I read this great article.and it got me thinking.
I loved my daughter ferociously. More than others love their children? Perhaps not. But I loved her with a defiance against what was the norm. I loved her despite discrimination. I loved her despite a reality beyond most parents comprehension. Perhaps that does make me a dragon mother too.
Loving your child, still wanting the most for them, still hoping for their best, but yet within the contraints of their reality, and with the certain knowledge that you will bury your child, and not the other way around, seems so impossible on paper, and so cruel to the heart. And yet that's what mothers of terminally ill children do. We know there are realities that we will certainly have to face... Realities that before we would've sworn we wouldn't survive them, realities that make any parent shudder. Realities we still wouldn't wish on even our worst enemies.
Saying goodbye to your child inch by inch, day by day, second by second is all consuming. Suddenly you are defined by your child, and not the other way around. Suddenly your world cannot be about you. I like to believe that before I had Mikayla, I always put others before me blah blah blah... But looking at it now, I realize, that like all humans, most of my endeavors were self seeking. For self fulfillment and self gratification. The good old WIFM principle. But when Mikayla was born, and this new world of Trisomy 18 hit us as a family, suddenly, my world was turned upside down, and everything I believed was challenged. I couldn't revolve Mikayla's life around what I wanted. It was impossible, as much as I tried.
She was going to die, and potentially soon, and most certainly before me. There was no way around it. Every hope and dream I had for who she would be. Ended. And every dream I had for who I hoped to be. Ended. And on that fateful day on September the 10th, 2011, I had the unthinkable experience of holding my daughter the moment her heart stopped pumping, and watching the light disappear from her eyes, and knowing that suddenly she was gone.
Does that make me particularly special? I don't think so. Does it make me particularly strong? I'm not so sure. You see, the parenting magazines don't give you tips on how to let your child die. The parenting magazines don't tell you at what BPM your child's heart is giving out. The parenting magazines don't tell you how to change a feeding peg, or comfort a neurologically challenged child, or to comfort a child that has cried, nonstop, for 9 hours without any explanation at the source of the discomfort. You see, us parents, we prepare our children for life. And rightfully so. But the downside to that, is that we then arrogantly think that then we have a lifetime with our children. And in that, it means we can still put our needs first. Pursue our endevours first. Because, well, our loved ones are here. We think it is our responsibility to capture the heart of who we are FIRST and to THEN fit our loved ones around who WE are.
But when you have no choice but to fit yourself around someone else, you realize how insignificant we really are.... And how fickle we are.
For 16 months, my identity became Mikayla. I was Miks' mum. And I'm proud of that. The irony is that I was actually the same person that I am now, before Miks was born, and I'm still that person post her death. Circumstantially I have changed, and yes, she changed me perhaps in the way I respond to the world around me but innately I'm still the same. You see, I've realized something: My identity isnt about what my name is. It isn't about where I live. It isn't about who I keep company with. It isn't about what I do. Its not about my title, or strengths or weaknesses. Those are my attributes. But who I am is something engrained so deep in me, that few have taken the time to find.
I think the beauty of my relationship with Mikayla is that because she couldn't be what I wanted her to be, and because that altered what I hoped I would be, it made me see her for what she WAS, and perhaps even allowed the person I was to shine. It made me search for her soul... Her innermost being, because I needed to know her on a level beyond what they teach you in a parenting magazine. I had to understand her progress and her milestones and her personality based on her individual accomplishments, and her spectrum, and not the acceptable norm.
And I wonder sometimes if we shouldn't do that everyday. With all our children. With all our loved ones. I would love those around me to know ME based on who I am in the deepest part of my being, and not what I expect to be labeled as, or what people decide to label me as.
I loved my daughter. I loved her with a ferocity I didn't think I had in me. But I am more that my daughter. Just as she was more than me.
But the conundrum is this: am I prepared to put my identity, and my pursuit of recognition and fulfillment at the forefront of my life, at the expense of my family? Mikayla has taught me that the answer to that is no. To me, I think I'd rather be a no-one than risk missing out on those I love, today.
Do I get it right all the time? Absolutely not! But you see, I understand that today is fickle. I understand that tomorrow only has a 50% chance of coming. I understand that not all parents outlive their children, that not all goodbyes happen before tomorrow comes. And I know that even though I had a certain knowledge that Mikayla would definately die, that even when that truth came to pass, it came with shock, and indescribable pain. What about when you're EXPECTING tomorrow and it doesn't come? Then what? Is what you're pursuing today worth it? Are your loved ones fitting into your plan? Or are you building you pursuits around them? Because I can assure you this: when the light goes out, and the last breath is taken... When tomorrow arrives, not much of what you DID today matters. But WHO you did it with? THAT counts.
All I know is this: in the end, there are only two things that matter: the love of God, and the love of our loved ones. And both require active pursuit on our part.
And both are selfless acts that see us as participants, not the lead role.