By Mika Hartman
Life is life. Some seem to walk around on “easy street”, while others struggle with everything. Some people celebrate 75 years of marriage, while others remarry more than once. Some of us are given a life we didn’t know we wanted, until it is ours. And many will never understand how lucky the ones selected for a Down syndrome journey really are.
Recently, I was asked by a super nice man, “How Downs is your kid?” This is clearly a lack of education on the subject. Someone who assumes that there are levels of Down syndrome is someone who hasn’t been around families like mine. You are either born with Down syndrome or you’re not. Autism provides levels based on testing and results. However, Down syndrome is solely based on the extra 21st chromosome that can be detected in utero or after birth. The amazing thing about people with this extra chromosome is that like every person ever born, they have two parents with unique genetic traits. Hudson is still half me and half CJ. Hudson looks just like my other two children at the age he is now, with a few differences because he was born with Down syndrome and they weren’t. Yes, he has delays. Yes, sometimes communicating is more difficult. Yes, Hudson has a different journey than my other two children. Different is beautiful and it is universal.
“What sets you apart can sometimes feel like a burden and it’s not. And a lot of the time, it's what makes you great.” - Emma Stone
Hudson is not and never will be a burden. I pray he never feels like a burden. Only society can plant those seeds with questions like above. If families like mine are carrying the weight of the differences, society could help with the heaviness. Its not Hudson that makes it heavy, it is the constant need for daunting paperwork, overseeing that my sons basic human rights are being met outside of our home, it is having to be five steps ahead of those looking to knock you ten steps back and its always having to prove the disability, even when no diagnosis have changed.
Even when the load feels heaviest, I am advocating and I am educating myself and others. I want Mississippi and the world to be better, kinder, more understanding and, mostly, more human to those who deserve our kindness and our help. Sitting here at 47, I know my voice matters. I know needed change can happen, even from stay at home mom with something important to say. You can’t wait on the world, your voice matters now.
This is the letter I sent to Lieutenant Governor Hosemann's Family Committee last year:
To Whom It May Concern: Thank you for allowing me to provide comments today on such an important issue. My name is Mika Hartman and I reside in Pass Christian, Mississippi. I am a mom to an amazing, sweet, fun loving boy named Hudson. Upon testing, we were told that Hudson would likely be born with Down syndrome. Throughout his short life so far, I’ve noticed several obstacles we’ve had to face to ensure my son is getting the quality of life he needs and deserves. After my sons open heart surgery, we moved back to Mississippi for his best chance at life. Upon my return, I was told that I should have never moved here. That had I called before deciding to move back to Mississippi (now with my child with “special needs”), I would have been told this is NOT a place to bring him. We are a military family, law abiding citizens, taxpayers, hard workers and good people…. And because we have a child with Down syndrome, we shouldn’t reside here? That statement truly broke my heart. I am here today to address some of the ways we can improve the life of individuals with disabilities and Mississippi can continue to the place my son and my family can call home.
Any person born or later diagnosed with a disability brings purpose and value to our communities. Our laws and our budgets should reflect all citizens. We have a real responsibility to all Mississippians to rise to the challenge of ensuring equitable care for all citizens. We must improve our education system, healthcare and access to it, inclusion of individuals with disabilities in the community, and training for many professionals (including doctors, law enforcement agents, teachers and more) across the state. For example, there is room for improvement in our restriction and seclusion policy. It states that training for children with disabilities is part of the current plan, and we have no accountability that this training happens or that it is consistent within our state. Currently, individuals with disabilities within the state can make less than the minimum wage, often called subminimum wages. This practice needs to end. As of 2020, there are 2,527 individuals with intellectual and developmental disabilities waiting to receive critical Home and Community Based Services that they need. We must allocate funding towards HCBS services for individuals with intellectual and developmental disabilities.
Another change that should be implemented is removing the “r” word from our state documents and medical documents, known typically as mental retardation. The way to treat a person with love and dignity is to ensure that we view one another as a person first. My son is not a burden to my family, he is a perfect gift; nor is he a burden to society or to the state. It is my job to see that he gets everything he needs, but it is your job to ensure that the availability of what he needs is within reach. If you ever walked a day in the shoes of a momma advocate, you would understand better the challenges we face. A world that pities us instead of envying us; they have it all wrong. We are willing to teach and we invite you to learn with us.
I am working to continue to create change in our state legislature. From police training to ways, to protect nonverbal children better, I hope to be the change in the world my son deserves. Everything I pursue for change is done with love for this life God gave me. Bipartisan changes reflect all the citizens and provide needed policies that benefit all with disabilities. We must work together to get Mississippi on the right track forward. We can do this by protecting Mississippi’s families, removing burdens and barriers, and loving thy neighbors. The weight of the world can be found on the shoulders of a special needs momma; and instead of lightening the load, we often find each stone to be heavier. We need you all to pass policies that help better all our futures, ones that will help move Mississippi forward.
Thank you for your consideration.
Whether you have the ability to speak up for those, especially with no voice; or you have a concern for what you’ve seen or experienced: be bold, be loud, help lessen the load when you can. Worry about the unnecessary questions and burdens you might be adding to someones day or life. Worry about the changes that need to be made. Worry about what world you want your kids to grow up in. I have the same concerns for all my children; however, the birth of Hudson has made me stronger and bolder. I feel this. I was created to carry it; but, not everyone can carry it as easily. Worry about them. I do. Don’t worry about Hudson, I have him; he’s good…. He’s actually EXTRA good.
I am hosting a Buddy Cruise Charity Golf Tournament on May 19th in Pass Christian, Ms at The Oaks Golf Club. This tournament is going to be a fun filled day. From prizes, trophies, a chance at a hole-in-one prize, silent auction, raffle prizes and more, we are certain to raise awareness and show the love for and of our Down syndrome community. I will be raising money for Buddy Cruise and sending a local family on the 2023 Buddy Cruise on Royal Caribbean. Even our lunch is being catered by our celebrity entrepreneur, Austin Underwood with Austin’s Underdawgs. Additionally, The Mustard Seed will be here with a pop-up pottery store. Many friends with Down syndrome are participating in our day, from Florida to California, we plan to showcase the “I Can” in our Down syndrome family. To join us, sponsor or donate, please contact me (Mika Hartman): firstname.lastname@example.org or call at 719-822-6497. Or you can register @https://buddycruise.org/Golf/Tournament/14
Don’t miss out on this incredible day of EXTRA good stuff!
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