Megan's last two posts bear repeating. So, I've posted them below:
Common Ground
Because of my Ella and our crazy summer, I've spent a lot of time thinking about what it would mean for us to have a daughter with special needs, persistent developmental delays, a handicap or whatever you want to call it. (Not to be a broken record, but we still don't know what her future holds; we're hoping for the best while trying to prepare for the worst. God, grant us wisdom and grace.)I've thought a lot about the time before we knew anything was wrong, how even the simplest of things brings on a new wave of grief as I struggle to embrace this new (potential) reality we find ourselves in. (The tears don't flow quite as freely now, but it's certainly a process--more of a marathon than a sprint.) I have come to the conclusion that I am not alone in feeling this way. That there was likely a time for every special needs family, a time forever known as Before--before the tests, the scans, a diagnosis--when the hope grew with an ever expanding belly and plans were made that didn't include durable medical equipment and frequent doctor visits.I've had opportunity to understand this sooner, but sometimes full knowledge is only gleaned through experience.Opportunity in my own family even. My grandmother is one of the strongest people I know. Until recently, when a series of devastating strokes took much of her physical ability away, she was my handicapped uncle's primary caregiver for more than fifty years. To me, that's the way it has always been. But not to my grandma. For her, there was a time when having a handicapped son was not her lot in life. And you might think that perhaps half a century's worth of time would be enough to forget the grief and the what-might-have-beens, but it would not seem that way. She and I only spoke about that season surrounding Arthur's birth (wherein he suffered from erythroblastosis fetalis, also known as Rh factor incompatibility) once, but it is a vivid memory for me; and even in my adolescence I could appreciate the very palpable and raw emotions just under the surface in the telling of her story.And yet another opportunity to understand. When my husband was born, he was two and a half months early and suffered a brain injury when he stopped breathing soon after birth. I had heard snippets of his story along the way, but I knew there must be more. Ella's condition has given me boldness to ask about what I might otherwise shy away from. One afternoon last month, I asked my mother-in-law about the circumstances of Chris' birth. You wouldn't know that she was describing events from more than thirty years ago; the fear, the questioning, the unknowns--these are things you never forget.
Welcome to Holland
I happened upon this essay in the first few days after we came home with a diagnosis for Ella. It is an excellent read for anyone walking the path of having a special needs child or trying to understand someone who is.
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WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
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. The Michelangelo 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.
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