Gone are those days of luxury, and now it takes me at least two weeks to finish a good book...
When I first started reading Amy Julia's first-person account of the birth of her daughter, and her family's journey of emotions in the months that followed, I immediately left a comment on the author's blog...some of the passages were so similar to my own letters to my daughter that it felt a little... eerie. Because the emotions she went through, the deep questionings of her faith and life and Down syndrome and how that all fit together, so closely mirrored my own experience that I felt at times as if I had written her book.
Couple that with the title of her book...which closely resembles the title of my blog, and the theme of my blog...and I started to wonder if maybe we were twins separated at birth.
However...Amy Julia is a graduate of Princeton, and I am...not. I'm a stay-at-home mama of ten, and the closest I've gotten to having anything published was a quote in Real Simple magazine when I sent in three sentences about my "worry quotient" in regards to finances. (March 2008 issue, page 53 if you care to fact check ;))
So after solving that little mystery (we're not twins), I realized that the emotions we go through as new parents of children with special needs are perhaps universal in some respects. Sure, we each filter things through our own life experiences, or faith system or lack of faith system, but many of the similarities I found in Amy Julia's experience were the same ones I've found reading other blogs, and often reflected back in the comment section here on my blog. There is no "right" way to process a diagnosis of Down syndrome, but it is comforting to read someone else's version of what they went through and realize: I'm pretty normal after all.
The parts of the book I loved most were excerpts from Amy Julia's journals. Again, it often felt as if I were reading my own thoughts and journaling on the pages of someone else's book. Here's one of my favorites:
The days feel like a spiral, where I circle around to sadness or delight or confusion or disbelief. And I know it is ground I have already covered, but I have to go back and scope out the territory again, settle into the landscape, assess the contours of the horizon, try to put one foot in front of the other and move forward. Try to think it will not always come back to fear and sorrow, but that we will circle around until their time is done and we can truly accept this new life as ours, as our family, as normal for us..
So reminiscent of my first months after Lily was born.
Here's another:
A
friend with a grandchild with Down syndrome remarked upon the blessing
it was to us that we didn't know ahead of time. It makes sense now that I
think of it. Had I known, I would have prepared for Down syndrome.
Instead, I prepared for a child, a family, a gift- not a condition, a
syndrome, a problem.
And my favorite of all, (and this was written by Peter, Amy Julia's husband):
Consciously and unconsciously, we had implicit hopes, dreams, and expectations for Penny that having Down syndrome makes unlikely. At the same time, we didn't want to be upset in any way concerning the birth of our daughter. We also realized that it was hardest to deal with this new reality when Penny wasn't in the room with us. When she was out of the room, she became an abstract concept. When she was in the room- nursing, sleeping, and just being held- she became who she is: our beautiful, sweet daughter. The more time we spent with her, the more pure joy we experienced. Who knows what the days and years ahead will hold, but one thing we know for certain: we could not be happier that Penny is our daughter.
I've written here about this before as well. I've had a recurring dream since Lily was born~ that I am just finding out she has Down syndrome all over again. It's like I never knew, and suddenly I'm made aware of that fact, and in my dream I'm crying uncontrollably and scared and grieving...and then I wake up. And those emotions are all right there, and for half a second I am in that half-dream half-awake state, trying to break through to reality- and I turn over and see Lily sleeping peacefully beside me. And instantly the pain and fear is gone and I know: she's just Lily. She's not some scary diagnosis, some unfamiliar syndrome, she's my beautiful, perfect baby girl, and I would not wish away that extra chromosome if I could- because I don't want any baby but my Lily.
Because I'm reviewing this book in the hopes that you'll go buy a copy for yourself, I have to put a little disclaimer here: there is a doctrinal difference Amy Julia and I share in regards to baptism. The core of her faith is exactly the same as mine: salvation through faith in Jesus. But because I am "endorsing" a book, I felt the need to add this in. And I have to say that of all the books I have read about Down syndrome, this one most closely mirrors my belief system, and I love love love Amy Julia's strong stand for the Lord and her strong stand for life.
What I didn't like about the book? I wish it didn't end. Do you ever read books where you just love the characters so much that you want to know what happens to all of them when you're done reading? This is one of those books. But thankfully, Amy Julia has a blog called Thin Places where you can continue to read about her lovely family, and see pictures of the adorable and precocious Penny.
*****
Patti Rice
A Perfect Lily
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