Permission to slow down

I received this email from Amelie, who blogs at Lola’s verrückte Welt. She writes:

When I learned that Lola, my now 10 month old daughter, had Down syndrome, or at least, when I first had this suspection, on my own, alone, in the middle of a November night, in a hospital bed, shortly after having given birth, laying lonely without my belly, without my baby, I only had the wish it would all be a nightmare. I will wake up, and everything is alright, my baby here, the sun, and all… But then, another strong feeling overcame me. I don’t remember where it came from, however, it entered my mind. It was the feeling of a deep relief, of gratitude. ‘Did you have to come to show me?’ The strong knowledge, somehow, that I couldn’t go on like before, trying to make my career in adademic life, succeeding in science, under the incredible pressures of our system… and I felt so deeply relieved that she had taken this burden from me and would show me her way of life, simple and rich…

and there I went, somewhere in between these two thoughts, sometimes quite close to the nightmare feeling, although I would never admit that. Sometimes closer to the relief-side of the feelings, but never quite managing to feel it as intensely as in that night. Mostly trying to find my way in between. Trying to make things better, let love come and take me. One part of myself struggling against the deep wish to do the things the simple way, telling me that it’s too obvious and naive, urging for complications that sound more important. I never imagined it was so difficult for me ‘to take it easy’. Although Lola is my best teacher. And she has taught me so much, already.

Your life – as catched in your book – is such an incredible and moving account of how simple and rich life can be if you take it to the bottom – and smell the dusty autumn, put on the candles in the kitchen on a winter day, see your kids run down the hill, cook a chicken and it’s smell in the house… and all the little details which remind us of our own childhood and there you can touch them again… and our kids grow, and grow, at their pace, in the rhythm they got from heaven.

Amelie also writes about our email exchange, here.

Has anything more happened with Cathy?

I’m asked about Cathy often.

I think there is a hope, and I understand this hope, that she will somehow come across my book and recognize herself in it and will have a change of heart. If she did, I would welcome it. I would like to talk about what happened–her reactions, and mine, and how we could do better, together, for the sake of our kids and especially, ourselves.

But I’ve learned Cathy and her family have moved out of state, which makes it unlikely that anything more will come of it.

Road Map in Italy

This beautiful image was sent to me by Connie Wenk. She writes, “As I sat on our balcony with your AMAZING book, enjoying it and my obligatory Italian cappuccino, my father-in-law’s Italian map was laying next to me on the table and voilà …. I found that play of words pretty cool: With Juliana in ITALY the roadmap to Holland.”

Learning love from baby Grace

There was a woman in the audience for Saturday’s NDSC workshop: I can see her clearly, she was sitting near the aisle toward the middle. She had dark, shoulder-length hair and in a nearby stroller was her baby. Before the presentation began, she mentioned she’d read Gifts, and was reading Road Map, and that the books had changed her life.

Later, we learned more about the baby, a little girl named Grace…who you can read about here.

I’m thinking about Grace’s mother today, and my friend Vicki. And I’m thinking about the power of words: what an awesome responsibility comes with it. Would I tell this new mother her choice was the right one, even as I mourn with my friend?

I would. I would tell her that love is the thing that wakes me up in the morning; love is what that pulls me down the stairs into the kitchen to spread the peanut butter on the toast and pour the juice into glasses. Love is what compels me to move through the moments of my day; sometimes, love is the only thing that makes sense.

Even when sadness overwhelms me, I can see love at the other side of it; it’s the reason life hurts. Because I love it so well.

This Lovely Life is the title of Vicki’s forthcoming book. I know she’d tell you the same thing.

I love you, Vicki, and I love Evan. And I always will.

Just home now…

from Boston, where this year’s National Down Syndrome Congress Convention was held. There is so much to share: so many memories, like meeting people from the Internet who always felt like old friends, but now they really do, since I can put a name to a face. Holding the most beautiful babies. The way the salty sea air felt soft and smelled so clean; the way the lights of the city twinkled against the glass of the hotel room.

I have 3 favorite moments: meeting Emily Perl Kingsley in person, watching Rebecca and Amy and Renee and everyone hand out free copies of Road Map in the exhibit area (it was so fun, like Christmas in July!) and the awards banquet Saturday night, when Road Map won the 2008 National Media Award-Print. I made some sort of little speech that I’m sure was incoherent, because the whole time I was trying very hard not to cry.

There’s so much I want to remember! But right now I can’t seem to stop kissing my 3 boys, and when they wriggle away from me or “Oh, Mom” me, I am unbelievably content just staring at them, as if I’ve been gone for years.

Another voice of experience

Laura, sister to Theresa, shared this with me:

I just finished reading Roadmap to Holland and enjoyed every bit of it! My 16-year-old sister has Down syndrome; your story is very similar to hers in the medical concerns she had as a baby, and more importantly the positive way Avery transformed your family.

I was only 6 when Theresa was born, so while I was aware that my parents were sad (about the diagnosis), my brothers and I were excited to have a new sibling. I’m sure you’ve heard this before and experienced it yourself, but one of the things I appreciate most about her is the way she’s brought my family together, and held us together so closely since the older 3 kids in my family have graduated from college and moved away.

Thank you for your perspective, Laura. And you’re correct–I too have experienced the same quality of bringing people together, in my own family.

A voice of experience

I received this email from Katie, mom to four, including an adult daughter with Down syndrome. She writes,

I have just finished reading your book Road Map to Holland. I am the parent of a 25-year-old daughter who has Down syndrome. My 18 and 19-year-old daughters purchased the book for me. (I also have a 27-year-old son). I not only thoroughly enjoyed the book, but I was taken back more that 20 years and it jogged my memory to remember things I had long forgotten (or blocked out?)….

After reading your book, I feel compelled to share some of my stories about having a child with Down syndrome; particularly to share the absolutely positive aspects of this on my daughter’s 3 siblings. My son is a fire fighter/EMT and both of my younger daughters are in college studying to be nurses (one currently wants to be an OB/GYN nurse and the other wants to work in a NICU).

When Stephanie was born, my first thought after being told she might have Down syndrome was to worry about my then 2-year-old son and how this would impact his life. My husband and I agreed that we would strive to have a “normal” family life, for our son’s sake as well as ours. While at this point in time, “normal” probably doesn’t describe us; I think my kids are better than normal and I would love to find a way to convey to families of young children with Down syndrome what a wonderful (although difficult) experience this has been for our family.

It took me over 20 years to answer the question, “Why us?” I now know that her birth into our family has more to do with our other 3 children than it does with either her or my husband and me.

Thank you for sharing your experiences, Katie! As I mentioned to you, I can already feel these things to be true in my own, young family.

More moms reading Road Map

Jennifer recalls her experience with her baby’s capillary hemangioma, which a doctor casually referred to as a “birth defect” at Snapshot. She also writes about Road Map for this week’s “5 Minutes for Books” at 5 Minutes for Mom. (Go there for a chance to win 1 of 3 signed copies.)

At Camp Homeschool, one mom writes from the very heart of the experience: she’s just learned that her unborn child has Down syndrome, and is in the middle of the process of sorting out what this information means to her and her family.

And Sally of Charlie’s World related especially to the part where I describe my thoughts on evaluations, which was a “goosebump moment” for her. She also writes, “I believe this is a ‘healing’ read, which is a strange claim, but I genuinely felt better after reading it. It’s deeply comforting to read the thoughts of someone grappling with the same problems, joys, emotional highs and lows and prejudices that you are. Especially when they are a little further down the road and their message is ultimately, one of hope.”

Help?

It’s been a little more than 2 months since Road Map’s release; most of you, Pinwheels readers, have been with me through it all, even before the book was published, while I was still writing and then later, fretting, and then later still, writing about it nearly every day while I was on blog book tour, or linking to other people who were writing about it, and so on and so forth.

Which is to say, I can understand if you’re getting a little tired of it all.

But I have one last thing to ask: if you’ve read it, would you consider leaving a comment in the review section at Barnes and Noble, here, or Amazon, here? To date, there are just 5 between both sites, which makes it seem as if no one is reading. But I know–from your emails about your beautiful families, and your blog posts about your own experiences–that this isn’t the case, and I want other people to know it, too.

I’m asking because I think it’s important. I know I read the reviews when I’m trying to decide if I’ll buy a book. And the scarcity of them makes me feel as if I’ve sent one of my children out into the world unprepared–like it’s snowy, and we’ve forgotten the mittens; or it’s a bright sunny day, only no one has any sunblock or a even a hat. So I’m asking, do you have anything to share?

If you’ve read this far, thank you. If you go one step further, and leave comments, thank you a thousand times.

More Road Map news…

Stacey’s review of Road Map to Holland was published at a great new website, Root & Sprout: where kids and parents grown together. From the site’s creators: “Here at Root & Sprout™, we believe the relationship between parent and child is one that grows through mutual love and respect. With gentle, hands-on parenting, we can give our children the necessary roots to help them sprout.”

The website also has a call for submissions: June 17 and July 15 are the upcoming deadlines, as well as additional dates for special issues (follow this link for more details.)

Thanks for the link, Stacey!