If you only knew…
The amount of stress, worry, fear, happiness and love that come with riding the special needs/medically complex rollercoaster ride we call life.
Category: Special Needs
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When it comes to taking sides in special needs parenting, the struggle is real.
What do you do when your heart is split, divided between two places?
Rare disease day, February 28th, is a day to recognize those affected by a rare disease/disorder. In the USA, more than an estimated 25 million people are living with a rare disease. There are about 7000 different rare disease/disorders worldwide.
To the “special” parents trying to keep it together because you don’t have time to fall apart…
Tonight, as I sit in this cold hospital room. As I sit and dwell on what is our reality…a part of my personal hell
As a special needs parent of a medically complex little girl I don’t get vacations….or at least I can’t remember the last time I had one.
Sometimes as adults, we have so much to say to our young ones, only they can’t always understand
Most everyone has heard of Childhood Cancer, but most people have never heard of Chiari Malformation. For our family both are very real.
born rare, a limited edition. Her diagnosis was Lateral Meningocele Syndrome (LMS). On February 9, 2018, she went from limited addition to one-of-a-kind with childhood cancer. Her new diagnosis, Acute Lymphoblastic Leukemia