Moving on

Despite the loss in our family, I still want Joshua to have some fun during his half term school holiday if possible. We have missed out on our family holiday on the south coast but we are going to go away, just the two of us – plus four dogs and three cats! – today. I had packed yesterday but Joshua had a seizure and I was battling a headache all day, so we took it easy at home instead in the afternoon. So we will get off today just as soon as we are ready, before the week runs away with us.

But yesterday morning we had a visit from a very kind friend, who brought us a bag of goodies to cheer us up. Joshua was asleep throughout her visit, so we had a two hour uninterrupted natter, which was lovely. As she has suffered a major loss in her life, we talked a lot about death, the sensitivity of others to trauma and moving on. Even though our life experiences are very different, we agreed that because we have suffered  a family trauma, that we can empathise well with others, whatever their particular crisis. Therefore perhaps having Joshua as he is, has made me grow as a person? 4 day old diagnosis stays with you forever and those feelings on hearing the words ‘devastating brain damage’ will haunt me forever.

Empathy is a very useful human emotion as it helps us to connect to others, even strangers. My motto is always to put myself in someone elses shoe’s and to treat them as I would want to be treated in that situation myself.On taking this approach, it is simple to empathise with others and to be heartfelt in my response, rather than just saying the empty words. Crying for someone else’s crisis or disappointment, is not uncommon for me. And that helps to have ongoing concern for people, rather than just asking after someone’s wellbeing at the time of the trauma, as I am reminded of their crisis whenever I see them again, when others may well have forgotten and have moved on.

Neither of us has yet found professional counselling services, but are working through our own demons ourselves. Nothing will make Joshua’s disabilities go away, nor will bring her husband back, but over time we are both managing to adjust and make the best of our situations. As she left, I felt as though we had really aired our views and felt better for our ‘DIY therapy’, and I  hope that she felt the same. While our chat had not changed the world, we had certainly taken it to task and as a result, had connected.

So later this morning, we will drive into the countryside for a few days away, hoping that my husband will be able to join us by the weekend at least, if his family manage to get Grandad’s funeral organised and if he feels comfortable leaving his mother alone to grieve, which  I know will not be easy.

Facing ups and downs together

Being a parent is a difficult job and one for which we really receive no real training, other than observing  our own parents practice on us. But then if you intensify that experience by being a single parent of a child with special needs, then you have a really demanding role. You are the only one who your child turns to when they are ill, when they cannot sleep and you have to be both good cop and bad cop, all rolled into one.

It is already a lonely experience being the only one up at 3am dealing with a child who will not go to sleep, has just had a seizure or has a raging temperature. But if there is nobody else at home to either share that burden, to sympathise in the morning or to know that they could be woken up in an emergency, that would be a different prospect. Last month, Joshua had a seizure in the afternoon and I ended up lowering him to the floor to be safe and so I was pinned underneath him while he recovered. As he went into a deep sleep, I realised that I was stuck unless I rolled him off me and I really did not want to disturb him. I called for my husband to help to lift him gently onto the settee to recover in more comfort, but as he was outside, he did not hear me. He returned eventually, and did as I asked, but in single parent families, another solution would have to be found.

While I usually handle the wakefulness overnight in our family, I have always said that I cannot have two consecutive ‘all nighters’ so that my husband is called upon on the second night to step up, even if it is just some of the night. Ordinarily it does not arise so he is off the hook. Night-time cover can be the biggest problem,but that is not the only time that I would miss having the back up of my husband. Shopping is not an activity that Joshua enjoys most of the time and he makes it pretty hard work if he will not cooperate. Therefore I often go to the supermarket without him, either leaving both boys asleep in bed at 6am when the store opens or at weekends, Joshua can stay at home with Dad. It should not feel like a luxury to be able to go to the supermarket childless, but it does, as the whole ordeal is simpler and faster without having to use those supermarket wheelchairs with the awkward trolleys that attach to them.

The hospital appointments that we have attended where it has been so useful to have another set of eyes and ears, either because Joshua has needed distracting so that one parent could concentrate on the consultant or because of the enormity of what the Doctor is saying, that one brain cannot take it all in.Even though I was told Joshua’s diagnosis when I was on my own, at least I knew that my husband was on his way, and that he could help to piece together the devastating news and we could face the future together. Life would have been very different if I had been a single parent, for sure.

So as Valentine’s Day has passed for another year, I reflect that for me it is not all about chocolates and flowers, but it is about supporting one another through the rollercoaster of life and certainly having children with special needs is certainly a  bumpy ride!

Living with unpredictability

I have often talked about living with Joshua meaning that we have had to get used to changing plans at the last minute, but this has equipped me to better deal with unpredictability in my life generally. At this moment, I should be on holiday on the South coast withmy husband and son. Instead, Joshua and I are still at home and my husband is still staying with his mother,  visiting his father in hospital.

As yesterday wore on, it became more apparent that we were not going to be going away and so I have put our booking ‘on hold’, and helpfully, we can redeem my booking at any time in the next 90 days, so all is not lost. We are making new plans on a daily basis as nobody knows when things will resolve and our ‘normal’ family life will resume. Fortunately as a personality type I am laid back and I do not need to know what is going to happen tomorrow.  Luckily Joshua is not a child who has been counting down his ‘sleeps’ until his holiday or is one that is freaked out by a change of plan. We are both content to wait and see what happens and to make new plans when the time comes, as that is how our life, since Joshua arrived, has always been.

There is no point in getting frustrated, as these changes cannot be helped and nobody is delibaerately being awkward. However I will admit that it is frustrating and disappointing. And so the temptation is never to make any future plans, for fear of not being able to keep them. Now that would be foolish and would deprive us all of having anything to look forward to, which is one of life’s real pleasures. Keeping commitments might be problematic, but I still have a calendar full of futures plans – weekends away, christenings, concerts and holidays. September will bring a big birthday for me and I hope to fill that month with celebrations.4 weeks of fun and games should be on the cards, unless something else gets in the way.

Changes have taken place over time in my personality. Over the years I have become more spontaneous in the way that plans are made. My sister and niece on the other hand like to know a plan and to know what will be happening next. In fact, that is the reason that I initially resisted us all going on holiday together. Nervous about our different approaches towards plans and spontaneity. Going to Florida together however was great fun and we all adapted and had the best time, with a reasonable mix of planning and last-minute decisions.2 years later I would love to go away with them again, we really made a great team. Perhaps we will organise something similar for my birthday in the Autumn? Leaving any planning to my husband could be dangerous, but I am happy to see what he comes up with, so long as he invites the right guest list to celebrate with.

And so, here I am at the start of the day, and I have no plans for how the day will turn out. Yesterday, Joshua woke up at 11am, which is early for a weekend/holiday and so it meant that I could get to a bank and post office before it closed. Given the week that he had had of seizures and wakefulness, I was not prepared to wake him so that we could play, so I left him to wake naturally. I have too much experience of me waking him up before he is ready  and he has either gone into a seizure immediately or simply refused to respond. Instead I go with the flow and allow him to dictate the starting point of his day. So let’s see what today brings, though I do not expect to see him awake for at least another four hours.