What does a carer do when they are broken? 

They keep going.

What if they cannot keep going?

That is not an acceptable option.

This morning, I dropped a bottle of one of Brendan’s life-saving medicines onto the hard kitchen tile floor. It shattered. The anti-seizure medicine is made in the UK and shipped here for him every month. (Don’t ask why they won’t compound it in Ireland, because there is no reasonable answer). The entire bottle, now wasted. I carefully picked up the glass shards and then began wiping up the medicine which by then was intertwined with my tears.

The bottle shattered. I shattered.

I went back into his bedroom to give him his 5 twice-daily medications. I had the 60ml syringe filled and in my hand; the water to flush it all down his feeding line was in a measuring cup that I held in my other hand. I came in the room only to discover he had messed in his nappy since I was with him just 10 minutes before. It was everywhere. The W-cushion that keeps his displaced hips in line…the pillows on either side that help hold his trunk steady while he sleeps…the underpad…the blanket…his shirt…

As I cleaned him, he began to laugh. No, that’s not a good thing when he is laying back flat. Yes, he began to gag because he was laughing so hard. With soiled hands I grabbed the remote for his bed and quickly raised up the head of the bed. It didn’t matter. It was too late. He began retching, which led to vomiting. He was covered again, this time a different bodily fluid and a different part of his body.

When he was done, he started laughing again. My angel who finds joy anywhere he can, which is wherever he is, lit up the room with his smile. Through my returning tears, I clearly saw his pure innocence there to remind me I do this for love. I do all of this, every moment of it, for love.

Like the bottle, I felt shattered. In many ways, I believe I will always feel shattered on some level deep within my soul. I feel it even now as I write.

And I wonder, how many other parents of highly complex, medically fragile, severely disabled children feel as I do? I know the answer. The question is largely rhetorical, after all. I know that I am not alone in feeling this way.

But, I do feel alone.

…when there is no one to help me pick up a shattered bottle, or what it symbolises.
…when no one calls me for days on end, or lets my calls go unanswered – yet again.
…when my boys and I spent Christmas alone, just the 3 of us, with no one even bothered to see how we were doing, the Spirit all too lacking.
…when old friends stop making contact, it is always me who – until this moment of resolution – keeps reaching out.
…when people see us trying to navigate through a shop and all they do is stare, or nearly worse yet, divert their eyes, bar the sideways glance they think won’t be caught.
…when I am sick, as I am today, and it matters not, for there’s work to do – no matter what.
…when I lay in bed at night exhausted and in pain and shattered, with no one to count on, but myself.

What does a carer do when they are broken? 

They keep going.

What if they cannot keep going?

That is not an acceptable option.

And my son reminds me, yet again, that I do all of this, every moment of it, for love. 

 

 

It’s that time of year again when all our kids are home for Christmas holidays. I sometimes think of this, and the Easter break, as a test run for the summer holiday. I imagine the angels looking on with humour, “Can she do it? How many days until she breaks? Place your bets, lads, right here…OHHHH! Day one and she’s done. That’s it, all bets are closed, fellas. Time to get to work.”

I had the opportunity (should I call it that?!) to go shopping with my 2 sons yesterday. It wasn’t just the local shop in the village where I can leave them in the van and nip in for a quick grab of milk and bread. No, this was full on shopping. Those of you on this journey know what that means.

It was time for the Holiday Train. 

When you are a single parent to a severely disabled child, you can’t just find a childminder. In fact, you are damn lucky to find respite let alone someone to casually mind your child for a couple hours while you shop. Nurses don’t tend to make themselves available in that way. Go figure, right? So, you pack up all but the kitchen sink into the accessible van and you head off on the first journey of the holidays, in my case, to a Tesco Extra that is a bit over 30 minutes drive from our home.

Park, unload Brendan down the rear ramp, narrowly escaping the oncoming car whose driver was oblivious to anything but the girl sitting next to him, and lock up the van. Crap. I forgot the grocery sacks…again. Here in Ireland that means buying more of them at 79 cents each because they don’t supply them for you. It helps the environment, but I’m pretty sure us special needs parents have far more bags now than we ever needed! Anyway, it seems my mind was preoccupied when I loaded us up in the van at home. Can’t imagine why.

And here comes the train. 

What? A train at Tesco??? Yes, of sorts. Picture this: Brendan in his wheelchair makes up the front of the train. I come next, pushing him in his chair. The caboose is the shopping trolley that I am pulling along behind me, with the wheels that go every which way, making for an entertaining adventure. The looks we get tell the story. Or, do they?

I make light of it here, but in truth, it is hard. Very hard. Some days, like yesterday, when the arthritis in my hands is flared up and quite painful, it is nearly more than I can take. But I have to do it. There is no one else to do it. Parents in my shoes can’t just say, “Hey mum/partner/friend, can you watch him for a bit while I run to the shop?” There is no one to ask. There are no nurses handy.

Someone said to me the other day, “You always seem to land on your feet.” I’ve been thinking about that statement since she said it to me. I feel like half the time I land on my face, not my feet. The other half of the time I feel like I land on my…well…backside. Maybe I am wrong. Maybe I do land on my feet more often than I realise?

I have no choice but to land on my feet, you see. I have to, for my boys. I am their everything, and they are mine. If I land on my face, or my ass, I MUST get right back up onto my feet. There is no choice: I am a single parent of a severely disabled child. And no, it is not the same as being the single parent of a healthy child. I also have one of those and trust me, I know that jumping in the car and running to the shops with him is 100% easier than with a special angel like my Brendan Bjorn.

The Holiday Train: 4 days into the 18 days and I’m already thinking how am I going to make it without a moment alone to myself for the next 14 days. That sounds terrible. I realise that, I really do. It is, however, the truth…and I am not the only carer who is thinking this thought. How will we do it? How DO we do it?

And then there is summer coming…2 months of the Holiday Train.

If you know a parent on this journey, please, reach out to them. Offer a hand, offer a trip to the shop, or even just offer your friendly, compassionate ear to listen, because for us, holidays can be the hardest time of all.

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. 

 

I haven’t written lately. I couldn’t. And as I sit here at my computer, I nearly wonder if I can even now. Life, you see, has been exceptionally hard lately. The words haven’t come; my mind has been too muddled with, well, other things. But as I drove home today after running some errands in a town about 30 minutes away, words started coming to me again. Call it a breakthrough or a breakdown, or both, I’m not really sure.

A few weeks ago, my life took a sudden turn, and since then I have been on my knees…

Emotionally on my knees as love ends and as dreams are abruptly put to an end.
Physically on my knees as I scrub the house that is now becoming a home for myself and my 2 precious sons.
Emotionally as I continue to see my angel’s seizures grow worse as his body grows more tired.
Physically as the pain of rheumatoid arthritis and degenerative discs wreak havoc on this ageing body of mine.
And spiritually, as the realities of life weigh down on my soul…yet again.

I sit here typing on this cold, dark winter’s evening, Brendan Bjorn smiling away next to me in his wheelchair while Declan is in the other room playing on his tablet – the life of an 8 year old boy these days! A few hours ago, I found myself once again on my knees, though this time figuratively.

There I was standing in the gaming section queue at Smyth’s Toys when out of the corner of my eye I saw some really cool scooters and pedal cars. Instantly I thought, “Oh! I should get one of those for Brendan so he can ride along with Declan when he’s on his bike!”  WAIT…where in the hell did that come from?! It has been 12 years on this journey with Brendan Bjorn – who cannot even sit up, let alone walk or ride a bike – and now my mind comes up with THAT?! I repeat, where in the hell did that come from?

I crumbled inside. As I fought back the tears (only to save myself embarrassment amongst the strangers in the queue), I went numb. My mind raced, my heart skipped a beat, and I stood alone in a shop full of people.

I purchased the small Christmas gift for Declan and wandered through the rest of the toy shop. Brendan…a gift for my special boy. I found myself, as we parents on this journey do, in the infant section. A light-up toy? No, he’s got enough of those. A plush toy? No, again, enough of those. I stood there, looking at the rows of toys stacked way above my head. This was even worse than the irrational thought of buying him a scooter. There was nothing “new” I could get him…the boy who deserves all the world could give, yet gets so very little.

This time the tears didn’t maintain their proper place locked up behind my surely all-too-revealing eyes. And with the tears, the hidden but not so hidden depression and anxiety rose up in me despite my best efforts to compose myself. I couldn’t breathe well. The room started to close in on me. Here it was, another panic attack. With that, I went out to my van and sat there until again I could steady my world.

As I drove home, I remembered that it was only yesterday that my son Declan said to me something that at the time surprised me greatly, but now after having thought of buying a scooter for Brendan Bjorn, I wasn’t surprised at all. We were planning to go out for a walk around the neighbourhood. Declan said to me, “Hey, let’s go for a bike ride instead!” I had to gently remind him that we couldn’t do that because there is no way to push Brendan in his wheelchair while we ride our bikes. “Oh, yeah…” he said, and resigned himself to a walk. At the time he said that yesterday, I thought just as I did today at myself, where in the hell did that come from?

And just then, as I drove along the tree lined road on my way home, it came to me.
I know where those nonsensical thoughts came from…

From the place of forgetting.
From the place of dreams.

Those of you on this journey will understand.
Those of you not on this journey probably can’t. But if you could all please just try your best to have compassion toward those of us for whom reality is far, far different than yours, it would make this journey that much less difficult. For the place of forgetting, the place of dreams, is often the mainstream reality…and it is a place we on this journey cannot afford to let ourselves wander into without taking great care to protect our hearts.