The summer

I greet the end of the school year with equal amounts of trepidation and excitement. While naturally I look forward to 6 weeks of no work and spending time with my children (and Fred) long holidays throw up their own unique challenges when you parent a child with PMLD and complex health needs.

It used to be so simple. Nate in a pram or pushchair. Then in small special needs pushchair but still able to fit on a baby change table, or be lifted onto the back seat of the car to be changed. My daughter eager to be out and about exploring, discovering, and playing while Nate roared his approval out in the fresh air. 

Then they both grew up. Nate is now a whopping 32kg and back breaking impossible to move from his chair, and my daughter is keen to spend time with her friends or be playing sport. The majority of our prior summer days out or time away were geared towards keeping our daughter entertained, and we had a list of fully accessible local attractions, several with changing rooms which meant we could stay longer knowing we could meet Nate’s care needs. But now? What is there to do with Nate? Seriously. I'm loath to be stuck in the house and have vowed to make it out somewhere with Nate ( and drag his sister along, with maybe Fred too) at least once per week. As you can see I'm keeping my expectations appropriately low ( so as to ensure their achievability), and we plan to meet up with Nate’s friends from school at various places around the North East rain or shine, which we are looking forward too. 

Although history does suggest that at some point it is inevitable that our plans will go tits up. 

As a family we are hoping for a few days in the capital ( ssssh don't tell Nate in case he gets any dodgy health ideas ) and as a friend pointed out ” there are plenty of hospitals”. Limiting factors to overnight stays involve the requirement of a fridge for feed and meds, space to wash and dry all the syringes, managing in a normal bed, additional space for; oxygen concentrator ( and backups), ventilator, humidifier, sats monitor and feed pump. Oh and how will I blend food for Nate? I shall be giving my best smile in restaurants I can tell you that. 

We are going to attempt to get Natie to his first football match, and as Arsenal have a changing places toilet and sensory room it seems like it might be possible. The downside of booking tickets for a wheelchair user is that apart from the ”carer” they dont seem to accommodate the rest of their family or friends, so Michael is hoping to get seats allocated nearby. 

Well it's worth a try.