That’s right, my little miracle girl will be 3 next week! And truly I cannot believe it. I know all parents say that; I know all parents feel the shock of how fast time goes when it comes to watching their children grow; but birthdays hit different for parents in the medical world. 3 years ago I was thrilled to become a mom, the only thing I’ve ever wanted to be, and dreamed of all the things I would do with my little girl. But life didn’t go as planned. Instead of celebrating Madison’s first monthly milestone at home,...
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...
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...
Making Memories
When you have a special needs child, most of your time revolves around therapies, doctor appointments, phone calls, specialists, and pharmacy runs. It can be quite draining and unfortunately leaves so little time to actually just BE with your child and enjoy them. It’s super important to constantly stimulate and work with your child when they need that for their development, but it’s also equally as important to give yourself “normal” moments to play and snuggle and relax with them too. There’s even an extra sense of that hustle and bustle during the holidays, but enjoying the season and...