Today we celebrated the life and milestones of our precious Jemma. Let me introduce you to my niece.
Special. Unique. Different.
Aren't we all? Well, yes, but as much as we say that we are all those things, it's not until you meet someone like Jemma that you grasp this a little more profoundly. We are indeed unique but it's not very comfortable when someone really challenges this concept. We like to be unique as long as we look like, behave like and do the same things as everyone else.
It might surprise you to know, given the photo above, that Jemma is disabled. She was diagnosed as a baby with a chromosomal "glitch". And here begins her unique-ness... as far as any documentation concludes, she is the only one in the world like her - but of course, we already knew that! Along the way, she's gained a few more diagnoses but nothing that help define her or tell us what happens next.
For now, what you see is what you get.
She is five years old.
She doesn't speak... but she communicates.
She laughs.
She cries.
And just recently, she now walks. And hence the party. Today my brother and sister-in-law threw a party to celebrate - a party they promised many years ago when only faith and hope allowed us to dream it might happen.
Occasionally, when I ponder Jemma, her parents, and her sisters, my breath is taken away by the enormity of what having a child with disability must be like, by the complexity of their thoughts and emotions and by the sheer physical tiredness and overwhelmed-ness that must consume them relentlessly.
And while my brother and his wife are incredible people, they are but people. They don't for a minute profess to have this all stitched up. All they do, because it is all they can do, is 'walk humbly with their God'*. And He is Good. He delivers their needs. Sustains them. Loves them.
Today we heard again this eloquently written piece that seems to sum up well what it is like to be chosen to be the parents of one special, unique, different little girl who is, in fact, fearfully and wonderfully made**.
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.***
*Micah 6:8
** Psalm 139
*** Written by Emily Perl Kingsley
Special. Unique. Different.It might surprise you to know, given the photo above, that Jemma is disabled. She was diagnosed as a baby with a chromosomal "glitch". And here begins her unique-ness... as far as any documentation concludes, she is the only one in the world like her - but of course, we already knew that! Along the way, she's gained a few more diagnoses but nothing that help define her or tell us what happens next.
For now, what you see is what you get.
She is five years old.
She doesn't speak... but she communicates.
She laughs.
She cries.
And just recently, she now walks. And hence the party. Today my brother and sister-in-law threw a party to celebrate - a party they promised many years ago when only faith and hope allowed us to dream it might happen.
Occasionally, when I ponder Jemma, her parents, and her sisters, my breath is taken away by the enormity of what having a child with disability must be like, by the complexity of their thoughts and emotions and by the sheer physical tiredness and overwhelmed-ness that must consume them relentlessly.
And while my brother and his wife are incredible people, they are but people. They don't for a minute profess to have this all stitched up. All they do, because it is all they can do, is 'walk humbly with their God'*. And He is Good. He delivers their needs. Sustains them. Loves them.
Today we heard again this eloquently written piece that seems to sum up well what it is like to be chosen to be the parents of one special, unique, different little girl who is, in fact, fearfully and wonderfully made**.
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.***
*Micah 6:8
** Psalm 139
*** Written by Emily Perl Kingsley
1 comment:
This is gorgeous. She walked!!!
I am going to send on to a friend who is a new mum and in a similar boat.
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