Red Lipstick Therapy

Scrutinizing my reflection and contemplating my upcoming birthday I realized that I not only look my age, but I also look something like my maternal grandmother when she was my age. I decided to accentuate the similarities with bright red lipstick like Grandma (and all the hollywood starlets of her day) used to wear. The change was dramatic. I was mildly uncomfortable, but genuinely emboldened. Red lipstick, it turns out, makes me feel cheerful.

Mermaid noticed the difference right away and was mesmerized by the presence of lips on my face. She focused trying to imitate all the shapes they made as I spoke or sang to her. Could this be a break through in her speech development? Maybe. I'll be wearing red lipstick more often... for both of us. Thank you, Grandma!

Mermaid's Birthday

Mermaid is rockin' two years old! She didn't know what to do with her candles, but she was all over the cake.

Running Down a Dream

I have another post on Dare to Dream this month. I just love that site!
This entry is about Mermaid's medical mayhem and how running a marathon made it easier.

Happily After

Last year Mermaid experienced hypsarrhythmia A.K.A. infantile spasms or seizures. In this season of gratitude, and as her second birthday approaches, I'm reflecting on that time in our lives. I am so grateful to be outside of that experience, looking back and knowing the conclusion. The uncertainty was crushing. Now doubt is merely the antagonist inevitably defeated by our happy ending.

We have so many "Befores," "Durings," and "Afters" in our days. "Durings" always seem so long, even when they're not. And "Befores" can be discouraging because we can never really go back to them. Even though we can never be sure what the "Afters" will bring, today I'm especially thankful for "After."


BEFORE: Happy Mermaid! So adorable. We didn't even know she had DS, let alone the shadow of seizures in her future.

DURING: The electrical brain chaos caused developmental pause and the steroid-like meds caused weight gain slowing her down even further; no smiles, no laughs, no interest and lots of sleeping.

AFTER: Mermaid began to wake up last December and here she is preparing for take-off in a helicopter aboard the U.S.S. New York. She is all toddler learning to walk, talk, sign and make-believe. She's curious and into everything. She pulls all books off the shelves and has started getting into the refrigerator. I don't even mind cleaning up. I am so thrilled that she is curious and happy.

Torpedo says: be-gone-zo

As a kid, I hated all beans especially those slippery garbanzos that would fly away every time I tried to stab one with my fork.  Good riddance, I'd think as the sneaky bean would shoot off my plate.   Now, I love them.  Garbanzos are a staple in our diet.  Torpedo, who asks for them regularly, calls them "Be-gone-zo beans."  And with him around to gobble them up, they are!

P.S.  I don't buy baby food anymore.  I make "hummus" for Mermaid by dumping a can of garbanzo (or any bean) and veggies (fresh or canned) in the blender with some olive oil (remember young ones need 40% of their calories in digestible fats).  She loves it and Torpedo has even started stealing bites from her bowl.

First Fairy

This has been an exciting year of many firsts, not just for Mermaid, but for all of us. Thankfully, we have traditions to anchor us periodically. One of the oldest and most famous traditions in our family is the Birthday Fairy. The BF helps us celebrate the glorious golden age of earth life. Today, Mermaid got her first visit from the BF. We are so grateful to have Mermaid in our family and she's pretty happy about it, too! Or, she may just be happy because, from her point of view, the decorations look like gigantic rainbow breasts, a nursing baby's dream come true! (Her Dad gets credit for the rainbow comment.)

Mermaid Update

Some of my sisters and I have started a blog to chronicle our adventures with Down Syndrome.
You can find the latest here: imdownwithdowns.blogspot.com

The upshot is that Mermaid is currently being treated for seizures called infantile spasms. I cry more than usual and have a hard time focusing, but we've had lots and lots and lots of blessings.

We love you!

Mermaid

Hi Everyone,

It's a gorgeous day! Many of you know that we've been concerned that Mermaid may have Downs Syndrome. Today, we had an excellent visit with a pediatric geneticist. Get this name, Kawame Anyane-Yeboa. Wow! Our genetic counselor was Edwin Guzman. That was a little easier to say. Anyway, after filling out our family medical history chart and discussing our concerns about Mermaid, they examined her. She was a total charmer, of course! I've been reading up on this so I was listening for clues. They noted slanted eyes, depressed nasal bridge, tendency to stick out her tongue, thin silky hair (What?! I never read about that sign. I guess that's a benefit), shorter curved pinky and hypotonia (low muscle tone).

Then came the big talk. They said, many of the classic markers for Downs Syndrome are not found in Mermaid and though her muscle tone is on the low end of the spectrum she's actually doing really well (she rolls over, brings her feet to her face, stands and bears her body weight, etc.). She also gurgles and hums to me. She makes signs to me about what noises to make for her (I'm the dolphin, she's the trainer). She smiles, laughs, etc. So.... They ordered a blood test for Downs Syndrome and a "Fish 21" that's industry-speak for checking for Mosiac Downs. http://www.mosaicdownsyndrome.com/faqs.ht
They're also running a thyroid check. I didn't really get that part. The upshot is that they feel certain that Mermaid is out of the ordinary. We already knew she was extraordinary. But they're not sure exactly what type of Downs Syndrome it is yet, so we're gathering information. It will be 2-3 weeks before we have results and get to discuss them.

I've been learning about this for some time. Sometimes a little paranoia is a good thing. ;) My Hero prefers to wait for facts and then get a life perspective. Once we know what we're dealing with, we'll seek out other families in similar situations and learn from them. He says we'll all get matching T-shirts that say "We're down with Downs!" He's so fantastic and ready to embrace whatever life has in store. I'm sure we'll meet several medical professionals along the way as well.

For now, our family is pretty much the same. It's a relief to know a little more and digest this new information incrementally. I know Mermaid is important to you and I wanted you to have a chance to digest the information incrementally, too. Sure, we wish Mermaid laughed more often and had stronger muscles, but hey! she's got that silky hair ;) We're really so happy to have her in our family and we just couldn't do without her. We feel especially grateful to have enjoyed such a remarkable home birth experience which allowed all of us to fall completely in love with her before worrying about labels and secondary (and I might add, *temporary) issues. We have already been so richly blessed by her presence and we're sure the future holds more of the same.

Love Ocean's 7,

My Hero, Urban Tangerine
Star, Angelfish, Sparkle
Torpedo & Mermiad

*Because of the Fall of Adam and Eve, we are subject to physical death, which is the separation of the spirit from the body. Through the Atonement of Jesus Christ, all people will be resurrected and saved from physical death (see 1 Corinthians 15:22). Resurrection is the reuniting of the spirit with the body in an immortal state, no longer subject to disease or death.

On Set

I'll let My Hero post about "Berlin", but I just wanted to share some photos of our family on set.  Mermaid was cast as baby Christian (nepotism? yes, but very sentimental).  She had an authentic costume and was a favorite with the cast.  Trpedo was considered for toddler Christian, but he's far too combustible for film.  Still, we got some sweet shots of him in the costume.  The rest of us had fun hanging around and learning how movies are made.

Silly Mermaid

Wow! They just grow up so fast.

Best Parts

Maybe I should just skip to the Now. That would be so Zen of me. And Zen is very hip right now. But I just can't!! So here are some of the best parts of our very slow and mellow Christmas-New Year holiday.



We forewent dozens of photos of the girls unwrapping presents and opted for one group shot. That way we actually got to experience Christmas with them rather than merely capturing it to relive together later. I have to include the iconic, chocolate-faced boy and his first train set. Classic.


Grandma O. and the Drake family were stopping by NYC anyway, so we got to see them for a few hours. (That's our baby, Mermaid.) Hooray for living in a tourist town! The Loomi were in DE visiting Grandma Loomis and gamely spent an extra 4 hours on the road with two small children to visit us. Hooray for living just close enough to other relatives!


This year we brought in the new year with percussion. Despite the new baby, Dick Clark's brief and somewhat sad appearance on T.V. and Sparkle's extended tears over not seeing Hannah Montana live despite her being mere blocks (150) away, nothing says party like bongo drums and tamborines!! Happy New Year everybody!

Welcome Home!

December 17, 2007 at 2:06 pm
Mermaid joined our family weighing in at 7 lbs. 5 oz. and 20 inches long. She's a blue-eyed redhead just like her Mama!

After 6 hours of labor, Mermaid was born at home in the soothing warm waters of our very own bath. Mermaid and I were attended by two very competent and caring midwives; the now famous Cara Muhlhahn and our longtime friend, Lynn Fisher. As labors go, it was the most gentle for me and has afforded me the quickest recovery. Mermaid is absolutely delicious and we can't get enough of her (especially Torpedo!!).

A special thanks to our upstairs neighbor who cared for our four other children while we were making our miracle happen. It was an encouraging joy to hear them laughing in the hallway or outside my window.

Making faces