Everything I need?

I was talking to a colleague many years ago about Joshua’s difficulties and I was asked ‘Can he show you that he loves you? ‘ and I replied, very much so and I was told ‘Well that is everything you need then!’ It may not be ‘everything’ but it is certainly  most of what I need.

Joshua showed that he loved me at 4.30 am yesterday morning. I had got home from Germany at midnight and it was 1.30am before I made it to my bed as I was telling my husband all the stories from the job and was drinking my much-missed tea. But at 4.30 am Joshua was on the landing calling me and his face simply lit up when he saw that I was back, from wherever I had been last weekend! His excitment was such that he was not going back to sleep anytime soon, so we came downstairs, where  I was treated to lots of bear hugs. I gave him cereal and we watched some TV together, then had a bath after which, around 6.30am, he became sleepy again so I tucked him in his bed, where he promptly fell asleep.

He showed that he loved me again after his school day as I met him from school for a change, as I had missed him too, so I asked Yorkshire GRandma to skip a night.More bear hugs, smiles and he followed me around, as though he dare not let me out of his sight again. I gave him a tub of German Gummy Bears from the airport and he sat happily helping himself, tucking into his gift.

I am so fortunate to be welcomed home in such a way, most 17 year olds might grunt when their Mum returns after two days away. I was in no doubt that I had been missed and even though it was  bit too early, I was delighted to spend time with him too. My husband was away last weekend, I was away this weekend and it is Joshua’s turn in respite, this coming weekend, so there is neat symmetry in that. The weekend after, we all three go away together for a fortnight’s holiday and I for one, cannot wait.

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Separation Anxiety

I will be working abroad this weekend, which is a rare occurence, but I will be leaving home on Saturday morning and I am not expected back until midnight on Sunday, after a full- on weekend project. So I am having to plan both, what I need to take with me to Germany ,as well as thinking about what I need to leave in place for my husband and Joshua. They will be fine I am sure, it is just one night away, which they have managed before of course, but it is not easy, especially because Joshua has had some bad clusters of seizures this week – he was off school yesterday after needing rescue medication at school on Tuesday. – so that will make it much more difficult to leave them, as I find it hard to handover control.

I returned to work on a part time basis when Joshua was 6 months old, just three days a week initially and then when he went to school, it developed to four days a week,and I still  treasure my Friday’s off. This was my first job from university, so I have now worked there for over 28 years! I have often been asked how or why I work, when being mother and carer to Joshua is so demanding? For me, it has often been a lifeline – something that I can control – unlike Joshua’s health needs – , something that is familiar and that I am good at and something that allows me to forget being just ‘Joshua’s mum’ for a while. Of course I , like everyone else, have bad times when I regret my decision to work and wonder if life would be simpler if I didn’t, but on balance it works for us as a family.

During my normal working week, I have to be flexible, to accommodate Joshua’s health needs, as he will always be my prioirity. There are many times when I have had to rush out of my office to meet an ambulance at school after seizures or a bad fall or when I have had prolonged carers’ leave after Joshua’s surgery for instance, and I am grateful for the flexibility that I have been shown throughout his lifetime. When I went off on maternity leave back in 2001, none of us knew that Joshua was going to be more demanding than most ‘normal’ children, but the family firm that I work for have accommodated my needs and they know, I hope, that I give the most that I can at any time.

But this weekend I need to hand over the carer reins to Dad and I have to focus only on my work, as there will be nothing that I can do from Germany. I will do the best job that I can this weekend, then return as Mum  from Monday morning.