Let’s have a talk about caring.

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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:

  1. 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!
  2. 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.
  3. 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? 
  4. 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.
  5. 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. 

 

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8 thoughts on “Let’s have a talk about caring.

  1. aismc

    So well put Tracy. Many Carers are looking after children 24/7 with so little or no support. We are administering medicine and therapy akin to a nurse under the watchful eye of a team of other nurses and doctors. Not many people understand our role as Carers. This piece gives an insight into our daily lives & the huge responsibility on our shoulders which are already weighed down with the responsibility of all our other roles. We have to manage all our roles and also be parent and often to other children too. So we are not ‘just’ a mom or ‘just’ a carer. We are so many other things to our beautiful special children. We love our children and we would do anything for them.

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    • Louise

      Hi Tracy

      I have just found your blog and can relate to your honest open words. You are a brave lady!

      I live in England but face many challenges like yourself, with raising a disabled child with a life limiting condition.

      I felt quite desperate yesterday from the pressure and exhaustion over the last few months. Tried to pull myself up again for my two wonderful daughter’s.

      I hope you have some joy and rest this Christmas.

      Best wishes
      Louise

      Like

  2. Paul Kelleher

    All your comments very well put together and so very relevant. Irish governments are too concerned about external problems and foreign perception to the detriment of Irish problems. We have the money and the means but it is not being spent on internal Irish problem areas.

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  3. CARMEL MC DONNELL

    Now you are TALKING!!! So well said Tracy—I read the unforgettable words written by Brendan O Connor @Independent_ie yesterday and i replied in a tweet—“Go Hiontach!”❤ cuts to the core+complexity of REALITY+distills the ongoing “narrative”for Debate so we can be Truly (+fully)Human
    I believe the debate is inextricably linked to debate re location of our Children’s Hospital—It’s about Children —it’s about caring for them —
    Easing the journey–bringing care closer to those who need it –
    The most loving thing we the people of Ireland (including our decision makers) can do for the Children is listen to, love,care for and support those caring for them.
    Let’s join the dots in the debate-re supports services/infrastructure-and Create the future where we can be fully human together❤

    Like

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