My child is disabled. She’s only two years old, and she’s severely disabled. I can’t express into words how hard it is to say that sentence. When we had Madison’s first MRI done post meningitis and saw the damage that awful disease did to her brain, we knew then and there she would never live a normal life. It’s some of the worst news you can receive as a parent. The brand new baby you had prayed for your whole life; the baby that passed every test in the book during pregnancy; the baby that was born healthy; is...
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...
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...
Equipped for Development!
Finally, after months of me bugging all of Madison’s therapists about the subject, we officially got the process started in getting her some very much needed adaptive equipment! Madison has very low tone, and still can’t completely hold her head up on her own. She can’t sit, let alone stand, yet being in these positions is crucial to her bone and muscle development. So what do we do? We get her equipment that will provide her body the support it needs to sit and stand correctly! Last month we had an appointment with a physiatrist, which is a doctor...
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...
Engaging a Special Needs Child
Buying toys for most kids is easy and fun. What are they interested in? How old are they? What milestones have they met or are they close to meeting in which a particular toy might engage them further? While all valid questions, most of these don’t matter for Madison. Because she is so globally delayed, and her brain functions far differently, when it comes to buying toys for her, we need to be strategic. Each toy is an opportunity for therapy, a chance to build new neuron connections, and to ultimately help her reach her fullest potential. She doesn’t...