When I was a little girl, I used to dream about how my life would look when I grew up. I would have a house, 2 kids, live in the mountains in a big log house on acres of land that had a stream running through it. I would have horses and dogs and want for nothing. I would go on hikes in the hills with my children. I would be a writer living a peaceful life in the quiet serenity tucked away amongst the tall pines. I would be content…even blissful…in this simplistic life.

I’ve learned on this journey with a child who has a life-limiting condition and many medical complexities, that we must learn to dream new dreams. At the very least, to modify those dreams. And so, here I sit, daydreaming about what I would do with even a fraction of that lottery win (that is, if I were to ever win it) or with say a tiny sliver of the 13 Billion euro the EU just today declared Apple must pay in taxes that Ireland neglected to charge them. Ahhh…what I would do. The mansion…the Jaguar…the holidays abroad…

What would I do with even €500,00 if, by some miracle from above, it was handed to me today? Here’s what…

I would buy a house suitable for my son Brendan Bjorn – maybe even that one currently for sale around the corner in the tiny village I live in. You see, it has hallways wider than I’ve ever seen in a house before. Yeah, I’m excited by hallways! Do you know how easy it would be to push Brendan in his wheelchair down that hallway? To turn his chair into his bedroom or the bathroom without banging into the walls and doorways? To be able to use a lift system finally because he would fit in that width without hitting his head on the walls to either side? The log house in the mountains from my childhood dreams wouldn’t suit him. This is where dreaming new dreams comes into play. It’s not about me anymore.

It is about making his short life the very best it can be.

And if I bought a house, rather than rent as we currently do, I could have the bathroom modified into a wet room so that a proper bath table could be used. I’d buy that too. And, owning a house, I could also get a ceiling hoist system put in so I could easily transfer Brendan from bed to bath to chair. At the moment, I carry him from place to place, all 33 kilos of his entirely flaccid body that cannot even lift his beautiful head to help me. At the moment, he lays in an old bath chair that sits precariously within the bathtub, still too low to save my back with degenerating discs from hurting as I wash his fragile body.  I would put in a permanent ramp system, stable and secure, to finally wheel him in from the outside into the home with a smooth, easy transition. I would stock up on supplies that he needs such as baby wipes and disposable incontinence sheets. And if there was enough money left over, I would add a sunroom, with windows on all sides so he could look out at the trees blowing in the wind. That is one of his favourite things in the world to do. I could give that to him.

I would buy a new-to-me, reliable and definitely automatic transmission wheelchair accessible van. The old one I have now has more dash lights going off in it than a Christmas tree. It’s also a manual transmission and my left foot is in need of surgery so the pain every time I drive is, let’s just say, not very fun.  (Side note: the surgery is on hold because who can take 2 to 3 months to recover when being a full time carer to a severely disabled child? Right. It’s just not going to happen.)

I would get a puppy for my other son, who deserves the world for all he sacrifices. And I’d get the laptop he’s been asking for these past couple of years. Ok, also throw in an X-box game or two, for good measure.

And finally, I would start a retirement fund. A safety net. A savings account that would give me the peace of mind knowing that I won’t end up on the street in my old age (yes this is a real fear, so don’t discount it. Families in my shoes often struggle financially, having had to cash in any retirement funds and savings for their child’s special care) and so that Declan will be able to go to University and make a good life for himself when he grows up.

We do learn to dream new dreams. When you know you are going to lose your child some day, you learn that dreams can be illusive, liquid, changing, and fleeting. Your dreams become more realistic, shall we say. More down to earth. I used to dream many things, including that my son would be miraculously healed. Again, that simply is not the reality of this journey. I have reluctantly, but fully, accepted that reality. So what I dream now is for the best life for my sons, and for those few material objects that will allow me to care for Brendan, actually for both of them, for as long as I can.

So, I don’t need a mansion. I don’t want a Jaguar. The other 99% can keep those things.

I’ll take the bungalow and the van.

19/07/2016: Tracy McGinnis with her son Brendan 11, from Ticknevin Co Kildare, who has severe brain damage. © Picture: JOHN COGILL (Credit Photographer)

Merriam-Webster defines an advocate as this:

1:  one that pleads the cause of another; specifically : one that pleads the cause of another before a tribunal or judicial court
2:  one that defends or maintains a cause or proposal
3:  one that supports or promotes the interests of another

Oxford English Dictionary defines an advocate as this:

For whom or for what cause do you advocate?
If you aren’t an advocate for someone or some cause, why not? 

I learned early on in this journey with my son Brendan Bjorn that if I was to see him have the best quality of life possible during his limited amount of years, I would need to become an advocate for him. I found my voice – and the gumption that it takes to raise one’s voice against those who society tells us know better (ie: doctors, politicians, various other care specialists, etc). I learned to question everything, accept nothing blindly, and to research as if his life depended on it. Guess what? It did, and does, depend on it.

I have saved my son’s life many times over simply by being an advocate. 

I don’t say this to pat myself on the back in any form. I have simply done what I felt needed to be done as his mother. Rather, I say this to encourage each of you reading this to do the same. You CAN and you WILL make a difference in the life of your child with a life-limiting illness or disability by being a voice for them where they can’t be for themselves.

Even if you don’t have a child on this journey,
I implore you, the caring reader,
to become an advocate for these special children.

Help our families speak out, because many of us can’t find the words…or the energy…to raise our voices. We need our local and national communities to get behind us and help us advocate. We need your voices to join in with ours.

Being an advocate wasn’t always easy for me. First, I had to overcome any lack of confidence about whatever the subject matter was. Researching and learning all about the subject was key. Then there was coming to the realisation that medical consultants are no better than myself. That one came quite easily and quickly, actually, as soon as I asked questions for which they had no answer. (So, they aren’t Gods sitting up on a pedestal after all!) I have seen too many parents over the past nearly 12 years on this journey be too afraid to question or doubt their child’s specialist. But we must. Remember – we are the voice for our children. We are their advocates. Educate yourself about all aspects of your child’s condition and then find your gumption!

Being an advocate, over time you will develop a teflon-coated skin. Yep, just let those comments and glares from the nurses or doctors or even politicians slide right off your back as you fight for what is best for your child. That life you just saved by being an advocate could be your own child’s. I can’t even begin to tell you how many times I’ve been on the receiving end of those looks and even comments. I have to laugh as I sit here writing this as the memories are humorous in a way. You know, I am “that” mom. Some have called me the B word (that one that rhymes with witch! haha!) but mostly I get told I’m the “momma bear.” That one I’ll accept. And here’s a little secret for my fellow parents: The doctors that are worth their weight in gold are the ones that appreciate your questions, doubts, and the fact you voice your concerns. If they don’t, they have the problem, not you. Keep doing what you need to do!

As the years pass on this journey with a child who has a life-limiting illness, oftentimes we expand our advocacy efforts to the overall cause of life with a disabled, medically fragile child. Yes, that’s right, advocating for political and/or social changes regarding treatment and services for not only our own child, but for all children within this very special group. I have always seen this as part of my son’s legacy. If it wasn’t for him, I would likely have never been involved in this world of special needs and disability. When we advocate for needed improvements – a higher quality of medical services, more respite, shorter waiting lists, special equipment in a timely manner, etc – we help assure a better quality of life for ALL of these special angels, now and in the future, not just for our own now.

So, for all our special angels, be an advocate.

It’s not a pretty relationship: Self-worth and being a full time carer to your child with a life-limiting illness. There are countless reasons why we battle with depression, and the struggle with our self-worth is just one of those reasons. I’ll narrow it down to what I find to be the top 5 reasons.

So why, the unknowing reader not walking on this journey would ask, would you not have to most incredible amount of self-worth considering the selfless work that you do??!! And I think therein lies one of the reasons.

• 1. Selflessness. Parents on this journey seldom get the time to focus on themselves. When we do get a semblance of free time, we tend to collapse into this state of mental mush. Or we grab the chocolate. And maybe the wine as well. But the gym, a nice afternoon hike through the forest to recharge and recentre, an afternoon shopping for things we don’t need and that are actually for ourselves…those are just pipe dreams to us. Now if a miracle happened and we actually got to do one of those things, we’d probably feel some level of guilt because surely there is something else we should be doing, like taking care of our fragile child. At the very least, that child is on our mind while out of our sight and we are worried about how they are doing.

• 2. Financial independence. Refer back to reason 1 above and the shopping trip for things we don’t need and that are actually for ourselves. It simply doesn’t happen anymore. The majority of us can’t work outside the home because of the demands in caring for our angel with the life-limiting illness. And while I full-heartedly believe that carers such as myself should be paid a decent full time living wage for the demanding, skilled work that we do (may I suggest a nurse’s wage), the fact is we don’t get paid. Please let that soak in, dear reader not in our shoes, that not being paid does indeed affect our self-worth, especially those of us who used to have a professional career and brought in a nice salary. We don’t want to be dependent on anyone or on the State. We want to be financially independent. We can’t. I know for myself, I can attest to what an internal struggle that is! I used to own my own home, had nice furnishings inside the home, lovely landscaping outside that I was able to do on my own. Now, it is all gone. Career is not only on hold but gone quite cold in the years since I’ve been able to work in my field. It isn’t just men who have self-worth tied to being able to earn an income. That is an incorrect assumption.

• 3. Weight. Yes, I am yet again revealing one of the secrets of parents on our journey, especially the mothers – we tend to stress and comfort eat. No, not broccoli and carrots, so go away with that notion right now. Referring again back to reason 1 above. See the mention of chocolate? There ya go. Carbs are also a favourite…sweet breads, pastas, cookies, cakes. Did I mention chocolate yet? Oh yeah, and because we can’t get to the gym or take those hikes (let alone a daily walk!), we don’t get enough exercise. And please, don’t harp on us about it. We know. We know all too well. And there goes another nibble at our self-worth and another pound on our depression scale. Puns intended.

• 4. Health. This reason is multifaceted. To begin with, our own body gets more and more taxed over the years of caring for our disabled child. We lift our child day in and day out in all sorts of angles that the physios say not to do. They don’t live in our homes, though, so really they don’t understand why we have to do what we do. So, there we are with our own bodies breaking down over the years of care. Now add some extra weight (writer clears throat in admission of guilt). Then enter into the equation illnesses that seem to strike caregivers at a higher level than the rest of the population – autoimmune diseases. Myself, I was diagnosed with rheumatoid arthritis in 2012, and two years before that with degenerative disks in my lower back. This very month I discovered I get to add high blood pressure and high cholesterol to the mix. I know, I know, I’m a real mess. Do I even need to refer back to reason 3? Anyway, yes, self-worth is attacked as we see our own bodies not be able to do what we once were capable of doing. It hurts emotionally, deeply, not just physically. We need you to hear that.

• 5. Isolation. You know that trip to the shop to get groceries you took today? That is about the extent of our adventures abroad. We don’t get to have the banter or intelligent conversation or mental stimulation that working outside the home brings. We are often stuck inside our own heads, often speaking solely to our fragile child who cannot converse back to us. Our spouses are away for the day at work or even just off visiting friends (and yes, that IS hard for us, to be sure!) while we are home caring…selflessly…for our child who will one day gain angel wings. We don’t get many phone calls from friends because they usually are afraid they will be interrupting us as we change a nappy or such, which is sadly often what happens when the phone does ring. People don’t invite us over because of all that it would entail with our special child. People often don’t just drop by because, well, they just don’t.

There we are: the battle to maintain a positive self-worth and keep depression at bay in the midst of struggling financially, feeling isolated, dealing with our own health and weight issues, all while working 24/7 to care for our child who we know will one day pass away. We want you, the one not on this journey, to try to understand, try to gain empathy and compassion, so that you can maybe see just why we struggle in these areas.

                               For remember, it just may be YOU, gentle reader,                                     who is the one to hand us a lifeline. 

Who cares for the carer when they need care? That is a complicated question. Or rather, the answer is what’s complicated.

Carers can be great at lying. Not that we are liars, per se. Ask us how we are. Fine, thanks for asking. And bam! There’s the lie. A few select people close to a carer will know – and get – the truth. They get the tears, the breakdowns, the misdirected anger resulting from the pain of struggle having built up for weeks only to spew out in some form of emotional vomit. Projectile vomit at that. (Don’t be grossed out. We live with that stuff.)

It’s the ones who really love you that stay around after they have been vomited on in that way. And we carers thank each and every one of you very special people in our lives. But don’t worry, we will probably be right there cleaning it up once we’ve done it. That’s just what we do. It’s ingrained in us.

Back to the question of who cares for the carer when they need care.                                         The answer is: I’m not really sure.

We as carers of children with a life-limiting illness are often told “make sure you take care of yourself, too.” And while that is, of course, excellent advice, it doesn’t often work that way. You see, we are usually too busy taking care of others while we run on fumes. Recharging our own batteries would take time, and energy, away from the caring. And if we did take that time, we often return to twice as much work. Kind of like when you take time off from your paid employment. You come back to a desk with twice as much work. So, truth be told, we really don’t get the chance to take care of ourselves.

Yes, an absolute big fat YES, we need to take care of ourselves. But sometimes, just sometimes (I lied there, we need this more than sometimes), we need someone to care for us…nurture us, cradle us in arms of comfort, tell us that everything is handled and we don’t need to do a thing (and then most importantly, actually have that be the reality).

That is what we need – and deserve. Thing is, even if we don’t get it, we will probably continue on as we were, lying to most about how well we are doing. Except, of course, for those lucky few who get emotionally vomited on. Sorry about that, dear friends. Be rest assured we will clean it up.