Can you be a difference maker?
Have you ever had a child experience pain and ask you to make it go away? Pain from a scrape, pain from a broken limb, pain from surgery… These types of pain have an end, you can’t take it away but you can give them hope that it will get better. What about pain from a broken friendship, pain from failing a test or class, pain of not being chosen… This pain is different and often times deeper because there is no easy “fix.” There is hope it will ease in time, but not the same as the healing of a broken bone. There quite possibly will be lingering effects to this pain but again they are part of life and you know time will ease the pain and there is possibly a hidden lesson you as a parent can squeeze out of it. If you have kids, you have seen pain and been asked to make it better. BUT, What if you couldn’t? What if your child suffered with something and each time they asked you to make it better or take it away you had to say, I am sorr… I can’t? Diabetes, Cancer, Dysautonomia, Cluster or migraine headaches, the list is vast! What if the only hope out there was in the hands of medical researchers who are probably underfunded, but that is your only hope. The hope that they will one day have the answers to take your child’s pain away. Thousands of children and young adults are at doctors offices, and hospitals right now being told they have a silent, often unheard of, often underfunded disease that has no cure, and few and far between answers. They sit in hospitals, for days sometimes weeks, sometimes months waiting on answers. To the outside eye, one may look at these kids and think, “she is perfect” “he looks so healthy” only to be blinded by an outer appearance that conceals an inner disability that is eating away at their very being. I feel passionate about this because I have spent the last 25 years suffering with my own “hidden” disability. As a teenager I was mocked and picked on that my headache wasn’t that bad. I have spent my adulthood, along with my husband and children, learning to manage my Cluster headaches and to be ever aware of the triggers. I can’t explain the pain, the limitations I experience and the sheer horrow of feeling like their is no end to this pain. I know my mother would have done anything to stop these headaches, her hands were bound and there was and still are no answers to make this better. I can’t imagine how she felt or how friends of mine that have children with hidden diseases feel. For this post I am going to concentrate on Dysautonomia. What is this you might ask, here is the definition from dynainc.org.
Dysautonomia is an umbrella medical term utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A dysfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. I became aware of this condition when a dear friends daughter was diagnosed in the 9th grade after collapsing at her first high school homecoming dance. An otherwise healthy girl was suddenly sick, and within a few months was unable to attend school and do what “normal” teenagers do. Her life was forever changed and different. But to the outside eye, you would never know it, hence the “hidden” part of these disabilities. After spending countless days in the hospital Mik as she is called decided she wasn’t going to let this disease get the best of her but rather she was going to use it to make a difference in the lives of all those children and young adults with silent, “hidden” diseases. Mik’s Hidden Hearts Alliance was born. Along with her amazing family Mik is changing lives in the midst of her own pain. Her mom may not be able to take this away from her but what they have done to ease the pain and process for others is nothing short of amazing. They have created Hope Kits, which are teen care packages sent to homebound and hospitalized teens around the country. They are filled with teen focused toiletries, activities, a Hope Kit Journal, MHHA t-shirt, gift cards and more. They have connected families across the country with other families who have children with “hidden” illnesses so they have support, advice and a sense of community knowing they are not alone. Lives are being touched and changed all because one young girl decided her pain, though ever present, would not keep her down but would give her clear direction to be a difference maker. Very recently her younger brother was diagnosed with the same disease and it is fueling this family and others like them to find answers. As medical researchers work to provide those answers this family is working to be ever present in the lives of all those diagnosed with this or any other hidden illness. Each year they host a super fun Halloween themed “Boo Bash” with casino tables, dinner, silent and live auctions. They have an “Anti” prom for students who have been placed on homebound and can’t attend their school proms and like I stated earlier, they send Hope Kits all over the country. They can’t do this alone and we are presented with an opportunity to aid in changing lives! Can you help? Will you help? Are you willing to donate items to the silent or live auctions, purchase raffle tickets, attend the Boo Bash with us? You won’t be disappointed, it is a fun night for adults to dress up and raise money for an amazing cause. As mothers we don’t know what tomorrow holds for our kids and God forbid any of us have to walk in the shoes of these mothers who can’t take the pain away from their kids. Help me support Miks Hidden Heart Alliance, be part of making a difference. Contact me via PM and I will collect donations, get you tickets to the event and collect for raffle tickets.