I’m not amazing, but my son Brendan Bjorn is extraordinarily amazing. He brings to the world the rare opportunity to experience true unconditional love. By being in your life, he brings the potential for you to learn empathetic patience, to develop deep spiritual gratitude, to examine your faith in God, the world and humankind, and ultimately, he brings you…me…to the hardest lesson one will ever be challenged with – how to one day let go of their own precious child.

I’m not amazing, but my youngest son, Declan, is incredibly amazing. Last night while he lay in his bed and I was giving Brendan Bjorn his medications, out of the blue Declan said, “Brendan is very special. I don’t know why the government makes you fight so hard just because Brendan is different. Sure, different is actually special.” Out of the mouth of babes. Declan is only 8 years old, but as Brendan’s younger brother, he has seen a world most people can’t even fathom. That world presents challenges, but it is also molding him into the most compassionate of souls I know. I haven’t stopped thinking about his precociously insightful comment since he said it last night. What a treasure he is, just like his brother.

I’m not amazing, I am just doing what I need to do. And I don’t want to be called amazing, because my fear is that if those who have the ability to help me also think I am amazing, they then won’t see any reason to provide the assistance so desperately needed by parents like me. If I am amazing, I must not need help. If I am amazing, the government will continue to leave me to care unassisted for my son who is indeed truly amazing, but who is so very medically fragile, rather than them providing the assistance for us to live, not just merely try to exist. If I am amazing, friends won’t think of me crying behind my closed door, when – as I said last week during an interview on the Pat Kenny Tonight show – I am often doing just that:

Crying behind closed doors whilst down on my knees wondering how I am going to continue doing this level of care as a lone parent with far too little assistance. 

I don’t have an answer to that question. All I know is that I can’t keep quiet any longer. I am sinking in the abyss that is this life caring for a severely disabled child with profound care needs. I cannot allow myself to sink, for my boys would go down with me, and that I will not tolerate. So, through my many tears, I will keep speaking up for my son Brendan to have equal human rights and a chance to live his albeit limited life to its absolute fullest potential…and for all of the children like him in Ireland who have profound care needs to have those same equal rights and all the dignity and opportunity in life that goes along with it. And, for carers like me, I will continue to speak up about our rights, too, because our own bodies are literally being destroyed, our mental health is suffering, our financial security no longer exists, and our personal and professional lives are often shattered into many tiny bits that trail behind us as each year passes.

I am in chronic pain; I struggle with depression and anxiety; I eat foods for comfort that I shouldn’t eat; I am often trapped inside my house for days on end caring for my son; I don’t get the chance to get time for myself to recharge, centre myself, or remember the woman that I was; I cry far too often; and I frequently feel unheard, unliked, and ignored.

No, I am definitely not amazing, but I do believe we are all given certain opportunities in our life to do something amazing; to facilitate changes that will be amazing for other people’s lives, if not our own. Whether we take up that opportunity or not is up to each of us.

May those public servants who have the power to create the changes that would so positively affect the lives of our country’s special families, take up that opportunity to do something amazing.