Our Social Media Presence

Following Annabelle’s diagnosis, I was lost.

I have always been that person who needs to understand everything I am doing to be able to do it. How could I parent a physically disabled child with no understanding of how to support her? I couldn’t.

I didn’t know what to do or where to go for help, so I did what most people do when they need answers and asked Google. I researched late at night for hours and hours for months and months. ‘What is cerebral palsy?’ ‘What therapy is available for cerebral palsy?’ ‘Will my child walk?’ ‘How can I support my child?’ and the list goes on. There was so much information to digest.

I set up an Instagram page in January 2018, two months after Annabelle’s diagnosis and a Facebook page shortly thereafter. I searched for other cerebral palsy families on Instagram and connected with as many as I could and what a relief to know we weren’t alone in this after all, there were other parents out there that had already experienced what we were feeling.

I quickly began to get ideas from their posts ranging from equipment recommendations to therapy ideas. I also joined as many cerebral palsy Facebook groups as I could find, the more groups I could find, the more information that was readily available for me to learn from.

The pages quickly became a place for me to hide behind when I wasn’t comfortable talking about Annabelle’s diagnosis. I didn’t want to tell everyone we knew individually as I still didn’t know enough about the diagnosis or her future to answer all the questions that would follow.

Once we had told our immediate family and friends, we then shared the pages with our extended friends and family so that they could understand a little bit about how her life was going to be a little bit ‘different’ for Annabelle going forward.

For a long time, I couldn’t say the words ‘cerebral palsy’ without my eyes welling up so communication via social media made it that little bit easier.

I began sharing photos of what we were doing at home to try and help improve Annabelle’s limited mobility and the photos of her in her therapy sessions which took place numerous times a week. Writing about what Annabelle’s day consisted of, for family and friends to read, meant that without me having to explain to several people, everyone was able to follow our posts and have a greater understanding.

Following others on a similar journey really helped me to come to terms with Annabelle’s diagnosis and for that I will forever be grateful.

Other cerebral palsy families began to follow our pages and we built up our own community.

I want our social media presence to also be something that will help others, so I share the positives but also the challenges we face on a daily basis as well as recommendations and home therapy ideas.

There is always going to be other parents out there that are at the point of diagnosis and searching for other families to try and relate to and for me, if they stumble across our pages and feel less alone or are able to learn something from us then that is a massive positive to us having a social media presence.

Social media is often seen as negative but for us, when we have a question, need advice or simply want people who understand to celebrate a success with us, there is an army of people right there waiting to support and celebrate with us!

Don’t Wait For A Miracle!

One may happen (hurrah! if so), but if it doesn’t, that can be ok too!

(Before you read on, I just want to make it clear that of course I believe every life/child is a precious miracle in itself, I’m not taking away from the wonder of that at all. Heidi is our biggest gift, and we are thankful for every day we have with her.)

The reason I wanted to share my thoughts though is this: so often I see posts about very poorly babies, just like Heidi was, who go on to prove all doctors wrong, hitting their milestones, walking, talking, getting 9 A*s at GSCE (are they even graded like that anymore, I may be showing my age!), despite the rockiest of starts at birth. These are great, uplifting, inspiring….all the positive words. But, I’ll let you in to a secret, sometimes miracles don’t happen, and life can still be all those things.

I hung to the idea of a miracle as I searched the internet while Heidi was receiving cooling treatment in the neonatal unit, only hours and days old. I dreamed it would happen as we brought Heidi home from hospital at just a few months old. I hunted out positive stories from other families as we adapted to our way of life.

All that made me feel better to begin with. We were going to be ok, Heidi was going to be ok (if you’ve read other blogs you may remember I actually thought she was going to be a racing driver at one point after reading about Nicolas Hamilton). But then, all of a sudden, it made me feel worse, a lot worse, as it didn’t happen. Had I done something wrong? Maybe I didn’t do enough physio. Maybe I should have paid for private therapy. Maybe I should have researched treatments abroad. I thought I had failed. I associated “ok” with “unaffected”, and that just wasn’t what life had mapped out for us.

You see Heidi (now 5 years old) in one sense hasn’t had the miracle outcome (go back to my first point, of course she is a little miracle to us). She wasn’t expected to walk – she’s non-mobile and wheelchair dependent; she wasn’t expected to take food orally – she’s fully tube fed; she wasn’t expected to develop a safe swallow – she has a tracheostomy to help manager her secretions.

At some point though, I stopped looking for the miracle. It wasn’t a defining moment, I couldn’t even tell you when it was, but it happened, and I started to enjoy Heidi for being Heidi.

Big miracles may not have been happening, but small developments were creeping in. Her first smile, that we waited over a year for, was like all my Christmases had come at once. I cried when our lovely consultant told us that she would go to school (I cried when she started school, I cried when her first piece of artwork came back from school, I am a big crier, and have totally accepted that!); I was beyond excited when we realized Heidi had started to react to both sights and sounds, having been told early on that she was visually and hearing impaired; I was fit to burst when she started to consistently blink in response to questions and choices given to her.

You see these seemingly small things became the big things to us. They were reasons to be happy and proud of our girl. I saw families of children similar to Heidi, living their best lives, and that then became my focus – to be grateful for what we had, and (try) not giving energy to what we didn’t (don’t get me wrong, that’s much easier said than done some times!).

Of course, I wish for Heidi’s sake that she didn’t have the challenges she does, but she is happy, loved, safe, and developing (even if sometimes it’s in the tiniest of ways).

We may not have had the miracle outcome you read about, but we have our girl, and for that we are thankful. Our “ok” isn’t what we had planned, but we’ll take it. We know things could be much worse. She has taught me more than I thought any daughter could, she knows nothing but nice things in these otherwise crazy time, and she is the toughest little cookie I know. Without realizing it, she has made a difference in this world, and that’s pretty impressive for a 5 year old.

For those parents who have had the miracle outcome, brilliant, it’s what everyone hopes for and I’m so glad it has happened for you. For those still waiting, I hope you are able to find joy and peace in the now, in the small (big) things, and that your “ok” can be a happy place. Our children are miracles in their own way.

Empathy

Empathy, understanding, compassion and acceptance can be difficult to teach a child.

Reading books and talking only goes so far, it’s modeling that can have the biggest impact. We recently moved into a wonderful neighborhood that is full of kids. The parents in our cul-de-sac have interacted with Sawyer the same as the other kids since they met him. He is just one of the other kids in their eyes and that means so much to us as a family. These special parents have never stared or even flinched when he has a reflux episode, which usually includes lots of vomit. I suspect this is why their children have come to love Sawyer. Their parents have modeled the empathy, love and understanding and in turn their children have modeled their behavior.

About a week ago I put Sawyer on his trike and pushed him with the girls while they rode their bikes around him. He laughed and enjoyed being with all the other kids. One of the younger girls that Sawyer has a special connection with observed me pushing him around. After a few minutes she approached and asked “Can I push Sawyer please? She had so much fun pushing Sawyer and he gleamed with delight. Soon the other girls noticed and asked if they could have a turn. They all had a blast pushing him and Sawyer laughed so hard we had to stop. A projectile vomiting episode could have easily ruined the moment.

The girls often ask me questions about Sawyer, and I am so happy to answer these questions. His little “girl” friend is the boldest with her questions. “Why he have to ride his bike like that?” “Why he has to stand in the wheelchair?” “Why he has a feeding tube?” Each of the girls will listen attentively while I explain and sometimes ask follow up questions.

Sawyer is so lucky to have these friends nearby that he can interact with while we are avoiding public situations.

He will have a core group of friends to look out for him when he attends school, this alone brings tears to my eyes. He will have strong girls who will wave to him in the hallways and act as big sisters on the playground.

These kids will in turn grow up with a child that is different than them. A child that requires patience and understanding, a child they will learn to communicate with differently. They have already asked many questions and continue to ask questions about him every day. I do my best to answer their questions, but I know that his growing connection with them will have a long-lasting effect on them.

As adults we can change how children with special needs are seen. We are raising the next generation and can help change the world for the better by simply modeling empathy, understanding and patience with everyone around us.

The Practice of Grateful Patience

I’ve never been very good at patience. I hate to wait and when I am forced to wait for something, my mind tends to be consumed in the process by excitement, what-ifs, anxiety or any number of other thoughts and feelings.

I’ve spent the last four years being a mom full-time to a houseful of children with disabilities and I can—without a doubt–say that additional-need parenting is chalk-full of opportunities to practice my patience. It seems as if my family is always waiting for something. Some of those things are positive–things we anticipate making the lives our children more fun, more accessible, or more comfortable.

It is hard to wait for things like new wheelchairs, new adaptive toys, new equipment, or new therapies. We usually have quite a process to go through for both little and big things. We often have to document and collect data about our children’s needs, petition and maybe appeal the insurance process, collect notes from doctors/therapists and then await appointments for fitting, matching, etc. before we ever get to the part where we are simply waiting for whatever it is to arrive. These times of waiting are paved with excitement and visions of fun and accessibility for the future, causing me to wish the wait time would end.

But then there is a different kind of wait…the waits that make my heart pound and my stomach churn.

Sometimes, it seems we have run out of options to manage pain or better the prognosis  for our children and so we wait for yet another referral to a specialist who may do nothing more than pass us on to the next phase of waiting to see yet another specialist who may or may not be able to assist. These waits between appointments and new referrals can last for agonizing weeks or even months. But then again, even the shorter waits can seem like a lifetime.

Recently we received a phone call: “The results of the tests are in. The doctor wants to see you in person to deliver the results though. Can you come in at the end of the week?” The wait was a measly five days and yet it felt like eternity. If I let my guard down, questions whirled and what ifs stormed my brain, threatening the stability of my foundation of faith and hope. After results are received, we wait for a plan. We wait for another referral, another treatment, another option. Waiting, waiting, waiting.

In one way or another, the waiting within this beautifully mess life of mine will never end.

Quite simply, it comes with the territory. While I would never choose to have my patience tested in the way it is daily, I have an incredible opportunity to make the waiting worthwhile.  I want to be an example to my children of all the life and love that takes place in every moment of every day. Over time, I realized that I don’t want the anxiety, anticipation, or even the excitement of what is to come to rob me and my family of the here and now.

Therefore, I have committed to make the most of these waiting times by lassoing in my thoughts and emotions and fixing them on the precious things that are right in front of me. I am learning to be thankful for the lessons I learn about trusting God, advocating, fighting the good fight, and delayed gratification. There are so, so many lessons and opportunities I would miss out if we never had to wait. The waiting isn’t easy but, in one way or another, it is always worth it and always brimming with opportunity to learn and grow in patience—patience that is certainly worth being grateful for.

Our Accessible Holiday

Whenever we go on a family holiday I find myself making the same cliche joke up on return. “I need a holiday after that holiday!”

After being confined mainly to our house for the duration of the coronavirus pandemic, we were very excited when we chanced upon an advert for a 3 night trip to Fife, Scotland in a fully accessible accommodation.

I am a bit of a homebird. I love being home. I don’t really get bored. There is always something to do, and when there isn’t… and life permits… I like to sit in complete silence and enjoy doing absolutely nothing. You could call stabilizing my own breathing a hobby as I tend to rush around with a tight anxious chest all day and intermittently let out a deep breath when I finally remember to catch up with myself. Or more recently, I haven’t even had energy to do that… I do as little as possible but then can’t sleep for guilt at the time I wasted.

To me home doesn’t just represent comfort – it represents accessibility. The house has all of the equipment we need. As we are learning the hard way; much of the world is not like that, at least not to the extent it could and should be. So venturing out brings both excitement but also anxiety for us.

Prizing ourselves out of our home comfort zone was to bring some new scenery and landscapes to explore. Life very often feels like groundhog day, or like we are just going through the motions to make it to bed time. I don’t want to look back on Amy’s childhood and think we squandered it doing nothing fun or meaningful.

This was the perfect opportunity – the place had a shower trolley/wet room, hosts, a profile bed… even clever touches such as a breakfast bar at the correct height for a wheelchair user. The best thing was that there was space! So much space. Our house can sometimes feel like a game of tetris… moving the pieces around so it all fits in. one piece of equipment must be moved that another can go there, it’s a constant process. Here.. you wouldn’t notice our 4 big suitcases, dog crate, medical equipment, wheelchair, travel bed, tube feeding paraphernalia and so on. It was so refreshing. This in itself feels like a holiday.. Literal room to breathe.

Setting up the travel bed had us in an exhausted sweaty mess within an hour of arrival… the venue had a profile bed with a pressure mattress, but the sides aren’t high enough for Amy and sadly she has a lot of uncontrolled movement and no danger awareness. We only had room in the van for one physio mat, but it’s essential as it helps her stretch out nicely after being in her wheelchair for many hours. You would laugh if you had seen how crammed our van was with stuff. But everything there was essential. Really we could do with a coach.

I have mentioned before that Amy has quite challenging behaviour and sensory needs. Her mood can alter at the drop of a hat. We aren’t sure why. She’s a very clever little girl but we are still working on communication to try and lessen her frustration. It can however be a bit demoralising having someone with you crying and shouting constantly in spite of your best efforts.

We have to remind ourselves that we are doing our best and that’s all we can do.

It doesn’t mean that we are failing her, it doesn’t mean that she dislikes us (I often take it personally.) Sometimes the crying is easily fixed with the right sing song and she will go from distraught to laughing. Other times I fear seizures, reflux, muscle pain and a whole other multitude of things no 6 year old should have to endure.

The pandemic has had a dramatic effect on all of us. Amy’s sleep pattern has worsened to the point of being up for the day at 2am screaming, and because we currently have no overnight respite, catching up on sleep is near impossible. If the wrong song comes on, this currently triggers up to an hour of screaming from Amy where we are unable to console her. So i knew from the get go that this holiday was really just going to be our normal life but in a different setting.

Knowing this makes me quite upset sometimes. I remember as a child going on holiday and having a lot of independence to go swimming, or exploring, and making sandcastles and so on. Notably one of my favourite parts of anything is food, and Amy cannot eat. I find myself trying to overcompensate for this and trying desperately to seek out ways to bring joy into her life. She deserves everything, but the world cannot always provide that. It hurts knowing that so many of my best childhood memories can’t be recreated with Amy. I have to remind myself that she probably doesn’t realise that, and is happy to enjoy life her way.

The accessibility and inclusion we found in Scotland was incredible.

We went to three parks, all of which had a wheelchair accessible roundabout. Amy’s face lights up when she sees them. She knows “I can do this” and “this is going to make my tummy get butterflies and make me laugh”. One park in particular had a wheelchair swing. We had only chanced upon this park and had done no prior research. It reminded me of when someone is lost in a desert and sees a mirage of the water they are so desperate to drink. Could it be? Had someone considered families like ours and gone to this effort and expense to make us happy?

It was accessed via a radar key, and you even couldn’t push the swing without unlocking it – which means it’s less likely to be misused or vandalised. It had a box you unlock with all the locks and fastenings to secure the chair down. The whole time my heart was racing and I felt quite emotional that we had gone to the park and been able to use not one but TWO things there!

Soon after the visit I wrote to our local council with pictures and a description asking if we could have similar facilities available here. I also wrote to Fife council to congratulate and thank them.

I was amazed throughout the holiday that somewhere with steep hills and cliff edges could be so easily traveled round by wheelchair. Much thought had gone into having flat smooth paths. I was impressed many times at how we were able to get to castles, windmills, and all sorts of beautiful historic sites. Sadly we weren’t able to rent the beach wheelchair but we will definitely go back again and do that. I wish more places had those paths that lead all the way to the sea so that Amy could see it without being lifted.

It’s strange how many highs and lows you can feel in one day.

I felt very tired most of the time from lack of sleep and tending to Amy’s various meltdowns. But I felt a lot of pride and excitement for those moments where she connected with us and the world and showed such joy at life.

Lately my hands have been getting sore from clenching the wheelchair handles, and my back is a bit sore from pushing her up various slopes. I am trying to push these woes aside as unfortunately this is part and parcel of being Amy’s mum. I need to get stronger and work on my own physical and mental health so that we can continue to make precious memories together and also fight for the inclusion and accessibility that isn’t around in our town still.

Navigating through the ‘threenager’ year

We sailed through the terrible twos but now find ourselves with a ‘threenager’.

The Urban Dictionary describes a ‘threenager’ as a: ‘Three-year-old child spouting attitude like a spoiled teenage.’

‘I want to do it on my own – Let me do it!’

Currently we have a child who doesn’t want help. Annabelle wants the independence that other three-year olds have (and rightly so). The difference is she is not physically able, so that independence is not to the level she desires. We do not have the luxury of sitting back and letting her figure it all in her own time because sometimes she simply isn’t able to. We are challenged with getting the balance of support we give to the correct level or we fuel the frustration and can be faced with ‘threenger’ attitude and tantrums.

‘I’m not tired!’

Annabelle is of the age whereby she doesn’t think she needs to nap but if she doesn’t have a late morning nap, any therapy scheduled for the afternoon becomes a challenge as she simply does not have enough energy to give it her best. When therapy is essential for your child, you want nothing more than for them to give every session their all but sometimes that just isn’t possible. Some sessions go well whilst others she has her own ideas and simply does not cooperate, most often because she is just too tired.

‘I want to feed my self – Don’t help me!’

Annabelle is capable of feeding herself, but it is a slow process. The time it takes to get a meal inside her is at least double when she is doing it alone. The technique of getting food onto a spoon or a fork and to her mouth without it falling off can be tricky for her and often requires more than one attempt. When she is hungry, she just wants to get the food in without delay, so frustration can kick in when it doesn’t quite go to plan but the ‘threenager’ in her is determined to keep trying.

We also have a hectic routine, before the current pandemic we had somewhere to be everyday, so time was never on our side. We battle to find food that we can give Annabelle that is healthy but that she can manage to eat at a relatively quick speed to ensure we get out the house on time. She has no concept of time unless it works to her advantage. The alternative is to take the risk with harder to manage food and offer her help and hope that it is the one time she will agree and let us assist when she is struggling.

Despite the challenges and difficulties that arise, we are over the moon to have a ‘threenager’. A ‘threenager’ who is going through mental changes and learning who she is as a person just like all those other three-year olds! She is testing her boundaries and with the right guidance and a bit of teeth gritting, soon enough we will come out the other side and will move onto the new challenges of having a four-year-old!

Being A Disabled Caregiver

I was diagnosed with Multiple Sclerosis (MS) in 2010 after losing sight in my left eye.

I am a qualified Learning Disability Nurse, although my career was cut very short when I was forced to medically retire. I had become a senior nurse in a local care home for people with neurological disabilities and was fortunate enough to share this role with my best friend at the time. I fell pregnant with triplets (following IVF) and went on maternity leave to have my beautiful children.

After returning to work for a “keeping in touch” day I wrote an incredibly gut-wrenching letter to my human resource manager explaining I just couldn’t physically cope with the work anymore. I’ve never been able to return to nursing, and odds are I never will. While work was hard a lot of the time (in many ways), I really miss it. I worked hard to qualify and had lost it after four short years. Most of my friends were also nurses so I felt like I had become an “outsider” in a group I once “belonged to”.

One of our very gorgeous babies was born with spina bifida, hydrocephalus and has since developed epilepsy. He has had a tough time from day one really, as he was born prematurely and weighed just 2lbs 10ozs. After six weeks and two surgeries, he came home and joined his identical twin brother and fraternal sister, who had been discharged after sixteen days.

All mothers (and fathers) are caregivers, although my husband and I joined a new exclusive “club” of special needs parents. I was doing things with Jacob that I used to do in work and while I was so glad I had the knowledge base to do this so it was all a little less overwhelming…it wasn’t easy. New parents often report feelings of exhaustion, and we had this times three!

MS impacts every aspect of my life.

My main symptoms are fatigue, weakness, pain, brain fog, emotional lability (intense episodes of emotion), tremors and mobility difficulties. This doesn’t really go very well with having a child with additional needs to care for. I am so conscious of how I word this, because I don’t want anyone to feel I resent Jacob. It’s not that, it’s very much that I feel like I fail him.

I resent my MS impacting how I care for him and the subsequent help our family has needed over the years. Jacob’s disability social worker set me up with Direct Payments when he was around 18months old, meaning I could employ someone to come in and be there with me to do the things I found physically harder, like lifting Jacob into the car etc. She was a vital addition to our family for four years, although has since moved on to new opportunities with our love and support behind her.

The challenges we face daily makes maintaining friendships harder, for so many reasons, partly because our ability to be included in “normal” activities is limited by mine and/or Jacob’s health. Having said that, I have been blown away with the support we have been shown.

My mum, in particular, helps us out so much on an almost daily basis. 2019 was an absolute hellish year for us (I’ve written about this in another blog about epilepsy) although we excitedly welcomed my brother’s little girl, Rowan, to the family. Him and his fiancé came to us for visits, even with a newborn, because they knew travelling triggered Jacob’s seizures. My husband’s side of the family have also been here to help whenever they can and have held us up during so many difficult times.

Life in our house is chaotic, and often very difficult, but also absolutely extraordinary.

We laugh together every single day and I am so fortunate to be Ben, Chloe and Jacob’s mummy. It is an incredible journey and I am so lucky to be on it! I’ve made a lot of mistakes along the way and know I will make plenty more, but I will keep striving to be the best version of myself that I can because my family deserve nothing less.

Our ‘New Normal’?

Even before Coronavirus came along, I suppose we had been looking forward to a ‘new normal’ this year, with Freddie’s impending transition to High school.

We knew that this was likely to be an uncertain, and probably difficult, time – as Freddie struggles with change of any kind – but we could never have anticipated just how difficult and uncertain it would turn out to be.

At his Annual Review in the spring term of Year 5 a keyworker from the LA was present. She suggested, gravely, that it was time I started to think seriously about Freddie’s eventual move up to High School: look at what options were available, maybe arrange to visit likely schools or find out if they had any Open days coming up. She was very surprised when I said I had already done all those things and already knew exactly where I would like him to go (and that he agreed); I was surprised that she was surprised – didn’t all parents start to worry about this once their child was in Year 4?

I was already fretting about it by the end of the summer term in 2018. I decided to do something about my worries, and I hit the ground running as soon as he went back to school in the September. We knew it would have to be a SEN High School, and that locally we had two options. I arranged visits to both during a normal school day so that I could suss out the feel of each place, see pupils and teachers interacting in the classrooms, and have a chat with a member of staff about the general ethos and working methods of the schools. I quickly developed a preference and luckily this school had a couple of weekend Open days for Year 5 families coming up so I could take Freddie and Daddy along to see it too.

My preference was duly noted by the LA ready for inclusion in his EHCP at his Year 6 Transition Review, and by the school so that they could begin preparing him for the move there.

At his Transition Review at the beginning of Year 6, I was told that it was unlikely we would get transport to school even though I cannot drive and the distance is further than a child with Freddie’s level of hypotonia and joint hypermobility can reasonably be expected to walk, even with an adult.

Does the LA really imagine that any parent has the time to spend four hours a day doing the school run? Luckily, Freddie’s current school went into bat for me.

Now that his new school was named on his EHCP the work of preparing him for the transition could begin. There would be visits to the new school, activities to take part in, visuals to support him. The transition would be carefully managed: he wouldn’t be just dropped in at the deep end.

I began to relax a little then, though there was always the lurking fear in the back of my mind that the school I had chosen might not offer him a place for one reason or another, even though it was named on his EHCP (that happened with my eldest child). If that happened the only other option we had was a school where he would have much less opportunity to make meaningful, reciprocal friendships – and one of the most important aspects of High School is the social education that it affords. All I could do was wait, and keep my fingers crossed.

I expected to receive an email about his school placement on 2nd March along with everybody else. I didn’t get one.

I queried this both with his current school, who didn’t know, and with the LA, who passed me from pillar to post as his keyworker was said to be either on leave, or on sick leave, or on maternity leave, depending on who I spoke to. Eventually, in desperation, I called the High School, and they told me that as far as they were concerned there was a place for him if we wanted it, but we’d have to wait for the official notification.

The week that I was finally officially notified that Freddie had not only been awarded a place at the school of our choice but also transport, was the first week of lockdown. Any relief I might have felt was immediately swept away by the realisation that all the planned preparation, the activities, the visits, would not now be able to take place.

Towards the end of June, I got a call from Freddie’s new school. They had managed to arrange some transition sessions if we would like to go – three new pupils at a time could visit the school for one hour a week and do an activity together, each sitting at separate tables.

The thought of taking him there in the middle of a pandemic made my stomach churn, but at the same time I knew he needed to go. I had no choice but to grit my teeth and, once again, trust strangers with the welfare of my child. I agreed.

Freddie was able to walk about a third of the way before he needed to climb into his wheelchair. I took us an hour to reach the school. After the first session, he started to look forward to the others – a chance to be with other kids again. Of all my children, Freddie has enjoyed school the most. I began, tentatively to look forward to September. Going back to school, even a new one, would be good for his mental health, and it would give me a chance to do the things I have not been able to, or have had to ignore, while Freddie has been at home.

At the end of July we received a letter detailing the school’s plans for the full reopening. It detailed:

Twice daily temperature checks.

Hand gelling/washing routines and the sanctions to apply if any pupil refuses to comply with this or other personal hygiene/social distancing/no touching rules.

Arrangements for dropping children off at school, including no engaging verbally with staff or other pupils (except in certain circumstances).

The requirement for personal vehicles to be cleaned daily or, at least, any surface that will be touched by your child, prior to bringing them to school.

A start time of 8.40 am, meaning that if school transport still is not running (or if the local authority continues to use private hire taxis as school transport, which I do not consider safe at the moment) that we will have to set out at 7.40 at the latest – a time of the morning when I would usually still be trying to coax Freddie to have a wash and get dressed.

A request for daily laundering of school uniform.

A request that no personal property be brought into school other than a plastic carrier bag containing the pupil’s packed lunch.

An announcement that the school kitchens would remain closed and so no hot food would be provided, and all pupils must bring a packed lunch to be eaten at their desk. Freddie has always had school dinners. He consistently refuses all sandwiches/packed lunch/picnic-suitable cold foods and has done for years. He detests them. I don’t know what I’m going to give him that he will actually eat. And no, he won’t ‘eat it if he’s hungry enough’.

I knew things would have to change when he started High school, but this is weird and outlandish and stressful and quite beyond anything I ever imagined. This may be our new routine, but will it ever come to feel like ‘normal’?

Hope For The Best

My go-to life mantra is to

Hope for the best,

Plan for the worst.

Potentially a bit pessimistic sounding I realise.  However, I find that I can cope better with emergencies and challenging situations if I’m as prepared for them as possible. Over the years we’ve had more than our fair share of emergencies and life-threatening situations; At 9 months old, Hugh developed a rare form of epilepsy that caused him to stop breathing for extended periods of time and required us to resuscitate him either with a bag and mask or through mouth to mouth.

My instinct initially was to cocoon ourselves in the house and never leave (except by ambulance) but that was no way to live. Hugh’s life threatening apneoas happened regardless of where we were – at home, in a car park, at a friend’s house, so if I ever wanted to leave the house again, I had to work out a way of doing it as safely as possible.

I planned for every emergency- where we’d pull in to resuscitate Hugh if he stopped breathing in the car, safest routes to take for an ambulance to get to us easily. I risk assessed every single situation and always had a back-up plan.

And so cautiously, carefully, we began to step out into the world; to try things, to do things, to start to live again.

We even went on holiday (in the UK), choosing a destination based on its proximity to a decent A&E.

This constant risk assessing and planning how to manage medical emergencies is second nature now. The first thing I did, when getting a new Apple Watch for my birthday a few years ago was to check if I could use it to call an ambulance from the back of the van. (I can).

All our plans are adapted, changed and cancelled dependent entirely on Hugh’s health needs, but we continue to take calculated risks and always hope for the best. That way we can ensure that we’re not controlled by fear and that Hugh (and the whole family) can continue to live as full a life as possible.

Transitioning out of this period of shielding, reminds me a lot of those early days of adjusting to the new, terrifying knowledge of Hugh’s life-threatening condition.  How do we try and live life to the fullest without being controlled by fear?  For me, that’s to fall back on my own mantra – hope for the best but plan for the worst.

As always, we’ll risk assess and plan and make decisions based on the needs of the whole family whilst being mindful of Hugh’s health.  We’re even hoping to go away for a week to a lovely accessible cottage by the sea. (It is, of course, near a hospital!)