From the Momma Bear:  I love hearing the Pay It Forward stories at places like Starbucks and Chick-fil-a.  People spreading kindness without expecting anything in return.  Just simply doing something to bring joy to another person’s day. This, my friends, is what we should all strive to do each and everyday.  Big and small acts of kindness purely done to be uplifting to others.  Which brings me to this post for today….

Friday Night Lights and Pay it Forward?!:  I just had to share the story that happened to Tami, one of my sweet friend’s, son named Spencer who just happens to have Autism.  Spencer is an amazing kiddo and is one of the two big blessings to Tami and her husband Mike.

Their other blessing is Spencer’s big brother, Parker, who plays football for the Katy High School varsity team (in case you do not know, football is a big deal here in Texas!)  Mike, Tami and Spencer go to Parker’s games to cheer him on and what could be an event that spotlights Spencer’s autistic difficulties turns into an amazing display of true human kindness.

Check out the video below of Katy High School Band drummer letting Spencer play with the band.  This has not happened one time, but several times.  The drummers include Spencer and it means the world to him and to his parents.

Sept 26 - Spencer's Mom, Tami, wrote "Fun night for little bubbie!! Thanks @maxholtke and Katy drumline for letting him jam with y'all!!"

Sept 26 – Spencer’s Mom, Tami, wrote “Fun night for little bubbie!! Thanks @maxholtke and Katy drumline for letting him jam with y’all!!”

One of Tami’s friends wrote “Max watches for Spencer and the other percussion kids all greet Spencer as he comes in. They want him to play! At one point the cadence wasn’t fast like Spencer likes to play so Jordan changed cadences. This is s story about drummers and their passion for drumming!”

Click here if the video is not showing below:  http://youtu.be/3ecpMdrhMnc

Because we at Mik’s Hidden Hearts Alliance greatly believe in promoting all of those who live with hidden illnesses, we also like to focus on those young people who are often “invisible” to the general population due to disabilities or disorders.  We also like to encourage our hidden youth to not just look at being served, but how to “Bless Up” and serve others.  When a “normie” teen reaches to the hidden, it makes my heart sing even more.  Thank you Katy High School Band and Spencer for being another example of goodness in our community!

And don’t forget!  Mik’s Hidden Hearts Alliance 3rd Annual Boo Bash Charity Casino Night will be held on October 25.  We are raising money to help further our mission to reach out to homebound and hospitalized youth both locally and nationally with our programs such as Hope Kits Care Packages and our very popular Anti-PROM to be held in Spring 2015 in Houston at the wonderful Maggianos.

Please consider helping us towards our fundraising goals AND attend the Bash!  To learn more, go to www.MiksHiddenHearts.org.  

Join us for the 3rd Annual Mik's Hidden Alliance Boo Bash!

Join us for the 3rd Annual Mik’s Hidden Alliance Boo Bash!

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Mik Homecoming 2010 – Freshman year in High School – Hours before our life changed forever

From the Momma Bear: October is a fun month of fall festivities and homecoming football games. I was just like many of my sweet momma friends 4 years ago coordinating my daughter’s Homecoming pictures, Homecoming mum (it’s a Texas thing!), her homecoming dress, etc. My daughter always had big goals and dreams and she started out her freshman year ready to take charge and make them happen – determined to go have fun in high school while focusing on making good grades so she could go away to college after graduation.

This October 23rd marks the 4th year anniversary when my daughter first collapsed on the dance floor at homecoming dance. Oct 23… the day my daughter’s entire “planned” future was taken away from her (or so we thought then). Her entire high school experience – gone in one night. When something we all take for granted, a working autonomic nervous system, decided to work against her pitting her body against the will of her spirit.56813_1697051351358_2025625_o

We decided to host our first Mik’s Hidden Hearts Alliance Boo Bash in 2012 to turn a very negative date in our world to a positive date (Boo Bash!) in order to raise money to spotlight the needs of the hidden teens, young adults and their families that we serve. October 23rd is also Texas Dysautonomia Awareness Day in honor of Mikaela Aschoff.

Please make plans to attend Boo Bash and help us continue our mission! It is a blast! If you can’t attend, please consider making a donation, sponsoring or purchasing raffle tickets. Go to our website for more information: www.mikshiddenhearts.org

Thank you for helping to make my daughter’s dream and vision of creating Mik’s Hidden Hearts Alliance for Dysautonomia Teens come true and giving the families we serve a voice and help them to remember they are not alone. Oct 23rd is now a positive day in our eyes. It is the date we had our eyes open to a world we did not realize unfortunately existed before we were exposed to it…. that of thousands of young people across the country who are suffering from debilitating chronic illness and their families who are in need and live this life on a regular basis. They are the unsung heroes – some of the strongest people you will ever meet – who live a mostly invisible life and deserve their time in the spotlight.

Calling all Hidden chronically ill youth and their caregivers – we want to hear from YOU. (We would love have the patient perspective, caregiver perspective or both!)

Send us your video clips and pictures and let us know what Mik’s Hidden Hearts Alliance has meant to you. Also, we would like to hear how the hidden illness you face affects you.

Video clips and photos will be used in our upcoming Awareness Campaign that will be premiered at Boo Bash

Please have submissions in by Oct 1.

Send to: info@mikshiddenhearts.org

20140218-115755.jpgJoin us as we welcome some of our out of town families who will be in Houston!  

This event is for teens/young adults and their caregivers with dysautonomia and other life-changing hidden chronic illnesses.  

When & Where:  Tuesday September 9, 2014 6:30 PM – 8:00 PM
Memorial Hermann-Texas Medical Center 6411 Fannin St Houston, TX 77030

In the hospital location:  Memorial Hermann Hospital Cafeteria

1st floor, Robertson Pavilion

(*Feel free to go get your dinner first, then join us at the table)

 **Update:  Heads Up! We just found out the regular Hermann Cafe is under construction. So they moved it temporarily to a makeshift cafeteria in Memorial Hermann basement, Hermann pavillion, As long as they have tables we can sit at, we do not mind being in the basement : )

RSVP Please so we can make sure to save you a spot!  RSVP at:  info@mikshiddenhearts.org

And don’t forget to ORDER TODAY to gift yourself with our “Fall to Fly” shirt, then because of your order, we will send one to a Hidden Teen Hope Kit recipient AND donate 20% to our good friends at Lamb Foundation for Dysautonomia Research.  Orders accepted through Sept 15!  Place your order here!

Fall to Fly Sept 2014 Promotion

 


Mik’s Hidden Hearts Alliance is dedicated to bringing positive encouragement and hope to homebound and hospitalized teens and young adults 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

To order your MHHA “Fall to Fly” Shirt, click here.
Fall to Fly Sept 2014 Promotion

1907418_10154577838080227_5743302117458273462_nMessage from the Momma Bear:  In light of the sad passing of one of my favorite actors, Robin Williams, I felt compelled to write this post facing many who struggle with invisible battles.

Many of you know I get on my soapbox to highlight the struggles and needs of the overlooked thousands of teens and young adults who live with debilitating chronic illness. People – you and me – tend to get so busy we forget about them and their overworked and over stressed parents/caregivers.

Can you please take a moment today to send a quick encouraging message to one of your chronically ill friends or another group of people whose struggle is near and dear to my heart: one of your friends you know struggling with mental issues?

Next step:  Brainstorm ways you can serve them (the patient and their family) in big and small ways.  Something as simple as a pizza gift card can help take care of their dinner AND ease their financial stress when medical bills are never ending.  Most importantly, it helps them to remember they are not forgotten…. that they matter.

You will never truly understandBack to my soapbox:  I love the dedication of the medical teams who REALLY understands invisible illnesses and works diligently to not only ease the symptoms, but search for a cure.   This soapbox is NOT for those dedicated medical team members.  However, I REALLY get on my soapbox when some in the medical community seem to feel better when modern science can not explain a physical chronic illness so they tell these kids it’s all “in their head”. I have heard this told to countless patients we met through Mik’s charity, Mik’s Hidden Hearts Alliance, all over the country.

(1). Majority of them did not start their illness journey depressed. Living years in pain and isolation CAN cause feelings of depression. However some doctors just want to focus on the depression, claiming the physical symptoms the patients are facing are due to their “sad” feelings, refer them to a psychiatrist without trying to cure the illness or do not believe the physical symptoms are caused by a chronic illness that in many cases, still in its infancy in research.

2. No matter what, mental disorders are REAL. Those who suffer from it are similar to our chronically ill teens in that both groups fight an invisible battle everyday. Just because you can’t see it does not mean it is not real.

3. Do I believe all our chronically ill teens should be diagnosed as depressed? No – because this may not be the case (everyone gets the blues now and then) and this is like a pat on the head non-serious answer that tends to trivialize their physical symptoms AND it lessens the importance of those suffering true long term depression battles.

Both chronically ill patients and those patients suffering from a mental illness needs our understanding, compassion and hope. Treat your immediate world a little nicer. Practice patience in our rush get out of my way society. Reach out to them on a regular basis to let them know they are not forgotten.

Because you will never know how far your one smile or your one kind word can make someone’s day a little better. Spreading kindness and understanding gives life to hope. Hope encourages all to keep on trying.

And please remember – there is NO shame in asking for help when you or a loved one realizes the “blues” is much bigger than a temporary down time.  Get professional help.  If we were more transparent with one another, we would realize many people we think have it “all together” are really struggling with their own invisible battle.  Regardless what your personal battle looks like, we are all in this together.  Love thy neighbor and let’s work on making our world a little more compassionate and understanding.  End of Soap Box : )

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Mik’s Hidden Hearts Alliance is dedicated to bringing positive encouragement and hope to homebound and hospitalized teens and young adults 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.

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My Hidden Hearts letter jacket (I lettered in life) with the place I spent most of my high school years in the background: Children’s Memorial Hermann Hospital.

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My senior year, and rocky high school journey, have both come to a close. It is completely surreal to me because even though these years have all been challenging and seemed to go by so slow – it went by in the blink of an eye.

You would think that I would be tremendously happy to have these past four years behind me, but in reality I’m filled with a bitter sweetness as I go over the memories, the trials, the triumphs, and answered prayers.  And as I review these last few years, really starting at my “new life” that began on October 23, 2010 when I first collapsed and ultimately learned I had the life-changing often debilitating illness beast called Dysautonomia, I realized I learned 4 key lessons I would not have learned otherwise.

1.     Would I change it if I could?  If I was told that I could go back and change everything, especially becoming stricken with Dysautonomia, to live the life I had originally imagined – I would refuse the offer. Why?  Because despite how difficult this path has been it has been so rewarding in return.  The people I have met, especially my fellow hidden (chronically-ill) teens, I would not have met otherwise makes me not even contemplate for a moment to change the last 4 years.  Sure, I could do without being a human pincushion and the myriad of very unpredictable painful symptoms of Dysautonomia, but I would never trade having these people come into my life period.

2.     Discovering my purpose:  Through difficult times, it is what led me to discover there are other hidden teens and young adults like me and this developed a desire to reach out to them. One inspiring idea led to another and the idea for Mik’s Hidden Hearts Alliance was born. It took a challenging course of four years for everything to fall in its place and for certain prayers to be answered – especially receiving the vital help from volunteers and donors to make MHHA possible. I haven’t always been the most patient in waiting for all my prayers to happen, but when they have, it proved to me that it’s true that God’s timing is perfect.

3.     Pushing forward despite any obstacles life may throw my way:  Though I have improved physically compared to where I once was, Dysautonomia still has its grip on me revealing to me that I still have much healing to do mentally and emotionally. I am still triumphant in spite of it, and I know that God will help me through my struggles and heal the emotional wounds I bear… and that He has many more great things planned for the future. Besides the occasional tug on my emotions, life is kind of quiet at the moment. Currently, I have been meeting with all of my great business and charity mentors to obtain guidance on how to further expand and improve MHHA, as well as getting ready for community college next month (My goal is to pursue a degree in business so I can better serve my charity.)

4.     Despite Dysautonomia being unpredictable:  Dream, set goals, but understand it is okay not to have “all the answers”:  I have many goals for the next few years, but do not have everything exactly figured out yet….and for me that is okay. I am just going to wait and see what happens and where life will take me. In the mean time, I am going to take every little opportunity and adventure that is presented, find enjoyment in each day, run after my crazy ambitious goals, serve others, and break free of the tight hold that Dysautonomia has kept me in for so long.
 

With starting college, I am starting a whole new chapter in my life and this illness can no longer contain my spirit that is ready to soar. I am going to go out and LIVE.

Here is a sweet video my mom made in honor of my 18th birthday and graduation featuring many friends of mine I have met through Mik’s Hidden Hearts Alliance.

Below are some of my pictures throughout my High School journey.  The photos by Jen Culotta are a series we did to do “nontraditional” senior photos.  I wanted Senior Journey photos and just amazed at her beautiful work.  Thank you for following my journey.  To learn more about my charity, please visit www.mikshiddenhearts.org.

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The dress shopping day for last year's Anti-Prom

The dress shopping day for the first Anti-Prom

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I was very honored to be awarded one of the Hope and Joy Scholarship.

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