Potato balls from Porto’s


Besides advocacy drama, this week was “real-life” full, too! I found a baby blanket pattern (Chevron Baby Blanket) that I could knit while parenting, well mostly while riding along with my family. Knitting keeps my hands busy, and helps me leave the phone so I can use my brain to enjoy my family. Those smartphones are not well-named.

Then, after Club 21 last Saturday, Prince Charming stopped at my favorite bakery, Porto’s! The papas rellenas (stuffed potatoes) are my favorite. They don’t look like much, but man are they delicious. He also went overboard with pastries and tons of deliciousness I should not have eaten, but I did. The mango mousse was, of course, perfect.

I have an appointment this week, and I am hoping my magical OBGYN will give me permission to get some energy back. First trimester is nearly complete. I have, as many sweet people have pointed out to me, a baby bump. And, now that Prince Charming picked up a few pairs of maternity pants, I am clothed everyday! Life could not be much better!

Confusion is at a minimum; exhaustion sets in a few inconvenient times each day. By 7 pm, I am a proverbial pumpkin. I used to be able to stay up until at least 8 pm. That time has passed.

Next week is our Club 21 Learning and Resource Center’s Walkathon! If you are able to walk with us, and have $21 burning a hole in your pocket, sign up to walk to donate today. We’d love to see you.

Down Syndrome Awareness month is half way over; last year we attended four Down syndrome walks in October. This year, we only have one scheduled. We had to cut back where we could, and that was something we could remove, knowing that next year might be a little easier to enjoy a full schedule again.

Today, we chill. It is a perfectly un-filled day of #nothingplanned.



Taking a six and a half year old to an early ultrasound


img_7840Prince Charming pulled Cutie #1 out of school a touch early, drove up to Bakersfield and met me in the parking lot at the doctor’s office. He slept in the car and was unpleasantly groggy when they parked.
“We’re going to see the baby”
Not interested.
“I know you’re tired, but I need you to get out of the car.”

Sullen silence.

This is not a child who lacks words for nearly everything. He is creepily like his mother this way. Try arguing with yourself. Horrible, right? Welcome to my world.

We had a little time beforehand, and we needed to make a four-year well child visit for Cutie #2, so we walked over to our pediatrician’s packed office and took care of that. Thank God, “Wild Kratts” was on. Thank you, Okezie Pediatrics, for showing PBS in the waiting room. Cutie #1 feigned a smile, sat down and watched his favorite show.

Then, we had to leave before the show was over. God help us. Seriously. Help us. Sullen Cutie got up, moped, dragged his feet, and walked out. Seriously, he is a Mini Me.

We got into the ultrasound room, and our tech got us started. I could see out of the corner of my eye that #1 was transfixed on the screen. Our clinic has a truly swanky ultrasound room with resplendent decor and overstuffed furniture. It would be better with movie theater seating, popcorn and cup holders, but I digress.

Our UST (Ultrasound Tech) announced that my uterus is twisted. Oh boy. Thankfully, not understood by the audience. We’d need to do a vaginal ultrasound. Oh boy. An unanticipated anatomical lesson awaits…

Sparing you the details, Cutie #1 was momentarily distressed, but relaxed after a quick, honest, and concise explanation.

Then, Cutie #3 appears on the screen. I am in love. Deeply, madly, passionately. Again. Like only a mother can be. #1 is unimpressed.

“It looks like a monster”
I smile, “Yes, it kind of does look like a monster.”
I look at our UST, and say, “I guess bringing a six-year-old in here can be interesting.”
She, too, is smiling, “They are the best. I love their imaginations.”
In the background I hear, “I’m six and a half.” Yes, you are. Sorry about that.
She’s the perfect tech for us. She’s still smiling.

Cutie #1 goes on the describe the developing younger sibling in various ways I hope never come up again during an argument, and I chuckle. He’s right. Humans are not the most esthetically pleasing at 7 weeks in utero.

You may wonder…

You may wonder what our due date is, or how far along I am. That’s a reasonable question. Short answer. I don’t know.

Then, you might wonder, why share this news so early.

Here’s the long answer.

Miscarriage and Stillbirth are still taboo subjects in our culture. That needs to change. Women miscarry every day. According to the March of Dimes website, between 10-15% of known pregnancies result in miscarriage. I guarantee you every one is remembered. Each one is grieved, and each one is a loss. Many of these losses are the result of chromosomal conditions. Cutie #2 with her chromosomal condition has made it so far. She made it through a rare congenital condition, and we are knocking on wood.  We only live one day at a time. That’s all we get.

If we are so incredibly lucky (and I specifically say lucky, as I refuse to say blessed and thus blame God for every miscarriage and stillbirth suffered by my loves around the world) to bring our baby home, it will be with the deep knowledge that it could have gone differently. It could still. And it’s all worth it. Each day is worth it.

I love many who have experienced unspeakable pain, and I may still. My fingers are crossed. Today I am pregnant. Let’s celebrate!

So, why would I want to share this excellent news at such an early date when I know all too well how fragile life is? I share because I want to celebrate each moment, and I know that moments are fleeting.

Anyone who tells you otherwise is simply confused.


Help exists for  Stillbirth and Miscarriage, please reach out. If you have more resources, please send them to me, and I’ll post them.


Compassionate Friends




Chronic Confusion

Since Cutie #2 was born with her designer genes, something inside me has been unsettled. I wanted to be able to tell our story, but I also didn’t want to confuse her story with my own. As a result, I’ve collected (in my own brain) many stories which I’d love to share with you…assuming my forty year-old brain lets me retrieve them at the right time.


How did that happen?

Somehow it did. And almost immediately my brain failed me. For years, my optometrist has told me, “Just wait. Your eyesight will be like this when you’re forty.” And he would proceed to change that confounded machine to the blurriest possible settings. Seriously? What a fun job! Mess with people and get paid for it.  Another career for my next life.

So clearly, it came as no surprise to me when my brain failed me. I couldn’t remember what I was doing. I couldn’t focus on work, advocacy, children, husband, house, work, did I mention work? My brain was failing me.

I didn’t hesitate; I immediately made an appointment with my Internist. He nodded, listened, ordered myriad tests for thyroid, hormone-imbalance, allergies, everything. I could see on his face the “look”.  You know, the one that says, “What does she expect? She’s forty.” To his credit, he didn’t utter the words. I even complained, “None of my pants fit! All of a sudden! It’s not fair. I just went shopping in Minnesota where there is no tax on clothes!!! It was less than a month ago.” Again the “look”.

I left my appointment and sat down in my car. I glanced at the checkout paperwork the doctor’s office printed.

Reason for visit: Chronic Confusion

At least it didn’t say, “She’s forty, what did she expect?” Insurance would never cover that condition.

It dawned on me a few mornings later that I might be entering the lovely and relaxing time of perimenopause. My monthly visitor was again late. Just in case, I thought I would do a home pregnancy test. I had two nearly-expired ones left from our procreation days. No problem.

First one – colossal failure. Not enough of a sample.

I took the last test with me, peed in a public restroom in a location which shall remain nameless and before I could zip up my too-tight pants, I was pregnant.





Excuse me? What was that?

Now I’m giving myself the “look”. However, this look includes “What have we gotten ourselves in to?” We have two fabulous kids: one who hates wearing jeans and one who rocks designer genes. Why not add one more to the mix?

Welcome to our Chronic Confusion.