6 words

6 seems to be a recurring theme with me lately; first, my 6 impossible things, and now, this challenge from Niksmom: describe your life in 6 words, then tag 6 others.  Here’s my 6:

Living loving laughing life is rich.

And I tag 6 of you, any 6 who want to play!  Email me and I’ll add your links when you’ve written your 6!

“Road Map to Holland”

Kate from Mother Words: Mothers Who Write read my book and was reminded of her own time in the NICU.  She says, “Road Map to Holland is certainly is a must-read for all parents whose children have Down syndrome, but parents who have lived through the NICU, parents of twins, and I believe all parents will find something in these pages that will resonate with them. It’s about more than coming to terms with a Down syndrome diagnosis; it’s about adjusting a worldview, breaking stereotypes, and opening oneself to the possibility of finding love in unexpected ways.”

There’s also an author Q and A at her blog–and she managed to prepare these insightful questions with a new baby in the house!

Believing in the impossible

I could fill a whole category with posts about what my children have taught me; about how they show me the way, as often as I show them.  This week’s ParentDish column is like that.  And it involves fish.

“Road Map to Holland”

Mom24 of 4everMom is mom to 4 kids, ages 5 to adult, and she’s also a grandma.  She writes, “I remember when I was pregnant with number 4, we refused, with my doctor’s blessings, prenatal testing. However, I was the dreaded ‘AMA’, so she did encourage me to have a level 2 ultrasound to see how the baby was. During the ultrasound the doctor berated me for not having an amnio. I did not want one for several reasons. I do not like needles! More importantly, I was scared of the risk of miscarriage that accompanies amnios. I was extremely excited to be pregnant with number 4, after being told years before that we would never have more than 1, I did not want to take ANY chances. Also, I knew I could never choose to abort, so why go there? In some respects, that is a cowardice on my part. There’s also a measure of, ‘if I don’t know, I don’t have to deal with it.’  Anyway, this doctor made it very clear he felt we had made the wrong choice. He kept telling us over and over, if you refuse to do the amnio, I can’t guarantee you a healthy baby. Well, I have news for him, even with the amnio, he couldn’t guarantee us a healthy baby. There are no guarantees. Life just doesn’t work that way.”

 

Congresswoman Cathy McMorris Rodgers

shares these notes from the recent launch of the Congressional Down Syndrome Caucus:

“The launch of the Congressional Down Syndrome Caucus last week was a big success!  The co-chairs are Rep. Pete Session (TX-32), Rep. Patrick Kennedy (RI-01), Delegate Eleanor Holmes Norton (DC-AL) and myself.   I recorded a video statement regarding the Caucus and its goals that I sent to you just before Mother’s Day.  If you haven’t seen it yet, click here. 

Eddie Barbanell, who has Down syndrome and starred in the movie “The Ringer,” shared a rap that was remarkable!  He reminded us that people with Down syndrome are dedicated, hardworking and valuable. He encouraged us to emphasize potential and acceptance.  People with Down syndrome, he said, belong in the mainstream—the mainstream of life.  They have the same needs as anyone: respect, love and camaraderie. He challenged Senators Obama, Clinton and McCain to join his campaign!  

Stanford researcher Dr. Bill Mobley gave a PowerPoint presentation on his research about Down syndrome (click here to download that presentation). The brain is a function of neuronal circuits.  With Down syndrome, not all circuits work well. It’s not that these neurons do not exist; it’s just that they do not work well. There’s an imbalance in excitation and inhibition circuits. The inhibition, the calming down circuit, is too strong thus limiting learning and memory. He challenged us to approach Down syndrome research as a special, biologically unique opportunity as breakthroughs in Down syndrome will explain the cause of the same diseases in people who do not have Down syndrome. “We’re not just asking what our country can do for people with Down syndrome; we’re asking what studies of people with Down syndrome can do for our country and the world.”  

We also heard from the National Institute of Health regarding its 10 year research plan for Down syndrome. (Click here for that release.)  I’m especially encouraged to see the coordination and emphasis on cross disciplinary institutes — National Heart, Lung, and Blood Institute supporting studies of the genes that contribute to heart malformations (it’s interesting to note there is no documented case of a person with Down syndrome having a heart attack) and sleep apnea; National Cancer Institute investigating various types of leukemia; National Institute of Aging targeting ways to treat Alzheimer’s; National Institute of Allergy and Infectious Diseases involved in immune response; National Institute of Mental Health focusing on treatment for mental disorders including autism, obsessive-compulsiv e disorder, depression, and psychosis; and the National Institute of Neurological Disorders and Stroke (NINDS) looking at how the brain is developed and affected). Congress requested this plan in 2007. I want to get more information.

It was exciting to see the politicians, researchers, and Down syndrome community coming together to coordinate and advance our shared goals

                                                                                                       -Cathy McMorris Rodgers

(Thanks to Rebecca for the links.)

“Finally!”

Beth of Not That You Asked (a fellow twin mama!) got her copy of Road Map in the mail and found herself sneaking moments to read it.  She recognized many of the feelings I write about from her own experience, and says, “About one or two pages into it, I realized I needed to get out a pencil and start marking passages of it that I could go back later and read to Steve because they perfectly, exactly described a scenario that we had encountered at the hospital or a reaction that we had during those early days when we were feeling so raw.  I’m late getting around to it, but I’m so grateful for this book, which is feeling very much like a balm to my soul. ”

Mamas making a difference

Michelle of DownBlogger has an idea for an online fund-raiser to help the adorable Parker.  She writes, “If a whole bunch of us created scrapbook pages, sets, or kits that could be sold on Ebay, we could send the Pages 4 Parker to a central disbursement person, who would ship them out as they sell. The pages could depict any event or milestone, from First Birthdays to Weddings, Baby Showers, Proms, First Steps, First Teeth, Ballet recitals, Karate, Baseball…the list is endless…just create a page that someone out there will want to buy, and allow us to send the profits to this precious child and help take some of the load off of his family.” 

Jessica of Raising Joey is donating 50% of her online Usborne book sales from now through June 10 to help Parker and Rhett, another amazing little boy facing serious medical challenges.  At my house, we’re big fans of Usborne books (what’s not to love?  The cute pig, the little duck, the “That’s Not My Monkey” which we’ve read maybe 1,000 times).  To shop, go here.

And Michelle of In the Life of a Child has links to many other opportunities to help Parker and Rhett, including one she’s created herself:  the chance to win one of four original stipple drawings, matted and framed, by making a $5 or greater donation.

 

6 impossible things

The White Queen from Alice in Wonderland has a line that goes like this: “Why, sometimes I’ve believed as many as six impossible things before breakfast.”  Which is exactly how I feel most days; and sometimes, not only do I believe 6 impossible things, 6 impossible things happen to me, too.

These are my most recent 6:  I’m going to Boston in July for the NDSC Conference, where Kathy Soper and I will give a presentation called “New Parent’s Survival Guide”; Penguin has agreed to provide 100 free copies of my book for me to give away at the conference; a week later, I’m going to San Franscisco for BlogHer ‘08, to speak on a panel with esteemed bloggers such as Susan Etlinger, Shannon Des Roces Rosa aka Squid Rosenberg, Kristina Chew, and Vicki Forman (go here for a contest with many prizes, including an all-expense trip to BlogHer ‘08); my one year anniversary came and went at ParentDish–I’ve written 102 posts and more than 64,000 words there; my author books finally arrived; and Avery said “hot cocoa.”

Amazing.  Thank you for being a part of it, my blogging friends.

Behind-er and behind-er

I keep thinking that this is the week I will get all caught up–I’ll wash the laundry and fold it too and put it away; the grocery shopping will be accomplished (did I say Accomplished?  Yes, because that’s what it feels like when you have to drive 45 min. each way to a tiny store where sometimes there is no bread, or only skim milk, and where, if 2 people meet in the same aisle, someone has to back out); the house will be swept and the wood bin filled (we’re still burning wood, folks!  This is Montana, land of the May snow!) and of course, the emails.  Every last email will be answered, every one of you kind souls who has written to share with me your thoughts, your lives, your hearts.  I will answer them all, I promise.

But since this isn’t the week I’m all caught up afterall (maybe it’s next week?), I’ll share with you the big new developments chez Groneberg:  1) all the boys got haircuts, and 2) the funky, in all senses of the word, red toilet seat with the cartoon of the owl winking at you has been replaced with a plain white one. 

If these aren’t signs of growth and progress, what are?

“Road Map to Holland”

Stephanie of A is for Aiden says that she bought the last 2 copies of my book in her town–one to keep and one to share with her local DS organization. She related to many parts of my story:  ”It took me 4 days to get through the book and many many of my own memories of diagnosis, birth, and NICU.”