Why so serious?

It's all starting to get real now. As George grows older and bigger his complexities are becoming more apparent and the reality of our situation hits home that little bit more.

Today we have had a trip to hopehouse childrens hospice to discus his progress and to have him measured for a specialist seat. The whole experience become overwhelming for Natalie and I. We were both upset seeing our first born child requiring securing in specialist seating. We are exposed to this sort of equipment a lot at the hospice but it's different seeing your own in it.

This is the first major piece of equipment that George has required. The fitting and ordering of this seat has really hit home George's complexities. The seat which is called the X:panda is the first big visual indication of the seriousness of George's condition. As upsetting as It was to witness, we do see the value in it. It provided the support that he requires and has a hydraulic lift on the chassis allowing George to be sat at a height convenient to the situation, be it the dining table or alongside the sofa.

The footprint of the chassis is relatively small but once inside a new home such as ours, it will quickly become overwhelming.

Conversation also progressed onto car seats. George is big for his age and is rapidly filling his current car seat. We posed the question as to where we go next and the answer was adapted vehicles. We knew this day would come, but maybe not quite so soon.

We applied for a blue badge for George a few weeks ago but the lead time was 12 weeks plus. We have also been advised that George needs to be 3 years old before he becomes eligible for a motability car.

We have found it difficult to process that we will soon be requiring a vehicle that has been specially modified, just to allow George to be transported safely.

We are used to having large cars to transport ourselves, the dogs and camping or holiday gear. These are normally our first consideration when chosing a car and it's sad that ensuring there is space for the dogs and equipment will become secondary. The dogs are a big part of our lives, they are our family and we can't afford to compromise. We need to be able to safely transport George as well as fitting the dogs and baggage in to the vehicle.

We have conceded that camping holidays would be difficult now, but are keen to continue holidaying in the UK with the dogs and George using airbandb's etc.

The whole situation is feeling more and more unfair as we are starting to require specialist equipment and George's needs are becoming more visible. We are continuing to remain as positive as we can though and will look to embrace the good that the equipment will bring rather than it highlighting these additional needs.

Sadly news broke this week that an old friend from school had been struggling and found his answer to be suicide. My thoughts are with his family and children that have been left behind.

Unfortunately this isnt the first person from my school to lose their life to suicide, he is actually the 3rd school friend from my year group to take his own life and the 5th person that Ive known personally that have found the struggles that life brings to become to overwhelming. 5 lives lost needlessly and 3 before the age of 40.

We are sad that George will not lead the full life we hoped that he would and it's saddening to think that old friends going through difficult times found that their only way out was suicide.

It's so sad that someone is able to end their life willingly whilst George (unknowingly to him) is facing a daily battle for his life. We are haunted by the fact that we will likely outlive our first and only child. Suicide should never be the answer and it's unimaginable to think how low somebody must be to be able to do the unthinkable but it's seemingly to common.

We all face struggles in life. It's not always easy but it's important to reach out for help whilst you can. Natalie and I never expected to need help from so many at what should be such a happy time but we have needed it and without it life would be much more difficult.

We are so grateful to have George and realise just how precious life is. We can't imagine our lives without him but sadly it will likely become our reality at some point and it just seems so cruel. We are thankful that we have the continuing support of the hopehouse hospice and are comforted by the fact that we know they will be there when the unimaginable happens but for now we cherish every day that we have George and will fight to ensure he is comfortable and able to lead the best life that he can and make as many happy memories as we can as a family.