I wonder about so many things when it comes to my son, Brendan Bjorn.
I wish countless wishes for him, some of which I’ll never know if they come true.
And I hope constantly, relentlessly, often to the point of mental and spiritual exhaustion.

This is a glimpse into the journey with a child who has severe disability and life-limiting illness…

I wonder if you’re content, and maybe even happy, to be restricted to just watching your younger brother and his friends play with the reckless abandon that comes with being little boys. I see you smiling. I hear you laughing. I hope you’re not aching to join in with them in the play you’ve never known. I wish more than anything that you could. I wish I could heal you with some miraculous touch.

I wonder if when you’re in a seizure, you are frightened, feeling alone and as out of control as your own body so cruelly is as it convulses non-stop. I hope you’re not afraid. I hope you know I am right next to you, holding you, loving you, protecting you with all that I am. I wish you never had a seizure. I wish I could take the epilepsy away. And I wish it didn’t steal what few abilities you used to have…but it did.

I wonder if you miss the experience of eating food, chewing and tasting your favourite flavours long since taken away and replaced by a tube inserted in your stomach. I see you open your mouth once in awhile when I am eating and I wonder. I hope it doesn’t upset you. I hope you aren’t hungry and I can’t tell. I wish I could give you a plate full of food and see you gulp it down in the rush to get outside and play. I wish I could yell at you to slow down. I wish you could chew…and I wish you could swallow it without the dangers of aspiration.

I wonder if you have questions, thoughts, feelings that you cannot express because you cannot speak or write or communicate in any form beyond what I can read on your handsome face. I hope I am giving you what you want, what you need, what you desire. I wish I could read your mind. I wish I could know just how you feel.

I wonder if you realise the depth of what you have brought to my life…the love, the lessons, the inspiration, the joy, and even the heartache. I wonder if you know. I hope that you do. And I hope that you know how you have touched so many lives, not just my own, and for that we will never be the same. We have been blessed by you. I wish I could give to you even half of what you have given to me.

And I wonder if you will wait for me to be at your side when it comes time for you to fly, my precious angel boy. Will you, in your understanding of life that the rest of us can’t even see or grasp, know that my heart would be forever shattered into a million pieces unable to be put back together if I can’t hold you in my arms as you release your soul to fly. I hope you will wait for me to say goodbye…to set you free.

I wish my wishes could come true…

 

It’s a complicated thing, this journey with a child who has severe disabilities and a life-limiting illness. After 12 years, I’ve come to the solid conclusion that no matter how “outsiders” try to understand, they simply cannot. If you haven’t lived 24/7/365 in the house of someone on this journey, than you won’t understand. At least not fully. Friends, family, even new life partners that come in on the journey midstream, look in from the outside. They won’t fully understand because it doesn’t impact every minute of their lives like it does the one who is the full time, constant, carer. In fact, I think for the most part, it is still the mothers of these precious earth angels that truly, intimately, understand what this life entails. And, what it does to us as individuals, as a woman, as the person we used to be but now, often desperately, try to find glimpses of as we row our boat against the current. It is in this complicated, unspoken, and often tenuous understanding that we form a bond of solidarity which gives us strength and support that we quite frankly cannot find elsewhere…because again, no one else truly understands.

With solidarity we can lift each other up, ready to carry on another day when we ourselves don’t think we can.

As I lay in bed last night, it dawned on me that I didn’t go anywhere last week on my own, bar the 5 minute walk from my house to my youngest son’s school. Short of that, I always had one of my two sons with me. Now having said that, a level of guilt creeps in as I know far too many fellow mums who have lost their angel, as I will someday mine, and I know they would give anything to spend even another minute with their child. I even think that when it is my turn on this journey to be in their shoes, I will look back and feel badly toward myself for wishing I had those moments where I could just have a bit of peaceful solitude. I am sorry – now and in advance – for wishing this wish of even just an afternoon of nothingness, peace, quiet, beautiful solitude. Dare I even use the word freedom?

In those much needed but all too rare moments of solitude, we can release, recenter, recharge, and simply BE.

Yesterday, while out at the grocery store with my earth angel Brendan Bjorn, I made a quick stop at the bicycle shop. For 5 euros, I bought myself a bit of joy. I bought myself a fun reminder of when life was simpler. I bought myself that feeling of childhood freedom that comes with having nothing heavy on your heart and mind, only the feel of the wind on your face as you coast downhill on your bike. For 5 euros, I bought the most special-to-me purple and silver handlebar tassels…and with a giggle I put them on my bike and smiled, content in a way you wouldn’t understand unless you know what it is like to ache for that feeling of gently comforting solitude you get when, finally, you have a few minutes alone not having to hold your child’s fragile life constantly in your hands.

We don’t get enough of it.
We need more of it.
We need to feel the wind on our face as we coast downhill, smiling in abandon in that fleeting moment of freedom…

 

 

 

Having a child with a life-limiting illness will either make you or it will break you. In fact, I think it does a bit of both. Ironic, but somehow, this journey works in the way of the yin-yang. Light and Dark. Positive and Negative. Strong and Weak. Walking on a cloud or down on your knees.

Some days on this journey, you get that yin-yang effect in the matter of 60 seconds.

I have two sons. My eldest, Brendan Bjorn, who is my child that is severely disabled, medically fragile, medically complex, and whose condition is life-limiting. My youngest, Declan, who started 3rd class at our local school just this morning. They are both the lights of my life. They are truly what keeps me going on so many levels I couldn’t even describe it adequately myself. They are my heart, quite simply.

The joy this morning was walking my youngest son to school. His first day of 3rd class! The excitement! The pride! The love! His freckled face smiling and his green-gold eyes sparkling as we walked down the country lane chatting about what his first day would be like. Hopes, dreams, and the future. It was so beautiful.

The fear this morning was as soon as I returned home. Brendan went into yet another grand mal seizure. The joy left and the fear jumped in it’s place. Yin and Yang. I learned long ago that you don’t have one without the other. From the smiling, freckle-faced son playing with his friends before the school door opened, to the beautiful, fragile, son convulsing out of control and not breathing. The automatic response system within me took over: Time the seizure; Monitor his O2 and heart rate; Make sure his airway is clear; Make sure his head is in a position that he won’t aspirate his own saliva; Check the clock again; Get the oxygen in hand; Get the rescue med also in hand as 3 minutes approaches…and wait and watch.

That wait and watch that brings fear like you couldn’t understand unless you have actually seen your own child seizing.

Once the seizure is over, there is the postictal phase. That is when the body is in a state of altered consciousness after the seizure. It usually lasts anywhere from 5 to 30 minutes. For my son Brendan Bjorn, his body trembles uncontrollably from head to toe, shivering as if he was left unclothed out on a cold winter’s day. His eyes closed, not fully present with me. I hold him, wrap him in his blanket and in my arms. “It’s ok baby, I’m right here, you’re ok now” I say to him as I stroke his soft, thick brown hair. I don’t know if he knows I am there. I do it anyway. It is during this postictal phase that I can let go of my emotions. We’ve made it through another one. He’s still with me, thankfully. And my head drops down on his weakened body…and the tears come streaming. I don’t try to control them. They need to be released.

And with that over, my angel sleeps. He will be exhausted for the next couple of days, most likely. Me? I will be as well, but in a matter of a few hours my youngest son will be home, full of joy and telling me all about his first day back at school. Yes, the joy to look forward to is something I hold onto with all of my heart. It is the head that needs to hold onto it as well, though. That can be the tricky part, for the mind can wander into places it really should not go too often. There are times, like after a seizure, that parents on this journey with a child who has a life-limiting condition need to not think too much about the fear side of that yin-yang.

Balance is key, albeit an often illusive key. 

We know all too well that you can’t have the yang without the yin, for they are two sides of the same coin, shall we say. They are the two halves which make up the whole. They are LIFE and all that it is made of for us on this special journey.
We take the joy with the fear.
We take the fear with the joy.

And sometimes we have to take them both within 60 seconds of each other.