Dearest Malakai,
I know that I usually write you on this blog, but this time I wanted to write a letter to all those people out there who may be faced with a diagnosis of Down Syndrome (or know someone who is) and are facing the same uncertainty and fear that your dad and I faced when we discovered you have 'designer genes'!
I don't know everything about Down Syndrome, but I do know the following:
You may be absolutely devastated and will need to mourn the 'loss' of the child you believed you would have. You may be faced with many scary health concerns - heart failure, hearing loss, loss of sight, low muscle tone, feeding issues etc etc... Your doctor may or may not be compassionate and caring... And through this all you will need to come to a place of peace and acceptance.
I don't know everything about your experience, but I do know the following:
I have been blessed with a baby boy who takes my breath away when he gazes up at me with his grey-blue angel-eyes. I forget every day that he has Down Syndrome because he is simply my baby boy - Beautiful, Loving, Eager, Growing, Strong, Wise, Serious, Funny, Darling, Amazing. Yes, he may face challenges in the future... but so does every child. Yes, he may have 'special needs'... but so does every child. Yes, he may reach his milestones in his own time... but so does every child. In our experience there is no 'settling' for 'not perfect' child - he is our miracle.
In the Worldwide Down Syndrome community, there is a story told by Emily Perl Kinsley called "Welcome to Holland" - here it is:
By Emily Perl Kinsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
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. Michelangelo’s David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After 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 guide books. 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… and you begin to notice that Holland has windmills… and Holland has tulips. 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 will never, ever, ever, ever go away… because the loss of that dream is a very, 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.
In CELEBRATION of all those beautiful souls out there - all those babies, children and adults that I once looked straight through... that I now seek out wherever I am... here is a inspirational story called 'Always Reaching' written by a father of a child with Down Syndrome:
From the STL DS Newsletter
by Matthew’s Dad
Every time I see my son, I reach for him.
It doesn’t matter if he rounds the corner 4 seconds after I have seen him last, or if I am picking him up from school and have not seen him for hours…I reach for him.
I can be 1 foot away or 100 feet away…I reach for him just the same. I reach for him with my arms, with my eyes, with my heart.
I wonder sometimes what I am reaching for.
I have seen this in other people when they see my son.
My family, my friends and perfect strangers. They all reach for him.
I see the same movements, the same gestures, the same need to hold out their hands for him. They want him to come to them, some know him and some don’t. Some call his name and others just motion for him. But they all seem to want him to come.
For a moment, you can see his spirit reflected in their faces. I watch the smiles grow across their faces with a fullness that is unavoidable.
When he falls into their arms (which is what he does to everyone), I see a momentary peace envelop them, and their eyes close, they pull him in and they experience what I call “The Joy of Matthew”
He gives it to you. He wraps you in it. He wriggles and squirms and mashes the love into you. If you did not know what to expect, you may be surprised and find yourself amazed at the feeling, overwhelmed at the emotion he carries with him.
I am lucky. I get to hold him all the time.
And I have been able to think about that feeling and where it comes from and what it may mean. I think Matthew is a window through which we see a pureness of emotion… pure happiness, pure sorrow, pure joy and pure love.
Despite what some may think, our special children are closer to God than we are. We see so much in them that we lack. We wish quietly in so many ways that we could be more like them. And when we hold them, if just for a moment, we feel closer to God.
That must be why I am always reaching for my son.
That must be why they all reach for him.
This has been a very long post in honour of National Down Syndrome Day - but I hope that it has given someone the hope, the acceptance, and the peace that they need in a time that may be very very hard.
It will be ok. It can only be ok (there is no other option). Love is like that!
Life is short (but oh so sweet) - grab it with both hands!
From Kai's Mom
I know that I usually write you on this blog, but this time I wanted to write a letter to all those people out there who may be faced with a diagnosis of Down Syndrome (or know someone who is) and are facing the same uncertainty and fear that your dad and I faced when we discovered you have 'designer genes'!
I don't know everything about Down Syndrome, but I do know the following:
You may be absolutely devastated and will need to mourn the 'loss' of the child you believed you would have. You may be faced with many scary health concerns - heart failure, hearing loss, loss of sight, low muscle tone, feeding issues etc etc... Your doctor may or may not be compassionate and caring... And through this all you will need to come to a place of peace and acceptance.
I don't know everything about your experience, but I do know the following:
I have been blessed with a baby boy who takes my breath away when he gazes up at me with his grey-blue angel-eyes. I forget every day that he has Down Syndrome because he is simply my baby boy - Beautiful, Loving, Eager, Growing, Strong, Wise, Serious, Funny, Darling, Amazing. Yes, he may face challenges in the future... but so does every child. Yes, he may have 'special needs'... but so does every child. Yes, he may reach his milestones in his own time... but so does every child. In our experience there is no 'settling' for 'not perfect' child - he is our miracle.
In the Worldwide Down Syndrome community, there is a story told by Emily Perl Kinsley called "Welcome to Holland" - here it is:
By Emily Perl Kinsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
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. Michelangelo’s David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After 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 guide books. 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… and you begin to notice that Holland has windmills… and Holland has tulips. 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 will never, ever, ever, ever go away… because the loss of that dream is a very, 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.
In CELEBRATION of all those beautiful souls out there - all those babies, children and adults that I once looked straight through... that I now seek out wherever I am... here is a inspirational story called 'Always Reaching' written by a father of a child with Down Syndrome:
From the STL DS Newsletter
by Matthew’s Dad
Every time I see my son, I reach for him.
It doesn’t matter if he rounds the corner 4 seconds after I have seen him last, or if I am picking him up from school and have not seen him for hours…I reach for him.
I can be 1 foot away or 100 feet away…I reach for him just the same. I reach for him with my arms, with my eyes, with my heart.
I wonder sometimes what I am reaching for.
I have seen this in other people when they see my son.
My family, my friends and perfect strangers. They all reach for him.
I see the same movements, the same gestures, the same need to hold out their hands for him. They want him to come to them, some know him and some don’t. Some call his name and others just motion for him. But they all seem to want him to come.
For a moment, you can see his spirit reflected in their faces. I watch the smiles grow across their faces with a fullness that is unavoidable.
When he falls into their arms (which is what he does to everyone), I see a momentary peace envelop them, and their eyes close, they pull him in and they experience what I call “The Joy of Matthew”
He gives it to you. He wraps you in it. He wriggles and squirms and mashes the love into you. If you did not know what to expect, you may be surprised and find yourself amazed at the feeling, overwhelmed at the emotion he carries with him.
I am lucky. I get to hold him all the time.
And I have been able to think about that feeling and where it comes from and what it may mean. I think Matthew is a window through which we see a pureness of emotion… pure happiness, pure sorrow, pure joy and pure love.
Despite what some may think, our special children are closer to God than we are. We see so much in them that we lack. We wish quietly in so many ways that we could be more like them. And when we hold them, if just for a moment, we feel closer to God.
That must be why I am always reaching for my son.
That must be why they all reach for him.
This has been a very long post in honour of National Down Syndrome Day - but I hope that it has given someone the hope, the acceptance, and the peace that they need in a time that may be very very hard.
It will be ok. It can only be ok (there is no other option). Love is like that!
Life is short (but oh so sweet) - grab it with both hands!
From Kai's Mom
2 comments:
Once again you have me in tears. Very beautiful Loren, and we are proud to be able to call you our friends and blessed that we can catch glimpses of your trip to Holland. Now we get to see the windmills and the tulips through your photos. Have a great week and I look forward to our Thursday coffee!
Love
Elriza, Wes & Caden
Loren, i continue to learn so much from you and Kai! I can definitely relate to the planned trip to Italy, we to have landed in Holland - but you know what I love Holland! Celebrating the uniqueness of Deqlan is a miracle , a blessing a gift ! Thank you for sharing these stories. I love the story of reaching out to, and feeling that much closer to God how true! How blessed you are to be chosen to be Kai's parents, what an absolute gift - i know you are already helping people out there Loren, continue doing the amazing job you are! I to feel priviliged to be a part of Kai's journey and see the photo snaps of your trip! God Bless, love Mark, Samm, Deqlan and Logs
p.s - cant wait for Saturday, hugs to Kai!
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