Author - Julianne Neely
If there is one thing I would change about my body it would be how people view it. Because they don't just view it, they feel the need to comment about it. In front of my children.
Stop. Stop. Stop. Stop talking about bodies, about my body.
"Oh my god, you're so skinny!" isn't praise or a helpful observation. It's annoying, unnecessary and not something I want my children to hear on repeat.
I actually own a few mirrors. I've seen my reflection and I don't need every other stra...Posted on September 19, 2016 at 10:14 AM
Photo credit: Evelyn/Flickr
While many NICU stays come as a surprise, sometimes parents are told to anticipate their child needing specialized care in the Neonatal Intensive Care Unit (NICU) in advance. Leaving the hospital without your baby is never easy, whether you had the opportunity to emotionally prepare for it or not.
For parents anticipating this very stressful and challenging time, l have compiled a list of resources to reduce stress, increase bonding and make the...Posted on July 25, 2016 at 9:28 AM
Photo credit: Julianne Neely
You fear viruses, kidnapping, accidents, and other parenting woes. I fear the day my sweet baby boy becomes a black man.
I fear the world that doesn't value his life. The world that lives in denial, claiming all lives matter to them.
When I think about the day my son will drive a car and be stopped by the police, I shudder in fear. I wonder, How I can protect him, a camera in his car? An alert that will dial me immediately and send me his loca...Posted on July 11, 2016 at 9:14 AM
Sometimes I want a break from being ALL. THE. THINGS.
The home nurse, the fierce advocate, the educator, the researcher of everything related to X medical condition, the "don't you dare come in our hospital room ever again and I want to talk to your supervisor NOW" quality control specialist, the accountant, the medical supply manager, the parent/child visit supervisor, the guy at the bottom of the totem pole who gives all the updates to the DCFS people who can't seem to upd...Posted on May 16, 2016 at 8:07 AM
Photo credit: Julianne Neely
One thing I know with absolute certainty is that we wouldn't have been able to advocate as hard and effectively as we have for our children without our community. I also know that our kids wouldn't be as strong and stable as they are today without the amazing friends and family who have gone above and beyond to keep us, their parents, strong.
Everyone knows someone with a special-needs child and I guarantee that even if they haven't asked or e...Posted on April 06, 2016 at 10:50 AM
Photo credit: Courtesy of Julianne Neely
There have been a few strategies I have learned along the way of being a special needs parent that have been so helpful for our family. One such strategy is having a hospital “go” bag. Already having a hospital bag packed has been a major relief at 2am when we are leaving for the ER, because we don’t have to run around scrambling for essentials for what may be a few days in the hospital. We keep our hospital bag in the car at all times—we d...Posted on March 07, 2016 at 2:16 PM
Photo credit: Flickr/Pink Sherbet Photography
I recently turned down an invitation for my two-year-old daughter and I to join a fun outing, and the hostess was mad. "Aren't you ever going to let her have any fun?" she said. "How is she supposed to learn social skills?"
Yeah, we miss out on a lot of fun things. Yes, I doubt myself and fear I am overreacting. But before you judge me for keeping my child in a bubble, step into my shoes for a moment.
It's Respiratory Syncyti...
"They are so lucky to have you."
This is something my family hears regularly from strangers and friends alike. Every time I hear it my heart sinks, because I know the person saying it has the best possible intentions but, really, these babies are far from lucky and it misses the reality of their painful journey.
Every single child deserves a loving, supportive home. Luck should have nothing to do with it. But if it did, "lucky" would have been being able to stay with th...Posted on February 01, 2016 at 8:02 AM