Posts Tagged ‘inspiration’

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Me and my felllow hidden teens: Michael & Natalia

The second annual Mik’s Hidden Hearts Alliance Anti-Prom for our hidden teens and young adults was a huge success!  

I am still in a bubble of happiness about it (with a little bit of sadness that it’s over…). My devoted family and friends worked so hard for months to pull everything together for this event and it definitely showed. Without them, the Anti-Prom wouldn’t even be possible. I thank you all so much and I love you all. Ya’ll are my heroes.

This year, we held the event at the lovely Maggiano’s Italian restaurant in the Houston Galleria area. The always amazing Mike Eichenberger was our emcee and our night consisted of dining on a delicious dinner prepared by the restaurant, casino games, TONS of prizes and a photo booth from Jonny Black Productions (which was such a fun addition this year!).

 

Swag Bags!  Sponsored by The Abbott Family, The Allen Family and The Toman Family

Swag Bags! Sponsored by The Abbott Family, The Allen Family and The Toman Family

SWAG BAGS:  Each guest went home with a swag bag made possible by the Abbott Family, Allen Family and Toman Family.  Each one was complete with a new edition MHHA t-shirt, MHHA coffee cup, wrist band, candy, drinks provided by Hoist, and more.

 

1265237_10104429087554910_6297330772429939780_oPRIZE  BASKETS:  We also gave away numerous big prize baskets that were completely awesome (if you ask me) with the top 3 prizes included:  a Texan’s themed basket which contained four tickets to their next game (donated through the Katy Classical Academy donation drive/ Johnson Family), 24 inch Flat Screen TV / Blu-ray dvd from the employees at Enterprise Bank Pin Oak location, and Beats headphones/gift cards basket from Enterprise Bank employees at Pin Oak location..

Perhaps one of the biggest highlights of the night was that three news stations came up and did a report on the prom. It was quite a surprise to me and I was both excited and nervous when I was interviewed, but I was pretty pumped that we were going to have word get out to those watching of what Dysautonomia is and what Anti-Prom\MHHA is all about. Much thanks to ABC 13 News, Fox 26, and Univision for covering the event.  I would also like to thank my fellow hidden teen, Natalia Rijos, for speaking Spanish on our behalf for the Univision interview – you are a wonderful spokesperson!  1973369_10104429049466240_4588128782616635838_o

I also want to thank my Anti-Prom committee which includes my co-chairs Lori Allen, my Aunt Ronda, and my mom. Thank you all so much for the hours of work you put into this event and for running with my crazy, over-the-top ideas and making them possible. Lori created the beautiful Anti-PROM masquerade decor, coordinated many details with Maggiano’s and so much more to list. She is so absolutely talented and she ran with the vision I had for the prom and it came out beautiful (You rock Lori!!).

My Aunt Ronda took off a whole week of work just so she could focus on putting together all of the door prizes, prize baskets, and swag bags (as well as running all over town collecting donations). Much appreciation to her team of volunteers across town for literally dropping everything to help her put together all the gorgeous prize baskets and door prizes!!  My grandmother, aka Nana, also helped tremendously with this and I thank you both for both being some of my biggest advocates and for everything you have done for me, this event, and MHHA.

I also want to thank my mom so incredibly much for everything. For staying up late hours creating designs, coordinating, and spreading the word. For running around on the brink of insanity to make sure everything is pulled together – for always being a great mentor, and for being an amazing mom to me and to my two siblings in the middle of it all.

10003634_10104429050923320_6918126023045552876_oFor all of our donation coordinators who went above and beyond by reaching out to their favorite businesses, coworkers, families and friends to gather so many donations that left our hidden guests in awe of the too many to count prize baskets and door prizes.  (Big big big thank you to Lesha Daniel for always quietly working her magic and sharing our story and her daughter’s dysautonomia story so effectively and heartfelt that our community just embraces us to help do their part.  And to Kimberly Smith for working her magic with her coworkers… what generous supporters!)

The Anti-Prom was a magical night and was all the more special to me with this being my senior year. To see the smiles and joy on my fellow hidden teens and young adult mentors faces, was a privilege and I am so honored to be among so many inspiring people.  It is a memory I will always cherish and I look forward to giving other hidden teens this special night for many more years to come.10259926_10203889823911229_3628666037562009240_n

Big thank you to Brett Perroux Photography and Tiffany Daniel Photography for capturing our event beautifully!  See below for their link for the photos.

To see the news reports about our Anti-PROM, click below:

Fox 26 News: Mik’s Hidden Hearts Alliance Anti-PROM

ABC 13 News:  Mik’s Hidden Hearts Alliance Anti-PROM


MHHA Anti-PROM could not be possible without our generous volunteers, donors and sponsors. 

(This list is continuously being updated as we receive the Anti-PROM wrap up details from our volunteers.  Please send your updates to:  info@mikshiddenhearts.org.  We want to make sure all of our generous supporters are recognized!)


1978809_10203877963894736_8939445103350707827_n-Our volunteers who helped set up, deal, supervise, and so much more!  

BIG thank you to our neighbors, The Pinel Family (for everything!!) and our other sweet neighbors (we are so blessed!) Kelly & Rodney who saw a moving van, knew we had Anti-PROM coming up and generously (and blindly!) offered to help move/setup whatever we needed (and boy did we need their help!)

  • Our entire Anti-PROM volunteer team!
  • Maggiano’s Restaurant (and especially event coordinator Allison!)
  • Mike Eichenberger – Emcee
  • ABC 13 News
  • Fox News
  • Univision
  • Katy Classical Academy (for the prize donation drive and selecting MHHA for their Charity of the Month)
  • Pruning Hook’s Ministry for donating dozens of beautiful prom dresses to our hidden teen girls
  • Brett Perroux Photography and Tiffany Daniel Photography – for once again capturing our event beautifully!  Thank you!!
  • Jonny Black Productions for the fun photo booth

 

Thank you Donors!:

  • The Abbott Family
  • The Allen Family
  • The Andrews Family
  • The Bowen Family
  • The Butler Family
  • The Canseco Family
  • The Dudley Family / Lia Sophia Rep Stephanie Dudley
  • The Girgenti Family
  • The Heard Family
  • Patty Hermann
  • The Jinks Family
  • The Johnson Family
  • The Lamb Family / Lamb Foundation for Dysautonomia Research
  • The Leavitt Family
  • The Lee Family
  • The Lyons Family
  • The McWhorter Family
  • The Morello Family
  • The Northcutt Family
  • The Pinel Family
  • The Schwartz Family
  • The Smith Family
  • The Smithers Family
  • The Stilwell Family
  • The Svatek Family
  • The Thorpe Family
  • The Toman Family
  • The Wright Family
  • Blackjack Casino Company (without you, there would be no casino night!)
  • Brookshire Brothers
  • Dr. Catherine Wilder, Smile Design
  • Enterprise Bank Pin Oak Location in Katy
  • Fox Pizza
  • Girl Scout Troop 7109:  Clear Lake / Seabrook
  • Global Kids Project
  • Gringo’s Mexican Restaurant
  • Hoist
  • James Avery Jewelry – Katy location (Cyndi Miller coordinator)
  • Katy ISD Maintenance Dept Coworkers (Kimberly Smith coordinator)
  • Keep Kids Connected
  • Melaney Gibbs-Tarantino
  • Mickie C and Company Realty
  • Midway BBQ
  • Origami Owl – Stephanie Parrish
  • Pilates Powerhouse
  • Sandi Hall – Medical Massage Therapist
  • The Santikos Palladium
  • Tim & Staci Domino – Bath & Body Works gift cards
  • Visible Changes, Inc

MHHA Event Photography:  Guests, volunteers and donors have the rights to use our photos.  If you want to use them for any type of publicity purposes, permission in writing must be granted from us.  Email us at:   info@mikshiddenhearts.org

Tiffany Daniel Photography Anti-PROM Pictures (code to download 4574)

Brett Perroux Photography Anti-PROM Pictures:  Pics below.

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Mik’s Hidden Hearts Alliance is dedicated to bringing positive encouragement and hope to homebound and hospitalized teens who suffer from Dysautonomia and other life-changing chronic illnesses through social outreach, Hope Kits, Hospital Teen Program and Dysautonomia Awareness.  #dysautonomia #chronicillness #Hope4DysTeens #TheHidden Dysautonomia Teens

Please help spread awareness!  Like our Facebook and Twitter pages.

 Learn how you can help MHHA here.

We appreciate all of our angelic sponsors.  With every big or small donation, we are able to help more Hidden Teens.  Special thank you to our Gold Heart Sponsors at Lamb Foundation for Dysautonomia ResearchSpero Rehab and J Knesek & Assoc.

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Hope to see you this Sunday, December 8 from 4:00 – 7:00 for the first annual Mik’s Hidden Hearts Alliance family Christmas and Keeno Potluck Party!

What to bring:  

1.  It’s Potluck!  So please bring something to share.

2.  Keeno Game:  For each player (we encourage everyone to play!) bring a wrapped gift value up to $10.  What is Keeno?  Super easy fun game – think Bingo with cards.

RSVP Here:  To let us plan accordingly and get directions to party location.

Who can attend?:  Any hidden teen and their family.  

Please come as you are!  This is all about comfort, welcoming atmosphere and friends!

 

 

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#BlessUpDysautonomia – In honor of Dysautonomia Awareness month, we challenge everyone: hidden teens, their families, our entire communities to do small and big random acts of kindness towards people in our community who are homebound due to illness.

Think about that neighbor you have not seen in awhile or that person who was on your prayer list at church you have not seen. Seek them out, Bless Up and do little “angel drive byes”. These acts towards homebound people of all ages is appreciated more than you could ever know. Be the hope and light for others…

http://www.MiksHiddenHearts.org

Thank you to the Rehg family for allowing us to share this touching post. Navigating the path of a debilitating chronic illness being an adult is incredibly hard. Having to watch your teen go through it and live with daily pain… heart wrenching. The Rehg family have been a tremendous source of information and inspiration. Hugs to you all.
 
In Lorri’s words (Mom to daughter Sam):  In honor of today being the start of Dysautonomia Awareness month, I wanted to repost a post from Sam that I somehow posted with limited access the first time! As many of you know, we’ve been on this Dysautonomia (and Ehlers Danlos) journey for almost 5 years now, and it’s been a long and difficult road. We continue to redefine a “new normal” every day, while having hope and faith that one day we will all find a way to beat this. It’s a difficult path, and it often feels so isolating.
 
We are so grateful for all the love and support from our family, friends and Sam’s extended team of docs and caregivers as we find our way through all of this. We pray that one day this will all be behind us, and all the families whose lives have been impacted by the losses experienced with chronic illness as well. It takes alot of courage and strength to face all of the challenges that a chronic, hidden illness brings, and to open up and share that with others.
 
Photo: In honor of today being the start of Dysautonomia Awareness month, I wanted to repost a post from Sam that I somehow posted with limited access the first time!  As many of you know, we've been on this Dysautonomia (and Ehlers Danlos) journey for almost 5 years now, and it's been a long and difficult road. We continue to redefine a "new normal" every day, while having hope and faith that one day we will all find a way to beat this. It's a difficult path, and it often feels so isolating. We are so grateful for all the love and support from our family, friends and Sam's extended team of docs and caregivers as we find our way through all of this. We pray that one day this will all be behind us, and all the families whose lives have been impacted by the losses experienced with chronic illness as well. It takes alot of courage and strength to face all of the challenges that a chronic, hidden illness brings, and to open up and share that with others.  A couple of weeks ago, Sam was brave enough to share a glimpse into her heart, and into the "inner world" of life with chronic illness.......From Sam:  "I know it's hard to believe that you can actually miss school... But when your stuck at home only being able to do very few things every month. And when you do, being knocked out for weeks. You come to REALLY miss friends, homecoming, school, and everything that comes with it. High school is supposed to be fun and all kinds of new experiences . But instead for me it's filled with doctors and all kinds of new symptoms. I may look normal and try to hide my pain but, in the inside its always there and it never goes away.You never know how good you have got it, until it's gone."A couple of weeks ago, Sam was brave enough to share a glimpse into her heart, and into the “inner world” of life with chronic illness…….From Sam: “I know it’s hard to believe that you can actually miss school… But when your stuck at home only being able to do very few things every month. And when you do, being knocked out for weeks. You come to REALLY miss friends, homecoming, school, and everything that comes with it. High school is supposed to be fun and all kinds of new experiences . But instead for me it’s filled with doctors and all kinds of new symptoms. I may look normal and try to hide my pain but, in the inside its always there and it never goes away.You never know how good you have got it, until it’s gone.”

Because it is important to us at Mik’s Hidden Hearts Alliance to put a “face” with Dysautonomia in order to spread Dysautonomia Awareness and to give our hidden teens a voice, this week we are featuring one of our Hope Kit Recipients answers to the questions below.  

A big thank you to Lexi P. of Sugarland, Texas for her willingness to share her thoughts and help MHHA reach out to other teens.

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Lexi on a great day! – at MHHA Anti Prom

1. The illness I live with is: Dysautonomia, EDS, POTS (subtype of Dysautonomia), gastroparesis, costrochondritis, and NCS (subtype of Dysautonomia)

2. I was diagnosed with it in 2010.

3. I first noticed my symptoms when I had a reflex autonomic seizure at age 7.

4. The biggest adjustment I’ve had to make is  drinking a lot of Gatorade and taking a lot of pills.

5. Most people assume that I am healthy.

6. The hardest part about “not so good” days are missing out on everything around me and getting behind in school.

7. Prior to me getting sick, I liked to do competitive cheer.

8. A gadget I couldn’t live without is my phone.

9. The hardest parts about the nights are having stomachaches.

10. Each day I take approximately 16 pills & vitamins. 

11. Regarding alternative treatments I include Pilates.

12. If I had to choose between an invisible illness or visible illness I would choose being invisible.

13. Regarding school, I am online schooled and I find this really convenient.

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Lexi on a not so good day

14. People would be surprised to know just how bad I feel every single day.

15. The hardest thing to accept about my new reality has been having to deal with it.

16. Something I never thought I could do with my illness that I did was doing weird stretchy things with my joints.

17. I feel that the general awareness about my condition is very poor.

18. Something I really miss doing since I became ill is having good days.

19. It was really hard to have to give up being active.

20. A new hobby / goal I have taken up since my diagnosis is Pilates and BBYO (youth organization).

21. If I could have one day of feeling normal again I would sit out in the sun all day without worrying about getting dehydrated.

22. My illness has taught me to never give up.

23. Want to know a secret? One thing people say that gets under my skin is that when people say  I look fine to them when  I don’t feel good.

24. But I love it when people treat me normally.

25. My favorite motto, scripture, quote that gets me through tough times is what doesn’t kill you makes you stronger.

26. When someone is diagnosed I’d like to tell them don’t hide like I did in the beginning; make friends with others who have the same illness.

27. Something that has surprised me about living with an illness is I find ways to work around it.

28. The nicest thing someone did for me when I wasn’t feeling well was making me laugh and smile.

29. The person(s) who has been there for me and I could not do without is my mom.

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Lexi having fun at Anti Prom with friends : )

30. The fact that you read this list makes me feel hopeful.

After my attempt to go back to school the beginning of my sophomore year and trying to be back in the “high school life”,  I knew it was not meant for me. Besides not being able to keep up with my peers physically and mentally because of my Dysautonomia, it seemed that nothing held the glory that I once saw in my freshman year when I first started high school.  I felt alone in my school despite it being one of the largest schools in Texas.  My two best friends would help me the best they could at school, but unfortunately we were all on different curriculum paths so only got to meet up at lunch time.

I had a difficult time finding someone who could relate to my feelings of living with a life-changing illness while recognizing that I do not prefer to obsess or hyper focus about my symptoms.  (Which I understand can be confusing.  I just have a difficult time focusing on me and do not want to be a complainer.)  I felt out of place and awkward in my classes – especially when the brain fog would hit with a vengeance.  When this happened, simple words would fail me and I would become confused with the easiest of tasks.  Attempting a “normal” personae was exceptionally exhausting to me and trying to pretend it did not bother me was no longer working.

That period of time was terrible for me…more so than usual.  I felt like I was on one side of a glass wall in my classes and my class mates were on the other.  It seemed like they were hesitant to walk to my side of the glass and had a mixture of pity and avoidance in their eyes.  Maybe it was because I represent something that we all want to avoid:  that sometimes negative things in life can happen to someone young unexpectedly and they, like I used to be, prefer to be oblivious to sometimes the harsh realities of life.

Besides having to wake up at 5 in the morning to start my medicine regimen,  I had to go to the school nurse at lunch time for my scheduled array of medicines only to have reality hit me despite me trying to live in denial that I was “fine”.  Each visit, the nurse kindly insisted on checking my blood pressure and despite my assurances that I felt okay (though I really did not), my blood pressure was very low.  And, when I insisted she did not need to call my mom and asked to be able to go back to class, when I got up to try to go, I would pass out (this started happening on Day 2 of sophomore year).  Rightfully so, she did not exactly take my word for how I was doing from then on out.

Trying to make it a full day of school and keep up with homework, I had to humble myself and let go of my pride.  I had to accept the fact I needed help by doing school at home. It made me sad that things were not the same and that everything has changed dramatically.   However, after I made that decision to go to homebound, it felt as if a heavy weight was lifted off my shoulders and I could be my true self.  A girl living with a debilitating chronic illness.   I embraced my homebound “hidden life” with open arms.

(Once again, this picture is proof that you can look “healthy” while having a unpredictable hidden illness.) I was determined to go to my sophomore year homecoming dance because it was the one year anniversary when I first fell ill and I was determined to overcome this date I had dreaded for a year. I did not mind what I had to “pay” for this one night out. Extreme symptoms, exhaustion, low bp, etc for days after this night.

However, this acceptance did not mean I accepted defeat from life.  Just an acceptance that I have to live within boundaries that works for me.  The one event that was very important to me mentally was making it to my sophomore year homecoming dance.  Besides homecoming being a very big deal in Texas, more importantly,  it was the one year anniversary that changed my life forever.  One year ago from that day was when I first collapsed at my freshman year homecoming dance and I could not have imagined then the journey and struggles I was about to face.   So, going to my sophomore year homecoming dance, I didn’t care if I could only be there for five minutes before my symptoms kicked in – I was determined to go to prove to myself I could beat this thing. 

Rachel Banister, a family friend, took the picture of me to the left before the homecoming dance.  One of my best friends, Erin, was behind Rachel making me laugh (even though she did not want to go to homecoming that year, she went to support me.).  That’s what I love about my best friends.  They are always there for me, making me laugh despite my circumstances.  And, I did not mind what I had to “pay” for this one night out. Extreme symptoms, exhaustion, low bp, etc for days after this night.  For me, this was a mental victory.  I could now go to homebound with at least one less regret on what could have been in my high school existence if I had never been ill.

It was shortly after going on homebound and in the middle of one of my many ER trips and medical testing where I found my purpose and how I could bring something positive out of this situation.  God led me to one thing after another until the idea of reaching out to other teens struggling like I was came to life. I grasped that idea to help the “hidden” and moved forward with it with the help of my mom and my adult friends.  Mik’s Hidden Hearts Alliance was then created because I do not want any other Dysautonomia teen to ever feel like they are alone.  I want them to know they do have a friend who cares.   Then and now, reaching out to others fills my heart with joy and my wish is to brighten their day, remind them they are not forgotten and to give them hope.  It makes all the pain and tears I’ve gone through worth while.

Fast forward to today, I am stronger from the things I have battled through and I have great determination for the future.  My relationship with God is closer because of my trials and journey. Though I still have certain struggles both physically and mentally, I strive to always keep my eyes on Him.

I will try my best to walk on the path He deems best for me. I’m not perfect and I’m not a saint, but I sure can honor Him, glorify Him and help spread His word.  Putting my prayers into action, I want to reach out to the ones who feel hidden and to do what I was meant for in this world the best I possibly can.

This has been my journey and I hope it can reach out to any of you who are struggling. Though I have my share of “down” days, it is my daily goal to see the blessings around me.  Your life experiences will take you down the path you were meant to be on. But it is your decision to let your struggles make you stronger or to let them tear you down and break you. 

Reason for me to smile this week:  The planning committee for the Boo Bash to help raise money for more Hope Kits for hidden teens have some GREAT entertainment lined up.  More details will be sent out soon!  Stay tuned!

Dys Song of the day: This song has been really special and important to me.  It is another song     I listened to for comfort and empowerment for the days I was really low.

“Never Surrender” By Skillet

I don’t wanna feel like this tomorrow

I don’t wanna live like this today

Make me feel better, I wanna feel better

Stay with me here now and never surrender

Make me feel better, you make me feel better

You make me feel better, put me back together

I don’t wanna feel like this tomorrow

I don’t wanna live like this today

Make me feel better, I need to feel better

Stay with me here now and never surrender