As I look into her six year old eyes, I am struck by the openness and trust that I see.  As she stares back at me she is working hard with her respirations as she fights yet another chest infection.  This is the third one in quick succession and her parents are exhausted.  She is weary as she draws air in with her chest rising and falling rapidly.  The oxygen has eased some of the respiratory distress and all is being done by both health professionals and her family to keep her comfortable.  She lives with a rare health condition and every winter is harsh on her body.

As I speak to her assessing her need for medication or change of position her eyes convey she understands I am trying to help.  There is no energy to talk.  Her parents stand together watching as I gently make my assessment; they are quietly updating me on the last 24 hours.  There is a ‘hushed’ way of being in her bedroom as we recognise the effort it is taking her to breathe and not wanting to distract from this.  Sleep has been evasive for all of them due to the close monitoring, suctioning and need for medication to keep her comfortable.  If she ‘plugs off’ with secretions blocking her airway this can be fatal if not witnessed.  Her parents have seen this too many times and are aware they need to act rapidly with changing her position, physio and suctioning.  It is frightening.

“As I look into her parent’s eyes, I see the exhaustion; but beyond that, the same openness and trust that are in their daughter’s eyes.”

They are so expert in their daughter’s condition, and there is no one who knows her like they do.  However, they are so appreciative of the visit.  Someone to ‘share’ the burden of responsibility and to ‘witness’ what is happening for them as a family.  Their other two children spend some time at the house and at other times with friends and grandparents.  They too are unsettled and it is evident in behavioural changes as their sense of ‘normality’ is suspended at this time.

Winter is the most challenging season for children who are medically fragile and susceptible to every infection there is.  These viral and bacterial illnesses are life-threatening for children living with such complex health conditions.  Parents are often faced with difficult decision making regarding the treatment of their child, weighing up the cost to quality of life and intervention.  The impact on each family member at a physical and emotional level can not be underestimated.  There is an urgent need for families to have further funding and resources to provide care in the home for their child.  It is difficult to put into words the vast needs of each family.

The Child Action Poverty Group in their report (‘It shouldn’t be this hard: children, poverty, and disability’, 2015), acknowledge that a programme that wraps around the child and family, along with specialist support if required, would be of the greatest help to parents.  A quote from a caregiver interviewed in this report stated;

It makes you want to shake politicians and tell them that the real heroes in this country are the parents who have daily struggles to get their children up, fed, clothed, accepted at school, resourced, included in their community (all of it) and then do all the other things expected of them – work, home family, be a daughter, sister, wife, [and] mother to all their children”.

While there is more awareness of the needs for children with health and disability conditions, there is still much work to be done.

As I looked into her eyes, I not only saw trust, I saw the courage that keeps her fighting through this latest infection.  It is our role to help her to keep this courage shining through.