sotu
Last week four of our Little Lobbyists families were honored to attend the State of the Union, representing all of our families of kids with complex medical needs and disabilities. We asked them to share their experience with us. Walewska Watkins and her son Little Lobbyists Aire were guests of
loss
** CN: hospice care, loss, sibling loss, grief, death of child, description of child death ** February 3, 2020 I am sitting at the IUPUI campus Starbucks. Well, they don’t call it a Starbucks. They call it “Barnes & Noble Cafe” since it’s in the Barnes & Noble bookstore, but
wheel-chair
I’ve seen this meme on Facebook a few times. If you can’t see the graphic, it’s a man underwater, standing beside an empty wheelchair. The caption reads “The power of water. The most beautiful picture you’ll see today.” People share it because it feels inspirational that
friendship
I had taken my daughter Penny to the Metropolitan Museum of Art in New York City. After a morning of Penny marveling at the masterpieces, we stopped for lunch in the cafeteria. Penny has a rare neurological disorder called Aicardi Syndrome. She uses a wheelchair, has a g-tube, has intellectual
reflections
I wish I were a battery, so I could plug in and recharge. I posted this on Facebook today, and a kind friend responded, as one does, that humans recharge by unplugging. I said I didn't know about that. I do wish I could recharge by being plugged
reflections
I never thought I’d get to write this to you, and so I’m not sure quite what to say. You start kindergarten tomorrow, your first day of school, and in a life filled with so many firsts we never expected, this one looms large. It feels significant, heavier,
immigration
Reports by the New York Times, Huffington Post and Yahoo News, among a myriad of additional media outlets regarding the treatment and conditions in detention centers all over the southern border are chilling and infuriating. We’re learning that U.S. Border Patrol agents are confiscating children’s medication. They
the-aca
The spring of 2010, when the Affordable Care Act was signed into law, was preceded by a hard winter for my family. In February, two major snowstorms hit the DC area where we lived within one week, dropping thirty to fifty inches of snow. They called it Snowpocalypse. During the
autism
“The greatest tragedy that can befall a child with Autism is to be surrounded by adults who think it’s a tragedy”. ~ Ellen Notbohm Raising an Autistic child can change the very heart of who we are as parents, and as people. It’s a life that provides deep rewards,
reflections
The realization hit hard, like a punch to the gut. Almost as hard as the day I learned my son has Cystic Fibrosis, an incurable fatal illness. I’m nearly 39 years old, have always considered myself an ally to marginalized communities, and have loved all people of all varieties
diabetes
It's the eleven year anniversary of my diabetes diagnosis and the government still wants me dead! My brand of insulin costs $340 if I were to be uninsured. That's $0.34 a unit. A unit is ONE HUNDREDTH of a mL. If something seems wrong about
reflections
Medical parents will know exactly where I’m going the second I say the following, “January is coming.” January is easily the hardest month for any medically complex family. In this month it does not matter if we have employer sponsored insurance, private insurance, Medicare or Medicaid—we all are