HIE in the Covid World
By Sarah Jepson-Jones
So on HIE awareness day in this crazy Covid world I am reflecting on what it means to us in lockdown.
We have a gorgeous 4 yearr old with HIE – quadriplegic Cerebral Palsy, tube fed, non verbal and not independently mobile. We also have a two week old!! Lockdown with a girl like ours brings different challenges. No Joe Wicks for us. We can’t make (easy) use of all the craft, activity and baking suggestions posted online. There are no endless questions or virtual chats with loved ones.
We have no way of knowing which friends she misses most from nursery, are forced to watch endless repeats of Molly and Mack (in the walking frame to assuage my guilt re not doing physio), and have a very real fear of sliding back on her progress as all her usual therapy is cancelled.
But HIE has also set us up to survive lockdown.
We already posses a resilience and strength we did know we had, there is a deep sense of team with my husband, and a huge joy and appreciation of the marvellous ‘small’ moments that do happen. A spontaneous sign for ‘bath’ the other day had me in tears and this morning we accidentally found the baby bath was a perfect wet play area for her.
We also now have access to a wonderful online community of caring, sharing parents each offering their own insight and support on our individual HIE journeys, and a huge appreciation for front line NHS staff and the challenge that faces them ahead.
And so whilst I worry we are not doing enough for her in this lockdown period I also know we will get through it – hopefully with happy memories amongst the fears and anxieties.
HIE has equipped us to cope – and for that we can be grateful.