The gift of breath

Written by Sara Crawford, mum supported by Very Special Kids

I recently did something that I had vowed to myself I’d never do.

As a mother of a child with a life-threatening condition, I have told myself time and time again that my daughter needs me, she relies on me and that my presence and watch is pivotal in the fight against her condition.

Her health, her needs, and her happiness come before all else and in a life that has been most unkind I promised myself and I promised her, that I’d always be by her side.

I thought that I knew that nobody could care for her in the same way and on the same level as I do.

Well, guess what? I recently got proved wrong and it coincided with the time that I did what I vowed I would never do, I put my daughter, Piper, 3, in the care of somebody else.

I put my daughter into the care of the Very Special Kids Hospice.

My Family Support Practitioner Angela has encouraged me in doing this from the moment we met and to communicate on a parent to parent level with her. To be honest at the beginning I thought she was crazy.

Piper couldn’t simply be “left”. Parents don’t simply “leave” their children. Just because we had a child with complex medical needs and a disability, that didn’t mean that caring for her was a burden.

But guess what? We got burnt, with all the hospital admissions, the therapy appointments, the constant watch and the constant care, we forgot to breathe.

We forgot that we were human and we forgot that we also had needs.

The time came that I thought that I might very well break, I was weak at the knees from caring for Piper whilst also keeping the rest of my family, including my two other children, going.

I messaged Angela and I said the words I thought I’d never say, I said that I needed help, I needed a break and that I needed a sleep.

Angela immediately spread her angel wings and sprang into action. She not only organised accommodation and support for Piper but also confirmed that my husband and I could stay in the Family Accommodation, close enough to respond to any emergencies but far enough away to reinforce that Piper’s care and required supervision was not our responsibility.

Even so, it felt awkward to us. We were admitted into a facility and the reality of our circumstances hit home.

I wanted to reverse out of there and Angela knew it. Angela remained by my side and gave me a knowing smile. I initially thought it was because she knew that she had tricked me, that the hospice wasn’t as heavenly as she had made out but that it was time for me to surrender but I was wrong.

Angela’s smile was a result of her knowing what was to come.

It was too soon to know what was to come, happiness was to come, support, understanding, and reassurance were all to come and all these qualities were held between the walls of Very Special Kids’ Hospice and in the hearts of the staff.

Complete indulgence and utter spoils were also to come for my little girl. The utmost level of medical care, attention and supervision were strikingly evident and with these observations, I found myself being introduced to a feeling of relief, a feeling that has been yearned for even before I had identified its need.

Perhaps Angela could see this need in me from the moment that we met? Not because I wasn’t necessarily coping or that I was sinking in a deep dark depression but perhaps because she is trained to reinforce to us, that as parents of children with complex needs, it is pivotal that we look after ourselves too.

Our stay at the VSK Hospice reminded me of the numerous times that I have read the safety card on board aircraft were it is simply stipulated that it is necessary to put the oxygen mask on yourself before you place it on your child. Without following these crucial steps neither of you may survive.

From parent to parent, I remind you to allow yourselves to breathe, take the break that both you and your child deserve. I can assure you with a heart full of confidence that the staff at the hospice will envelop you in reassurance.

To all of the people at Very Special Kids, I thank you for the gift of breath that you have provided us.

And to Angela, I thank you for your gentle encouragement, your guidance and committed presence in walking beside us on this journey of caring for our little girl.