Don’t Forget About Us

For the past 2+ months most of the world has gotten a small taste of what it’s like to be a medically complex family. Everyone has felt the fear of germs, stayed in the confines of their home when they’d rather be out and about, been considerate of those with underlying health issues, and began being more conscious about the spread of germs. But now that the world is slowly beginning to open up again, will all of you remember this? It is my fear and the fear of most special needs families that you won’t. I’ve seen so...

Just a Cold

I know you’ve heard it a million times. I know you’re probably tired of hearing it; the many moms pleading with you to stay home when you’re sick. But believe it or not this very simple concept seems to fall on deaf ears over and over again. For some reason people are not understanding why they need to stay home for a measly cold. They continue to claim they’re “fine.” Their child with the runny nose and slight cough, is “fine.” It’s “nothing.” It’s “just a cold.” Well I’m here to tell you it’s NEVER just a cold. A...

Why I Love Social Media

I love social media. There, I said it. Yes, it can be full of politics, and petty drama, and rude comments, and insensitive or uneducated remarks. And yes, it can be mindless and addicting in an unproductive but super fun way. (You can bet my hubby & I send each other funny memes while we sit in the same room lol). But it can also be incredibly connecting and wonderful on a much higher level. It can tether us to people and organizations that we may never have known. And for a special needs mama like me, those sort...

Always Worth It

If you follow me on Instagram then you know I spent last week in Maine for a little fall family getaway! We had this trip planned for months, and almost cancelled it countless times because so many things have been popping up, but ultimately decided we deserved some time away together. While we were away I decided I wanted to share a blog post about the importance of making memories when you have a medically complex child, but as our trip ended with a tough day and then a TON of traffic leading to a huge seizure filled meltdown...

So Long Sweet Summer – An Update on Maddie Claire

Fall officially starts next week, and for a girl who has always been all about summer, I’m strangely really looking forward to some cooler temps and a slower pace around here. Once cold and flu season is upon us, I typically schedule less appointments for Madison and don’t take her out quite as much since she’s so high risk. This summer has been pretty overwhelming, sometimes in a good way, sometimes not. But I’ve realized I haven’t shared a real update on Miss M in a while since we’ve been so busy! And what better way than to do...

Hospital Hell

It’s hard to believe an entire week has already come and gone. One minute we were in Rhode Island on a mini vacation, and the next we’re in the hospital. I lose all sense of time when we’re in the hospital with Madison. Sitting in the same chair EVERY SINGLE DAY is hard. Sleeping in a windowsill is hard. Trying to comfort your child while they’re hooked up to multiple machines is hard. It’s just all around hard, and the days sort of just blur together. The first few days of a hospital admittance tend to be the scariest...

Two Years!

Well, my babygirl is about to turn TWO! TWO! I just can’t believe it. Her birthday comes with such a whirlwind of emotions. When you see your infant almost lose their life, when you live in a hospital room, when you’re forced as brand new parents to have “the” talk about what could happen when you pull a breathing tube, you become faced with the reality that your baby may not ever celebrate a birthday. And yet, here we are, two very hard years later, celebrating all of the strength, perseverance, and love Maddie girl has shown us all...

OBX 2019

Vacationing with a special needs child can really be hit or miss. Madison’s stability varies and unfortunately when you book a trip there’s no way to know if she’ll be having a good week or a bad one by the time that trip rolls around. We traveled to Florida in November and while it was relaxing to soak up the warm weather, Madison wound up having awful nights almost everyday. She barely slept, had seizures, and seemed uncomfortable a lot during the trip, which made things hard for John and I. We booked a beach house in OBX knowing...

The Truth About Mother’s Day

Mother’s Day is just around the corner. A day to celebrate the strength and love of all the moms and mom figures in our life. A day that is truly special for many. But what about for those that have lost their mother? Those estranged from their mothers? Those longing to be a mother? And those, like me, who’s journey into motherhood hasn’t been like what they had hoped or dreamed of. For us, this day can stir up a wide range of emotions and be extremely difficult. Last year was my first Mother’s Day with Madison, and it...

World Meningitis Day

Today is World Meningitis Day. A day to help spread awareness about a disease that has stolen so much from our family, so much from my little girl. Madison was born perfectly healthy, but everything changed just 11 days later. She didn’t wake to eat, her skin looked grey, her eyes became empty-as if her soul was sucked right out of her, she spit up her last meal, and began grunting when she breathed. Within moments we knew something was terribly wrong. We had no idea just how wrong. We had no idea our entire lives and every dream...