a bad way by any means, he has a wonderful quiet and gentle little personality. He was intrigued by Oliver and wanted to show him all of his Mr.Tumble cards. I didn’t realise how many alter egos this character had….I’m sure that it won’t be long before I know them all and will eat, sleep and breathe them just as Catherine seems to be doing.

It was a huge relief to both Mike and I to see how well he’s getting along. He was much taller than we thought he’d be (seeing all of the usual stated facts you’d think anyone with pws doesn’t get past 5ft) he’s taller than my three year old nephew which was exciting for us to see. He’s cruising along chairs and tables so isn’t far off independent walking. He understood everything that was being said to him and he’s signing to show mum what he’s after. Another thing we’ve expected to need to learn and this has reinforced it. 

Just as we were about to say goodbye Catherine was a little teary and I think that it’s probably a flash back for her looking at Oliver, Mike and I and it was definitely a reminder of how far Wills had come along. 

One thing that we’re discovering (after google gave us the fright of our life when we first found out his diagnosis) is that the older pws children are our inspiration and the drive and hope that we need to get through the tough days. It’s not easy seeing other babies the same age and younger being so much more robust and sturdy in comparison but that’s made so much better by meeting families like Catherine and Wills and seeing that we will get there even if it is slower. I’ve heard this week that one of our older pws inspirations have got B and C gcse grades. I know people who haven’t had to face all these difficulties that never managed to get those grades. 

Life no longer looks so much of a worry. We’re optimistic and the sky is the limit for our little man. 

We left Ottos with a huge weight lifted off us, a weight that I wasn’t overly aware was sat there. We were on a complete high and spent the entire day chatting about them. I don’t know whether it was seeing our future and how it really isn’t as bad as we thought it would be or sitting and having a conversation with someone that’s gone through all of the same worries and stresses as we have, she had a complete understanding of how we feel and could give us answers to questions because of first hand experience. This is the first time since Oliver was born that I’ve sat with someone and talked and not felt worried about how my reaction  may effect them. I know if I’d got upset that it wouldn’t have mattered because she’d understand that feeling at that time because she’d been in that exact position before. 

We’ve also had our genetics appointment since meeting them, we were quite shocked that the genetics team couldn’t really offer us any information that we didn’t already really know. We’ve also learnt that health professionals can quite often bullshit their way through things. I do not mean you should never listen to health professionals but when someone tells you that they have a lot of experience with pws children/patients and then in the following sentence tells you that we won’t get growth hormone soon (as in before two years of age)  then she either didn’t have a lot of experience with this genetic condition or she doesnt know as much as she thinks. Even after informing her that we know he will get it she again denied it would happen and we pretty much had to agree to disagree.

We’ve gone from being under the impression it was deletion to her baffling us and asking for Mikes blood to check to see what the chances are of it happening again. For those unaware there are three different genetic causes for pws and only one (as far as we believed) would be something that could happen for future pregnancies. This isn’t the one that we believed Oliver has.

We’ve also been given guidance on our next pregnancy and the testing that we can have and being informed that we couldn’t get a medical termination if the results where positive. Now I don’t know what you think when you hear the term ‘medical termination’ but Mike quite rightly said that surely it’s a matter of ethics and it’s our decision? After some back and forth we then established that she actually meant that there would be no advice to terminate as it’s not a life limiting condition and we’d have to go through the ‘normal’ termination process – what ever this may be. We then explained that we would use the tests to prepare ourselves, to not go through what we have just been through. The agonising wait and testing that we went through when Oliver was born, waiting for test results for brain damage etc knowledge and preparation would have made the situation a little easier. Not painless – just less stressful

To sum up our genetics appointment it was more a waste of time than anything. I don’t feel that who we spoke to gave us anything that we actually needed and we feel that we were challenged then dismissed on things that we brought up. 

This was disappointing for us. We know that there are so many rare genetic conditions out there so we understand that they can’t know each one inside out – we just ask that people are honest about it. We’re ok when (as my gp did) we are told that they know the very very basics and we will have better knowledge of everything going on. 

We’ve now got to sit and wait for the blood results to see what the future may or may not bring.

We aren’t living that far ahead though, we’re just trying to enjoy each day as we have it.