An Undiagnosed Life

 Henry started Kindergarten! Can you believe it? I sure can't. Every parent knows it's coming, but with Henry I just never fully planned for it. I didn't know what that would look like. And I didn't know the best place for him. Thankfully, we're zoned for an amazing elementary school that has an incredible CDC (Comprehensive Development Classroom) program.  He's been home for the past 3 years. I've been able to see him all day everyday and play with him and snuggle him. So I was surprised when I didn't have as hard of a time for his first day! LOL It's always chaotic anyway for first day of school days, but we got to meet with the teachers and school nurse a few times throughout the summer and that made all the difference. They are absolutely AMAZING! I could not ask for better teachers. Seriously. They adore him and take such good care of him! The school in incredibly inclusive and has him participating in all the things.  He even started riding the...

  HI! It's me! We are all still alive and well!  I cannot believe it has been almost 3 years since I've posted!! Wow! Life really gets going and it does not stop. Hard to get back into the routine of writing and sometimes I get in ruts and it's hard to get down what I want to say. And a lot of the time it feels like groundhog day around here! SO, let me catch you up quickly on the last few years! 2022 was the only year Henry was not  in the hospital and had no major procedures! #winning  One year out of 5 ain't bad, right?? 😑 Let's get into it, shall we?  Henry is growing like crazy! He has his mamma's long legs and his hair; everyone is envious of! We can't go anywhere without someone commenting on his amazing hair! The best update is that we found a full-time nanny!! She's absolutely amazing and we are so incredibly lucky to have her. Henry loves her and we love her too!! Seriously, she's the best. I am never letting her leave! She helps with ever...

A very dear friend of mine, that I've known since birth, sent me this a couple months ago and it hit home. We don't talk often or are able to see each other as much as I would like, but even though we are hundreds of miles apart, I know she is still there. It reminded me that even though people may not understand our situation fully, they are still supportive in any way they can and sometimes just knowing that is enough. Thank you, Kelly!  So you all you special needs mama's out there, whatever that looks like, this is for you :) -------------------------------------------------------------------------------------------------------- Dear special needs mom, I want you to know that I see you. I see you running your child to therapy when your friends are running their kids to Little League. I see you slipping out the of conversation when your friends are all chiming in about milestones and test grades. I see you juggling appointments and meetings, always making sure you do the...

 Dear Henry, Today you turn TWO! It has been a rollercoaster ride with more twists and turns than I ever thought possible. You can absolutely melt me with a smile, laugh, and a snuggle! Most days are a battle though. I can't sugar coat it nor am I going to try. I love you with every part of my being and I am doing everything I can to help you thrive. To help you communicate. To help make sure you know that I will be there every day. Forever. To know that regardless of the rough times we've had over the last couple of years, I can't imagine life without you now.  As hard as it is some days, I know that I was meant to be your mom. The reasoning behind it I am still trying to figure out, but I know you were meant to be mine and I will work every day to make sure you are loved and given every opportunity to thrive!  We joke that you have the most expensive hair in the house and let me tell you! We ain't wrong. We have put so much into trying to help you develop, it almost m...

It’s been a minute since I’ve posted or given any real update. Y'all, some days it is pure survival mode. And we are trying to find in-home care for Henry, on top of therapies, appts, jobs, other kids. Life! Lol I’m spent.  Getting through the unknowns of Henry is such a struggle. It's taken a long time to know what makes him smile and even still, it doesn't always work. It's taken me months to begin to understand his cries and what they mean. It is his only way of communication still. There are no words, no pointing, no grabbing, no showing, no nothing. It's literally like having a newborn still. I say it often because it is the easiest way to describe Henry.  He cannot communicate, he cannot hold his head up, he can't even see well enough or at all, to look or point at something. You'll hear most moms say they wish that newborn stage could last forever and while that time is amazing and special and the snugs are legit and you're just in this euphoria.....

Since the day Henry was born, we have had such an outpour of love and support. COVID kept family out of the hospital during his birth and away in general because of the unknown of this virus. Then we find out our son had some serious issues and only one parent can be in the NICU. Let me just say that postpartum help is non existent. I know the baby is what is most important, but the second they are born, the mom's don't matter anymore and that is a hard journey to be on. As a first time mom, hormones all over the place, having to be alone, not knowing anything, having to make decisions and hear things that are terrifying, it blows my mind looking back that no-one really had any concern for how I was handling the news.  How I was healing, the fear, the anxiety, the questions. I had doctors telling me everyday that something was wrong with my son in such a 'chill' fashion that as I remember it, I don't know how I survived it without breaking down every single day.  Bu...