Our family life is vastly different to that of a typical household. Unique in our setup, our roles have naturally evolved over time. As has the amount of equipment needed to support our warrior princess.
Equipment becomes part and parcel of life with a child who requires assistance to sit, stand, walk, talk etc. It’s quite an emotive process as a parent to go through.
As often is the case, you may be reeling from a new diagnosis or are awaiting results. Your emotions are high anyway, to then see a large bulky metal piece of equipment in your home, tips the balance. Seeing an object, you had never envisaged being part of your lives, there in your living room. That can be hard.
It’s as though a piece of engineering has somehow reinforced the reality of your lives. It makes everything so much more real.
Please don’t get me wrong, we have a great love and appreciation for all the amazing innovative creations that allow our daughter to live a comfortable and supported life.
Talking honestly, from our experiences there are an awful lot of different pieces of equipment. They take up a significant amount of space. So much so, that we brought an additional shed to store some of the equipment and medical supplies as there was no more room in the house.
For a child like ours who requires full postural support, we have nine pieces of equipment at home. We are on the cusp of needing to have ceiling hoists installed to assist with transfers in and out of equipment. Kitchen cupboards have been utilised as tube feeding supplies and medicine supplies storage.
Sometimes it feels as though you are surrounded by equipment and other medical paraphernalia.
And the truth is, you are. It’s part of your life, a huge part. Most days I’m oblivious to it all, it’s only on my more tender days that it all seems more evident.
We are so lucky to live in a country where this equipment is available and our little girl is able to flourish with its support. Violet loves to stand tall in her standing frame and to walk using her walker. Sitting and eating are possible thanks to a seating system which absorbs her dystonic extensions.
So, although it is bulky and cumbersome, we love all of our equipment because of what it makes possible for our daughter.