I have homeschooled at least one child (if not several) going on 15 years and have loved nearly every minute of it. For our family, it has been an extension of a lifestyle and relationships that we have built our family values on.
When my friend invited me to join her in Las Vegas, deep in the middle of NJ’s strictest Covid-lockdown, I never thought we would REALLY get there. But eventually, we were boarding a plane.
I am a nervous traveler. I dislike flying and every part of going on a trip without my family, including self-imposed guilt, was hard. I refer to my house as ‘The Vortex’ because of the strong, centripetal force that keeps me firmly circling a tight track of repetitive, domestic tasks and complicated family living.
I had to convince my brain early in the trip that I was not, in fact, responsible for a very large group of people. Eating. travelling, and just about everything, became instantly simple and easy. ‘Simple’ and ‘Easy’ are two words that never describe any part of my family.
You want go? Go. You don’t feel like eating? No problem. No tables in a restaurant? Sit at the bar. Easy Peasy. Want to drink coffee and play $20 of penny slots at 8 a.m.? Go ahead. It is Vegas after all.
I was walking in very foreign land in every sense of the word. I am not well-travelled and this was the ‘westest’ I have been in the country, so far. I found the desert extremely appealing and strange. There wasn’t a day under 100 during my 6 days there and I loved the feeling of baking in the sunshine. I am unaccustomed to relaxing poolside, attending rooftop parties, exciting and challenging solo hikes in the Mojave Desert and eating in Michelin-starred restaurants. How about the zippy little Rav-4 with Sirius radio I rented? Nothing like my lumbering Sienna with zip ties on the front bumper.
Quite frankly, the vacation lifestyle could not have been farther from my normal daily experiences. The lack of cooking and cleaning itself freed up countless hours and mental space. Oh, the mental space! My brain morphed from a hamster-on-a-wheel-that-keeps-turning-way-to-fast-and-tipping-ass-over-head to something like a leisurely peacock meandering through the botanical gardens. I’ve seen one. It looked very relaxed.
As soon as Dennis dropped me off at the airport I want from a mom with a ridiculous amount of responsibilities and enough chaos for a small country to a Vegas tourist with time & money to burn. As much as it was crazy-fun it was shockingly eye opening.
Like the frog in the beaker. I do not always know just how hot the water is and how tight my margins are. Having more space and time and less (no) responsibilities provided a birds-eye view of things that are missing from my regular life.
I did exciting things that made my knees weak and my palms sweaty and my heart race. Hard to remember that last time I felt that amount of adrenaline. I laid on my hotel bed in the middle of the day. Wandered streets because I wanted to see what was on them. Played pinball alone.
I felt like me, but the alternate universe version of me. And it all made me think. I’ve spent the days after my trip pondering whether I could introduce the two versions of myself to one another.
I think the Vegas version of me may have stayed in Vegas.
Too bad. Regular me would probably really like her.
In case you are not in ‘the know’, World Down Syndrome Day is on 3/21 because Down Syndrome is caused by 3 copies of the 21st chromosome. Cute, right? Just like our guys.
Today’s date has 2 ’21’s in the date – I think that calls for special celebratory methods. Here are 21 fun facts about my Happy Man to celebrate.
When I told Dennis that I was <unexpectedly> pregnant, he thought about the dates and proclaimed the Ethan would be born the day the Devils would win their first Stanley Cup. That would have made him born way before his due date. He was born within hours of the win.
For the first 24 hours of Ethan’s life, no one suspected there was cause for any concern. It took a week to find out he had Down syndrome.
People used to think I was Ethan’s babysitter – they were unaware that young women had babies with DS.
Ethan never colored a day in his life until he was prescribed stimulant medications.
Ethan’s middle name is Hugh, after my father who died when I was a child. When people are in trouble in the house he refers to them as their own first name and Hugh. Mommy Hugh! Gavin Hugh!
On Ethan’s first day of public school they lost him. I told them they would. He was placed somewhere with a much smaller teacher/student ratio after that.
Ethan had a diagnosis of “Pediatric Anorexia’ at one point because his eating issues were so severe. Once, on Christmas Day, Dennis had to drive up and down the Garden State Parkway to find an open McDonald’s to find French fries.
I did NOT have high hopes for my birthday this year. It is wise to not have high hopes about anything right now.
I am one of those moms who REALLY does not need gifts (but I did get a few) – I’d prefer my kids indulge me in a few birthday adventures. I managed to corral all of my kids and my mom for just that.
A bunch of us ended up spending waaaaayyyy too much time watching 80s music videos on youtube for 1/2 of the morning – which was just fine by me. Ethan made me a birthday breakfast, unprompted by anyone else. He was super-pleased with himself. I do not consume ANY of the foods he made for me, but I thanked him. I made myself another breakfast later.
I greeted the beach and the waves, ate tacos and played arcade games. For a little while, all was almost right with the world.
Several years ago, I sought acupuncture treatment for a series of headaches I had been having for weeks. That first experience ended in a full-blown panic attack complete with sweat pouring off my body and severe nausea. I learned two things – acupuncture was capable of eliciting VERY acute responses and that I had chosen the wrong practitioner for me.
Fast forward to my horrible bout with shingles and I was in a very desperate situation. I was at the end of my rope with conventional, western medicine. My pain was extraordinary and I could not sleep or eat. My regular doctor, an immunologist and a pain management doctor tried a few modalities with no or detrimental impact. It was scary and devastating. When a dear friend suggested I see her acupuncture doctor, I was more than leery. ‘She is wise and gentle and I think she can help you.’ I had to try something.
A friend of mine recently posted this on her Facebook page.
I know this to be the truth. I have lived it many times over. I am working really hard to be proactive and build in the things into my days that cultivate health and wellness, so that my body does not have to make that choice for me.
For the first 34 years of my life, I went to church on Sundays (and other days of the week too). but I stopped doing that. That’s a different story for different day. Since then, I have had many ideations of what Sundays have been comprised of. My newest philosophy is that Sundays should fill my bucket. You know, that one with the hole in it?!
In the days, weeks and months following Ethan’s birth, my first thought each time I opened my eyes was “I have a baby with Down syndrome.” It was profound and all-consuming. His diagnosis loomed large in my mind. He was a tiny, fragile, bird-like porcelain doll. He was absolutely adorable.
But his diagnosis was a large, wet wool blanket that covered everything we did and each experience we had.
I’m usually a BIG fan of the fact that we live in NJ. But right now, we are still in COVID lockdown, and I am NOT happy about that. We promised at the beginning of this shitshow that our family would make our own fun. We reverted to simple things that we’ve always depended on for family fun – outdoor outings, movie nights (outdoors as well), walking, hiking, the beach, archery and even fishing.
I need and want to log a certain amount of miles of walking per week and I encourage all of my cast members to get out in nature as well. I will drag as many of them out as I can as I pursue the entries in this book, which I have owned for about 25 years.
There are some notes in the margins about completed hikes and which kids I had in tow when I did them. I’d love to have this book really marked up as a souvenir of good times!
A little over a year ago, I was very much at the end of my rope with my health.
4 years ago, I had a life-altering reaction to Levaquin. The drug had a ‘black-box’ warning and I was prescribed it for a simple sinus infection. It was a truly unfortunate event. It had profound impact on my joints and tendons, nervous system, mental health as well as a bunch of other tragic effects.
2 years ago, I developed a devastating case of shingles. It cropped up IN my sciatic nerve which confused most doctors, delayed treatment, caused extraordinary pain and wreaked complete havoc. At one point I did not eat or sleep for two weeks and struggled with severe pain and smaller outbreaks for about a year.
Last year, I was bitten by two ticks on the same day. I developed STARI and opted for traditional antibiotics alongside herbal treatment from the acupuncture doctor who helped me through my bout with Shingles. 30 days of antibiotics left my digestive track in bad condition and my immune system in a pit.
I found myself in a body that was definitely in significant trouble. I felt generally unwell and insomnia was my constant companion. I was overweight, my blood pressure was way up and I was severely anemic. I had a myriad of stomach problems, was experiencing histamine food reactions to foods that hadn’t bothered me in the past. I was achy and tired.
I knew “eating better” would do me a world of good. But ‘eating better’ has many definitions and depending on who you ask, can look radically different. I mindfully investigated what would be right for me & my body – I do not think it looks the same for everyone.
Several friends who have had amazing success with their health pointed me in the direction of the Autoimmune Wellness community. I began with the Autoimmune Protocol because of my deep desire to put my immune system in the right and tackle some difficult healing issues. I do not have a diagnosed autoimmune disorder, but I did score high on the quiz at the beginning of this book. I was very interested in nutrient-dense foods that would help me achieve vibrant health. I read the blog and listened to the podcast and started immediately. I read Sarah Ballantyne’s webpage, and subsequently her books and took all of the tenants of the Paleo Lifestyle VERY seriously.
You will never hear me refer to my experiences so far as ‘a diet’. Although a change in diet was involved, the connotation of eating less for weight loss does not resonate with me. I did, in fact, experience a huge reduction in body fat, but there were metrics that were way more important to me than the numbers on the scale. There is more to Paleo than diet – stress management, improved sleep quality/quantity, meditation, exercise and experiences with Nature and a myriad of considerations that can promote excellent health are all part of the ‘lifestyle’.
At a little over a year into this endeavor, I still consider myself a newbie. Things like meditation, Qigong, acupuncture, earthing, sun & light therapies, theories of Traditional Chinese Medicine, as well as employing a heathy & healing diet for me have made an immense difference. I’ve been an avid walker for as long as I can remember – sometimes I just need a kick in the proverbial ass to remember.
I never thought I could be where I am now and would love to share what all these changes have done for me, how I incorporate them into a crazy-busy life and more important, how I reboot, reset and recommit whenever I get the tiniest bit of the path.
Often, during the course of a day, I find myself shaking my head and repeating a common phrase.
I am sure that many of the things that go on in our house do not happen in other families. Maybe some things do. Probably the isolated incident or two, but certainly not with the intensity or frequency that I feel like they happen here. It might have to do with the sheer number of family members and certainly has to do with the unique set of perspectives, challenges, and personalities that collide and clash on a daily basis to form what I often refer to as The Vortex.
Easy to get sucked in. Hard to break out.
I guess by today’s standards we are a largish family. We are newly multi-generational. There are always ‘extras’. We have lots of things that make us different. We have a super open door policy and at any given time we can have a dozen or more people in the house. We are loud. So loud. And as much as I like to clean, organize and find a system for everything – chaos still abounds.
If you’ve ever wanted to be a fly on the wall of someone else’s experience. Find a perch. I’ll try to do it justice.