I have an exercise for you to do. “You” being the person reading this that does not have a child with a life-limiting condition but who knows someone that does. Maybe you even love the child, though they are not your own. However it is for you, while I have you reading this, I ask you to make yourself comfortable and follow along. This is a walk in our shoes…
Read this and then close your eyes and go through these steps. You can’t give up, by the way, so don’t quit – don’t hit the little “x” at the top right corner of your computer that will close this screen. Quite simply, that is not allowed. Are you ready? Here we go…
I want you to think of your child. If you have more than one child, just randomly pick one in your head. Can you picture him or her? Ok, good. Next, I want you to imagine you are standing in a meadow. The sun is shining down, there is a soft breeze in the air with a slight hint of Spring flowers in bloom. Your child is in the meadow playing without a care, smiling and bouncing in delight. The love you feel for your beautiful child fills your heart, it’s such a lovely sight to see! Now, picture that meadow with the flowing green grass as a having hidden land mines throughout, surrounding your precious, happy child.
REMEMBER, YOU CAN NOT STOP HERE.
CONTINUE TO IMAGINE THIS SCENE IN YOUR HEAD.
NO GIVING UP ALLOWED.
You’re stand on the edge of the meadow…minefield…knowing that no matter what you do, you cannot reach your child to save them from what is inevitable: He or she WILL step on one of those land mines – and will die. Nothing you do will change the fate for your child. Nothing. Take a moment to let that soak in. (Are you still picturing your child in your mind?) Your thoughts are jumbled, your heart racing, as panic sets in and takes hold. Your anxiety level is through the roof and you feel like you want to scream every second you watch your child unknowingly dodge yet another unseen land mine.
ARE YOU STILL WITH ME HERE?
YOU CAN DO THIS.
KEEP GOING.
Somehow you manage to safely join your child in the meadow, holding his or her hand and carrying them whenever possible. You enjoy the beauty that is your child and that surrounds your child. You laugh with them, sing, dance, smile and you love like there is no tomorrow…all the while being ever so conscious that one of these days one of those unseen land mines will indeed go off and will kill your child. Not you. Only your child.
And there is absolutely nothing you can do to stop it from happening. Nothing.
OK, DONE. I hope you have stayed with me this long and that you actually closed your eyes, imagining this exercise, no matter how horrific? How did this make you feel as you pictured your son or daughter? And why did I ask you, the gentle reader, to imagine such a terrible, unthinkable thing??!! One word: EMPATHY. We, the parents of children who are going to die, go through this every single day. That constant, unshakeable feeling of anxiety. It never leaves us too far behind. Even when we are laughing and playing in the meadow with our precious child, even when we are making the most of every moment and counting our many blessings, still we are constantly aware it is a minefield in which we are walking.
And that takes a heavy toll on us.
Anxiety, depression, crying for no reason, crying for many reasons. Drinking too much or eating too much. Exploding at those around us or imploding within ourselves. Being overly emotional or numb to the core. Talking incessantly or shutting down in silence. Each one of us in this minefield reacts to it differently, yet we all understand the anxiety that comes with being hyper-vigilant as we try to guide our precious angel through that meadow without taking the wrong step that will see it all end while knowing it will regardless.
This is what we hope you will understand. And we hope you will have empathy and compassion for us as the journey takes its toll on us. We need you, too, you see, because one day we will no longer have that minefield to navigate, and it will be you who helps guide us through the meadow of life without our irreplaceable child.
I worry about my daughter this way too sometimes. The doctors made it sounds like she wouldn’t make it through her first winter. We braced ourselves and then spring came and she turned one! And then two! And now three! I know I will outlive her though. I know it is unlikely she will ever make it to ten. On some days, it is as you describe above. But I resolved at some point to only let these moments be moments. Being sad or lost in thinking about what hasnt happened yet takes me away from the time I do have with her and she is delightful. I don’t want to waste time in those dark future-think places though sometimes I can’t help it. I want to enjoy her light while it is here with me, not be sad over a future that hasn’t arrived yet. But just so you know, I get stuck there too. I get very stuck on all things she won’t ever do like talk, walk, laugh, make friends, or stop having so many darn seizures. Ive spent months mourning who she won’t be. Really dark, agonizing places. But she smiles. So I think she is okay with things and i try to be too. For her sake.
and we will be here….we who stand on the edge of your life and we whose hearts skip a beat or two when we see a post from you…what will it say…are you ok? or has something happened? we are not going to leave you….our love and prayers for you, for your family are being prayed hourly, daily constantly. We will not stop…not ever…Blessings and Hugs…
amen
Completely awesome
Thank u for sharing your heart w us
My grandson has t18 Jake turned 1 in Feb
We have decided as a family that as long as we have him with us we will treasure every moment. Our hearts will ache n have a whole that will never heal
So we enjoy every moment w him
He is our lite our love n our true meaning for us to b blessed w him every day! Jake’s memaw, Trisha Cole
I was the outsider looking in for almost 3 years. My niece was born with SMA which is a death sentence. I love her like she is my own but the truth is she is not, was not and I will never truly know what her mamma went through. A month ago she stepped on one of those land mines and even though none of us died with her we have been injured beyond words. And even though I tried to prepare for that phone call I was not prepared at all. She left a gaping hole in our lives, one that will never be filled.
I understand your pain. Although the daughter I stand in the minefield with is 40 years old I know she will step on a mine before me. I am grateful for the years that I have had with her and appreciate them more as I read your blog. I salute your courage in sharing.