Author: Kelly Kulzer-Reyes

I live an active life as the mom of a child with a disability. One might call me in-tune with the high anxiety involved with the COVID-19 pandemic.

In our current state of anxiety and confusion, one might benefit from a little planning. Here is what my family has planned.

We live in a somewhat-isolated rural mountain community. The closest hospital is over 60 miles away. Our county’s public health department in Kern is not yet set up to test locally, but private labs apparently can and are testing people. When the local public health department is able to ramp up, hopefully testing will happen faster.

Currently, our family is planning for the worst, and hoping for the best.

What is your plan, you ask? Great question.

We live in a tiny house, so transmission between the five of us is likely, even with the best hygiene procedures in place.

In the case that both my husband and I are infected and hospitalized – remember, I said plan for the worst—our children would need care. They would need to be taken to my husband’s sisters’ home where his brother and sisters would need to care for them while we recover. All of the children would need to be tested first, and I don’t know if our community testing options recognize this need yet.

In the case that we slowly get this in our family, we have a two-bedroom care situation.

• Sick people in the bigger room, with the attached bathroom.
• Healthy people sleep in the smaller room.
• All sheets and surfaces washed daily using four teaspoons of bleach per quart of water is my plan based on Dr. Clarissa Kripke’s panel on the recent COVID-19 Webinar hosted by Disability Voices United.

If our daughter with Down syndrome is infected, our plan is slightly different.

• Care at home until her pediatrician tells us (or we feel) that hospitalization is needed. For us, heading to LA County is more likely.
• All sheets and surfaces washed daily.
• Getting all of us tested is key here. If the rest of us remain negative, we will move the family south until she recovers.
• I will likely stay with her in the hospital while my husband cares for our other two unless the hospital has a different care plan. Then, we will revisit this at that time.

Until the worst case happens, we are locked down. Essential trips only. We are lucky to be fully stocked for at least two weeks right now. As mountain people, we are accustomed to planning for about one week at a time of unanticipated isolation, but a month is harder, especially in a small space. We are doing our best.

We are taking the recommendations from the California Public Health Department seriously. This is not the time to doubt the education of medical professionals or our journalists. If everyone is wrong, y’all can cry foul later. Until then, do not endanger my family. I will not endanger yours.

We have already watched nurses and doctors save our daughter once. The pile of masks and protective gowns on the floor as people rushed in and out of her hospital room is burned in my mind. The fear that some nurses are already only allowed only one mask per shift is not lost on me. Let’s prevent spread and help our neighbors survive this together.

Actions:

• Find out where to get tested near you. Each county should also be sharing statistics on current testing. Here is Kern’s.
• Disability Voices United (full disclosure, I serve on the board) is working hard to get questions answered and connect people with answers. Here is our COVID-19 website.
• People with disabilities are being left out of MANY of the current fast-tracked legislation – this can be addressed by you sending an email to your representatives today. The Center for Public Representation has a fabulous template and information sheet.
• This event might have you thinking about life planning. The Arc has a Future Planning Tool. Check it out.
• Use the National Down Syndrome Congress COVID-19 website to find answers to common questions.

Self-preservation and Mental Health Actions:

• Call your grandparents. Mine are isolated and lonely right now. I called yesterday. I’ll call again tomorrow.
• Happy Hour Tea Time with friends via Zoom or Google Hangouts or other webtool.
• Worry less about chaos; screen time may increase during this event.
• Connect with those you love. Disinfect.— #BleachMatters and so do you.

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My friend and fellow Disability Voices United Board Member, Tim Jin, has a list, too.

Be like Tim!

Tim’s “Today You Can List”:

1. Social distance from others
2. Wash hands and don’t touch face
3. Get gas in car and only drive when necessary
4. Have approximately 2 weeks of supplies (food, toilet paper and etc) and ration those items. No cooking extravagant meals using all your protein and no wasting supplies/food.
5. Ration money. Cut off all unnecessary costs and avoid large purchases for the moment.
6. Have a “go bag” with important documents, clothing and other essential items if you need to leave the house in a hurry.

It’s been three months now, and we are officially in a new rhythm. I’m not sure it’s a recognizable rhythm to a familiar tune, but it’s definitely a rhythm. The summer was full of visits and fun. Prince Charming drove our clan across the Rockies, through the Great Plains, and up to the Land of 10,000 Lakes for the umpteenth time. Cutie 1 perfected his marshmallow roasting skills. Cutie 2 played the middle child with style and sass. And Cutie 3 ate, pooped, and cooed all summer long.

On the way home, we stopped at Arches National Park. Here’s a pic of our Cuties melting in the heat.

 

We headed back to California in time for the National Down Syndrome Congress Convention in Sacramento. It was our third conference since Cutie 2’s birth back in 2012. The convention is our opportunity to just be a family. We didn’t stick out. We weren’t in the presence of a rock star. We were just us. I most loved seeing so many adults with Down syndrome texting their peeps while walking down the corridors, living life, just being. Nothing “amazing” needed, just a touch of perspective. We aren’t big on inspiration porn at our house; we just enjoy everyday life in our tribe.

After the conference, we headed to the gorgeous California Central Coast for a family camping trip. All of the Cuties did great. We loved it, and we are already planning our next trip. If your family, like ours, includes a person with a disability, check out the Disabled Discount Pass. It costs $3.50 and provides 50% off camping, day use, and boat fees at California State Parks.

 

Overall, summer’s been fantastic. I return to campus next week, and no, I’m not ready, nor am I excited. Grateful, yes, but excited, not so much.

 

He’s a keeper. I’m just going to put that out there. I’m a little concerned about the drive to Minnesota, but with big brother stepping up as he has been, I think we might just make it.

I can’t tell you how different this baby experience is from our last one. His body does most of the things he is asking it to do without hesitation. This is amazing after watching #2 coax her body to comply for the past five years. His head and neck respond to him. His bowel obeys him. Things I had forgotten come naturally to most, also come naturally to him. It is a fascinating journey, and I am so grateful he chose us.

So far, he’s 9 lbs. 9 oz. and eats about 15 hours per day – at least it seems like that. I believe I have a new appendage.  Somehow I slept the whole night last night – I only got up to pump, and Prince Charming must have gotten up to feed him. Milk’s gone; no one is crying. Life is good.

He attended his first conference on Friday. The USC UCEDD Community Education Conference this spring focused on Down syndrome. My colleague and I were invited to present a week before I found out Cutie #3 was on his way, so off we went. I believe I was the only presenter holding a newborn during her presentation. If I find the presentation online, I will share to prove it.

The dogs are a bit neglected, but they have each other. It will all work out just fine.

 

 

To feel human, and to give my brain a break from grading research papers, I must write something else. How about a list?

FIVE THINGS I’LL MISS ABOUT BEING PREGNANT

#5 Wait, five? Let’s move on to four.

#4 Ummmmm. Perhaps three will come to me.

#3 Prince Charming’s aversion to feeling the baby move because “I don’t want to hurt him.” Such a strong man.

#2 Cuties 1 and 2 kissing baby brother and snuggling so they can feel him move around.

#1 The magical feeling of baby swimming around inside me. Yes. This I will miss.

 

#5 Being asked (for the 80^th time) if I am having twins. This has happened with all three pregnancies.

#4 Being asked if I’m SURE I’m not having twins.

#3 Sciatic nerve pain

#2 SWP (sleeping while pregnant)

#1 Stepping on the scale at the doctor’s office. It is ridiculous that they mess with the calibration every time I’m there.

 

I am 2 cm dilated as of yesterday. Keep it coming, Cutie #3! Can’t wait to meet you!

I’m not sure where the past few months have gone, perhaps I’ll find them stuffed between the cushions of our couch.

I’ve learned quite a bit in the past few weeks:

1. I hurt. Between sporadic sciatica pain,  the pain I feel when watching the news, and the pain from scrolling through Facebook, I have cut back on media intake dramatically. This hasn’t really helped the sciatica, but my mental health is better.
2. As far as we know, Cutie #3 is still measuring 2 weeks ahead of schedule. We love our over-achievers.
3. Advocacy still matters to me. I am honored to have been invited by CalABLE friends to testify in Sacramento in support of SB 218 next Wednesday.
4. If I assigned less work, I’d have less grading to complete. This one will likely never be fully grasped.
5. Contractions hurt. Maternal amnesia is the only way the human race has survived.
6. I’m tired.
7. Sitting hurts.
8. Lying down hurts.
9. So does getting back up.
10. This pain is temporary, and it will pass. Get over it, #GoldenMomma.

Cutie #1 gets more interesting every day. I love talking with him, and I love seeing him figure out his world. He is his mother’s son. His ability to figure things out astonishes me. He taught me how to do a few things this week. He has a knack for it.

Cutie #2 is a ham. Last night, she serenaded Prince Charming and me with a rousing rendition of “Let It Go”, complete with her microphone from speech therapy and multiple bows at the end, as we cheer with gusto. When we do a good job on something, she enthusiastically applauds and shouts, “Bravo” for us, too.

 

“And here’s the heart. Everything looks good!” our perinatalogist tells us. The super-duper #GoldenUltrasound most people schedule around 20 weeks or so finally happened. At 29 weeks gestational age. Don’t worry. Cutie #3 doesn’t look a day over 31 weeks. That’s right! We are having a Schultenover! Or perhaps an England. I don’t remember which side of our family has ginormous babies, but as a hefty 11 pounder myself, I am likely completing the karmic cycle by birthing a six month old. No, he’s not 45 lbs, as I predicted, but he is likely pushing 4 lbs this week. And if BabyCenter.com is right, he’ll triple in weight by his due date. Fantastic. The gorgeous newborn sized onesies so generously given to us by our dear Club 21 friends last week will keep their tags on until #CutieBigBoy makes his presence known. Then, we will re-evaluate.

 

So far, we are considering selling naming rights on this one. The potential names list grows, but not in a reasonable way. Cutie #1 continues to insist on names which don’t sound like names to us:

Maui (we aren’t Hawaiian)

Bottom (?? There are no words)

Kai (which we like, but is apparently the bad guy in Kung Fu Panda)

 

Basically, all the names Cutie #1 come from a moment of animated bliss which we simply don’t understand. We are clearly fuddy-duddies.

 

So, here’s a glimpse of #CutieBigBoy. If you have a suggestion for a name, we’ll add it to the list. If your suggestion is “Dorsel Fin”, worry not!! That is already on the #alternativelist.

 

Back to the heart, though. I don’t often make my posts Down syndrome related, but today, I have to make an exception. After Dr. Peri let us know about #CutieBigBoy’s fantastic heart, kidneys and liver, I looked at Cutie #2 and said, “His heart is like yours was on your echo.” Dr Peri stopped frozen, apparently had noticed the extra chromosome in the room, and said, “Why did she have an echo?” I, having an amazing sense of combined humor and horror on my face said slowly, “because she has Down syndrome…” letting my voice trail off. Dr. Peri looked at her, intently, and said, “Just routine, right?” Prince Charming and I exchanged glances, and really wanted to slap each others’ foreheads, but we refrained.

 

“Her heart was fine. Nothing exciting.” I replied.

 

Later, after the scans were complete, Dr. Peri was saying goodbyes, then for some unknown reason, he found it necessary and somehow appropriate to say, “She has a mild case. You must know I’ve seen lots of cases. She is mild.” That is a WTF moment.

 

People on Planet Earth:

There is no “mild” Down syndrome. There are three flavors: non-disjunction, mosaicism, and translocation. Period. As far as we know, and from what her basic karyotype revealed, our cutie has non-disjunction, which is complete. Every cell in her body has three copies of #lucky21. She may deal with her arrangement with grace and pizzazz, but that’s her, not her diagnosis. Please do not try to tell me that mosaicism is somehow a “mild” form. Comments like this do much more damage than good. They divide our community, and I will not participate in such shenanigans.

 

 

You cannot see the impact #lucky21 will have on a baby. Surgery may be necessary; it may not. Holes in a heart may begin to close before birth; they may not. The “Double-Bubble” (medically known as duodenal atresia) may exist; it may not. Your son may win an Emmy for his role on #BornThisWay; he may not. None of these things indicate the love, personal growth, and learning that you may (or may not) experience as a parent.

 

For the record, Cutie #2 has stubbornness and determination in triplicate. I assume these traits only reside on the 21^st chromosome. (Tongue firmly in cheek so I don’t have to bite it to keep from laughing out loud in Dr. Peri’s office.)

 

*For the record, we did not laugh at Dr. Peri. We waited until we got to the car and let loose there.

 

If the website The Visible Embryo is reliable, Cutie #3 is currently 2 lbs, almost 16” long and I’ve gained between 17 and 24 lbs.

That’s ridiculous.. the baby is clearly 35 lbs, and I have gained an additional 15 lbs. There is no other reasonable explanation. Or, perhaps, I am of the heftier northern European stock, and the baby is 35 lbs, but I’ve gained 20 lbs. That could explain it. Either way, this one is bigger than Cutie #2 at 2 years of age. Natural birth, my eye.

Not our baby

We still haven’t had an ultrasound with the perinatologist. That should happen on the 16th. My parents are coming out to visit us at the end of April, and we are looking forward to that. Classes are moving forward. Life is humming. All is well.

But, I hurt. I assume, it’s in part due to the 45 lb baby (it takes a while to finish typing and I think he must have gained 10 lbs since the top of the page).  It’s likely also in part to my #GoldenPregnancy status. I hurt with Cutie #2, but this is worse… or I have a worse attitude about it.

Cutie #3 is an active one. Fingers crossed that all continues to go well.

Cuties 1 and 2 love to zerbert (blow raspberries on) my enormous belly – no photos of that here.

Much love and chronic confusion,

K

 

This week saw some important, if not difficult, events occur. Our Cutie #1 completed his seventh rotation around the huge ball of gas some of us call the Sun, a huge ball of gas became our Nation’s 45th president, and I’m forty and pregnant… so gas all around. Political commentary complete.

Another ball of gas

Cutie #1 has decided he prefers to celebrate his birthday with season passes to The Wizarding World of Harry Potter, instead of the annual pilgrimage to Chuck E. Cheese. I couldn’t be prouder. He had to weigh pros and cons, and without pressure from his muggle parents, he’s taking us all to Universal Studios in Hollywood!

I.
Can’t.
Wait!

My body has been pretty well-behaved since Prince Charming was discharged from the hospital… I have been sleeping better, and my brain seems to be working most of the time. Wait— did I forget to mention my PC was in the hospital? Let me tell you one thing. I was not meant to be a single parent. I really don’t know who is, but it is not my calling. While most of our family would likely survive, I am so incredibly grateful to have my healthy(ish) partner back, and life is back to its chaotic rhythm.

26 weeks.

I am 26 weeks pregnant this week. In two weeks, I will have my 20 week ultrasound… don’t judge; life has been busy. So, at 28 weeks of gestation, we will have a level 2 ultrasound — you know, the super-duper ultrasound so we don’t have any “surprises”– euphemism for genetic conditions. I find this hilarious, since life is one surprise after the next, and I simply assume there will be surprises with Cutie #3, like with his older siblings. Why wouldn’t there be?

I’ve been pleasantly quasi-disconnected for the past two weeks. No regular news, no blog posts. It’s been lovely.  Don’t worry. I still get my fake news in my Facebook feed, but I’ve been surprisingly good at scrolling past junk. Ahhh. Very relaxing.

Now, we are about to return to our mountain home in California.  Hoping for good weather and easy travel, but we get what we get, and we will try not to throw a fit. We drive out this morning on icy roads. Fingers crossed. 

Our visit to Minnesota has been enlightening. We attempted (for the third time since Cutie #2 was born) to participate in a Down syndrome event. All three have been deeply disappointing. I can’t put my finger on why, but I assume Prince Charming and I will have time to discuss it while I knit the Chevron baby blanket for Cutie #3. Maybe I’m not as Minnesotan as I once was. I believe it’s a cultural disconnect, and since I have chosen not to live here, I will assume that the problem is mine and not theirs. But I’d be lying if I didn’t admit to a certain amount of heartbreak about it. I feel truly unwelcome in the Minnesota Down syndrome community. If this had been the only event, I wouldn’t make such a huge statement. And, it certainly isn’t Minnesotan to admit it, but for the first time, I did not feel at home in the place I have proudly considered home for forty years. So, I will triple my efforts to support, reach out, love and be kind to new families I meet. All is not lost. Not now, not ever. 

On a completely different note, our Cuties have been thrilled to be at Grandma and Grandpa’s house. They played with dear friends and cousins. Santa some how found them Christmas morning. The Cuties are hoping he will also find our California home for Día de Los Tres Reyes (Epiphany, for the rest of you). It’s likely Santa did, as he is magic, and magic can do so many things.

The New Year will bring new excitement, new love, new adventures, and new challenges. Some will be bad, and some will be good. Worry not. Life has always been this way, and it always will be.

Let’s make it a year worthy of us all. 

Baby bear, baby bear, what do you see?

Some diapers, a pizza box, a half-filled bag of garbage. That’s what you see.

Let’s face it. We thought you were hibernating, or would not have left you such tasty, but toxic, morsels on the deck overnight. Our apologies little one. You are magnificent, but you should be sleeping your deep winter sleep, not rummaging through used Pull-ups.

Dogs,

You are nearly useless in the defense of property. Not a peep out of you, Golden Doodle or you, geriatric miniature Poodle. Not one

Love,

Golden Momma