No-one in their right mind would ask for this life.
Sleeping with one eye and ear open at all times, learning to function on a handful of hours broken sleep. Weekly stock checks on medications, feeding equipment, continence supplies. Heart stopping fear as the phone displays the number of the school/hospital ward.
People like us don’t have their friends or families on speed dial – instead, we have our sons neurologist, physiotherapist, respiratory consultant, gastroenterologist. We are on first name terms with the nurses on the high dependency unit. We know the normal ranges for blood oxygen levels, heart rate; the amount of curvature a spine can be allowed to show before bracing is required, or spinal fusion surgery.
We know what true isolation feels like, and how sometimes the loneliest place to be is in a crowd.
Many of us give up jobs to care for our loved ones; some are fortunate enough to continue working. Caring for a child with disabilities cost around three times more than raising a child without, financial worries are a huge burden. And yet we somehow find ways to make ends meet and to provide our loved ones with what they need.
During the covid crisis, families like mine have had to survive without the crucial support from respite teams, hospices, visiting carers. Many have experienced a further drop in income as jobs are lost or workers furloughed. We are an ignored army, left to struggle behind closed doors.
To every parent, grandparent, sibling etc who is a carer – you are amazing, and I see you. I salute each and every one of you for all you do, the sacrifices you make for your loved ones, and the losses you suffer in silence.
I see the injustices you suffer because those who should be helping fail to do so. And I know how incredibly tough the last few months have been.
We have made it to this point, and as the rest of the country starts to return to ‘normal’, many of us will be remaining in limbo as we continue to shield. So, keep your heads held high, mighty army. We are driven by love and hope; there are no stronger forces in this world.