I consider myself to be a writer. As a little girl I filled notebooks upon notebooks full of poetry and stories. I just always knew I was meant to be a writer. So, it’s not often when something as simple as a title for a blog stumps me. But then again, emotion has a way of creeping in, doesn’t it? Now there is something that can and does influence a writer, either stopping her from writing or facilitating the flow of the writing. Remembering Me. The emotions? Guilt, selfishness, self-centeredness, and then more guilt. You see, there is some level of societal disapproval, be it spoken or unspoken, when a mother wants to put herself before her child, if even for a few hours…never mind a few days. Add to the mix the child being medically fragile, severely disabled, and all those emotions are compounded a thousand fold.

Oh, I can hear the debate going now…”It’s not putting yourself before the child. Sometimes you have to do that to regain your own strength and balance so you can be there for the child” OR “Our role as a mother is to sacrifice and put our children first, always, no matter what we may feel like.” So there it is, the two ends of the pendulum that us women often swing from. Again, add to the mix your child being medically fragile, severely disabled, and BAM! The pendulum ride just got much more intense.

Are we…the mothers of a child with a life-limiting illness…allowed to take time for ourselves? And if we are, how much time is allowed?

My earth angel Brendan will turn 11 on October 1st. Up until a few weeks ago, I had only ever spent a night away from him when I was twice in hospital: the first time after a cesarian to have Declan, the second time for another operation I had to have done. But earlier this month I went away…are you ready for this?…ALONE…for 3 days. Remember those feelings I mentioned above? Yep, they came with me, so I guess I wasn’t really that alone. Good thing I had spare room in my carry-on bag. And as luck would have it, Brendan ended up in hospital the night I left. OK, here is where you can compound those emotions a thousand fold. The next day found me back at the airport, rental car turned in, new plane ticket back home to Ireland in hand, when my friend Sandra rang to say “no, we have it handled, you stay.” And so, very reluctantly, I did. I actually stayed. I still had the company of those thousand fold emotions, but I stayed.

And how glad I am that I did.

I rediscovered a part of myself long hidden. Too long hidden. Far too long hidden! And now, I’ve been reminded what it is that centers me, brings me inner calm, and fills me with that ethereal sense of knowing. The key (or is it the catch?) is how to hold onto that which I rediscovered. For me, being in nature surrounded by beautiful, quiet, peaceful countryside is where I find my inner calm, my connectedness to the universe. Going to Norway for those few days and seeing the actual lands where my grandmother’s family all lived, loved, worked, and died; seeing and touching the ancient stave church where generations of my family worshipped and walking through the very same doorway they had walked through; and sitting on top of a pine covered mountain top looking down on the stunningly beautiful valley below, well, it was there that I Remembered Me.

Our journey with our transitioning angel doesn’t generally allow us Remembering Me time. We have to make it, and then take it. Then we need to carry it within us, not forgetting it while we are holding our child who is seizing uncontrollably and turning blue from not breathing or vomiting for no reason for weeks on end or now has a 24 hour around the clock feeding pump schedule that means you will never sleep in again until that one dreaded day actually comes. You know, that day when your angel will transition. So, hold on. Hold on my fellow mothers of these precious earth angels! Take time to rediscover who you are alone. Not just who you are as a mother. Who you are as yourself. Because it is who we are within ourselves that makes us the mothers we are able to be for our angels. And what a special, fantastic role we have on this journey.

Remember YOU. And I will Remember Me.

 

It’s often a strange, even backwards, journey with an earth angel who has a life-limiting condition. This current chapter of Brendan’s journey has been one of those: When Nothing Means Something. You know what I’m talking about, right? When your fragile child undergoes a myriad of tests and everything comes back “normal” and with each result you curse either in your mind or out loud…”Crap! (or feel free to go more colourful. I do!) I don’t want it to be normal!” Now, I know all the parents who aren’t on this journey and are reading this are probably thinking I’ve clearly gone totally mad after 10 days in hospital with Brendan. But I also know that my fellow SN journey walkers are saying, “Oh yes! I get ya!” **Side note: SN stands for special needs. We use all sorts of acronyms to shorten our busy worlds, so bear with us.

There lies your child, your earth angel, in the hospital bed with the same medical challenge that ended him up in the A & E many days ago. You think, ok, this test will show the problem and then we treat it and ok Bob’s your uncle and home we go. Nope. Not so easy. Test number two. Bob again is not your uncle and nowhere in sight. Test three and the doctor comes in and tells you to sit down on the bed for a chat. Bob clearly is out of the country on holiday at this point and maybe not even related to you, so forget about him altogether. “We can’t see any reason for why what is happening is actually happening.” Right. Ok. (Insert an expletive or two). And the doctor continues…”So, here’s what we will try.” TRY. The familiar ol’ TRY of this journey. Chair not suitable for your child with SN issues, TRY this. Formula not working for your child, TRY this one. Seizures still increasing, TRY this medication increase or let’s just add a new one to the other three. TRY. It’s what we do. Sometimes, it’s all we CAN do.

So here it is, giving it a TRY. Fingers crossed, prayers said, candles lit, positive vibes being delivered, wood touched and…deep breath. Will the new plan we are trying even work? The waiting game begins. Because sometimes When Nothing Means Something, it can mean Everything. It can even mean the beginning of that earth angel’s transition, be it months or years ahead. We simply don’t know. We don’t know. So, we TRY. We BREATHE. And we HOLD ON.

There is always something in the air the night before. Actually, there are many “somethings” in the air the night before. Hope. Exhaustion. Fear. Anticipation. Calmness. Panic. (Yes, many contradictory “somethings” can be in the air all at once) And sometimes floating aloft in the air bumping into all those other “somethings” are those thoughts that we keep pushed into the hidden recesses of our mind. You know, “those” thoughts. The ones that take you to “that” place. The big “what if” of this journey. (My fellow SN parents of children with a life-limiting condition know just what I mean)

Ah….this journey. Having a child with a life-limiting condition is a journey that I dare say no one can understand unless they are walking on the same road, in the same shoes, in the same boat, whatever metaphor one chooses to use. It is one hell of a ride that can’t be described easily, quickly, or painlessly. This journey will rip your heart out and shred it into a million little pieces. It will bring you to your knees in prayer and in suffering. At times, you will want to die. Wait…what? Die? Yeah, die. As in, can I trade places with my child, this precious, beautiful earth angel? Can I just die and give him my life energy so he can see adulthood and the myriad of experiences that a full life offers? Can’t I just do that? Can’t I? Well, the answer is no, it doesn’t work that way. So, along the way during this journey, you will stumble and fall…back onto your knees in prayer and in suffering. But along the way during this journey, you will also experience unconditional love; a love that can only be shared by someone who is as purely innocent and sacred as an angel. In fact, because they are angels. Souls who know nothing but light and love. And that unconditional love? It isn’t us, the parents of these angels, who are so readily giving of this cherished and illusive unconditional love. Rather, it is our angel that is the one radiating and blessing us with this unconditional love; showering it on us with all our failings; looking at us with eyes that reveal their complete confidence and faith that we will protect and nurture them with the same unconditional love as they hold for us. Herein lies the key to this magical journey with a child who has a life-limiting condition – unconditional love. More on that another time. For now, back to The Night Before.

The Night Before and all of those “somethings” are in the air. The Night Before your precious earth angel gets put under anesthesia for yet another surgery or procedure. The feelings and thoughts that rumble through your mind, your heart, your soul, and keep you from sleeping. For me, it is the motivation behind this, my first blog entry, as tomorrow my son Brendan goes in for his (insert number because I’ve lost count) procedure where he will be put under general anesthesia. Images flash through my mind of last time he was in recovery from anesthesia and I sat in the waiting room as the hours ticked by with no word. Then word came….de-satting, on oxygen, heart rate dropping. No you cannot come back and see him because of “privacy” reasons for the other children in recovery. Forget them, was all I could think, just let me see my son! When he’s stable, Tracy, then you can see him. And so it goes. The video replay in my head haunts me The Night Before. But I tuck the covers around him as I sit here on this hospital bed, looking at him while attempting to clear the “somethings” out of the air so I can see him more clearly. And there he is….the most beautiful angel fast asleep without a care in the world. Suddenly, for that moment, all is calm and all that remains is everything – unconditional love.