Write with me!

One thing that being a parent has shown me, especially being Avery’s mom, is that often, what I need to do most, what I need to get much better at, is letting go of the way I think things should be.  The lesson: to watch as things unfold as they should.  To allow it to happen.  Even, to embrace it.

Tomorrow, I’m going to open my heart and mind to a new experience: NaNoWriMo.  For many many years, I was taught that writing was a serious pursuit.  That it should be undertaken mindfully; that to do it, you needed to study, and to be educated.  Which is true, of course, but only to a certain extent.  When I think about why I began writing, as an 8-year-old girl sitting on my bed in my pink bedroom with the matching nightstand/dresser/desk/hutch in white wood with gold trim, I hadn’t yet learned all that.  I wrote because it was fun.

Which is why I’m doing NaNo!  It’s the opposite of what I’d usually do.  It’s unexpected.  It’s challenging and a little bit scary.  And mostly, I think it’ll be fun.

Join me, if you like!  And if writing isn’t your thing, then pick something else!  Try something this month that you wouldn’t normally do.  That you think is too hard, or too scary.  Which might actually turn out to be NaNo afterall….

Wish me luck!


Another book to share!

Stacy and Michelle Tetschner have put together a collection of writing by parents and grandparents about the love and joy children with Down syndrome bring to our lives.  Windows Into Heaven–Stories Celebrating Down Syndrome is just that:  30 personal family recollections with a positive spin (except my contribution about Avery, in which I grumble a bit about how I didn’t feel ready to be his mom, though of course I come around in the end.)

The book includes writing from moms and dads and even grandparents about babies/children/young adults/adults with Down syndrome.  Some of my favorite parts of the book are when families share stories about kids older than mine, because it’s fun for me to imagine all the possibilites the future holds.

I have a copy to share!  If you’re interested, leave your name in the comments and Mr. Avery will chose a winner next week.

UPDATED TO ADD: And the winner is Stacy W.! Congratulations!

Week 5 of Down Syndrome Awareness Month

As a way of celebrating life with our kids with Down syndrome, each week I’ve been sharing my well-loved books and resources. I’ve saved the best for last: I’d love to give one special mom a beautiful Down Syndrome Awareness bracelet made by the talented Amy Flege, mom to 3 (6 if you count pets) including the adorable Mayson.

It’s made with crystal and silver beads, and features the Down syndrome awareness colors (blue and yellow) and a silver DS ribbon charm. It’s truly lovely, just like our kids.

If you or someone special you know would like this bracelet, leave your name in the comments and I’ll choose a winner at the end of the week.

UPDATED TO ADD:  We have a winner, #15 Hector.  Congratulations!

Flotsam and jetsam, or…

in other words, this: you know how, if you go into any house where there’s a toddler, you’ll always find a wicker laundry basket placed discretely behind the couch, or beneath a window, or even left right out in the open; and you’ll always find it because it’s just so very handy. A place to put all the debris of the day, a home for all the miscellany. That’s what this post is like. A wicker laundry basket of odds and ends.

Here we go:

Lots of folks have noticed my new(ish) header. And like most things in my life, there’s a loooong story behind even this littlest of changes. For a while now, I’ve been aware that people would like to see visual images of my family. I don’t know why it’s been such a dilema for me; still, I always had once excuse or another. First it was that I didn’t know how to get photos onto my blog, then it was that I didn’t have a camera. Then, I didn’t know how to use the camera. And of course, I’m always too busy….

I could go deeper, about my inherent dislike of cameras (which I wrote about in my book! Say Cheese!) or about Internet privacy issues (how many folks write whole books about themselves? Or, how many authors tell you where they live?). All of it would be true. All of it factored in.

But then, I saw Trig Palin on TV. I know Sarah Palin is sometimes criticised for “using” her family; I can’t speak to that point, because I don’t know what motives are in her heart. What I do know is that seeing Trig on television helped me, and my family, and particularly, Carter. And so I thought, If she can do it, so can I.

And later, I chickened out.

And later still, I made a compromise: one teeny, tiny photograph of Avery. In the header. For DS Awareness month.

Baby steps, no?

So thank you for your kind response, and the encouragement. I need it!

Speaking of encouragement, there’s another thing that’s been on my mind for a while now. When I returned from the NDSC Conference in Boston, I had many feelings about my weekend, all possible feelings really, everything you could imagine beginning and ending with tears, of happiness and of sadness, too. Sadness for the women who should have been there with us; for the ones who needed the support and education and resources even more than I did, women who couldn’t be there simply because they didn’t feel they deserved it, couldn’t make it work, didn’t have the money to go.

I want to help. I had this little plan that I could put ads up on Pinwheels and use the revenue for a scholarship each year to the NDSC Conference, and if there were enough money, maybe even send another woman to BlogHer too. I was so excited in fact that I contacted some people who explained to me, in the nicest possible way, that I can’t have ads in my current blog set-up. I’d have to change my hosting service, or other things (that are way too technical for me to explain myself), and the news, which was really just a little bump in the road, a tiny speed bump, was enough to set me back. For now, all I’ve been doing is wishing I could make it happen. And I need to do more than wish. So I’m asking you, dear Internet, for your input. Any thoughts? Any ideas? Any suggestions?

And finally, lots of folks have asked for an Avery update now that he’s 5 1/2. And like any proud mama, I’ll tell you all the things he can do–he’s potty trained. He feeds himself. He walks, runs, climbs, jumps. He’s mastered stairs, and he sleeps through the night in his bunkbed, which is on top (with rails), and he climbs up the ladder himself. He is excellent at the skill, Poke. He is also very good at bugging his brothers. Coincidence? I think not (I’m looking at you, Brittney).

He loves: music, our dog Bailey, his brothers, yogurt, drawing, bananas, oatmeal, cooking (especially licking the spoon), sweeping, folding laundry, and loading the dishwasher. And best of all? He finds me each morning, like he always has, and gives me the first hug of the day.

One last thing?  I’ve got another book to share.  Go here to check it out.

Week 4 of Down Syndrome Awareness Month

In honor of this month celebrating our kids, I’m sharing my good stuff! This week, I’d love to give away a copy of a new DVD that I first learned about in Boston at the NDSC convention, called Alphabeats. It’s a visual and auditory program for teaching letters to kids. Best yet, it’s a mom-created and mom-owned company.

If you’d like to try this product, leave your name in the comments and specify if you’d like upper case or lower case letters.

UPDATED TO ADD: We have a winner, #2 Lianna. Congratulations!

Week 3 of Down Syndrome Awareness Month

As a way of celebrating life with our kids this month, I’d love to share one of my family’s favorite resources–Joan Guthrie Medlen’s book, The Down Syndrome Nutrition Handbook–A Guide to Promoting Healthy Lifestyles. The title is deceptive, because really, it’s a book for everyone, especially if you are interested in healthier living. And it’s particularly helpful if you’re living with diabetes, or celiac disease.

Leave your name in the comments if you’d like this book, either for yourself or your community’s Down syndrome library, and I’ll choose a winner at the end of the week.

UPDATED TO ADD: We have a winner! Bennett picked the numbers, and he chose #1, Chrystal. Congratulations! Email me with your mailing address and I’ll send it right out.

The sometimes strange synchronicity of life

Like most of my stories lately, this one is long and a little bit rambling. It involves fall and homeschool and books and reading and even, apples. So here we go:

A few days ago Bennett asked me where apples come from. To use one of Bennett’s very favorite expressions lately, Yike! Some homeschool! So I quickly set up a field trip to a neighbor’s apple orchard, where we could pick MacIntoshes and Golden Deliciouses and Braeburns in the fall sunshine.

The apples were all around; many of them were falling from the trees, hitting the ground with quiet thumps. It was an odd sound, disconcerting, but also a little comforting, too. A letting go, if you will. A stripping away of everything else but what is essential, to face the coming winter.

Later, in the night, when the kids were settled and the house was quiet, I picked up my reading, a book by Louise Erdrich called The Painted Drum (HarperCollins, 2005). And here is what I read:

Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself that you tasted as many as you could.

Tears filled my eyes, because it seemed as if the words were written directly for me; as if they lept off the page and became a voice whispering gently in my ear.

And I thought, I’m trying. I’m tasting as many apples as I can.

Week 2 of Down Syndrome Awareness Month

October is a time to celebrate life with Down syndrome, and each week I’m sharing some of my favorite books and resources. This time, it’s a two-fer…I’d love to find a good home for Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic, Martha Beck’s personal account of the her pregnancy with her son Adam, whom she found out had Down syndrome via prenatal testing. And I’d also love to share The Memory Keeper’s Daughter, a novel by Kim Edwards. (Both books were part of a lively online book discussion that you can read about at Downsyn.com.)

If you’d like either, or both, of these books for yourself or someone you know, state your preference in the comments and I’ll choose a winner at the end of the week.

UPDATED TO ADD: We have winners! Nikki gets the copy of Expecting Adam and DGB will be reading Memory Keeper’s Daughter! Email me with your addresses at jennifergrafgroneberg @ yahoo.com (don’t forget to take out the extra spaces in the email address before you send it).

A new online resource

Flourish Network is a brand-new online community for parents of kids with special needs. It’s free, and if you sign up this month, you can win one of 10 signed copies of Road Map to Holand. I especially like the video interviews and podcasts, which include a converation with Joe Meares, the founder of DADS (Dads Appriating Down Syndrome), a discussion with Dr. Michael Harpold of DSRTF about the latest research on cognition in Down syndrome, and personal family stories from the parents’ perspective.

Happy October!

October is Down Syndrome Awareness Month, which is a wonderful time to show off our children and to celebrate life with Down syndrome (well, okay, I pretty much do that EVERY month, but in October it’s official…).

For my part, I have a copy of my favorite DVD about Down syndrome that I’d love to share, Down Syndrome: The First 18 Months, by Will Schermerhorn. It’s a wonderful introduction to all the important issues and people in the world of DS. If you’re interested (for yourself, or for your local Down syndrome support group), leave your name in the comments and I’ll choose a winner at the end of the week.

Too, I have lots more stuff I want to share throughout the month, so if you don’t win, don’t worry! There will be other chances for more books and learning aids that I love and want to share.

UPDATED TO ADD: We have a winner, chosen out of a hat, by Carter. It’s #1, Cleo. Send me your mailing address at jennifergrafgroneberg (at) yahoo.com and I’ll get it out to you. Congratulations!