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.