Saturday marked the 2 year anniversary since Jillian was diagnosed with Cerebral Palsy. Those first few days were a blur. Focusing mostly on survival and knowledge. I would stay up super late (like 3am) to research on how I could “fix” this problem. Oh poor naive me. There is no “fix”. We just have to…
Spina Bifida Awareness Month
Every day in the United States, an average of 8 births are affected by Spina Bifida or a similar birth defect of the brain and spine. Spina Bifida remains the most commonly occurring complex birth defect in this country. The root cause of Spina Bifida is unknown and the effects for each person are different….
A Day in the Life…
(this is the truth, nothing but the truth…don’t be too jealous!) Saturday… 0430: “Momma! Momma! Awe ooo sweeping?” 0432: “MOMMMMMMMMA!” 0433: I glance at my husband to see if he’s awake. I contemplate kicking him or screaming bloody murder, but choose to whisper softly to my little darling that he should close his eyes and…
Our Children Will Grow Up: What Happens When A Vulnerable Population Becomes Even More Vulnerable?
At the end of our lives, we again become vulnerable. Charged to those with hands we hope are gentle, hearts we hope are warm. Family we wish…if all goes well. But what about our children? So many times we are focused on the now, as we should be, as we need to be…with the future…
Strength in Numbers
It all started a little over two and a half years ago. We entered the room with no small amount of skepticism. We were embarking on “yet another behavior modification program” in a long string of attempts to bring our daughter’s aggressive defiant behavior into some semblance of appropriate. I, personally, was at my wit’s…
Special Exposure Wednesday – Julianna
Meet Princess Julianna, or more accurately Pixie Princess Julianna. Don’t let the angelic face fool you, the girl can hold her own against two brothers. Get to know her in her mom’s own words. Share what you managed to capture this week. Please spread the comment love around. *This is part of a month long…
Waiting…. Waiting…. Waiting….
I don’t like waiting. Which is kind of ironic because I’m a mom, and a mom of multiple developmentally delayed kids. For years we’ve been waiting with one of our daughters – waiting for meds to kick in, for her moods to stabilize, for her mind to find balance. At our meeting with the counselor…
A Dream Is A Wish, Your Heart Makes
As parents, we all dream about what our children’s future will be like. Will they be happy? Will they get married? Will they make me a grandparent? I’m a dreamer, I always have been and I always will be. Lately, I’ve been having a lot of uncertainty about how Jillian will grow up. I’m not…
Friday Frustrations…
You know, I hate to be a whiner. It’s just not part of my chemical make up. BUT, sometimes, by the time I get drug through the week by my hair, Friday is just the most frustrating day of the week! I feel like I’ve spent all week fighting with or for something, I get…
It’s Not a Race
I think we are about to hit an interesting phase of our family. The younger apparently neurotypical siblings are about to reach certain developmental milestones before their big sister does. Little boy has just about mastered his daytime toilet learning. One of our first signs that he was physically ready for this achievement was that…