Recently here in Ireland, there was a very tragic real-life story playing out before all our eyes in the national news. Every one of us who care for our disabled child watched with much emotion as the trial of a mother came to a conclusion and the jury reached a unanimous verdict of not-guilty of manslaughter. Her severely disabled 11 year old daughter died while under her care. The mother, who is also a GP, was accused of causing her death by administering too much chloral hydrate. (Irish Independent article)
I am NOT here to discuss the particulars of the case. I was not in the courtroom. I do not know anything more than what I saw on the TV or read in online media sources. Yes, I definitely have my own thoughts and opinions, but I will keep them to myself, at least at this point in time which finds our special needs community with still very raw emotion and opinions regarding this case.
What I AM here to write about is the situation that we, as carers of severely disabled, very fragile children with a life-limiting condition, find ourselves in – and the lack of supportive services to help us on this journey, which no one can truly understand unless they are with us walking on this path.
This case hit us all very hard for many reasons. Here are just a few of them:
- We have been in the position of holding our fragile angel’s life in our hands. Let that sink in. We have the drugs at our fingertips which can save a life when a seizure takes cruel hold of our precious child…or, if too much is given, can end life itself. Do you hear that, dear reader not in our world? We have a level of responsibility that a typical parent cannot begin to fathom!!! The weight of that can be TREMENDOUS!
- Many of us, like myself, care for our fragile child 24/7. I personally get no respite other than what is available through the amazing (and only!) children’s hospice in Ireland, the fabulous LauraLynn Children’s Hospice. (I get no home respite at the moment because it has been decided that my son requires TWO people to care for him, not just one nurse. There isn’t funding for that. So, ONE person is left to care for him without respite: ME.) The level of pressure on us is indescribable. Take note: It is not just parenting. I’ve heard that too many times…”but you’re just being a parent.” No, no we aren’t. We are being a paramedic, a nurse, a doctor, a therapist, a social worker, a secretary managing a highly complex case, a hospice worker, a manual labourer, a pharmacist, all on call 24/7, and yes…then we are also a parent. A loving, hopeful, shattered, exhausted parent.
- Do we get enough support (physically/hands on help, financially, service-wise, mental health-wise, respite, special education, etc) from our health service and/or government? Do we? What does this above mentioned case say regarding the question I just posed? If she had more help, would the outcome have been different? I dare to ask the question many are afraid to ask. And I dare to ask it because I worry greatly that there could be more tragedies such as this one. Quite simply put: We are called to provide a level of care that, would it be done in hospital, it would be carried out by a team of specialists. We do it on our own, in our home. So I ask again…Do we get enough support?
- Mental health. That taboo subject that we all brush under the rug. The elephant in the room we don’t let our gaze fall upon. I have written before about depression and anxiety, two challenges many of us parents on this journey face daily. It MUST be addressed! It MUST be talked about without any shame or stigma. Why? Because our children’s lives depend upon it! If we don’t, our children will not get the level of care they so rightly deserve and, frankly, need in order to survive.
- Whether we admit it or not, be it to ourselves or another person, there have been fleeting moments of wondering if our angel would be more at peace gaining his or her angel wings. I am NOT at all saying we consider taking our own child’s life! What I am saying is that when our child is suffering, in pain, having seizures, in hospital for weeks on end, or unable to tolerate even slow peg fed formula anymore, we just may wonder why, and to what end, do we do all we do. Love, of course, is the answer. But please, let’s not ignore those moments when our souls are so heavy that we desperately ache for help, for someone to reach out their hand, for services to be provided that can and will lift some of this seemingly invisible weight which we carry.
My hope is that by discussing these subjects, we can create a national discussion that will facilitate positive change in our community and in Ireland for the thousands of families who have a child with severe special needs and/or a life-limiting condition.
THE CURRENT SITUATION NEEDS TO IMPROVE FOR OUR FAMILIES.
CHANGES MUST HAPPEN, AND HAPPEN SOON. LIVES DEPEND ON IT.
FOR OUR SPECIAL ANGELS, WE NEED TO SPEAK OUT, REACH OUT, AND NOT REMAIN SILENT IN OUR HOMES AS WE TRY TO GET THROUGH EACH DAY.