I turned 43 on Thursday, and there was no place I’d rather be than with our family at our State Capitol speaking to legislators about the urgent need for specific home and community based supports. I’ve written about this topic before, and my passion to awaken understanding by helping others become empathetically aware of children and adults with disabilities is fierce. Dan and I both believe in sharing our lives on YouTube, Facebook, Instagram, etc to show what it’s like to care for kids like Hudysn and Damek. It’s not always easy to get everyone packed up, looking nice and drive to city ..read more

I’m a passionate advocate for Hudsyn….many of you know that from seeing my posts on our various social media accounts. I’m a member of the State Developmental Disabilities Council. I volunteer on the Family Advisory Board for Children’s Mercy Hospital. I’m an active member of the Children’s Mercy Beacon Clinic Patient & Family Advisory Council. Formerly, I participated as a family member on the Kansas Department of Health & Education’s Special Needs Healthcare Services Family Advisory Council. If it’s a cause that allows families to be better supported when they have a child with spe ..read more

Last week, I wrote a post about our son’s recent diagnoses of moderate ADHD and mild (Level 1) autism. I also talked about how we hadn’t told him of his new “labels.” It still stings a bit to discuss this, even though I know he’ll be a GREAT human. It’s always challenging to hear a new diagnosis, no matter how mild or invisible to others. Shortly after publishing that post, I received several texts and emails of love and support from family, friends and clients. Those meant the world, and helped ease the overwhelm of what we’re now managing for Damek’s treatment and supports. A friend of min ..read more

It’s not like we weren’t aware of Damek’s challenges early in his life. The speech delays at three years old, the hyperactivity and constant need to move and interrupt conversations, the inability to maintain a meaningful conversation in first grade were all chalked up to “he’s just a little boy with a lot of energy…it will all work itself out.” Until it didn’t.  This post is incredibly difficult to write. And, it’s not because we don’t want to be honest with those around us about Damek’s recent diagnoses. It’s because we haven’t communicated it to him yet, and I’m not exactly sure h ..read more

Earlier this year, Hudsyn was selected to be a 2021 Ambassador for Children’s Mercy during their Dream Big Day campaign. This meant she received a dedicated photoshoot, interview and became featured in the fundraiser’s marketing all over the city and online!  Dream Big Day is a family-friendly walk, festival and celebration to rally our community around Children’s Mercy and raise funds to provide answers, hope and care to patients and families. Hudsyn chose to raise funds specifically for the Beacon Clinic which is her primary care and medical home within Children’s Mercy. The Beacon ..read more

First and foremost, I am NOT an attorney. However, I work with hundreds of them across the country. And, one of the most popular questions I get from families when we start their special needs life planning process is “How do I know which estate planning attorney is right for our family?” This is an excellent question, because (much like doctors) not all attorneys are created equal when it comes to special needs planning. Just because they’re an estate planning attorney in general does NOT mean they are qualified to do this type of work for you and your family. You’ll definitely want to do a ..read more

We quickly learned after Hudsyn was born that this journey we were on was going to become expensive. I’m not talking about medical expenses, necessarily, although we were (and are) fortunate that Hudsyn has both primary & secondary medical insurance so most of her out of pocket expenses are covered. No, I’m talking about alllll the extra stuff, like: Special Tomato Chair, Stander, adaptive stroller (and any other adaptive equipment she needs to live and exist safely in and around our home) = $300-$1,100 Wheechair Accessible Van = $35,000-$90,000 Wheelchair Ramp into our home = $140-$400 S ..read more

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