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...
2018 in Review
I’ve been racking my brain trying to determine how to write this post. How to reflect on a year that has in all honesty, been incredibly hard on our family. How to really sort all of the bad from good and heartbreak from hope. I want to start the new year on a good note, which is hard to do when the end of this year has been particularly painful for us. So I’m gonna start with the not so great moments in the hopes that if I save the better moments for the end, those will be what...
Holiday Gift Guide
Dear Santa, What do you get a child with special needs? A child that might be immobile, have vision or hearing issues, epilepsy, developmental delays, and physical hardships? The answer is not a one size fits all, and can be equally as hard for parents to think of things to engage their child, as it is for friends and family members who know even less about what that child may really need. So in the spirit of the holidays, I’ve put together a list of some items that might work for the special needs child in your life! Although...
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...
Thankful in all Circumstances
“I don’t want to carry gratitude in seasons. I want to carry it in my bones. I want it to rest on my tongue like it is a language that I never stop speaking.” Happy Thanksgiving! I saw this quote the other night and it really resonated with me. Yes, Thanksgiving is a wonderful time to celebrate all of the blessings in your life, and yes we all know we are of course just as thankful throughout the remainder of the year, but do we really focus on that gratitude outside of the holiday season? A lot of us...
The Backiel’s in Boca!
“Parents don’t really go on vacation. They just take care of their kids in a different city.” YUP. Ain’t that the truth? But, taking care of Madison in the warmth of Florida was a hell of a nice change lol! Last week the three of us ventured out for our first family vacation and first time flying with our queen! John and I were nervous wrecks about it. We went back and forth about whether or not to actually go for months. Madison is just so complex it’s scary to break out of our comfort zone with her, but...
Madison vs. the EEG
So I know I owe you guys all the details of our first family vayk, & I promise I’ll get to that, but in true Madison fashion this week has thrown us another unexpected curveball! Yesterday Maddie and I were excited to get back into our normal routine after returning home from vacation over the weekend. Before our day really began I touch based with her neuro team to update them on the status of the ketogenic diet process and to share some updates on her current seizure activity. When we met with the neurologist at CHOP on Halloween...
Traveling with a Special Needs Child
Welp! We just completed our first trip that included air travel with Maddie girl! John and I debated cancelling this trip many times. Would the stress of traveling with Madison actually outweigh the point of a “relaxing” vacation? We were nervous my friends. VERY nervous. But it went fine! While I will divulge all of the details of our first family vacation in another post (as it was not without some bumps in the road), I wanted to share some travel tips when flying or going a long distance with a child, especially a special needs one! So here...