In the eyes of the world, Miks, you were not perfect. You held none of the glitz and glamour that so many spend their entire lives trying to attain. You did not live a "full life" (read: until you were old and grey). You had nothing fancy to offer. You were, some people would say, a simpleton. Just nothing special at all.
Another T18 mommy and friend, had some awful comments posted on her videos of her sweet boy, who's over 2 years old. Really, in a nutshell, they questioned the value of his life, and questioned the parents love for him, because, in their words, the parents were being cruel to this little boy.
And it's made me think: who determines what the value of a life is? The doctors? The parents? Your friends? The teachers? Is the value of your life determined by fame? Or fortune? Perhaps by influence or power? Is it knowledge that holds weight to value, or is it achievement and recognition?
Knowing what I know now...would I change it? Would I go back, and take it all back? Would I? Having gone through what I went through, and having seen you go through what you went through, would I go back and change it because your life wasn't worth it? Or was it?
You see, the question that I keep wondering to ask is not whether your life was worth LIVING, but rather, would your life have been worth TAKING?
When people talk now about terminating T18 babies, I don't look at that through the lens of doctor, or scholar, but rather, well, I look at it as if someone would be asking me if I'd be happy that they took the life of my daughter. Please understand that I don't mean it as a criticism or judgement. It's just that, well, Miks, for everything that you were not, you WERE still my child. You had personality, and spunk, and character. You were sure of what you wanted and didn't want. You were a person. Just in a different to mostly everyone else.
But so what?
You see, in our pursuit of perfection, we're so busy qualifying everyone around us through our own lenses of approval, that I think we're missing out on the potential of the beauty below what we're seeing. If we instead loved one another, as God has commanded us to do, and as Jesus did, we would only see the wonder in one another, rather than constantly de-valuing, qualifying, and segmenting each other.
And I guess that's the point. When it came down to it, I was well aware of everything you were not. I could see your "imperfections". Often they hit me squarely in the face as we battled with things other parents have not had to. But, at the end of it all, we saw YOU. Petite, beautiful, angelic YOU. And you were perfect. Not by worldly standards, but by YOU standards. We couldn't qualify you. And you had no desire to be qualified. You just wanted to be loved. And since we couldn't give you anything else, that's exactly what we gave you... in abundance! I don't know that any other child has been kisses that much in 491 days!!
Yes, I think I will wear Mikayla lenses from now on. They say that every life has value, regardless of societies expectations. And that the place to start with is always with love.
Tuesday, November 29, 2011
Friday, November 11, 2011
Eternity in our Hearts
Last night I couldn't sleep. I couldn't stop thinking about you.
I was remembering you just before you passed away in the hospital... You had got so LONG. You were looking more and more like a toddler (in length) than the baby you had remained for so long. And I got really sad about it.
If you had lived a long "earthly" and "normal" life.. well... I often think how you would have been. I think you would have been blonde. You would've had the biggest blue eyes. You would have been so very beautiful. I think Daddy would've had his hands full if you had been a teenager. You would've had a pale creamy skin, maybe freckles on nose.You would've had long delicate fingers, but your mothers butt (shame!). You would've had a great sense of humour. And would've been doted over by your brothers endlessly.
But you're not here any more. Death took you away. And it hurts so much. You see, we were created with Eternity in our hearts. Every single one of us. Ecclesiasties 3:11 says this: "He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end." (Bold mine)
That's why death is so hard, and so WRONG to us, because we have eternity in our hearts. How, when our hearts are living with eternity, can we accept or fathom death when it is the opposite of eternity? Death is so final. In earthly and human terms, it's the END of something. But eternity has no end. It's such a conflict, and I believe why we struggle so much when we lose someone.
I guess the other end of that coin, is that death ISN'T the end. Death has no power over us. You see, Jesus came that we may have LIFE. And while that's Life In Abundance while on earth, it's also LIFE beyond this earth.
I have to remind myself of this... often. To know that while I have missed out on so much of YOU on this earth... I will (hopefully, if I get my act together), have an eternity to know you. And maybe in Heaven I'll get to skip with you, hug you, do your hair in plaits. And to see those big blue eyes....
Oh how I miss those eyes.
I was remembering you just before you passed away in the hospital... You had got so LONG. You were looking more and more like a toddler (in length) than the baby you had remained for so long. And I got really sad about it.
If you had lived a long "earthly" and "normal" life.. well... I often think how you would have been. I think you would have been blonde. You would've had the biggest blue eyes. You would have been so very beautiful. I think Daddy would've had his hands full if you had been a teenager. You would've had a pale creamy skin, maybe freckles on nose.You would've had long delicate fingers, but your mothers butt (shame!). You would've had a great sense of humour. And would've been doted over by your brothers endlessly.
But you're not here any more. Death took you away. And it hurts so much. You see, we were created with Eternity in our hearts. Every single one of us. Ecclesiasties 3:11 says this: "He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end." (Bold mine)
That's why death is so hard, and so WRONG to us, because we have eternity in our hearts. How, when our hearts are living with eternity, can we accept or fathom death when it is the opposite of eternity? Death is so final. In earthly and human terms, it's the END of something. But eternity has no end. It's such a conflict, and I believe why we struggle so much when we lose someone.
I guess the other end of that coin, is that death ISN'T the end. Death has no power over us. You see, Jesus came that we may have LIFE. And while that's Life In Abundance while on earth, it's also LIFE beyond this earth.
I have to remind myself of this... often. To know that while I have missed out on so much of YOU on this earth... I will (hopefully, if I get my act together), have an eternity to know you. And maybe in Heaven I'll get to skip with you, hug you, do your hair in plaits. And to see those big blue eyes....
Oh how I miss those eyes.
Labels:
death,
eternity in our hearts,
Mikayla,
Trisomy 18
Friday, November 4, 2011
The Garden
I am a dog. I'm not sure what kind. I am definitely not a pedigree, but I am certainly the fiercely loyal kind, as most dogs are. I have been brought to a garden. It is beautiful.
There are big lucious beds of flowers, and green lawns. I am happy.
But then I look again, and I realize there are large dark walls around the garden. Suddenly the garden seems small, and the walls unscaleable. The walls cast big shadows, making the garden feel cold and uninviting. I wonder how anything will survive without enough sunlight.
I am afraid. I put my tails between my legs,and curl into a ball. I whine: a low, soft, lonely sound. It echoes, making a soft wailing reverberation around the garden.
And I wonder where my master is? Why he left me here? Why isn't he fetching me and taking me to a large open park somewhere that I can run and be free? Where he can throw a ball for me, and pat me, and love me? Have I been a bad dog? I can't understand it. I am confused.
I hear a sound. I think it may be my Master. I go to the door of the garden. I scratch the door. At first, it's just a gentle scratch. I fear I may be wrong at first. I scratch a bit, just near the bottom of the door, where the sound is no louder than a mouse. Then I wait. Yes, there's definitely someone there.
I stand a little straighter. I sniff a little. I am cautious. Then I scratch some more. This time louder. I make small whinnying sounds. And the noise from the other side is louder. I think he hears me now.
So I bark. I bark loudly. Oh, the joy! I know he hears me! I hear the boldness of his footstep, I feel the heat of his hand on the door handle. And, as I watch the doorknob turn, I know finally that I am free. He came. Yes, he came for me.
There are big lucious beds of flowers, and green lawns. I am happy.
But then I look again, and I realize there are large dark walls around the garden. Suddenly the garden seems small, and the walls unscaleable. The walls cast big shadows, making the garden feel cold and uninviting. I wonder how anything will survive without enough sunlight.
I am afraid. I put my tails between my legs,and curl into a ball. I whine: a low, soft, lonely sound. It echoes, making a soft wailing reverberation around the garden.
And I wonder where my master is? Why he left me here? Why isn't he fetching me and taking me to a large open park somewhere that I can run and be free? Where he can throw a ball for me, and pat me, and love me? Have I been a bad dog? I can't understand it. I am confused.
I hear a sound. I think it may be my Master. I go to the door of the garden. I scratch the door. At first, it's just a gentle scratch. I fear I may be wrong at first. I scratch a bit, just near the bottom of the door, where the sound is no louder than a mouse. Then I wait. Yes, there's definitely someone there.
I stand a little straighter. I sniff a little. I am cautious. Then I scratch some more. This time louder. I make small whinnying sounds. And the noise from the other side is louder. I think he hears me now.
So I bark. I bark loudly. Oh, the joy! I know he hears me! I hear the boldness of his footstep, I feel the heat of his hand on the door handle. And, as I watch the doorknob turn, I know finally that I am free. He came. Yes, he came for me.
Labels:
Edwards Syndrome,
faith,
hope,
Mikayla van Rensburg,
T18,
The Garden,
Trisomy 18
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