Today Freddie’s new bed was delivered. Freddie has needed a new bed for a long time but due to his physical difficulties he is unable to go into a regular bed. We have been lucky enough(or unlucky depending on how you look at it) to meet the nursing criteria to get a bed funded by the council.
Freddie currently sleeps in a cot and over the past year it has become increasingly difficult to lift Freddie in and out of it. Freddie’s new bed is very similar to a hospital bed. It has controls to move it up and down and you can tilt either end.
The moment the bed got delivered and assembled was bittersweet. Instead of the novelty, racing car bed designed for a 3 year old boy that I longed to give Freddie, we had a hospital bed. I know the bed is going to make life so much easier with Freddie. No more strain on my back lifting him in and out and being able to tilt the head end of his bed will come in really handy at helping to manage Freddie’s overnight reflux. But seeing the bed was horrible. It was another piece of equipment. Another piece of equipment for a disabled child. Lately I’ve been feeling quite suffocated by the amount of equipment and medical supplies we have. Everywhere you look there is something that Freddie needs. Something that Freddie needs to help keep him well and healthy.
Freddie’s bath chair
Freddie’s standing frame
Freddie’s sleep system
Freddie’s tube feeding supplies
Freddie’s daily medicines
Having so much equipment in your house can be hard. Even though your incredibly grateful to have it all and that your child has everything he needs to help him thrive there’s a big part of you that would give anything to just get rid of it all. It can become quite overwhelming. Everywhere you turn in your house there is equipment. On top of all this we have other bit’s like glasses and splints. The glasses need cleaning constantly, the splints need checking and re-positioning frequently. Then there’s bibs that need changing every 30 minutes, a strict feeding schedule that needs to be followed, fluids that need to be put down his tube and stretches to be done. Every day seems like a never ending routine of caring.
Lately I’ve found myself wondering what life would be like to have a family without a disabled child. What do parents do if they aren’t busy with medicines, physio or hospital appointments? I wonder what it must be like to just go out for the day without having to pack a huge amount of supplies and plan the day to precision.
It’s not that I don’t love Freddie, because I do. I love him more than words can describe. But some days are hard. Some days you just want to say ‘enough.’ I’ve had enough of this disabled world.