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.
Crazy Tracy, I have just walked out of theatre after giving Jai a kiss whilst he went off to “sleep” for his surgery and then read this!
What timing! I hope all goes well for Brendan’s surgery tomorrow sending love and prayers your way that everything goes better than planned! Hope you can get some sleep. I know “the night before” usually you toss and turn all night and sleep doesn’t come easily…. Exhaustion just takes over more often than not. xoxo
May Archangel Michael wrap his cloak around you both Tomorrow and always Tracy <3
What a beautiful piece of writing. I’m sad but uplifted by your grace. Thank you.
You have brought me to tears, your way of telling your story is so raw. And that’s the only way I can explain how it made me feel while I read it xxxxx keep blogging because I will keep reading and wishing for you and your precious earth angle. Xxxx
So beautifully written. Bittersweet honesty.
So real to me, been through it all but not as much as my son. So unfair but it seems that he got to taking more than his share of medical conditions requiring anaesthesia. Such fighters for a world that is not fully deserving of their great contribution
Thank you for sharing .
Tracy, thank you for sharing your innermost feelings. Life is so tough for some of our angels and we suffer with them in their illnesses. Your precious little boys are blessed to have such an amazing Mam. Wishing your little boy well with his procedure today. My god wrap his arms around him and keep him safe. XXX
Beautifully written and so honest. Understanding your love as a mother to a special needs child too. Understand the pain, fear and utter determination that you will do all for your beautiful boy. Wishing him a speedy recovery and strength to you as hospitals take all your energy xxxx
beautiful piece Tracy xxx
I absolutely love this…very uplifting! May god continue to bless you and your angle!
I read your article in the Journal today, and some of this blog. I cannot understand why the bedsore is so neglected, and why there is not an immediate programme in place to treat it.
I fully support the need for appropriate housing for you and your family, and appropriate help at home too – that is the ideal situation, but sadly not available in Ireland.
I reached a point in caring that I left my special needs relative in hospital until he was cared for and found a permanent suitable home. Once I recovered, I did come back into his life, supporting but never being responsible for his basic care. It has improved his situation and mine immensely, we have a fun relationship and he has a good life. I would have liked to care for him, but the support I needed was not there.
Good luck in your life, and I hope you and your boys get joy out of every day – you deserve that….