The life of a full time caregiver to a child with a life-limiting illness is hard. Damn hard. Now, before anyone sends private messages to me that I need to look at the positive side, let me reiterate that I could not have made it 11 plus years on this journey – alone – were it not for me being a positive, optimistic, glass half full kind of woman.  So, moving on from there. The life of a full time caregiver to a child with a life-limiting illness is hard. Damn hard. Yes, I know, I repeated myself.

There are costs associated with this journey, and I am not referring to the financial costs, although we all know those are great as well. I am instead referring to the emotional, physical and psychological costs. It is these costs, that if not tended to, can lead to a breakdown of the caring role, support within the special needs community, and the family.

THE COST OF CARING:

I personally have been on this journey with my son Brendan Bjorn for over 11 years. As a single mother, and an “older” mother at that, it has taken its toll on me. Physically, my back is pretty much shot thanks to degenerative disks in my lower back. And, I have arthritis. And, I just turned 50 in December (yes, I know…ugh!). While I have committed myself to exercising daily and getting in better shape, this life can be restrictive of that happening because people in my shoes can’t just grab their kids and go for a hike (like I used to do every weekend and that is something I desperately miss…bring in the emotional and psychological costs of this journey here), go for a run, hop on a bicycle or go to a gym.

Most of us parents continue to lift our disabled child – unless of course we happen to be one of the very few blessed ones who live in a house that allows for a lift to fit through doorways and a shower room that is adapted for a disabled child and a lift system. Personally, I have never had that, so, it is my body that is the lift to his 33 kilos (73 pounds)…and there is one cost in caring: Down the road, it will be parents like me who will suffer physical ailments because of the lack of assistance given to us, primarily by the government not recognising the short and long term benefits and/or consequences of them not caring to provide the assistance we desperately need. We need our government to care, not only for our fragile children, but for us, the parents who are on the front line every day and every night. WE are also in need of help to safeguard our own health and wellbeing. This is one of the costs, one of the tremendous costs, of us caring, and them not caring.

THE COST OF NOT CARING:

It has been said to me in the past that I should just put my son in a residential home and get on with my life, get on with my dreams. It has been said to me in the past that I should have aborted my son (I didn’t know, by the way, that he had severe brain damage until he was a month old…not that it would have changed anything). I have been told that he has no quality of life, so when he dies, well…it’s for the better, isn’t it. I’ve learned over these 11 years that comments such as these speak to the lack of understanding by the people who said them. They don’t see the beauty in this journey. They haven’t had their soul touched by unconditional love like I have. And for that, I feel sorry for them. Having said that, comments such as those do take their toll emotionally as we care for a child that ultimately we know we will lose. We need supported, not knocked back.

Within the special needs community there is also an air of not caring. Maybe it is better termed as an underlying level of competition. I don’t blame the parents…for the most part…but instead, again, the government who only provides scraps of assistance which leaves all of us clawing and fighting for whatever we can get. It should NOT have to be this way. All of us who have a profoundly disabled, medically fragile child such as my son should be able to regularly receive respite, including overnight respite either in home if it best suits the child’s needs, or in an appropriate respite centre. We are physically, emotionally and mentally exhausted much of the time. And for those of us with no family support, it is compounded. In the long term, if the government continues to ignore our needs as well as our special children, it will be our generation who will be knocking at their door needing services down the road. Preventative care is less costly (on all levels) than waiting until problems exist.

Our special angels are just as valuable as healthy, able-bodied children. We caregivers who are unable to work outside the home because of our fragile children are just as valuable as those parents who are out there in the workforce paying taxes. And let it be heard clearly, I don’t know anyone among us who wouldn’t prefer to be back out in the workforce, continuing our careers, having daily interaction and conversation with fellow adults and professionals. I for one miss that tremendously. This is yet another cost worthy of being noted, for it also weighs on us parents, emotionally and psychologically, who had a career we have been required to put on hold in order to care for our child. And when the time comes that our angel transitions, some of us will have a gap of years where we’ve not been active in our professional field yet must then jump straight back into the workforce after our child dies. Can you imagine how difficult that will be? Will our government be there to help with this monumental transition if they are not even present to help see us through our current challenges?

There is a great cost in caring. But there is a greater cost in NOT caring.

THE CHOICE SHOULD ALWAYS BE MADE TO CARE.