Every day out, weekend away or staycation with Lou Lou brings a whole new dose of the reality of life with a disabled child. For a long time I thought of her as a baby as her skills remained at this level. However, her body is growing fast regardless of her mind and it is an ever-increasing challenge to move her. She likes to vary the difficulty level.
Sometimes she can be as floppy as a ragdoll yet other times, with her long legs, tendency to stiffen them and fling herself backwards, it’s like trying to cuddle an ironing board!
Last year a week-long caravan holiday left me feeling more stressed and frightened than ever before as I couldn’t lift her for two weeks and could barely walk or bend to pick anything up due to sharp back pain and weakness in my arms and shoulders. Physiotherapy appointments have since suggested that I slipped a disc during this time, and I now live in fear of it happening again.
Every time I ache at night or my husband winces when lifting Lou Lou, it is a reminder of how important it is to look after ourselves. To be able to care for her we need to care for ourselves first and foremost. Of course, it’s one thing to know and understand all this but quite another to put it into practice. Constantly on the move and fetching and carrying for a 5 and 3 year old is time-consuming. Their demands (vocal from the 5 year old but emotional from the disabled 3 year old) drown out my own voice in my head telling me to practice engaging my core and strengthening those muscles. Lack of time to do everything that needs doing each day means I fall down the list of priorities and sometimes off the ‘to do’ list entirely. Tiredness is another issue. If I’ve spent the early hours by Lou Lou’s bedside then sometimes it’s a struggle to hold my head up or put one foot in front of another, let alone find the strength to tilt my pelvis or adopt the correct posture.
We’ve recently had a bungalow holiday which resulted in considerably less lifting from her wheelchair. Throw in more hands-on deck (we were holidaying with family) and more two-person lifting and my back certainly had a holiday too.
Now, as builders move in to begin our ground-floor extension (to give Lou Lou a downstairs bedroom and wet room with H frame hoisting, ramped access and wider doorways) I can start to imagine a future where caring for this growing child will always bring challenges but will at least be more manageable in terms of the physical demands.
As for emotional demands, I’ll save that for a future blog post!
The portable activity kit. Fun therapy at home or on the moveFind out more