1). Don’t ever wear WHITE clothes. Just don’t. Even though I am out of the sticky-gooey-small-fingers-all-over-me-stage, I should have known better. It’s the law of motherhood. Either they spill or I spill, just simply cause I have little people nearby. Plus if all seats are taken and you are in need of sitting SOMEWHERE, ANYWHERE, you just can’t, in white shorts, that Continue Reading
When Compassion Collides
That breaking moment. With the ugly crying. In front of your children. I was sitting at the computer trying to complete some work tasks in order to get to Family Movie Time. The kids were sitting on the couch in anticipation. I was anticipating the down time with them. Actually just sitting, being, snuggling in even a bit. But then... Ryan was going over his summer calendar of dates Continue Reading
On Eating Whatever & Whenever
We just complete a FIRST in the Patay Family. We had our very First Family Vacation Without Ryan. Without PWS. Without a schedule. Without a food schedule. Without 1000 questions per day. Without "what's next ?" and "what if...?" and all his bless-ed anxiety. And it was weird and surreal and calmer and easier, and yet not having him with us was a little palpable. We were Continue Reading
The 10 Things NOT to Say to a Parent of a Child with Prader-Willi syndrome
We (special needs parents) have all been annoyed, hurt, or angered by someone’s comments to us about our child. It’s usually someone well-meaning, and just absolutely unaware of Prader-Willi syndrome, or what it’s like to have a disabled child. We cannot expect others to understand or to know what to say or not to say. We must give them some grace. However, with that being said, I thought I would Continue Reading
The Burn
Inhaler of newborn smells I’m going to burn up this year. My favorite Equinox instructor (and my friend), Rebecca, always tells us, when we are dying in her hard-core fitness classes, that the burn means that change is happening in our bodies. We want that burn. We need that burn. Even if we are screaming and whining like little girls on the inside. She always reminds us we can do it and Continue Reading
A Raw and Honest Love Letter
Dear Sweet Mama, You have been given an incredible, amazing, and heartbreaking gift. You have been given a child with “special needs.” The needs could range from severe allergies to severe handicaps and/or anything in between. Not that there is a spectrum and your story is worse than another’s mom’s story. Or her story is worse than your story. You just each have a story. And a journey that Continue Reading