New Year is time to look back and celebrate the good and try and leave behind the not so good as we move forward in to a next year. For us, 2015 has probably been one of the most challenging years of our lives but probably one of the most formative too. The year didn’t start very well at all…this time last year we were completely exhausted – physically, emotionally and mentally as Toby had been so difficult over Christmas and so we started the year already worn out. We just felt like we never got a break as our ‘holidays’ were more challenging and exhausting than term time. Toby didn’t understand what was going on, he wouldn’t sleep and spent most of his time crying as he was so confused, and being totally non-verbal he couldn’t communicate his feelings and frustrations.
We persevered and got through that first half term however we both became ill in Feb half term. Joel went back to school for one day and the Head took one look at him and sent him home and after that he didn’t go back properly for another six months. The doctor diagnosed him with a post viral fatigue and said that his body was so run down he just wasn’t recovering. I guess working in a special school with young people with additional needs and challenging behaviour and then coming home and dealing with Toby’s additional needs and challenging behaviour takes it’s toll. He spent most of the next half term sleeping and resting.
During this time we realised that we needed to make some pretty big lifestyle changes. We knew God was in this and although we didn’t fully understand what was going on and why, we felt an unexplainable peace. We knew that God would bring us out the other side of this but that it would be a long process.
For me this was a pretty challenging time; Joel spent most of his days in bed and I felt as if I had three boys to look after. Looking back now it all feels like a bit of a blur and I can only thank the grace of God for carrying me through. We also used the opportunity to make some great memories – holidays in term-time that we would never normally be able to take, chilled days while Toby was at school and lots of time to chat, pray and process what had been happening in our lives and start to make some changes.
We had a lovely break in Northumberland at Easter (paid for by the Family Fund) a few days at Alton Towers in May half term (thanks to tickets from Merlins Magic Wand) a midweek break to Center Parcs all before Joel started a slow phased return to work. During all of these breaks, Joel needed to sleep most afternoons as he was recovering.
At the start of the year someone mentioned respite care to us and I was reluctant as I didn’t want people to think I couldn’t mange my own child but after Joel became ill, we felt that it was something that would benefit us all. It took six months of battling to get a social worker and another three months before we actually got someone to take Toby out for a few hours a week. Having the respite care has really helped to give us a bit of a break – I think for the first month or so I just slept every time he went out – I obviously needed it! Although there were lots of hoops to jump through to get someone from the children’s disability social work team to see Toby, having social services involved has been a pretty positive experience.
The Summer was…eventful…some of you will remember me getting hit by a marquee (if not you can catch up here – Camping…lessons learnt!) I actually suffered quite a lot of flashbacks and anxiety as a result of this. I cried my eyes out in the cinema watching the film, ‘The Martian’ after someone was knocked over by a flying object due to a storm. I also saw random objects flying towards me in large gusts of wind (totally irrational things like cars, lorries, lamp posts, traffic lights etc!) As a result of what happened I was terrified during storms and tried my hardest to not leave the house. However our church leadership team prayed for me and since then I have not been scared – even today I was out in the forest chasing Teddy around in the wind which even a month ago I wouldn’t have been able to do.
Joel had a second phased return in September as he never actually managed to get back up to teaching capacity before the summer. However he was still finding teaching full time challenging and was coming home exhausted. We made the decision to go part-time and although this would have a large implication on our finances, we felt that the right thing to do was for him to go down to four days a week.
So after October half term Joel started working Mon-Thurs and then having Fridays ‘off’ and trying to get his planning, prep and marking done in order to free up evenings and weekends to help with Toby and to actually have some time to rest. Toby’s respite care also started after half term and although it’s just 3-4 hours a week it makes a huge difference to our weekends.
We were chatting in the car today and saying how much of a better place we are in this year as opposed to this time last year. Toby has had a much better Christmas – he’s still got up most mornings between 2am-4am and has required a lot of attention and stimulation but he hasn’t been as upset and emotional. We are also not feeling as exhausted and are much more positive about the year ahead.
Center Parcs for Christmas was a highlight for us all and has really helped to break up Toby’s school holiday.
So despite Joel’s illness, myself getting hit by a marquee, Toby breaking his collar bone, Teddy failing three hearing tests, a car accident, a broken boiler, a battle with social services, a mouse chewing through our car diesel pipe (twice in one week), two smashed iPads and a third thrown in the bath and lots of sleepless nights, we survived 2015 and are excited for the future!
Thank you to all of our family and friends for their love, prayers and support – Happy New Year!