So, why don't I "just" move? Moving for my family is not an option. Like many families that have medically complex children with special needs on top of it, we live on a single income. We have already given up more than most people could imagine. My husband and I sold our home and his truck so that we could move into my mother's home so that we can have help. My mother in turn, sold her home and is spending what could have been her sweet, quiet retirement after teaching for 30+ years and instead built a home for all of us to live in so that we could all help one another out. We wanted Abram to have that extended family that he so needed.
My mom sacrificed all the things she had looked forward to in her retirement so that we could give Abram a life that he deserves. My father and his wife help us out financially as well when we need it because living on a single-income and having to travel out-of-state multiple times a year to visit Abram's medical specialists and sub-specialists gets expensive. My husband uses all of his paid-vacation time sitting in hospitals and clinics and never takes a day off to just relax or go somewhere nice. We haven't had a vacation in 9 years - and even then it was a trip to the Dells. It was hardly a "vacation".
We rely on Medicaid to pay for most of Abram's services because even though we have Private Insurance through my husband's employer - it doesn't pay for much and it certainly does not cover all of the services he needs including his speech, occupational, physical, and feeding therapies.
It took us 3.5 years and 4 hospitals to get a diagnosis for our son and now that we FINALLY have a team of specialists and sub-specialists and therapists that are a good fit - we simply cannot give that up. Until you live a life of endless therapy and searching for the "right" medical team - you have no idea how hard it is to find a team that you trust. Our team consists of Neurologists, Sleep-Medicine Neurologists, Neurosurgeons, Endocrinology, Nephrology, Nutrition, Developmental Specialists, Occupational Therapy, Speech Therapy, Feeding Therapy, Physical Therapy and a specialized Pediatrician.
Once you finally have your inner circle, your team - you simply can't "Just move". I can't take my son away from my mom. I can't ask my husband to quit his job. We can't simply move to Colorado and live there on one-income if we are barely making it living in the lower level of my mother's house. Finding a medical professional is a hard task. Finding a team of them that you like, agree with and can find support in is basically a miracle.
So asking or telling someone in a position like ours is just cruel. I am one of the lucky ones. My son is doing well because a law was already in place when we needed it - because parents ahead of me fought hard to make it possible for my son to be well. To those mamas: I love you so much, I couldn't be prouder and I am honored to call you my friends. To the mamas and families that HAD to move: I love and respect you more than anything because I know what you had to give up.
I just keep hoping that the Iowa Legislature will "just" do the right thing and stay right here in the state where I grew up. Where my heart and my family is.