Posts Tagged ‘support’

ImageHello all – Mik’s mom here.  I am going to completely show my age and quote the classic 1980s teen flick Sixteen Candles.  It is in the scene towards the end of the movie, (paraphrased) when all the students were going to the dance.  One of the student’s parents forced him to go to the dance – they literally shoved him through the door and closed it.  And he responded by beating on the closed door, shouting to his parents, “BUT I WANT TO HANG OUT WITH YOU GUYS”.  

At Mik’s Hidden Hearts Alliance, through the countless messages we are receiving, we are learning there is a growing trait among hidden (chronically-ill) teens across the country who are just like the guy at the dance in Sixteen Candles.  

What is this common unspoken trait phenomenon sweeping the nation among chronically ill teens?  After spending a long time in and out of hospitals / having difficulty going to school on a regular basis, relating to “normie” (healthy) teens starts to become a challenge – you might, like the guy in Sixteen Candles, actually… GASP… prefer the company of your parents, family and adult friends!  We have heard this so much that it is literally becoming an unspoken phenomenon and many question “Am I Normal?”.  

You hidden teens might find you can identify with “older”  people more (the horror!)  You might find yourself just unable to relate to some people your own age because of their… ahem… teen drama.  Yes, general teen issues for all is important in their world and we should give everyone the grace to understand that we should not play the comparison game with our various inner battles (never want to trivialize that), but as you grow and mature, you realize somethings that you thought were so important prior to your illness (trends, clothes, latest teen gossip, having the latest gadget, where you want to go to Spring Break with your friends, etc) become UNIMPORTANT.  Why?  Because you begin to wish for the most basic, yet one of  the most important, blessings:  the gift of health.  

Trust me, Mik and I completely understand this phenomenon we are hearing about.  And, we both agree identifying with adults and being friends with them is COMPLETELY OKAY and NORMAL!  (Even enjoying the company of your very talkative and slightly overprotective mom is completely normal… even though SHE maybe on the far quirky edge of what is deemed “normal”… not that I know of any of them personally…. right, Mik?)  

ImageHowever, we also agree it is important to find teen friends to socialize with that not only accepts you, but UNDERSTANDS you.  As much as I wished I could be Mik’s everything:  her mom, her caregiver, her champion, her super BFF (she just loves when I speak Teen Slang!) – I realize humbly… I just can not.  

I can not fill the gap that true goodhearted friends her age can.  Through her illness journey, Mik has met some amazing fellow hidden teen friends.  Friends she would not have met if she stayed at home.  Friends who make this journey easier because they are here with her.  And she wants this kind of support system for all her fellow hidden teens across this country too.  

That is why Mik continues to push through and work on her ideas to bring socials and events to Houston area chronically ill teens. And this is why she is working with an amazing team of advisor mentors – all specialists in their given fields – to determine the best way to bring MHHA ideas across the country.   

It is Mik’s hope and dream that her fellow chronically ill teens will get to attend socials ACROSS THE COUNTRY that help them to interact with fellow chronically ill teens that are uplifting, positive and just focus on the FUN.  (more on this soon…  Stay tuned!)


Mik’s Pic in The Katy Magazine news article

You have question or have ideas on how to reach out to fellow hidden teens in your community?  We would love to hear from you!  Message Mik at:  


Houston area – chronically ill teens – RSVP for the Anti-Prom TODAY and share, share, share with other chronically ill teens.  MHHA is a very friendly network of chronically-ill teens.  Click here for more info.



Mik’s Hidden Hearts Alliance mission objectives:

Social Outreach – Outreach program to foster our growing community and to help teens with Dysautonomia and other life-changing hidden chronic illnesses to get out of the home to experience fun classes and “teen experience events” like our annual Anti-Prom!

Hope Kits (Click here to nominate a deserving teen!) – Teen-focused gift kits sent across the country to bring hope and the knowledge they are not hidden.

Dysautonomia Awareness – Events and community service projects to highlight Dysautonomia and its effects on teens and their families and to encourage more research in this much needed area.
Support Network – Hidden teens and their families often feel isolated.  MHHA goal is to help bring these families together for support.
Hospitalized Teen Programs – Because teens are typically in a children’s hospital, MHHA works to provide teen-focused toiletries, activities, books, gifts and video games to help make their stay more enjoyable.  

Make sure to join us for our next monthly social in Houston – fun for all of our chronically-ill hidden teens!:

Join us Thursday, January 16th, 1 – 3:30pm, at Glazed Over Ceramics Studio for a creative, fun activity making fused glass! You’ll create a beautiful piece of glass by laying out your design of glass chips on a glass plate. It is later fused and shaped. The studio also offers ceramics that can be painted, but the glass is really fun and unique. No special glass skills needed!

Glazed Over is waiving the table fee for our MHHA group. Everyone will select and pay for their own projects. (MHHA will offset the cost of each teens’ purchase by $10. ) Items range from $18 – $60, with the average being about $25. Your item will be fused and be ready for pick up about 10 days later.

If you are able to, please bring a plate of appetizers or snacks for everyone enjoy. Glazed over sells some refrigerated drinks or bring your own.
Please RSVP here: as soon as possible, so we can make sure enough tables are set up. This is really fun for everyone!

Glazed Over Ceramics Studio, 14627 Memorial Drive, Houston, TX 77079

Houston area hidden teens and their caregivers: Don’t forget to mark your calendar for the 2nd Monday of the month for our Outreach Meeting where we will discuss how to “Instill Inspiration”. (Aug 12 at 2:00) Click on our calendar link for details:


Posted by Mik’s Hidden Hearts Alliance in partnership with The Lamb Foundation for Dysautonomia Research.  

We help teens and their families who have Dysautonomia and other life changing hidden illnesses.

Dysautonomia Awareness – Support Group – Socials – Hope Kits

How’s your summer going? Hope y’all have been setting some fun goals and able to get out of the house to have fun (despite the heat!)

I have not done a “dys song” in awhile, but wanted to share this one with you. Listen to the lyrics and remember we are NOT knocked down forever!

TobyMac – Get Back Up

Posted by Mik’s Hidden Hearts Alliance.

For more Mik’s Hidden Hearts Alliance updates, check our website or our Facebook page here.

We help teens and their families who have Dysautonomia and other life changing hidden illnesses.

Dysautonomia Awareness – Support Group – Socials – Hope Kits

Reminder – rsvp your tickets for Mik’s Hidden Hearts Alliance (for teens with Dysautonomia and other hidden life changing chronic illness) first annual “Anti – Prom” to be held on Friday May 3 at the beautiful Courtyard on St. James in Houston, Tx.  

Join us for a specially planned prom by chronically ill teens for chronically ill teens!  Dinner, casino games, tons of prizes and more!

RSVP your tickets at:



Check us out on Facebook – Click Here!

Hidden Teens and their caregivers: Join our private Facebook forum support group! This will help with outreach, bring awareness and hope! Mikaela will be focused on the teen led topics and I will be focusing on the caregivers led topics. However, feel free to post, give ideas, etc! Looking forward to hearing from all of you!

Click Here for the Support Forum:

Also, know of a Hidden Teen that could use a surprise Hope Kit?  See details below or go to our website