Hello everyone!

I hope you’ve all been doing well. Michael’s hit the quarantine wall lately. He’s absolutely over his walks, refuses to leave the couch, and has been over it. 

But one thing he definitely isn’t over is coffee!

We especially love the coffee from Reveille, a veteran, disability and black owned coffee business.

The owner, Calvin, was inspired to create Reveille after travelling the world. During his time in Columbia, he met a coffee farmer who had worked an entire day on the farm, yet didn’t earn enough money to buy himself dinner. As he spoke to more people, he realized that this was a commonality many farmers experienced.

This was surprising, as coffee imported into the US is so expensive. Expensive, because there are many middlemen between the farmer and the consumer that elevate the price, and lower the pay for the farmer. 

Once the coffee leaves the farmer, it goes to the CO-OP, who then sell it to more substantial companies- and then it goes through the wholesalers, the distributors, the coffee shops, and the grocery stores. 

Calvin’s team aims to shorten this journey, as they partner with coffee farmers and roasters to sell their coffee directly to the US market. This allows the farmers to profit from the coffee pre-selling services, clarity on what they’ve sold, and bring them better gains from their sales. 

He’s got coffee all over the world, from Africa, Asia and South America. We love the taste of it, and it’s even better knowing that it’s going towards a greater cause! We love the Peruvian blend- you’ll have to let us know which one’s your favorite!

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Now more than ever, I believe it’s important to support our black friends and their businesses. When we support black businesses, we support black communities. The opportunities to White vs. Black Americans in their economic success are drastically different. 

And when we support small businesses, we allow our communities to flourish. When consumer spending accounts for 70% of the US economy, envision the impact that could be made from supporting more Black-owned businesses.

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You can learn more about Calvin and his mission here!

Hundreds of surfers in our community came together in PB for the Paddle for Peace event. A morning full of love, unity, and strength.

PC: @unclemiiike on IG

It’s taken me a while to collect my thoughts with everything going on in the United States today.

And then I realized, that it’s better to take a stand and speak up, rather than to passively sit.

Because passively sitting is exactly what I’ve been doing over the years. That thanks to my privilege, I could be ignorant and choose to be blind to the hate that’s actively affecting many POC in our society today.

It wasn’t until a couple of weeks ago that I fully grasped what it meant to be priveleged.

That made me absolutely sick. I was completely overwhelmed with guilt, grief, and heartache. Guilt for being so unaware and choosing to actively ignore the systemic racism in our country. Grief for the deaths of so many whose lives were taken too early. Heartache knowing that there’s still people out there who have the capacity to hold so much hate in their hearts towards others… because of the color of their skin?

It’s time to do better.

I’ve already taken the stand to advocate for those without a voice. For our loved ones who have special needs. And yet, I never considered how race ties into the mix.

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Did you know that half of people killed by police have a disability? In the article that I’ve linked, the authors

“argue that public discussion of police brutality should consider the intersection of disability, class and race in scrutinizing police use of force.”

Yes, there’s an issue with police brutality with blacks. And there’s also an intersection of race and disability that needs to be explored.

While I won’t get into the debate of police in this post, there needs to be change. Because if you’re a supporter of those who have a disability, I believe you get to take a stand and support black lives. Black lives matter. Black disabled lives matter. All black lives matter.

There’s still lots that I get to learn. And I’m committed to being part of the movement for change. And I encourage you do too.

Whether it’s participating at protests, peaceful protests, signing petitions, donating to organizations, buying from black business owners, there’s many ways you can take part in the movement.

And I acknowledge I may not get it right every time. And I’m open to feedback. I’m open to learning and growing and know how I get to do better.

I’m committed to leading with love, empowerment, and an open heart. To educate myself and share what I’ve learned, especially in the black disabled space.When we unite and take stand as a community, that’s how we create waves of change.

This change has been waiting for centuries. And it doesn’t get to wait anymore.

Hello everyone!

We turned 24 this past week, I couldn’t be more grateful to celebrate it with anyone else. We may have celebrated it differently this year than we did in years past, and that didn’t stop us from making the best of our (socially distanced) time together.

I get many questions about what it’s like having a sibling who has Down Syndrome-- especially when they’re your twin. Are we telepathic? In our own sense, I think yes, especially since Michael communicates without words.

Yes, everyday may not be easy. And I wouldn’t change our situation for the world. 

I’m grateful for every moment I’ve had with Michael, including the ups and downs. Each of those moments brought me to where I am now, and have taught me things that no one else has.

Here are 24 things I love about Michael:

1. The way he unconditionally loves others

2. He’s my best friend since before birth

3. He may not speak to me in words, but he communicates through love better than anyone else I know

4. His kindness towards others, no matter who they are

5. His sweet smiles-- especially after forehead kisses!

6. The way he twists his hands or creates a lotus flower shape when he’s exploding with joy 

7. The way he rocks his body while he’s listening to music

8. How much he loves the waves in the ocean

9. His love for swimming (I used to be an NCAA swimmer and we love swimming together!) 

10. The big hugs that he gives- always full of love!

11. Michael checking himself out in the mirror every night before bed with my dad’s sunglasses- he’s handsome and he knows it!

12. He can down wine or beer like a true champ!

    My Favorite things I’ve learned from Michael:

13. Unconditionally loving yourself

14. The power of forgiveness

15. Living in the present

16. Cherishing the Moments we have with the ones we love

17. We all love hugs (and seriously missing them right now!)

18. Kindness goes a long way

19. Smiles are free

20. Hugs are the best

21. How to not give a sh*t about what others think

22. No more worrying about looking good enough

23. Your perspective goes a long way

24. Humans love hugs (can ya tell I can’t wait to hug Michael once this is over??)

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Yes, things look a little different right now, and yet we get to choose. Today I choose to continue sharing the lessons I’ve learned in unconditional love through Michael 💛

A post shared by Julia & Michael Toronczak (@beyondthewavesblog) on Mar 21, 2020 at 10:48pm PDT

Hello everyone, happy World Down Syndrome Day!

Sending so much love and light to all of my Down Syndrome families. Whether it’s your sibling, son/daughter, cousin, or even your best friend, I want to extend so much love and gratitude for what you do for our community. Together, we get to shout their worth, disband the old rejecting images of Down Syndrome, and replace them with unconditional love, grace, and kindness. 

Yes, World Down Syndrome Awareness Day looks a little different this year. Some of you may be isolated at home, or maybe you’re like me and staying away from your loved one to ensure their health and safety.

Some of your loved ones with Down Syndrome may have compromised immune systems, or have heart disease like Michael, making it even more important to prioritize their health and quarantine. 

All of our news feeds are filled with coronavirus talk, and it’s almost impossible to avoid any exposure to it, let alone get sucked into the fearful energy associated with it. 

And yet during these turbulent times, we get to choose. 

We get to choose to live in that state of fear, or we get to choose living and sharing the love and light. 

Yes, I’m devastated that I won’t be with Michael or my Mama right now. And I have no idea when it’ll be safe to visit them again. And yet, I do know that we have the power to choose.

And today I choose to continue sharing the lessons I’ve learned from growing up with Michael. This is something I choose everyday, and find it even more important now.  

Perspective

I’m a firm believer that your thoughts dictate and shape the world around you. A simple shift in your perspective can easily turn your entire mood around. As best said by one of my favorite self-development speakers, Dr. Wayne W. Dyer: “change the way you look at things and the things you look at change.”

Right now, I choose to view through a lens of gratitude. 

I’m grateful that my family is safe, healthy, and that we have technology to keep us connected even though we can’t physically be with one another. I’m grateful to work for incredible companies where I get to work from home for one, and with another who is supporting our community by sharing yoga for all during this time. 

I’m grateful that our world is taking action to protect our health. And even if it looks different now, I’m grateful that Mother Nature is finally getting the break she needs. I’ll be honest, I’m excited to see how much our environment will thrive during this time.

Not Giving a F*ck

Yes, I said it. This past year I’ve learned to quit worrying about what other people think of me. I discovered that I can be incredibly people-pleasing, basically living an inauthentic life by constantly trying to look good enough, and living to make others happy, rather than making myself happy. 

I’ve been stuck on what sort of content to post on our Instagram, worrying about how others will judge my content, rather than the value it may provide to others in our community. I’ve wasted endless time worrying about pleasing others, rather than living authentically and true to myself.

And it’s a little ironic- whenever I’m with Michael, I don’t care about what others think. If others get frustrated with us getting in the way at the grocery store, or if Michael is upset in public, I never care about what others think or what they have to say. Because they don’t live in our shoes, and don’t understand what it’s like to grow up with someone so loving, so genuine, and so kind. And why should I care in my own life about what others think each and every moment?

3. Unconditional Love

Throughout my life, I always wondered why it’s so important to keep the Down Syndrome community. With all of the negative stigma surrounding the population, it’s important to advocate on behalf of these genuine individuals. And many of these individuals blindly express love in the purest form.

My brother doesn’t care what you look like, what clothes you wear, what your race or ethnicity is, what gender you are, what your sexual orientation is, or what religion you support. He simply doesn’t care.

What he does care about, is how he’s treated. If he’s approached in a loving manner, he will reciprocate that back. Not once have I ever seen him discriminate another person. He, and other persons with Down Syndrome, demonstrate love and affection without bias.

I continue to be inspired by these individuals with the beneficial values in life they have to offer. While not everyday has been easy with Michael, I’m beyond grateful for his presence in my life.

To all of my Down Syndrome Mamas out there, you are incredible. 

I commend you for all of the ways that you support your loved one. For how you choose to love them, have patience for them, and provide them with the world.

Your efforts are seen, you are heard, you are acknowledged. 

I’ve seen my mom go through it all while raising Michael. From wondering how he was going to be accepted at school, to taking care of him every time he was ill, to constantly putting his needs before her own.

I’m beyond grateful for my Mama’s unconditional love. The moment we were born, she knew her twins were perfect. She knew at that moment she was going to take care of and love Michael and I forever.

While growing up, I never questioned angrily why Michael was different. I simply understood. My Mama always reassured me that I have a loving, kind, and sweet brother who may just need some extra support.

So many DS Mamas I meet are concerned with how their children will be affected by their sibling with an extra chromosome. Wondering if the siblings will feel like they’ve been placed with a burden, if they will even get along, if they will grow up loving or despising their #homiewithanextrachromie.

I may not be able to speak for everyone, but I will say I’m beyond grateful for having Michael in my life. 

I’m grateful for how he’s taught me unconditional love, patience, forgiveness, responsibility, and seeing others for who they are. I’m grateful that I’ve been given the chance to grow up early and learn how to support and take care of another human. 

Has it been an easy road? Hell no. Would I like it any other way? Absolutely not.

But when you look beyond those waves, you will find the beauty behind Down Syndrome. Growing up with Michael has been an adventure, and one that I’m proud of exploring. The life lessons he’s taught me along the way are ones you can’t find anywhere else. And I am committed to providing those with a voice who may not have one. 

Again, thank you Mamas for all that you do for your loved one. You are making a difference in the world. 

Special thank you to Dear Mom Conference for asking us this question. They’re an incredible nonprofit dedicated to sharing the loving stories of raising a loved one with Down syndrome to other Down syndrome Mamas.

Hello everyone, Happy Valentine’s Day!

It’s been so long since our last blog post, and I hope everyone’s 2019 is going off to a great start! This new year has brought lots of new changes with it. I moved out into a new apartment in January, and Michael was once again NOT happy with me being away from home. I think he’s somewhat forgiven me by now, but boy can he hold a grudge!

These last few weeks have also been filled with heartbreak, some health scare/emergencies (everything’s okay now!), but most importantly, lots of love. The end of January for me personally was one of the hardest ones yet. Even though Michael wasn’t fully aware of what was going on, he KNEW something wasn’t okay. He easily picks up on vibes and energy, and could sense that I wasn’t alright. My heart broke even more upon seeing his mournful body language.

But even during that time, he would still sneak in little smiles for me, and they were filled with so much love. I always express how Michael communicates incredibly through love, rather than through words. When he feels that something isn’t right, he knows that something’s out of alignment with his highest self: living with love.

In this post, I hope to provide some guidance for how to incorporate more love into your life, as taught by Michael.

Love is Blind

Something that I've fallen in love with is the genuine kindness radiating from these individuals who have Down Syndrome. Although Michael may not be able to speak, he's completely fluent in a more important language-- the language of love.

My brother doesn’t care what you look like, what clothes you wear, what your race or ethnicity is, what gender you are, what your sexual orientation is, or what religion you practice. He simply doesn’t care.

What he does care about, is how he’s treated. If he’s approached in a loving manner, he will reciprocate that back. Not once have I ever seen him discriminate another person. And that's the kind of attitude this world needs. I am constantly inspired by the Down Syndrome community in their genuineness towards other people.

Love Always Trumps Hate

How many times have you been in conflict with someone, and held resentment against them? Did you justify it with, “they treated me badly, therefore I’m allowed to be resentful, angry, and hateful towards them,” and maybe even try to get revenge?

While it’s important to experience every feeling that comes our way rather than repress them, it’s important to do so in a loving manner. No matter how poorly someone treats you, what good does holding onto that hate do for you? All it does is manifest in your own self, and lower your own vibe.

Something I admire about Michael is his ability to forgive, and still give away love.

I’m blown away by how he’s forgiven those who may have not treated him well in the past. While he may hold resentment for a little while (y’all know he does with me whenever I leave him), he ultimately forgives and sends them love.

In the long run, practicing forgiveness towards others, and especially ourselves, is a step forwards towards leading in love, and releasing the baggage of hate that brings us down, no matter what the situation.

Lead Through Love

If there’s anything this world needs a little more of, it’s love. The power of love unites us together, and is a powerful source of healing and growth.

In order to give others love, we need to love ourselves first. I know, how many times have you heard that line already??

But it is so important. There’s so many ways to practice self love, and it looks different on all of us. For myself, it’s practicing yoga, reading, spending time with Michael, and especially spending time with him on the beach! It’s so important to carve out time to take care of yourself- otherwise, why would you show up if you have nothing but love to give?

I continue to be inspired by these individuals with the beneficial values in life they have to offer. Experiencing the world while living with someone like Michael reminds you to fully appreciate what you've been given in life, and to look at people with a more open perspective— all while being guided by love.

I was NOT kidding when I said Michael wasn’t happy when I moved out

But beach days always make it better :)

As a recent graduate from UC San Diego in General Biology, I have taken an interest in scientific research while working in Rob Knight’s lab for microbiome research. With the various health complications that Michael has experienced while we were growing up, I have fallen in love with medicine, and have future prospects of delving into integrative medicine in the upcoming years.

Through all of these years with Michael in my life, I always asked myself,

“Why  is the Down Syndrome community important? Why do we need to keep individuals who have Down Syndrome in our society?”

After growing up with Michael, it’s the genuine kindness and love that radiates from these individuals that’s what our society needs today. As many other individuals who have DS, Michael expresses love to others in an inclusive manner, and doesn’t care about someone’s appearance, their sexual orientation, their race, or gender. Our world today needs more loving, and individuals who have DS are the prime leaders in this.

But, these individuals are even more important than many realize. They may hold some answers in treating cancer, stroke, and other conditions. And this not only applies to helping the general population.

Rather than “curing” Down Syndrome, I seek to find medical treatments to alleviate symptoms that are co-morbid with Down Syndrome, while providing a means of improved public health recommendations for these individuals. All in order to improve their quality of life.

Just in the 1980’s, the average life expectancy for an individual who has Down Syndrome was around 25 years. Advances in research have helped alleviate symptoms of other diseases that are co-morbid with Down Syndrome, including congenital heart disease, hyperthyroidism, and gastrointestinal problems. Nowadays, these individuals have a life expectancy around the age of 60 and can live more fulfilling lives.

Did you know that individuals who have Down Syndrome are protected from coronary artery disease, hypertension, and most solid tumors, including breast, colon, and skin cancers?

Interestingly enough, scientists have discovered that individuals who have leukemia but do not have Down Syndrome have  a part of the 21st chromosome amplified. This section of the 21st chromosome may carry a “leukemia oncogene,” which is essential for scientists to study. Not only could this alleviate the amount of cases of leukemia seen in Down Syndrome, but this information could also be essential in treating Leukemia among the general public

Joaquin Espinosa, who runs the Espinosa research lab at the University of Colorado Denver, specializes in Down Syndrome and cancer research. His team is currently finding ways to alleviate co-morbidities found with Down Syndrome. He also passionately writes about the importance of including persons who have Down Syndrome into scientific research, as funding for Down Syndrome research is considerably lower than for other conditions.

I am also ecstatic to share that we have created a Down Syndrome cohort in the American Gut Project in our lab! I work in Rob Knight’s lab specializing in microbiome research, and the microbiome of individuals who have Down Syndrome is not well understood. Many of the comorbidities seen in Down Syndrome can be treated, and alleviate some of the symptoms that individuals who have DS may experience.

You can donate to our project here. Any contribution would be greatly appreciated and helps make a difference :)

Hello everyone!

Hope everyone's been doing great! For today's blog post, I wanted to talk about Michael's progress with his communication skills.

As some of you may know, Michael is non-verbal and can't communicate with words like we do. He has an incredible sense of understanding, and even though he doesn’t form words, he's vocal in the sense of humming or grunting. Regardless, he’s most fluent in the most important language- the language of love.

Since Michael communicates with us without words, it’s essential that he communicates with us through reading our expressions and with a sense of feeling. He is incredibly sensitive (as are my mom and I). For anyone who knows an individual who has Down Syndrome, they’ll know that these individuals have an incredible sense of stubbornness- Michael included.

Ask or tell him to do something in the wrong tone-- and forget it. He will sit, pout, and do absolutely nothing. If you’re in a rush, let’s say for school, or for a doctor’s appointment, then too bad. If you even dare rush Michael when he wants to move slowly, he’ll move even slower.

This is exactly why we talk to him in a soft manner. He’s incredibly sensitive. He picks up emotions and energies-- how else would be communicate with us without words? We are in no way babying him, as he is capable of doing so many things on his own. But once more, we need to approach him in an appropriate manner that fits his needs.

If he’s sick or not feeling well, we can tell since he’ll seem a little off. He won’t smile, he’ll move really slowly, and in general look upset. If he wants something from us, he’ll usually come up to us on his own, but this doesn’t happen too much. Michael LOVES keeping to his routine, and getting out of routine is incredibly upsetting for him.

As for alternative methods of communicating with us, Michael did have an iPad during high school, with various communication apps. From what I remember Michael was not a fan— if I’m being honest, it really felt like he would just touch anything on the screen so that the iPad would be out of his face.

When I was living outside of home during college, Michael initially disliked talking on the phone, or skyping with me. However, over the past few years he’s really gotten the hang of it.

Video chatting has worked so well with us over the past few years. He loves “chatting” with my aunt from Poland that he’s never met. Especially since she loves talking, Michael is so entranced and enamored by her.

While I was travelling in Europe this past summer, this was an incredible method for us to keep in touch. Although he initially wouldn’t look at me for the first 10 minutes of our calls, when he’d eventually get over being butt hurt he’d be so ecstatic to have a way to communicate. It’s enthralling to hear his giggles and spot his smiles while chatting from so far away.

If you have any questions regarding Michael's communication, feel free to comment below or send in a contact form :)

Videochatting with Michael when I first landed in Europe… did not go so well.

Videochatting with Michael in Europe a few days later after ~10 minutes… finally got a smile!

For all the years I have been running this blog, I just stumbled upon the fact that I never explained the why behind the name and our logo. For those who are just joining our story, or have always been following along, here’s our why.

Michael loves the ocean waves. It’s always kept him grounded, especially while I was attending university at UC San Diego. Our transition to living apart 4 years ago was devastating for Michael. Each weekend when he would come and visit with my mom, he was so upset he wouldn’t look at me the first 15 minutes we were together. Once it was time for him to go home, he would always have tears in his eyes. It always broke my heart.

It broke my heart, since I had no way of letting him know what was going on. The reason I chose to stay in school in San Diego, was so I could stay close to Michael. He didn’t understand why I wasn’t at home anymore. I didn’t have a way of explaining that I was away studying biology in school, and that it was to prepare for even bigger dreams in the future.

But one thing strengthened our bond and kept Michael calm and grounded during our visits-- the ocean waves.

The repetitive motion, their white noise, and the beauty behind them consumed his attention, and made him forget about our situation. The beach became a perfect place to visit, as it was so close to our campus.

Yet for those who have swum in the ocean-- you know that waves can be rough. Being caught in a rip current with tall waves can be terrifying, especially if you can’t see the next wave coming.

But, if you look at the waves from afar, it’s easy to fall in love with the waves and become entranced with their beauty. And the same goes for growing up with someone who has Down Syndrome.

Everyday won’t be easy. Sometimes tough situations or hospitalizations come in waves, with barely any room to simply breathe or relax to take care of yourself. But by looking beyond the waves, I’m blown away by how much Michael has enriched my life. I continue to be blown away by his genuine kindness.

I have learned the importance of keeping the Down Syndrome community, and to raise awareness and provide a voice for those who need it.

As for our logo, I’ve included three waves, to represent the three 21st chromosomes present in Down Syndrome.