Blog

1998 and Farewell Homemade Pie

Eighteen years ago, I met my Prince Charming. We’ve certainly had our share of bumps along our road, but I wouldn’t trade him in on a goldfish.

Eighteen years ago, in 1998, the majority of my college freshmen were born. You heard that right. My students were born in 1998. They are adorable. I am always a little dismayed when I ask questions about students’ first historical memory. It’s no longer history… it’s just a news story now.

How is it possible that Prince Charming and I have known each other as long as it takes for a human infant to reach adulthood? How is it possible that “The Miseducation of Lauren Hill” is eighteen years old? So many questions that baffle me.

In two months, I will be the mother of a seven-year old. A few months after that, I will give birth to my third (and final) child. A few days later, Prince Charming will complete another spin around the sun, then I will do the same. A few months after that, Cutie #2 will bring up the rear of annual planetary travel and turn five. This cycle of constant change and evolution is dizzying, and I am eternally grateful for my Chronic Confusion.

A week ago, I roasted a pumpkin, pureed it, prepared it for Thanksgiving Pumpkin Pies. Cutie #2 watched me cook, bake, prepare, and wanted to help. I went to the bedroom for a few minutes, and hell broke loose.

All of a sudden, I smelled smoke, but not really smoke. You know, the smell of hot, somewhere after your Emile Henry Ruffled Pie Dish cooled down on the stove top, but after your industrious four-year old turned the stove on to heat it up again…

Goodbye, Pie Plate. You made it to just shy of our five-year anniversary. You were supposed to last longer than our marriage. You didn’t. You made amazing pies. You will be missed. You were beautiful. You were lovely. You clearly did not appreciate being heated directly on the stove. Prince Charming will enjoy a Costco Pumpkin Pie today (gasp!). I will lose my Minnesota card, yet again.Screenshot 2016-11-24 05.48.12.png

On this Thanksgiving, and every day, I am grateful for the past eighteen years, and the eighteen years before that, and the four years before that. I am grateful that Prince Charming loves to stay home on Thanksgiving. I am grateful we both love to cook. I am grateful.

 

UPDATE!

Proof I have the best best best husband ever!

This arrived this morning.

Brand new Emile Henry Navy Ruffled Pie Dish.Emile Henry Navy Ruffled Pie Dish

A day in our life

Tomorrow is my sixteen-week appointment with Dr. Fabulous. Cutie #3 is starting to kick and squirm, by far the absolute best part of being pregnant. Today, NDSS released our promo for the Buddy Walk on Washington with our Congressman. Cutie #1 is still wearing his way-too-small Superman costume on a regular basis (this kid seriously cracks me up).

IMG_7934.jpg

Cutie #2 is saying and signing “climb”, “train” and “game” with such precision that I am nearly convinced to get the Thomas the Tank Engine puzzle down off the shelf for her; however, since she’s already found herself a stool, is trying to climb the wall, and (so far) remains safe, I will let her keep trying for a minute. Raising independent kids is a double-edged sword.

It’s November and 70 F in the mountains. Life couldn’t be much better.

This week Cutie #1 learned to make phone calls independently. That sounds like a good thing, right? Poor Grandma Rapids. He neglected to acquire the skill of polite turn-taking in phone conversations and proceeded to talk her ear off. Who doesn’t want to hear about the incredible Bat Jet he made by himself with the Lego set his mom bribed him with this week?

Bribery works. #BestParentingTechniqueEver #NoJudging

Flu vaccines went off without a complaint, a hitch, or even a tear.

“That didn’t even hurt,” he said.

“Would you like another one,” I heard myself respond. (What is wrong with me?)

“Nope. I’m good. Let’s go get some Legos.”

 

End of story.

 

On the way home tonight, I asked the kids, “What do you think we should call the baby?”

Cutie #1 responds, “Michael.”

“Or Duckhead.”

“Maybe Tiger.”

Duckhead? I can’t imagine anything might go awry with that name.

Back to the drawing board on that one.

 

 

 

More than a mirage

This week, our Great Nation witnessed a pivotal election. Our choice was largely between two imperfect candidates, as all candidates are, but this election cycle was more divisive and contentious than any I have seen. This election has left me in melancholic fear. My fear is not for myself, but for my daughter. You see, my daughter has a disability. My daughter has Down syndrome. And after witnessing the behavior of our President-elect over the past year, and that of his hoards of supporters, I fear the future holds challenging times for my daughter and our family.

October was Down Syndrome Awareness Month (#DSAM). Some in the disability community suggest awareness is not enough, and I agree. Others criticize the dependence on “inspiration porn” and the praise lavished upon people who make people with disabilities (PWDs) into helpless victims while making themselves appear saintly. Again, this criticism is valid.

Don’t misunderstand me. My daughter is adorable, and I am so proud of her. However, society has an arbitrary focus on esthetics. Awareness campaigns make me worry about the day society no longer views her as cute or cuddly. I worry that her inherent worth as a human being will depend on her physiology, but she, like all children, like all people, is so much more than cute.

She is human and deserves a good life. She is not broken. She does not need to be “fixed”. She is whole. She is worthy of respect, kindness, and love.

And so I advocate. I advocate for legislation at the state and federal levels. I advocate for legislation that helps her and others with Down syndrome meet their potential. And if her reality does not match my hope for her independent future, I want to ensure the safety net she might require exists.

Advocacy requires an eye on the long view. It is not a sprint, but a marathon. I receive no financial gain for my advocacy efforts, but something infinitely more valuable. I help give my daughter a shot at an independent future. I show her how to raise her voice, so when she is older, she’ll raise her own. I help make our nation great. Every. Single. Day.

Advocating is not a guarantee.

It’s a chance. It’s a lifeboat. It’s hope.

This is why the election was so personal to me. Our nation selected a candidate with no disability platform even though twenty percent of our nation’s population has a disability. We elected an imperfect candidate, apparently with the hope that he’d be able to do something different. We elected a mirage.

When a person demonstrates bigotry, he shows us his heart. When an elected official does it, usually, there is backlash. Instead, the public seems to have given itself permission to follow his lead. This does not result in a more loving and accepting world, but one where bullying and hate becomes accepted, tolerated, venerated. This does not reduce prejudice, but increases it. This public permission to be unkind and, frankly, un-American, frightens me, as much as the potential political damage.

The amount of damage done in the next four years depends, in large part, on you. On me. On us all.

So, I have cried enough. I have said my piece. I will make my peace. I will not let fear and despair win. I will love and accept and advocate and continue to work to make America, our America, great. I will work to make it a loving and accepting place. And I will wear my safety pin. I will show others that I am a safe space. I will help hold us together, but I cannot do it alone. None of us can.

safety pin9.jpg

Good luck, Mr. President-Elect. Our nation needs you to be more, and better, than a mirage.

 

Charlie Banana v Pampers

I told you I’d update you on the Materni21 NIPT screening I had drawn last Tuesday. Since we knew the results wouldn’t return until 10-14 days out, I was surprised when my Fabulous OBGYN called me Tuesday night. Of course, my ringer was off. It usually is. Since she is fabulous, I sent her a text… we do that now… and she called me right back.

There is something to be said for believing your intuition.

I am thrilled to know I can deliver Cutie #3 in Bakersfield with Dr. Fabulous since the screening came back without evidence of trisomies. For people who haven’t hit the genetic lottery with the births of your children, that means no detected genetic conditions. Now, Dr Fabulous certainly can, and has, delivered babies with genetic conditions, like Down syndrome, but I would not have delivered in our hospital because of the possibility of a rough start.

Cutie #2 was very lucky to not have any additional conditions (that we knew of) when she was born in my hometown hospital in Minnesota. That is a story for another day, but Cutie #3, assuming all goes smoothly from here on out, will join us in Bakersfield while Cuties 1 & 2 hang out with their Auntie J and Uncle T (hopefully Auntie J discussed this with Uncle T before today). Friends are the family we choose, and our friends are a cherished gift.

So anyway, when Cutie #3 arrives, he will likely pee on his own head when we change his diaper. Boys do that. At least Cutie #1 did. And so did ever baby boy whose diaper I changed while babysitting. As did the majority of my 20-some male cousins. I assume my little brother did, too. Probably Prince Charming, too. It’s pretty common.

 

Tiny diapers, here we come! Maybe we’ll finally use our Charlie Banana diapers,

Screenshot 2016-10-28 03.59.29.png

but I’ve met us.

It will likely be Pampers. Again.

Screenshot 2016-10-28 03.58.14.png

 

 

 

#presumecompetence

Yesterday was an all-around amazing day. It started beautifully with Cutie #2 showing prowess voiding bodily fluid in the appropriate receptacle (read: She took a huge dump in the toilet without prompting).  My disability awareness event featuring Miguel Lugo (writer of the short film, My Reality, and sitdown comedian – he has CP. He sits down. He’s funny. I promise) on campus was packed with students – many of whom I did not bribe to attend. One of my fantastic Transition to Independent Living (TIL) Students gave our guest speaker (and me) a tour of TIL facilities. She rocked the tour.

Screenshot 2016-10-26 05.50.23.png

And, today, I get to finally meet Christina Elliott, California’s Executive director for CalABLE.

ABLE. Wow. Thank you, Steve Beck. Thank you, Brad Pitzele. Thank you, Jawanda Mast. Thank you, Sara Weir. Thank you, yes, even you, Joe Meares. Thank you, Debbie Revels. Thank you, Heather Sachs. Thank you, Becky Switalski. Thank you, Sara Wolff! Thank you to all of these advocates and so many more who never gave up. ABLE would not have become a reality without them all.

My life is charmed.

Here’s the thing. Down syndrome brought me to all of these things. All of the awesome that happened yesterday. Everything, including the pride over the colossal dump, occurred because of my life as the parent of someone with Down syndrome. Period. It never would have occurred to me to make a difference in the world in this capacity. I would love to think that I’m evolved, but I am not. I am human. I bet you are, too. Humanity is a pesky critter, isn’t it? Until we are in a situation, we often do not make impact. Even with opportunity, some people still don’t. That’s their little red wagon, as Grandma Reet would say. My parents did not raise me to sit on the sidelines, so off I go.Screenshot 2016-10-26 05.55.57.png

Life is more incredible when you start to recognize your gifts, accept them, and do something with them. We are not victims. Down syndrome is not the end of the world – unless you make it so. Nor is Down syndrome the savior. For me, it was, and remains, a turning point. An opportunity. A new path. A choice. You can do with it what you wish, but I choose action, love, acceptance, and gratitude.

Pity – party of one…

My golden pregnancy is mostly good. It’s exhausting, but not physically more difficult yet. However, for the past week, I’ve had a headache. I thought dehydration… added more H20. I thought not enough coffee… added a cup to my one cup a day. (Don’t judge – I know how many milligrams of caffeine are in it. It’s absolutely worth it.) I had no more thoughts. Then, I fell asleep.

I woke up Monday with a sore throat. Ouch. Still hurt when I got home. Like any good daughter of an ICU nurse, I checked the back of my throat in the mirror with a flashlight shining on it… seriously? Patches of the plague. Probably not actually the plague, but seriously memorable white and green nastiness. Sigh.

I went to my fabulous OBGYN this morning. I told her my plight. Much like my ICU nurse mother would, Dr. Fabulous looked incredulous when I stated I had nasty slime in my throat, but no fever. Sigh. It hurts, or at least annoys, even if you people think I’m exaggerating. Off to gargle salt water.

So, I did what any good community college professor would do. I cancelled my classes, came home, and wrote about it on a blog read by 100-150 people, tops. I love you guys!

The best part of my visit with my fabulous OBGYN was hearing Cutie #3’s heartbeat. Cutie #3 has a gorgeous heartbeat, perhaps the nicest heartbeat of all three kids. Come to think of it, I believe all three heartbeats sounded surprisingly similar. Maternal Amnesia Strikes Again! Since this Cutie is undoubtedly my last Cutie, I will stand by my baseless claim, and enjoy the strength and rhythm that only a fetal heartbeat can provide, just two days shy of 12 weeks.

Today, for the first time, I had a blood draw for a non-invasive prenatal test  (NIPT).  I prided myself on my Catholic upbringing in past pregnancies, and my firmly held belief that we get the right kids, and I opted out of this optional test for Cuties 1 & 2. I continue to hold that belief deeply in my soul. We have the right kids. However, having won the genetic lottery once, and knowing the chances of my winning a lottery twice in one lifetime are slim to none, I would like to know at which hospital Cutie #3 might best be born at for immediate care, if that becomes necessary. The NIPT of choice at our clinic is MaterniT21. Our chance of having another Cutie with trisomy 21 are 1 in 99. We are not having 99 babies. I’ll let you know what happens. If Cutie #1, Golden Momma, and the Chinese Astrology Chart are correct, Cutie #3 will be a boy. None of these methods are scientific, to the best of my knowledge, but who knows.

For those unfamiliar to the world of prenatal screening, there is a blood draw – likely the largest blood draw I’ve ever had for any test ever. It’s sent away to a lab, and results return (in our case) two weeks later. We will learn gender and about the chance of genetic conditions for the first time. Magic!

This is not the same as a diagnosis, which still requires more invasive procedures. Diagnosis will not happen for us. We choose to have the babies who choose us, and for us, anything that increases risk of miscarriage is not an option. I respect everyone’s choice in this matter, and it’s not a judgement. It’s simply not as important to us to have certainty in our children’s future. We know very well that our children’s futures, as well as our own, are the furthest things from guaranteed or predetermined. We embrace the unknown, but are happy to be a little more prepared.

So, as I sit in my nearly silent house, with a headache trying to creep in, and a throat full of plague, throwing a pity party for one, I hope you are enjoying good health, happy times, and embracing your uncertainty. Chronic Confusion takes more energy than I realized.

img_7857

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.

 

 

#ThreeOutfitMonday

#ThreeOutfitMonday

This week started out with an eruptive bang! Cutie #2 caught something like a minor plague, and on it went. She’s fine now, quite frankly she was mostly fine then, but it did result in me changing my clothes three times before I left Monday morning. This would normally be no big deal, but I only have three pairs of maternity pants.

Best part: Cutie #2 is back to her spunky self.
Worst part: Laundry has piled up. Not a big deal.

After work, I headed to the booming metropolis of Bakersfield to see if I could meet one of California’s Senate candidates. Turns out, I might be in some of their footage, and I am REALLY glad I found the second outfit’s, shall we say, bodily fluids, prior to leaving that morning.

So if you see me holding a political sign for a candidate, know that it’s all for Cutie #2. She deserves every second of advocacy and so very much more.

Here’s a list of senators and representatives currently serving on the Congressional Task Force on Down Syndrome. If yours is here, know that this does not secure a vote, it simply keeps a line of communication, education, and understanding open between our Down syndrome community and government. If you have a minute, send a note to your Representative or Senator either a) requesting he or she join or b) thanking him or her for committing to our community.That would make my #ThreeOutfitMonday worth the effort. There are zero Minnesotans on the #DSTaskForce. What’s up with that Minnesota?

 

Screenshot 2016-10-13 06.04.50.png

 

No permanent friends; no permanent enemies

In legislative advocacy, there are no permanent friends and no permanent enemies. I heard this at The Arc California’s Public Policy Conference. I guarantee the irony is not lost on me today. I certainly hope the actions of the National Down Syndrome Congress do not lead to permanent enemies; however, it is clear that NDSC has forgotten its purpose and mission.

Screenshot 2016-10-07 16.23.23.png
Screenshot 2016-10-07 16.23.15.png

In yesterday’s Disability Scoop, “Proposed Changes To ABLE Act Draw Opposition”, it is clear that the disability community is not united on the ABLE Improvement Bills. While it seems clear that no one is theoretically opposed to increasing the age of disability onset for ABLE account holders, there is a clear difference of opinion in how political capital and compromise should be used to improve legislation. I happen to believe we should pass the legislation that we can and continue to work to improve weaknesses.

Opposing all legislation, because you cannot pass some legislation, is short-sighted, wrong-headed, and a sign of extremely poor leadership.

While it is vital to work towards the age increase needed to make ABLE work for more Americans, in the current political climate, the ABLE Age Adjustment is unlikely to pass. Even worse, with the presidential election looming, it could become even less likely that any of the ABLE Improvement Bills will be taken up in the near future.

There are three important pieces of legislation at stake here: 1) ABLE to Work – HR 4795 (increases allowed annual contribution from $14,000 to $25,700); 2) ABLE Financial Planning Act – HR 4794 (allows the rollover of traditional 529 to 529A); and 3) ABLE Age Adjustment HR 4813 (increases the onset of disability from age 26 to 46). According to the article in Disability Scoop, the first two bills together cost about $50 million over ten years; however, the third costs $2 billion by itself.

I have walked the halls of Congress to advocate for my daughter and other people with Down syndrome (most, perhaps all, of whom were diagnosed with Down syndrome prior to age 26). I have spoken with representatives from both parties about my daughter’s needs and our family’s desire for her to live an independent life. Many are enthusiastic to support her; all of the them answer to tax-payers. $2 billion is no joke.

So, until National Down Syndrome Congress reverses course and chooses to support the Down syndrome community, they will not have my support. I do not wish to have a permanent enemy in NDSC. I wish for collaboration and advocacy, but clearly, NDSC no longer represents, advocates for, or cares about my daughter or other people with Down syndrome.

I call on the NDSC Board to remove NDSC’s support for the Consortium for Citizens with Disabilities (CCD) and immediately cut all ties with the CCD. I highly recommend other disability groups do the same.

essays are a pain; genies are amazing

The day began like most Mondays. I arrived in my office a few minutes before 8 o’clock, I fired up my laptop, I signed in to my class management system to start grading essays, and headed out to check on the troops. This is my morning routine, and it is especially important when I am avoiding the essays I wanted to finish grading last week.

The troops were fine; none needed me bothering them with my quirky sense of humor, so I went back into my office and began the unbearable: grading essays for my online English course. I provide feedback, which is largely ignored. I proceed on to likely break some hearts.  It’s not the goal to break hearts, but it happens. Online teaching (and learning) is really hard.There is no tone of voice, but the students don’t seem to believe that. There seems to be a widely held belief that I am mean. Take my class face-to-face, and no such belief, but online, I am Professor Dragon Lady.

I have a stand up desk, and it allows me to provide feedback while standing. Standing is better than sitting when essays are good. This sounds great, but the essays were just too bad today. And the pain began. Oh man did it hurt.

With this sub chorionic bleed, I was told if I have any cramping or pain, to let my doctor know. I could not tell if I had eaten too much broccoli last night, read too many bad essays this morning, or had cramping, so I called.

By noon, I was back in my favorite ultrasound tech’s exam room. As if she were a genie, I made three wishes: 1. please let the baby have a heartbeat; 2. please let it be the right speed; and 3. if you don’t mind, I’d like the sub chorionic bleed to have resolved.

Shazam! She’s a GENIE!

  1. Baby – growth on track! Life is good;
  2. Heart rate – 174 bpm – heart attack inducing for me, but perfect for baby; and
  3. Sub chorionic bleed has resolved!cutie#3.jpg

Baby is growing and measuring exactly on track. I still have a bit of discomfort and occasional sharp pain which I hope will subside as soon as these essays improve. Thank you for holding us in your hearts. It means more than you know.