Shhhh – The Chronically Ill Teens Unspoken Phenomenon Sweeping the Nation

Hello 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?)  

However, 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:  info@mikshiddenhearts.org  

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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.  

Dysautonomia Teens: Can’t Miss Socials & Events added to our calendar! Join us!

Check out our upcoming events!

 From Boo Bash to Outreach Meetings to our Christmas Potluck Party – we are a welcoming group to all teens with Dysautonomia and other hidden illnesses and their caregivers.  

Do not know anyone yet?  You will definitely leave with new friends!

 

And don’t forget, Boo Bash is right around the corner!  Buy your tickets at www.mikshiddenhearts.org

Hope to see you soon!

For details on our events, click here for our Events Calendar:  https://mikshiddenheartsalliance.wordpress.com/mhha-events-calendar/

 

It’s Only Temporary…. grrrrrr

Bringing about Dysautonomia Awareness is one of our primary goals at Mik’s Hidden Hearts Alliance.  Please review some of the main symptoms below and share with your doctor!  Many doctors are just now becoming aware of this frustrating condition and we need to keep this momentum forward.

And remember, no two cases of Dysautonomia is exact.  Not everyone faints or passes out (common misconception).  We – those who suffer from the impacts of Dysautonomia day in and day out – can NO longer accept the old advice “well, at least it is only temporary and you (a teen affected by it) will outgrow it.”  This advice brings out my momma grizzly bear.  Try living every day feeling like you ran a marathon on a daily basis not knowing if you will unexpectedly collapse at any given moment.  It breaks my heart to see my daughter have days on end like this and I know I for one would not like the unexpected falling, collapsing then, in Mik’s case, legs not working for hours on a regular basis.  

And, contrary to some of the advice we hear going around the country:  dysautonomia teens WANT to participate in life.  Their mind WANTS to participate, but their body is not cooperating.  So, in many cases, it is not mind over matter.  Once the teen and their caregiver(s) accept this, it is easier to accept the limitations and work within them.  This is one reason Mik’s Hidden Hearts Alliance offers socials and classes for our teens.  (See our calendar here.)  We organize events, classes (and now prom!) to work within the limitations and endurance of our hidden teens.  Interested in starting events in your area?  Contact us at info@mikshiddenhearts.org for ideas!

Yes, we believe in hope of the better tomorrow.  We are huge believers in regular physical therapy, counseling, massage therapy, relaxation techniques and socialization!  However, this advice that this is “only temporary” trivializes the physical and emotional pain a teen has to live with for possibly years before they get better.

We love hearing more and more stories of the teens who had a severe case and is managing to go to college now with modifications.  And we pray for you who still struggle and just getting out of bed is an accomplishment.  Whichever group you fall into, know we are here for you!

Want to nominate a teen with dysautonomia or other debilitating chronic illness for a Hope Kit filled with teen focused gifts and necessities?  Nominate them here!  

Posted by http://www.mikshiddenhearts.org.  Serving teens and their families who suffer from Dysautonomia and other life changing debilitating chronic illness.

April Teen Socials! RSVP Today!! Cake Decorating & More!

You do not know how excited  I am that we found you both and MHHA.   I can see a twinkle in my daughter’s eyes again thanks to MHHA socials.  Thank you!

We are receiving messages like this every week and we want to include you on the fun!  Socialize with teens who understand YOU! Don’t let a homebound life make you permanently home bound!

Join us on one of our fun socials this month!  MHHA is committed to providing fun teen socials where ALL our hidden teens are made to feel welcome!  

There is no charge for our socials or classes unless specifically stated.  Any teen with Dysautonomia or another life changing debilitating illness is welcome to attend.  RSVPs are required so we can plan for you!

Please note there maybe time changes from previous posts!

16 Tues – 6:00pm   Cake Decorating class hosted by Creating Memories Cakes & Catering (To be held at Smith Home 3226 Lindenfield Katy, Tx 77449)

RSVP here for Cake Decorating:  www.SignUpGenius.com/go/70A0948A8AA22A13-cake

25 Thurs – 1:00pm   Art – Craft – Create: Craft Class hosted by Antoinette Boulet (To be held at Boulet home 19219 Edge Manor Ln, Richmond, TX 77407)

RSVP here – Art – Craft – Create!:  www.SignUpGenius.com/go/70A0948A8AA22A13-artcraft

27 Sat – 1:15pm  The Woodlands Social!

Teen yoga class specially designed for our hidden teens.  (To be held at Yoga Space at Pilate Place at 30420 FM 2978 The Woodlands, Tx  77354) www.pilatesplaceyogaspace.com

RSVP here – Yoga:  www.SignUpGenius.com/go/70A0948A8AA22A13-thewoodlands

PROM for chronically ill teens!  And don’t forget to attend our FUN (anti) prom planned on Friday May 3, 2013 especially for our high school aged hidden teens!  Casino games, prizes, dinner and more!!  Sign up through our website today!  www.Mikshiddenhearts.org

A big thank you to our teachers above for dedicating their time and talents to our MHHA teens!!