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!!”
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!”
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!
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.
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.
Message 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.
Back 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 : )
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.
Me and Mik on her 14th birthday 2010. (a few months before she first became ill) I miss the simplicity of “normal” days that I did not recognize as a quiet blessing & miracle back then.
(From the Momma Bear) We have not had a “Dys Song” in awhile and the one selected today is a must listen to for both the teen patient and their caregiver. Today’s song is “Her Diamonds” by Rob Thomas.
I personally can relate to this song’s lyrics because some days…I just can not take it anymore – seeing my beautiful kindhearted self-motivated determined daughter struggling with an inner desire that wants to FLY but a body that often times will not cooperate.
Though Mik has learned to push through the difficult days and rarely allows her tears to fall anymore, I can see her pain and discomfort every…single…day.
And this momma’s tolerance, (which is usually long-lasting, enduring optimistic filled “we can conquer all” attitude) to bear it can get diminished in the blink of an eye.
She should be out hanging with friends full of teenage energy, enjoying Senior-itis and not having to be concerned with how to balance the few hours each week of semi-energy and brain clarity so she can get “more” out of life.
I know my fellow caregivers and helpers can understand what I mean.
Yes, I believe faith is strengthen in times of trial (not bliss) and God will get us through the good and not so good days.
Yes, I believe we should make the most out of any situation life brings us.
Yes, we strive to teach our kids (and they teach us!) how to persevere with grace despite the obstacles in our path.
It’s just on some of “those days”, we have had enough and just wished for a moment in time we could bless our teen with a day of NORMAL. What normal day would you want for your teen if you could grant it?
Many in the autoimmune community for years have referred to “Her Diamonds”as their go-to anthem. Though this song has made the rounds, it deserves to be repeated – especially those new to the “chronic illness” world.
According to his website bio, at RobThomasMusic.com, Rob wrote this song about his wife, Marisol, who suffers from an auto-immune disease.
“Her Diamonds,” is the most personal song Thomas has yet committed to disc. Rob’s wife Marisol is courageously battling an autoimmune disease, and “Her Diamonds” was written “about a couple dealing with that on a day-to-day basis,” explains Thomas. “There’s an incredible amount of sadness that comes with something like that.”
Sometimes you have to fall… before you can fly
Love the beauty of this song and the heartfelt lyrics. And the video reminds me there is always tomorrow to start anew….and I always prefer to try a new day with a can-do attitude.
Because let’s face it, there is a good chance today is not the day for finding my magic wand to magically cure all of our chronically-ill teens. So we can choose to rise above it all, give our teens our care, love, support and most importantly HUMOR to see the good in each day.
(And sidenote, let’s just pray there are no hidden cameras in the hospitals… Mik tries to pretend she does not like my tapdancing Broadway show to all the alarm beepings when she is feeling down in the hospital! Ha! But I know she secretly likes it… right Mik? Uh…Mik?)
Check out the video below and let me know your thoughts! Also, make sure to check out the amazing non-profit organization Marisol and Rob Thomas founded called Sidewalk Angels Foundation. Love Marisol’s perseverance, their charity’s mission and the great work they have done.
Her Diamonds Lyrics
Oh what the hell she says
I just can’t win for losing
And she lays back down
Man there’s so many times
I don’t know what I’m doin’
Like I don’t know now
By the light of the moon
She rubs her eyes
Says it’s funny how the night
Can make you blind
I can just imagine
And I don’t know what I’m supposed to do
But if she feels bad then I do too
So I let her be
And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
She’s down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down
She sits down and stares into the distance
And it takes all night
And I know I could break her concentration
But it don’t feel right
By the light of the moon
She rubs her eyes
Sits down on the bed and starts to cry
And there’s something less about her
And I don’t know what I’m supposed to do
So I sit down and I cry too
And don’t let her see
And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
She’s down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down
She shuts out the night
Tries to close her eyes
If she can find daylight
She’ll be all right
She’ll be all right
Just not tonightAnd she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
She’s down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down
Songwriters: Thomas, Robert Kelly
Mik’s Hidden Hearts Alliance is dedicated to bringing positive encouragement 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
Please help spread awareness! Like our Facebook and Twitter pages.
From the Momma Bear: We are still on cloud nine from all the excitement, generosity and outright great time for Boo Bash held this past Saturday to help us raise money to serve chronically ill teens in our community and across the nation. As soon as Mik is recovered (energy crash… To Be Expected), we are working on the blog post to share with you all the details from the night and it will be posted soon.
Mik before the Homecoming Dance where she collapsed for the first time.
I did want to take this moment to highlight a bittersweet day for us coming up on October 23. This was the first day Mik ever collapsed. The first day she ever showed symptoms of Dysautonomia. She went from a regular teenager girl dancing at her first freshman year homecoming dance… to a teen who collapsed on the dance floor and was slumped over in a wheelchair leaving the dance. Doctors had no idea initially what happened to Mik. I never knew something like Dysautonomia existed. Our eyes were opened…
This day is bittersweet because I would never ever wish Dysautonomia life on anybody… much less my daughter. It was not just her life that changed that day… it was our entire family’s. If I could personally suffer the daily pain and exhaustion she faces, I would do it in a minute. I wished with all my might it was my very own burden to bear… not hers… and not her brother and sister’s.
This day is bittersweet because it opened my eyes and changed me permanently to become a better person. Before our “dysautonomia world” I, like many of my good friends, did charity work through church and other organizations. I liked to think if I heard of a need, I would figure out how to help. Never did I hear or realize the plight of families who had teens living with debilitating chronic illness. I heard about the sweet families who needed a fundraiser to help with expenses after an unexpected accident, the unfortunate diagnosis of cancer, etc… but never Dysautonomia (or the many other life-changing chronic illnesses). Because of the longterm duration of the illness and because families have a tendency just to “circle their wagons” and do what they can to help their teens and survive financially, they were hidden…
This day is bittersweet because through Mik’s difficulties she ultimately had a vision to create Mik’s Hidden Hearts Alliance to help reach out to other teens like herself that were homebound. Her vision was to help the teens in the children’s hospital and bring them teen friendly supplies (instead of having to use the baby shampoo, toothpaste, etc) Through her inspiring vision, she has brought together some of the best friends, families and teens I could ever wish to meet. Whether they are near or far, we are becoming one big MHHA family and I can not imagine our world without them.
At Mik’s Hidden Hearts Alliance, we pride ourselves on being a very welcoming (no cliques) positive, focus on HOPE outreach group for chronically ill teens and their families. If you have been a little nervous to try one of our meetings or socials, I greatly encourage you to come. If you did not know anyone when you came, you will have friends by the time you leave! Check out our Events Calendar here.
This upcoming Oct 23rd day is bittersweet because I am so proud that just one year ago, the State of Texas proclaimed it the “Dysautonomia Awareness Day” in honor of Mikaela “Mik” Aschoff. Mik was surprised at last year’s Boo Bash for this honor and we greatly appreciate State Representative Bill Callegari and State Representative John Zerwas for the proclamation. The City of Katy, our hometown, also recognized Oct 23 as the Mikaela Aschoff Dysautonomia Awareness Day signed by Mayor Don Elder, Jr.
October 23 Dysautonomia Awareness Day was created in Mik’s honor, but Mik will be the first one to tell you – it is in honor of all her fellow hidden teens. They inspire our family to move forward with MHHA. Every letter, phone call, Hope Kit recipient photos and more encourage us to move ahead and reach out to even more families.
Mik’s little brother Kyle – a big part of the team work for MHHA. He is our “muscle” for the heavy lifting and always has us laughing during his many photobombing attempts!
MHHA is an Aschoff family charity that could not be possible without the teamwork of her brother and sister, our amazing family, friends (who have stuck with us during this journey) and anonymous donor angels. It takes all of us working together to make this happen.
The State of Texas resolution is pictured above. Below is the wording for the City of Katy. I am thankful for all of you who have turned this heartbreaking day of Oct 23, 2010 into a day filled with hope, love and friendship through MHHA.
Mik’s little sister helping at a Dysautonomia Awareness event. She’s always a big helper and loves helping to pack Hope Kits
Mikaela Aschoff Dysautonomia Awareness Day
Oct 23, 2012
Whereas: Mikaela Aschoff has been the visionary and founder of Mik’s Hidden Hearts Alliance, a charity dedicated to helping teens with Dysautonomia and other hidden chronic illnesses; and
Whereas: Mikaela Aschoff is leading the charge for Dysautonomia Awareness in our community and has set a determined goal to bring about awareness across the nation; and
Whereas: Mikaela Aschoff has been a driving force to develop outreach programs for both homebound and hospitalized teens; and
Whereas: Mikaela Aschoff has inspired and led donation drives in which hundreds of gift bags have been distributed to the local children’s hospital and Hope Kits sent to homebound teens, both locally and nationally.
Whereas: Mikaela Aschoff, despite her own debilitating, unpredictable symptoms of Dysautonomia, is dedicated to showing other teens how to focus on what they can do and not on what their bodies limit them to do. And, most importantly, TO NEVER GIVE UP! Now, Therefore, I, Don Elder Jr., Mayor, hereby recognize October 23, 2012 as Mikaela Aschoff Dysautonomia Awareness Day in the City of Katy, and encourage everyone to become better informed about this disorder and the persons whose lives it affects on a daily basis. Posted by www.mikshiddenhearts.org. Serving teens with dysautonomia and other hidden chronic illnesses.
From the Momma Bear: I am reblogging one of our most popular posts. Being on this journey with creating Mik’s Hidden Hearts Alliance with Mikaela, we both quickly realized MHHA is needed to support and bring hope not just for the chronically ill teen, but also for their family.
This post is of an episode that happened last year and is in my (momma bear’s) perspective. Go back to our blog to view Mikaela’s view of this same episode.
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.
Due to the frequent request for this blog post, we are reposting it. Know of a teen with some possible Dysautonomia symptoms and receiving “normal” test results. Read this for more information:
My daughter, Mikaela Aschoff, used to go to Seven Lakes High School in Katy, Texas. She is currently on her 3rd year of homebound from a very unexpected illness called Dysautonomia that started abruptly when she went to her Freshman year homecoming dance. With strength, courage and determination, she has not let this disabling condition stop her from starting a charity to help fellow hidden teens.
As her mom, I am amazed not just by Mikaela (who I think is pretty great in my book!), but also by today’s teens and how many actively pursue volunteering opportunities, environmental causes, etc. So many of the schools now have amazing clubs focusing on volunteering in their community and the world. Youth groups at church travel near and far to do mission work.
While all these volunteer acts are blessings, remember not all world changing events are BIG… they start with reaching out to one person and changing their day. What happened to that fellow student who used to be in your class.Has it been 2 months since you seen them? 2 years? Last you heard they were sick, but you were not sure you understood their illness.
Years may have passed by. Did they move? If they suffer from Dysautonomia or another life changing hidden chronic illness, more likely the answer is no. They are still there. In your community. In your neighborhood. They understand that friends move on and “out of sight out of mind”. But, sometimes the mental pain of an illness hurts more than the physical symptoms. Sometimes they just want to forget for a minute, be with friends their age… to be REMEMBERED.
Change the world by reaching out to that one person. Don’t be nervous to ask about them. Don’t be afraid to speak about the obvious illness. Message them on Facebook. Be “old fashion” and send them a letter in the mail.
Want to help even more hidden teens? You can also volunteer with Mik’s Hidden Hearts Allianceand help with many of our outreach programs including our card writing campaign to help these teens to not feel hidden. Start by liking our Facebook page (link here) and contacting us through our website to get on our teen volunteering list. We will keep you up to date with various opportunities.
Thank you for reaching out to the hidden. With your help, we can shine light not only on Dysautonomia, but recognize these strong courageous teens as well.
From Mik’s Mom: On October 2, 2012, MHHA brought 100 gift bags to be distributed to patients at Children’s Memorial Hermann Hospital at the medical center in Houston, Tx. Below is a picture where volunteers Mikaela, Kelly and Vanessa meet up with a teen patient in the teen lounge at the hospital. At the time, the patient had been in the hospital for 15 days… with possible Dysautonomia symptoms (coincidence??).
And what can these teen all bond over and laugh about (as in the picture below??) Dealing with all the Momarazzis in the room (and it wasn’t just me!) Ha!
Mik's Hidden Hearts Alliance for Dysautonomia 