Parenting in my world is similar to that of some, but also very different from most. Raising multiple children with very different special health care challenges is a challenge within itself.
My world is very small and select. Meaning that I only feel comfortable and free when I’m within certain environments, with select people.
I think I speak for most other special needs parents, when I say, we are often misunderstood, sleep-deprived, full of compassion, overprotective, running on overdrive, and often found advocating for our children.
My life as a mom in my world, has consisted of many hospital stays, doctors appointments, sleepless nights, medication management, IEP & 504 meetings, therapy sessions for PT, OT, Speech, and counseling. None of these are what I envisioned my motherhood would be, however, it’s made my blinded eyes opened. It’s taken me down a path filled with unique experiences that I would not redo differently. It’s resulted in some of the most amazing stories of victory. It’s produced some of the most incredibly compassionate young people. And it’s given me a voice and purpose to inspire others. Last and most importantly, it has drawn me much closer to God than ever before.
I have a son with developmental delays who was born normal and healthy. His everyday life consists of the same routine. All the way from the food choices, to his choice of activities and tv shows.
I also have a son with bipolar disorder who graduated as an honor student and is currently attending a 4-year college. And I have a daughter who suffered from some mental health issues, and has juvenile myoclonic epilepsy but she is the most gifted, highly talented young artist and attended an art school. None of them fit the “stigmas” nor do they accept the “labels” that others attempt to put on them. And none of them have allowed their diagnoses or battles to stop them from moving forward in life. They each have very different journeys and yet they each share the same genetic makeup. Isn’t that something?!
What I would like others on the outside to know, is this. My children are just as human as the next person. They have a heart, brain, eyes, nose, limbs, and capabilities to share with the world just like anyone else. They also have flaws, shortcomings, emotions, behaviors and are still learning as they grow. My youngest might talk a little different, a little louder, walk with a limp, laugh when no one else is, rock back and forth while sitting, but he is who he is. And they are who they are.
In my small world of comfort, I have gotten to meet some of the most fun-loving, energetic, compassionate people. And some of them are nonverbal, deaf, blind, wheelchair bound, with obvious “visible disabilities”. And some of them have been through mental health battles which are considered “invisible disabilities”. ALL of which are NOT a contagious disease, dumb, stupid, unintelligible, without feelings, crazy or any of the other stigmas or labels that ignorant people choose to use.
These people’s lives have been touched, impacted, marked, changed, inflicted upon by a health care challenge that is beyond their own control. They are living very different lives just like you and me. They are all battling something every single day. Each one with a unique story to tell. Each with a very different journey and outcome. Each one deserves just as much respect, honor, love and compassion as anyone else who doesn’t have to live with any health challenges.
Some of us should take a moment and get to know the person instead of allowing stigmas and false representations to taint our insight, causing us to draw away from becoming better acquainted and informed of real life experiences.
End the stigmas. Stand with me against the negativity and harmful words and misrepresentation for mental health disorders and individuals with special health care challenges.
“Be the voice they don’t have” – Erika Brooks
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