What day is it? I am sorry if you are reading this and you are one of the many friends I’ve forgotten to reply to. It has been like groundhog day here, Ariella is now attending nursery school every weekday but only for limited hours. The adjustment for her has been a challenge, the adjustment for me even more so.
It’s been a struggle losing my 1:1 time with Sebastian, having two days a week in which I can spend catching up with all the chores. From simply keeping on top of the pharmacy trips, multiple medicines all organised at different refresh times, to making sure we have food to eat, clothes to wear, feeding the cats, keeping the house generally just moving forward. When you have what equates to a nap time free each day suddenly it feels like you are on the clock, I have certainly dropped a bunch of things and I am so thankful that we have some outside help to keep everything “clean”.
Scattered along the month are weeks where there are hospital visits, this week scheduled an MRI and a Gastro appointment. The MRI went really well, so much less dramatic than last time – which you can read about here. This time a little bit of gas and she was fast asleep, no worrying about cannulation or MRI machines, no fire alarms going off above her, no vomiting, just sleep and actually peace. Of course it’s always a worry when your child is to undergo general anaesthesia but I enjoyed a really nice cup of coffee and we were happy she was in very safe hands.
When she eventually came around she was sleepy but happy, in fact the most distress she felt was from forgoing her breakfast and the nurses observations afterwards. With each check her heart rate would spike until the nurse soon realised she needed to leave the room to get a normal reading. Seeing her little heart rate spike really made me appreciate how anxious hospitals make Ariella and that I should try and remember this whenever she is having a meltdown.
I have of course applied to have her results sent to me ASAP, I’m not one to wait for the next consultant appointment. Looking forward to getting those through, I would hate to attend the appointment and have it sprung on me should there be any significant changes. Fingers crossed that the results come back positive!
Really glad it is the weekend, time to relax a little and prepare for October which will bring more blood tests, a hearing test, a vision test, a new weekly speech and language group and of course Halloween! It’s also going to be time to start visiting specialist schools, which is quite a daunting prospect but I am looking forward to seeing how they can best support Ariella.
Last month I drafted a very long post about social media and connection, I was about to publish it and then I came across an article online which completely changed my outlook. It was about humanity and the blame culture, I realised complaining about humanity and the way we rely so heavily on social media was counter productive.
Rather than complain and point fingers at faults, how could I work to improve my own use of social media? It’s our responsibility to model the things we want to see and value in society, kindness, compassion and meaningful interaction. I think lately this ties in well with the current issues we are experiencing globally and the social awareness towards our environmental impact. For one currently in the eye of the media is the plastic in the sea, the strange weather we’ve been experiencing – both of these things have raised important questions about bringing home the important of our own impact on our future.
Starting again using a more positive framework, I’ve recently taken a break from my own personal social media accounts. It’s so easy to use up the idle time between tasks with a quick swipe of Facebook and scroll down the feed. I wanted to be present more mentally and I’d like to maintain more of my friendships outside of this viewfinder kind of window box world.
I have found being more “offline” has meant I am much more productive, much more aware, much less attached to my phone although I do still use it for Instagram which I love. I find little snapshots and images are far quicker to process and disconnect from. Right now I’m using my time to keep on top of all the tasks required to organise two children, one with many medical needs, two cats, a household. I’m finding far more time for myself, I now attend the gym which I have always thought about doing but never wanted to invest time into during the evenings. I’ve lost 20lbs in weight (comparing my pre pregnancy weight) and am the slimmest and the most physically fit that I have ever been in my life thus far. My original motivation was to get stronger as my wrists and arms were beginning to ache every day carrying Ariella, fortunately I have done this but she also has started to become stronger herself and needing me slightly less so now I am beginning to lose my tolerance for carrying her at all.
I’m not sure it was constructive for me to always be so visually aware of the things that children the same age as Ariella are doing. It’s much easier to just live in the now and work with her timeline than to see what she “would” of been doing had things been different. So far it’s going really well for me, my friends have mostly adapted to letting me know when they want to chat and use more direct means. It does mean that occasionally I miss announcements but much like sending a letter in the post compared to email, most of the time it still arrives.
We’ve been making some positive changes generally to our lifestyle, Sebastian is now using Eco nappies which is really just one tiny change but it makes me feel a little better. I can’t quite get my mind around going full cloth after comments about having a poo spatula from others but we are trying the Eco Naty disposables that are biodegradable. So far I really like them, they aren’t as absorbent as say Pampers which we use over night, so need changing about as often as cloth would but it’s a good positive start on removing something that really does not degrade – nappies and we use a lot of them!
What have we been up to?
If you’ve been keeping tabs on my instagram you will have seen that we all entered the 100,000 genome project last month – linked in case you would like to read more about the project. It’s the very best chance we have to find a diagnosis for Ariella, I am so pleased we are finally in the system and although it will be many years (around 1 – 2 at least) there was the possibility we could well have missed the deadline as it is now closed. Last May 2017 the discussion of the project being the next step was raised, but we didn’t hear anything back and after chasing we have just met the deadline, I can’t tell you how horrified I would have been if we had not been able to enter. It’s a very important project in which the whole genome is considered against the medical record data, a position in which the NHS is well suited to accommodate in England. Hopefully in future years the data gained will benefit in more ways that I can imagine, certainly if it can help stop future families living a lifetime of uncertainty about their child’s health that will in itself be more than enough.
We also saw Neurology at the same time when visiting St Georges Hospital, Ariella will be having another MRI at the end of the month this time under general anaesthetic. Probably for the best given the last MRI she woke up during it.
Sebastian is doing well, progressing well, sleeping well, smiling – he is a very happy chap with his two teeth. Every day is interesting and every day I’m reminded of how different my experience is this time around. He is almost crawling now, luckily everything is baby proofed still. We still have our stair gates in place as Ariella has just started to crawl downstairs. I am looking forward to getting more one to one time with Sebastian once Ariella starts preschool next week Ariella has now finished nursery but previously nursery days were often unwillingly Ariella admin days.
I have had a whole week with the two children, it has reminded me that actually once you get into a rhythm is isn’t all that bad. To keep busy and feel somewhat in control I planned the weeks events out in my new paper diary, this worked really well and I was able to prepare Ariella every day better. I don’t know why I didn’t do this before, it’s much easier and you can actually make good use of your time. So often I would just waste time or not be efficient with being “outside” and doing the outdoor tasks all together. When you have so many steps to come up and down with two children attached to you, you begin to appreciate reducing those trips up and down. I was fortunate that this past week Ariella’s seizures have calmed down slightly so she has been happier in herself.
This week we tried to make use of some of the memberships we have with the National Trust and RHS, we visited the local Arboretum which both children seemed to enjoy. We took many trips to various local parks to feed the ducks, use the swings and go for walks. We stopped by our local garden centre for ice cream and to use their garden piano which Ariella is so fond of and finally ending with a trip South to the beach, soft play and swimming. Ariella sleeps better when she’s had some good daily physical exertion now, if we stay indoors the whole day then bedtime can be a little prolonged.
September means new beginnings for all of us, preschool every day (eventually) will be quite an adjustment. It will feel I’m sure much like the school run, I hope we adjust to it okay. I hope that Ariella adjusts to her new “nursery” okay too, she will get lots of support so I’m sure that will make it easier for her. Right now she is often going through weeks of phases where she is quite confused, repeating phrases, screaming and generally seeming quite distressed. It feels like there is a lot going on neurologically, I hope that we get some answers soon so that she can carry on moving forward more and we all have a calmer environment. The change in state seems to go hand in hand with seizure activity, absences, tremors, a new kind of seizure too where her body muscles jerk oddly for a few seconds then stop.
Medication is going up but once the seizure activity passes we have a few weeks of calm (with the normal challenges) again.
I often feel like I can’t quite keep up with the updates of what is going on, each week is different. I try and write about what we are up to and then the goal posts will change!
I don’t even know how to articulate the true mental voyage I went on yesterday. The day started well with a trip to the gym, making use of the creche facilities – but from start to end it’s felt like someone is puppeteering from above, trying desperately to steer me into a state of emergency.
Let me rewind back and explain how my last nursery toddler free day ended in being more about the toddler than the baby. Monday I received a text message to tell me Ariella’s prescriptions were in, perfect I thought – I’ll go get those Thursday on a nursery day. Taking Ariella into a shop like that in which you usually have to wait a small or potentially large amount of time is not an activity I’d choose to do ever – unless I have no choice.
Thursday comes and I visit the pharmacy, no epilepsy medicine just all the others. We have enough to last the day and Friday but not the weekend. The pharmacist assures me that it’s no problem, they aren’t sure why it wasn’t repeated but they would put it through as urgent and it should be ready Friday morning, at the latest Friday afternoon. It’s a little less time than I’d hope for, granted but I had no reason to think it wouldn’t be completely fine.
That evening Ariella does something really odd while sat in her highchair, an odd jerk and muscle twitch – we have no idea what happened but we do know it wasn’t right and are waiting for more information on this. There has been a lot of screaming, lots of hand tremors lately so we’ve had a heads up that something isn’t quite right, while concerned we move on – with plans to query this later.
Friday arrives, I go to the gym and just as I’m getting in the car to head home my phone rings. Nursery, well what is this going to be? I think pretty much every parent assumes the Calpol call, am I right? I never assume that anymore because I’m child is way past the Calpol call. Absent seizures, lots of absences reported throughout the day – I get a call later to say some odd things were occurring while she slept. Eight members of staff are surrounding her watching and waiting to see if she’s going to have a seizure. I know why because it’s terrifying alone, being alone and responsible for administering rescue medication is not to be taken lightly.
I get home and call the pharmacy to check the medication is in, my second task of the day. It hasn’t arrived yet but is probably going to be here by lunch time I’m told – call back later and if not the pharmacy will chase. Feeling a little unsure about waiting and relying on someone else to action the task I drive to the doctors surgery to speak with the receptionist, the very lovely lady informs me that the epilepsy medication has fallen off the list – somehow. Explained why the repeat didn’t go through, explained why the following urgent repeat didn’t go through too.
I called the doctors last week to check that it had processed through as the medication is often changing, increasing in dose and up until that point being distributed every two weeks. How did it go from all there and correctly change to every month, to not being there at all.
The receptionist takes all the details down and goes off to find a doctor to sign for a new prescription so it can be sent to my pharmacy. All being done urgently, I leave pretty reassured that I will get a phone call, the lady was nice and I could tell she understood the implications of going cold turkey from that medication. Lots of seizures. This lady followed through with her actions, thank you receptionist lady.
I do get the call, it’s ready at the pharmacy for me to go and request, for them to fill it and I would soon enough be heading my way down with my todo list ticked off. Reassured I head into the pharmacy, they look and say “It’s not in stock, but we can order it for tomorrow (Saturday)?”.
My brain just stops for a moment, the very same lady that I spoke to Thursday and had a conversation about the medication being required for Friday. The same lady who promised to chase the GP for me but never did knowing it needed to be filled the same day. The very same one is staring at me telling me there is no stock in…Today.
I explained again it needs to be administered at 6am Saturday morning and we run out this evening. They begin calling all the local pharmacies asking if anyone has any stock, three calls later – no stock. Finally one pharmacy does and the prescription is released, two boxes kept back and we can pick it up whenever. Relief again. Sorted, but not ticked off the list just yet.
Jamie heads out while I feed the children their dinner and reaches the new in stock pharmacy only to be told he needs a Docket. What the heck is a Docket? I get a call from him saying that the pharmacy won’t give him the prescription without a docket. I explain that it’s completely electronic, the original pharmacy was sent it electronically, we have no paper documentation after he tells me this docket is a piece of paper.
It’s now been several hours since my very last nursery day started and I was still without my child’s pills that she needed. I phone the new pharmacy and speak to them directly, after a really quick download from me in the most polite manner I could manage they ask for Ariella’s NHS number and it’s all rectified in seconds. Medicine in hand, job done, tick. Manic laughing and a glass of wine. What could possible go wrong next?
Oh that’s right, then there is also the seizure activity. Fingers crossed for a quiet weekend!
Out for a picnic and a trip to the park, we needed some lunch and I knew Ariella would find shopping difficult. I try to only go on nursery days but sometimes life doesn’t quite work out that way, we whipped around picking items off the shelf quickly, no time to browse – not quite as easy now that neither of us can eat gluten. Quickly tossing some strawberries into her hands, “Here Ariella, you hold this and we will take it to the till”. Task initiated.
Then begins the repetitive requests from Ariella…
“Ariella, door, door, till, door, door, DOOR, scream, DOOR, scream, -insert random phrase that she likes to repeat when overwhelmed- “.
My reassurances trying to calm her failing I quickly gave the coveted strawberries to the lady on the till and back again to Ariella. Onto the next stop on the train tracks in her mind.
I pay, swiftly roll my double pram out the doors parking up outside and wrestle all the food into the pram. Sebastians sat quietly chewing on his fist, smiling up like business as usual. Yes business as usual, just as I’m about to sigh with relief that the shopping is over with a hunched middle aged man walks slowly out of the shop and says…
“She’s a delight”
But not in a good way, in that sarcastic voice that people reserve to cause offence. I turn around, wondering if I heard correctly? “Pardon?” looking him in the eye. He repeats again “I said, she’s a delight isn’t she!”.
I don’t reply, quite shocked – my first proper complaint against her lack of ability to comply. His wife says “come on, lets go” and off they wonder together, slowly. We head off to the park where Ariella has a fantastic day in the park out in the sun and for the first time she plays away from me with distance while I play with Sebastian sat on a park bench.
I have so much empathy for parents of children who scream, whether that be a rare one off occasional or a daily, hourly, minute by minute event. It’s really frustrating to hear, it’s shocking, it’s abrupt, it sets you on edge.
Never take for granted the freedom of watching what you like on television without your child screaming between each and every transition, being able to drive your car in whatever direction you like to whichever destination you like, spontaneously visiting a shop to buy something, browsing – oh you lucky devils, buying a coffee, stopping to speak to anyone in the street, speaking to your neighbours outside, playing with toys that make sounds, singing to yourself, going to a music festival, waiting for anything at all! I know when you are out and about, going about your day the last thing you want to hear and witness is a child having a meltdown, I say meltdown because I don’t believe the majority of children with additional needs are having constant tantrums. I know certainly there are a lot of sensory concerns playing their part and a absolutely -need- for the child to respond with a scream, sometimes Ariella will try very hard to hold the scream in.
I don’t want to be screamed at all day, I know it doesn’t sound nice but we can’t stop our children from doing it because they either feel they need to or because understanding and developing takes longer and requires more repetition which comes from more exposure and experience than a neuro typical child. As a society we need to learn tolerance and we need to learn to be more patient, with everyone!
I’ve noticed that as Ariella grows older the tolerance from society appears to becoming weaker, when she walks around she often stumbles sideways and will correct herself or she walks into people. I see less smiles now and more frowns, which is such a shame but we do not like being restricted in speed and pace how often do we want to pass or hurry up a learner driving a car? Easily forgetting that we once sat where they do, learning to drive and that everyone must start somewhere. Never forget that you take your own independence and ability for granted, a simple change in circumstances could shift your world.
For the first time this week a member of the public reported our use of a disabled bay – quite wrongly too not that it matters as we do indeed have a blue badge. I had noticed a lady staring over and wondered if she was going to speak up but she decided to take her complaint to the reception of a local gym I was attending. I’m sure if the new changes to the blue badge scheme do come in, then this will happen a lot more for those with hidden disabilities, society assumes disability based on appearances. Yet if you look closely you can see the differences in gait, only because Ariella is a child the lady probably just made assumptions. I kindly told the security staff that the bay was being used correctly, there were no problems. But it left a sour taste that one lady could look and complain based on assumptions, I hope she was told that she had made an error and can learn from her experience.
So what can you do to help?
If you see a child screaming or struggling and you need to interact always consider that the child might have additional needs. If you’d like to help in a positive way remember to:
Use clear simplified language;
Explain what you are about to do, using Makaton (sign, symbols and speech) or first, and next structured instructions;
Give the child extra time to respond to you;
Appreciate that the child may have sensory processing difficulties and may need to find somewhere to calm down; and
Remember that even neuro typical children struggle with their emotions and adjust your expectations.
“Do the best you can until you know better. Then when you know better, do better.”
I wanted to talk about our little bright light Sebastian, he has spent the last six months being slightly under shadowed to his sister. With his first trip being to register his birth and his second back to hospital for his sister, in the months since frequenting the hospital as a main event. Despite this he is the most happy, wonderful little guy ever; he genuinely is a joy to be around and parent. He is the very easiest companion, fitting that he spends so much time in my sling so my hands can be free for his sister. This month he learnt to sit independently, cut his first tooth, say what I think sounds like “Mama” and started to wean his first foods. It’s been absolutely wonderful watching both children together, I remember being quite worried about expanding into a family of four and in the early weeks trying to imagine where he would fit in. Now I cannot imagine him not being part of our family and his sister has really flourished around him.
After realising that he doesn’t feature as much as I’d like on the blog, I wanted to share his last six months here with you in mostly photo’s that I love. Marking that behind the scenes there is a little guy that has been chugging away, developing and growing into a little person too.
June 2018 – Five Months
This photo isn’t the best photo I have but I love it, in June Sebastian was being rather social! We had lots of smiles, lots of laughter and practice at sitting although still very wobbly. Sebastian rolled for the first time too.
June’s hospital stay
May 2018 – Four Months
May hospital stay
April 2018 – Three Months
April 2018 – Three Months
April 2018 – Three Months
March 2018 – Two months
March 2018 – Two months
March 2018 – Two months
February 2018 – One Month
February 2018 – One Month
February 2018 – One Month
January 2018 – Zero Months
January 2018 – Zero Months
January 2018 – Zero Months
January 2018 – Zero Days Old, his own hospital stay
Long before birth, while Ariella was still kicking away inside a little bump and I was ignorant of what awaited me; I prepared myself for what I thought that narrative would be with research. Books on parenting, blog posts, second-hand experience from other mothers who had babies that frankly seemed quite foreign to me.
Once she was here I thought I’d read emails on development, read about weaning and potty training, behaviour and beyond the terrible twos. But instead I was invested in medical journals, specialist groups, therapy books – I unregistered from the developmental emails and let go of any vision I had of the future to accept what appears in front of me. Children do not come with a manual but when things get rough or you hit a difficult spot usually you can find somewhere to reflect on the “phase” of life that you and your child are going through. Whether that be a blog, a social media group, a collection of friends with shared timelines like NCT – there is always somewhere you can go to ask for help. Is this normal? Did your child do this? Why is mine doing it? Will this stage end? How do I navigate around this? One way or another these people be it online or face to face become your tribe. Your backup for reflection when faced with challenge, these things do not correlate with a child who has no diagnosis.
We have specialist areas of tribes, we have epilepsy, we have the coeliac crowd, we even have global developmental delay. We have social media groups of children born the same month, we have the families and children we met on the way but the questions never quite line up because overall things are not the same because the overall picture is different. It doesn’t mean you don’t continue to try to bring advice and concepts in but they don’t always quite fit, for example I really admire the gentle parenting approach. I feel like had things been different this approach would be much more successful and harmonious, simple the general principles being respecting your child – not forcing their hand and giving them choice. Trying to be empathetic with your child, listening and modelling empathetic behaviours to encourage them to achieve them later in life. Giving choice and respecting the child’s opinions, giving them attention and accepting their limitations.
Now trying to apply this to the day-to-day for Ariella, every week we have appointments and today was no exception. Ariella dislikes certain textures, cold wet jelly on the skin certainly being one of them but today she had an echocardiogram. I explained in advance what would happen, that there might be sticky pads and there would definitely be cold jelly on her chest. That the doctors would be looking at her heart and we would be going to the hospital. But when it came to the procedure how do you approach that gently? I try as much as possible to offer choice but for her best interests she needed the procedure done, she did not want to be there and was restrained while screaming and crying. How do you approach this gently? Who do you ask, where is the tribe?
With Sebastian getting older deciding on an approach that will work across both, be fair and consistent is going to be a challenge. Already I am able to ask for him, is this normal? And I’m able to look at a variety of resources to know it is. Already I feel more confident in my choices with him, but as he grows and learns their will be more complexity and working out a method that fits both children may require understanding on his part. Although there is a lot of calm there is also a lot of strongly felt emotions as Ariella works her way through toddlerhood and that can manifest itself in aggression, screaming, meltdowns and repetitive phrases. The household rhythm is chaotic and unpredictable, I try to apply good routine but how can you do so when the next seizure can clear your weekly schedule and mean another extended stay in hospital? It is really mentally exhausting.
I should clarify that when I talk about the tribe I don’t mean friends of which we have many very supportive friends instead it’s about having a group of people going through the same situation as you at that moment in time. Being able to relate, support and empathise, with each other and solidarity – it’s why we sign up to due date groups, pay for NCT friends, go to mother and baby classes. There is an element of safety in numbers, entering always the unknown together it doesn’t seem quite as difficult to navigate when you always have tribes people.
I think when you are put in a position of uniqueness, you can only really put your sail up and go your own way. Sometimes your child’s health and mental wellbeing dictate their way, weaning for example requires mobility and all the developmental and structural normality to swallow. We were fortunate that we could try baby led weaning, Ariella had the mobility to do so – but what if she had not? Well then we would have sacked off my vision of how I wanted to wean her and accepted spoon-feeding puree, a completely acceptable weaning method but not the choice I had made for my child. This one tiny element would have excluded us from participating in baby led weaning but what happens when your child’s development is completely out of line from their chronological age? What if they have a medical condition that lands them living in hospital for months? I think you do the best you can to parenting how you choose to. I think that you just have to accept solidarity and find comfort in the pieces of guidance that you can apply, ignore any self-doubt and know that you are doing the very best for your child.
It is a challenge, when you consider well covered areas in terms of available guidance material like potty training. Yet potty training requires developmentally a child to be in the right place, to understand what is being asked of them (or for you to understand their cues) and those things are not always in line together with children whom are delayed in development. One area might be delayed while the other is not, suddenly all the guides and books don’t apply to your child and both of you may be frustrated. How do you overcome this? With Ariella I try my best to go at her pace and adapt whatever activity for her, we tried potty training back when Ariella was chronologically 2.5 years old yet she wasn’t mentally ready for it. Now she is mentally 2/2.5 we will try again soon, but she may still not be mobile enough for it (she cannot squat or pull to standing from the potty yet). Recognising these limitations and adjusting my expectations has really helped me to appreciate that while part of our “tribe”, that’s to say the group of parents with children born the same month as Ariella are mostly potty trained and discussing other more developed issues I am not at all surprised that we are not there yet. I no longer expect to be there and instead I look at Ariella as her unique self and consider what her needs are rather than what society expects her to be doing. This is particularly relevant during the run up to attending preschool after Summer in which there will be no hiding from the current, Ariella at the moment has not moved onto the next room at her nursery so is with children who are around her developmental age.
It’s nice in many ways to be removed from the pressure and competition between parents and their various parenting styles, I really have not had to deal with this and it’s lovely to be removed from it. In many ways I am very glad to have had the experience I have, it’s really taught me that we are unique as individuals and actually perhaps our educational system and the early years can be far too rigid. Ariella is a wonderful creative, happy, non compliant little girl and I expect absolutely nothing from her other than for her to be happy. I couldn’t possibly tell you what she should be doing at 3 and a bit years old and it’s wonderful.
How do you celebrate the fact that you’ve existed for thirty laps around the Sun? Take all your friends to a remote location in Wales with their children seemed like the appropriate answer. Best to lure them with the smell of Champagne as a thank you arrival drink for making it off the beaten track late on a Friday evening post work. It’s lovely being a parent, most of the time but it’s even better when you can enjoy parenting while still celebrating with friends. That was what I was attempting to achieve and I think mostly it worked out well.
The majority of my friends now have their own children and when deciding on a plan for my 30th birthday celebrations I wanted to incorporate family as much as possible. Child friendly but still fun and luxurious was the vibe I was going for and I hope I hit the mark with it. In a surprise turn out both my children were well and healthy as we set off on our way to Wales, stopping over at my parents house to break up the journey. Stored in the back somewhere was my tower of Champagne glasses, a bag full of frozen canapés, two bags full of stuff for two children with our things crammed wherever they will fit, a double pram. This was pretty light packing, Sebastian was thankfully using his carrycot still and would be sleeping in that – I’ll be writing about the Bugaboo Donkey2 shortly it’s really impressed me. Ariella was going to be transitioning into a single bed with blow up Hippychick Dream Tubes, although she did fall out of bed once they worked very well for her and didn’t take up much space at all in the car.
The house we had rented for the weekend was screaming Hygge inside and out, from its several log burners, candle lit lanterns, books scattered around to its outside pizza oven, star-gazing wooden hot tub and it’s tree swings. On arriving I quickly assigned rooms before everyone else arrived and set to getting the buffet table sorted. Once both children were fed and asleep I could really appreciate the beauty of rural Wales up in the Brecon Beacons, the only sound to be heard was of sheep just outside. I really recommend visiting if you haven’t before, it’s absolutely wonderful. We were very lucky with the weather, the entire duration of the long weekend the Sun was shining on us and the clouds very clear which made for excellent star-gazing at night.
Half of the group the next day went gliding, which I’m told was fabulous and the other half turned part of the old cottage into a spa with our own personalised therapist. The weekend was full of good food, nice drinks and lovely cocktails – topped off by a private chef cooking a three course dinner the final evening.
I want to talk about a change in mentality since turning thirty. Three weeks have passed since my birthday weekend and I’ve pondered on many things, how could I have used up thirty years already for one. But also reflecting on where I am now, parenting and the everyday stresses that surround it alongside the additional stresses of the last few months, of coeliac disease, global developmental delay and epilepsy. The screaming has returned a little the last couple of weeks and on top of this Ariella is going through the typical twos, she wants to be doing one thing but time demands we do another. The social communication delay makes it at times difficult for both of us to understand each other. It occurred to me last week while becoming frustrated with the constant screaming (we have building work going on at the moment which means lots of noises) that I’m fortunate to not have somewhere crucial to be on a day-to-day basis yet; I’m always trying to rush Ariella along, getting ready to go out the house, getting down the garden steps to the car, in the car, to the final destination once we’ve driven. I was sat in the nursery car park watching all the parents in the morning drop off their children, rushing to get to work when it dawned on me that I don’t need to rush and what would actually happen if we just slowed down to Ariella’s pace.
There are few things that are critical, hospital appointments yet but everything else is just a nicety. If Ariella doesn’t mobilise herself because she’s focusing on something else, or stops in the middle of the path to look at a stick then it’s less stressful for all of us if I just let her get on with it. She is lucky that we can do that, why not take advantage of it. When you are being screamed at daily, for long durations is easy to lose sight of the light at the end of the tunnel but the bigger picture is there. We have two beautiful children, a wonderful home, two fluffy cats (even if one of them does like to have a wee on a tea towel) and time. We have all the time in the world, I appreciated the time my own mother gave to me as a child, forgoing work to stay at home. A true luxury these days to be able to do so, to be able to take Ariella to all her therapy sessions, her hospital appointments and ultimately watch her and her brother grow.
I also have decided that from now on I am going to invest into others what is invested in me, embrace shorter hair and try to appreciate every single day without worrying about what is around the corner.
I think most people when they think of Epilepsy visualise a physical jerking “fit” like in films however what I’ve come to realise the last few months is just how subtle epilepsy can be. It isn’t just the large tonic clonic seizures where they shake and convulse but also absences which can look merely like a day dream or quick jerks while sleeping.Uncontrolled epilepsy has been much more unsettling that I realised it would be, we used to take for granted that once putting Ariella to bed she would be safe and well mostly.
Twice now I’ve come to collect Ariella on a nursery day only to have a blank stare back at me. It’s baffling to see your own child who should know your face stare at you like you are a stranger, it makes you wonder what has happened and whether it’s temporary. The first time it happened was April the 26th, I walked into her nursery room and she didn’t notice me, this in itself rather unusual as previously she would want to go home as soon as she saw me. Her sort of keyworker (someone who covers her main key worker when she’s not in) said “let’s find mummy!” she replied, “Mummy!”. I’m told she looked in my direction but I’m not sure she did.
She walked over to a table without looking at me and started playing with toys in the room. How unusual I thought, I bent down and said “Ariella, it’s time to go home”. She looked straight at me and there was no sign that she knew my face, no smile, a quick glance then her usual hiding -not looking at you- tactics.
I immediately felt something was wrong, what had happened to her? The staff noticed how strange the interaction was too, so the nursery staff encouraged Ariella by saying “who is it Ariella?”. She didn’t know, the look on her face said that very clearly. She wandered off and went to go play more. Eventually I persuaded her to leave with me, she kept looking back towards the door of her room as if she wasn’t sure about where she was going. Starting to worry quite a bit about her memory now I asked her “Where is our car?”, she didn’t know – again very odd. It was only over the course of several hours that evening that she started to become more herself again. She immediately knew Daddy though, it was the strangest thing and worried me more than anything to this date.
The second time it occurred was the 31st of May, by this point we had seen Ariella’s paediatrician and she had been diagnosed with Epilepsy, it was starting to make sense. I’d sent her a video of Ariella’s hands tremoring but unbeknown to me at the time I had actually also caught an absent seizure on camera. I did notice before the appointment when I watched it back myself, they are so easy to miss in person. I wonder now how long the seizures have been going on for, a lot of the activity for Ariella is always at night. In fact most of her ferible fever induced seizures are often when she is unwell and always between 2 – 4am. We’ve always had an eye on her but I remember when she was under a year old and I thought she was having infantile spasms which are where both limbs shoot up a little like a startle reflex but more like a jack-knife. I was sure I saw this happening, when she was assessed in hospital her EEG was normal and she didn’t do it in hospital. Was that the start?
I know the very first sign that something wasn’t quite right was around 18 months old, her hands would often shake a little. Just a tiny amount, I raised it with her physiotherapist but there was no way of knowing if it was the start of a tremor or just her weaker than normal core strength. After the months went on a pattern began to emerge, the shaking was always worse when she was unwell. Her seizures are always worse when she is unwell too, I think that can be a trigger for some epileptic people? Her ferible convulsions may well never have been ferible and instead were epileptic triggered by fever which would explain the extended duration.
So with each episode of illness the shaking hands would return, it was only the end of last year that the hands moved to the arms and that we started to notice the shaking more often. When she was diagnosed with coeliac disease the shaking all but cleared again. We hoped that was the end of it really that it was due to how poorly she was but it returned and now it makes more sense. Something that is relatively new is the absences, either I didn’t notice them before because I wasn’t aware of what to look for or they have increased. Before medication the absences were occurring daily with little pattern, worse during periods of stress and anxiety for her. It’s still very early days in terms of medication and I think it can be quite a trial to find the right match and dosage, but for now it seems to be helping her a lot. We should be seeing an epilepsy nurse soon which will give us some emergency medication we can administer should she have a prolonged seizure again, I had no idea that brain damage can occur and we’ve always been assured that she was before now having just ferible convulsions but long versions of this. For Ariella a long seizure can be mean she is unable to walk the next day and doesn’t regain her mobility in full for a week, or her face droops on one side, or goodness knows what else can occur that I don’t know about yet. I will sleep much better once we have this medicine to hand.
The last week Ariella has been much less anxious, the medication she is using is used to treat bipolar disorder and anxiety too. The downside to this is she is very hyper and wired, she doesn’t sit and concentrate for long periods at present but until the dosage is at its final level it’s hard to know what the end result will be. She has had her second EEG, which is when they put little electrodes on your head and check for activity – it will be a little while before we know the results of this and in the near future she will need another MRI. But for now she’s happy, she’s hyper, full of energy and far less anxious than before. For the very first time in a very long time we listened to the radio in the car on the way to nursery this morning, much as I love our Ariella approved playlist it’s rather a short selection and I’m pleased to be branching out away from Paramore for a little while.
I really did think that given what occurred in January for us we all deserved a bit of a break, either I jinxed us with thoughts of easier sailing or someone really is having a laugh trying to work out what more can crop up to challenge us all. I’ll just throw it right out there, Ariella was admitted again for a bacterial infection in her blood. But it isn’t even as simple as that because the weeks leading up to this were filled with endless worry about her constant cold and the general congested and fast breathing she was making at night. I just had a feeling, call it mothers intuition that something still wasn’t right and I noticed while she was on antibiotics for an infection that made her face swell she seemed to make a lot of gains but the congestion returned after the course ran out.
Looking rather swollen
Ariella had a really bad congested nose which just stuck around pretty much after her prolonged non fever induced seizure in March. Oh wait you don’t know about that either do you? Let me rewind, yes so March – massive prolonged seizure, ambulance called forty minutes before she even started to snap out of it. It was pretty horrendous to watch, pretty terrifying too that the ambulance was given the wrong address, it felt like a long time alone and it was – but off she went to hospital and was only admitted for a couple of days, after it was seen that her bowel issue had reappeared but subsequently resolved itself again. That was March then we had May, oh May. May was the almost week-long admission, well in fact four days prior to that in and out of A&E with a suspected virus, followed by a non blanching rash, fever, pale and floppy Ariella, IV antibiotics and the icing on the cake a lumbar puncture.
Fortunately Ariella did not have meningitis, so the bacteria in her blood would be solved with a shorter course of IV antibiotics. It was a really anxious wait for the results although we knew that she was already on the treatment course, they’d started the antibiotics early on which meant it was caught early. This was really great news as I had my 30th birthday weekend planned and we didn’t want to be tethered to a hospital to top up each day and of course meningitis would be much harder to eradicate. When the blood went off to be tested we were told that it was likely to come back purely contamination and Ariella was sent home on home leave while we waited for the results, I felt really uneasy about this as I did not think she was at all well but her consultant wanted to see if she perked up outside of the hospital environment. When we arrived back for the results expecting to be discharged we were told it was actually a serious infection and that she would need the lumbar puncture to check if it had crossed over to her spinal fluid.
During this period of illness Ariella had two ferible convulsions, one in the waiting room of our GP. It was jarring to see the entire seizure from start to end, Ariella was cuddled into her dads arms while we waited to be seen. Suddenly her back arched and her face had a look of pain, it’s an expression I’ve never seen ever on her face before. She kicked her arms and legs out a few times as if she was striding in mid-air. Jamie laid her down in the recovery position while she seized on the floor. Although the first tonic part of the seizure is unusual and strange the clonic section is for me worse.
Her eyes fixated forward and open, her body floppy and her breathing laboured and loud. If ever I need to see an example of sucking in the chest, it always provides me one. This went on for about fifteen minutes, which feels like forever when you can see them in respiratory distress, pale and blue from the lack of oxygen. Some time later her eyes began to move, she falls unconscious. I think this lasted for some time too but by this point the doctor that came to help had called an ambulance. The GP nurse had cordoned a section of the waiting room off using big room dividers, I have no idea how or when these were erected around us. I’d given Sebastian off to a kind member of the public who had lost a blouse to the cause with his milky vomit.
“You are both so calm, so calm” the nurse kept saying over and over. I do remember thinking well we must be surrounded by doctors right now, it’s not like I’m sat with her on the floor of her room waiting for an ambulance to find our rather hidden address. Certainly distance to nearest hospital and ease of ambulance access will be on my next check list, we are at least close to a hospital. The crew arrived and assessed, It was decided given her general paleness, lack of really coming around quickly and her blueness that she needed to go to A&E. She absolutely did of course but was sent home with “viral illness” listed as the cause. The third visit to A&E was due to a facial droop, they wanted to rule out a stroke when I called 111. It turned out that the droop was probably a result of a seizure.
I think during this time you were all enjoying a nice heat wave bank holiday weekend, I dread bank holiday weekends because they mean one thing with the NHS – skeleton staff and lack of access. Every bank holiday weekend we end up in A&E lately. I hope that changes eventually and we can enjoy some time off. I spent almost a week travelling back and forth to hospital in the high heat with Sebastian sleeping on the hospital floor in his bassinet. Credit to Sebastian he was an absolute star, he slept well and didn’t seem phased by the odd routine.
I’d like to think that’s us done for this year when it comes to hospital stays, but I think I might create a quick grab bag just in case.
When it was clear that Ariella was not going to be able to hold on to a sibling board I began my search into the world of double prams/strollers/buggies. I struggled at first to decide which pram would suit our needs best and switched between all sorts of makes and models. To settle the matter I made a rather large comparison list, comparing the essential features for us. Firstly seat weight limit, then seat height, overall weight of the pram, width, cost, fold and finally features (particularly parent facing options).
Some of the runners up were the Mountain buggy duet was a close runner up alongside the Baby Jogger City Mini double. However when looking at the prams in person I was won over by the unique ability to make the pram smaller that the mono version of the Donkey2 provides. Ariella will be increasing her nursery or preschool hours soon and there will be more days where I will want to take just Sebastian out without her. The Bugaboo Donkey although it was not the top contender for seat weight or the highest seat limit it seemed to be a good compromise all round for both children. Offering comfort for both rather than the newborn receiving a worse deal in terms of either a narrow carrycot or non parent facing position.
Sibling love – Bugaboo Donkey2
S riding in Mono mode
When the Bugaboo Donkey2 Duo arrived I had to compile it, it came in a multitude of boxes due to the custom fabric options. I chose the Grey Melange premium fabric option for everything because I really love grey, but there are so many to pick from and combinations. I found it pretty easy to put together however and soon enough the pram was up in my front room, which is when I realised I’d want to take it outside. Luckily for me folding it down is a breeze and carrying it was fine, I don’t know if that’s because I’ve been conditioned to carry heavy weights – carrying A for so long!
First thing I did was try and put all the pieces down into the boot, with one piece setup with the carrycot fabrics and the other the seat fabric it fit really well into our Range Rover. If you happen to have a smaller boot I would recommend you go visit a store that stocks the Bugaboo Donkey2 to clarify it does indeed fit. With the carrycot now in seat form both seats stack on top of each other where the carrycot is in the photo below.
I have been delighted to own the Bugaboo Donkey2, it pushes with ease even though it has a heavy load most of the time. With two children and the lower storage area full you would not notice unless perhaps pushing up an incline in which case it makes this easier than our previous option. The carrycot has ample room for a newborn, at three and a half months old Sebastian still had plenty of space to grow into the carrycot. Although this should be the case, guidelines recommend up to six months most carrycots are our grown long before this time.
I feel this is due to the fact that Bugaboo use the same frame for the carrycot as the seat, changing out just the fabrics so you get a really long frame and thus a nice long carrycot. Space isn’t compromised however you do need the boot space to store such a carrycot (there is the option to remove a few pieces to compress but that seems impractical using the pram day to day). The fabrics entirely are of beautiful quality and materials, it feels very well durable and I love that I can completely remove them to wash at home.
The versatility is perfect, when in duo mode it fits through every door I’ve ever tried. When in mono mode it feels like just a little wider than “normal” but is not restrictive at all and the extra shopping bag space makes for a great option. It is a donkey though, certainly looks a beast next to the baby zen yo-yo we have for when we want to travel light, but we also have taken the Bugaboo Donkey2 with us many times across the UK to visit family just fine.
While travelling with the carrycot we used this as a cot and that made our load even lighter. Bugaboo carrycots are really spacious and the basic mattress is comfortable enough to sleep on if you don’t want to buy an independent mattress option. Rather than buying a fitted sheet I made use of the huge Aden and Anais muslins we were gifted as a base sheet which worked just as well. I was really impressed that the carrycot frame turns into the seat with a quick change of fabrics, most of my friend’s children had long out grown their carrycot before we did. I really do feel given the price of the carrycots normally this made the cost much easier to accept!
Now the Bugaboo Donkey2 is fabulous as S parent faces (please excuse the grub he is enjoying a lovely snack) and Ariella faces the world which is familiar to her. But they can look at each other and often will touch hands or amuse each other, any parent of two children will know how much that interaction between siblings breaks your heart to watch. As S has become more interested in the world I can choose between facing out or facing me, not normally an option for most double’s. Everything is really easy to adjust with their white button system.
Bugaboo have added a few extra things with the latest version, new fabric options firstly. The side shopping basket used in Mono mode now comes with a fabric cover and can hold a heavier weight, very handy when it rains as it protects your shopping well. The wheels are now foam so no longer do you have to worry about pumping up air, I think that might have put me off a bit – as well as this the suspension has been upgraded. No complaints here on that one!
If you aren’t sure about it you can always buy the Mono and should you want to extend to a second child buy the expansion of the extra seat. I really love this option as it allows the Bugaboo Donkey to grow with your family. You could even extend it to include a third child by adding on a sibling board/seat later. The versatility of the stroller I felt really pushed it to the next level and when you consider the price being able to keep the stroller as your family grows becomes quite cost effective.
Now to the main negatives:
The size – I think the obvious issue is it’s a big pram there is no disguising that fact but I’d also say any double is really. I had real genuine worry about getting around with a double pram day to day, living in a small market town with little paths but I have had no issue with this at all. The other main downside is the larger fold, you do need to go check out your boot space, Mamas and Papas usually have the pram in stock so you can go trial that out (do ring ahead to check!).
Rain covers – I don’t really like the rain covers that much, they are quite annoying and fiddly – I preferred the Stokke Xplory rain cover which just was on elastic where as the Bugaboo covers have a velcro in the middle you join together. You are supposed to be able to fold them down into the neat little package they come in using the velcro but i’ve yet to figure out how to achieve this unless it’s a really hot day and the plastic is much more pliable.
Cost – It’s really very expensive, when you take the base unit plus the accessories but if it’s within budget it’s well worth the plunge in my view, plus if you buy it with your first child and use it as a single with the option to expand later it seems very cost effective. The quality of the pram and the accessories is really good, I think there is quite a reasonable market for resale later too.
With all of the above said I really can’t fault the Bugaboo Donkey2 much at all. It’s great they have done a fabulous job with it and I love ours!
*All of my reviews are my own personal opinions and I have no affiliation with any other the brands mentioned above.