Our Life Forever Changed

Hi! Kelly here. Wife. Mama. Jersey Girl.

Where do I begin? How do I kick this thing off? I thought of doing some research on starting a blog and what your first blog post should be about so that I could start this new adventure off right. You see, I’m the kind of person that researches EVERYTHING before doing ANYTHING (like never been to a restaurant without having looked up the menu first kind of person), but if there’s one thing I learned this past year it’s that no matter how much I research and plan something, at the end of the day God has his own plan for me, so might as well just go with the flow and hope for the best.

October 29, 2016 I found out I was going to be a mother. It was hands down the most exciting wonderful moment of my life. Growing up all I ever did was play house. All I ever wanted to be was a mother. It is the one thing that I have never changed my mind about, never questioned; the one thing I knew I wanted without a shadow of a doubt. I didn’t dream so much about meeting the perfect guy (which I did), or having a perfect wedding (which we did); but having kids was my future and I’ve always known that.

I was blessed with an incredibly easy pregnancy. I’m talking zero nausea, zero aches and pains, zero swelling, slept like a baby up until the day I went into labor. I have never felt more beautiful, confident, or healthy as I did when I was pregnant. Not to brag, but even my labor was smooth and easy. I DO NOT have a high tolerance for pain, but for some reason when it came down to labor, it just came naturally to me. July 9, 2017 I got to the hospital expecting them to send me home and was shocked when they told me I was 8cm dilated. No epidural, no complications, and after 2.5 hours of pushing, I had my perfect, beautiful, healthy, Madison Claire in my arms. The amount of happiness my husband John and I felt was insurmountable. She was here. We had our family. Our prayers had been answered. We couldn’t wait to get home and start this new chapter.

Bringing Madison home was wonderful, exciting, & exhausting, as any parent can tell you. Madison’s first days were pretty typical; visits from family & friends, eat, sleep, poop, repeat. Everything was going smoothly and John and I were settling into our new routine as a family of three (four if you include our dog Lincoln!). She was the cutest little peanut I had ever laid eyes on and we couldn’t wait to watch her discover this big world. We were in pure bliss. We had no idea that bliss would only last 10 days. 10 days is all we would get with our healthy new baby girl. On day 11 our entire world was turned upside down and would never be the same. All our hopes, dreams, and plans would be demolished and a future full of fear and the unknown would become our new reality. On July 20^th Madison was found positive for GBS Meningitis. My heart completely sank. I felt sick to my stomach. We went from the best days of our lives to the worst in the blink of an eye. To this day we cannot understand how or why this happened to Madison. For the next month we watched our tiny 6 lb 6 oz baby girl literally fight for her life. I’ve never cried more in my life. I’ve never prayed more in my life. Our entire future was in God’s hands. But after a little over 2 months in the hospital, we finally brought our little miracle girl home.

Madison was a survivor. Her little body fought so hard and won. She was however left with numerous life long complications (which I’ll get into another day) as a result of a now severe brain injury. That’s something hard to wrap your head around. To have had a perfect pregnancy, labor, and full term healthy baby be stolen from you after just 10 days for reasons we’ll never know. To accept the fact that our sweet girl’s brain is severely damaged. And the thing with brain injuries is no one will tell you what to expect, because every brain is different, every brain injury is different, and at the end of the day a child’s brain is miraculous and full of plasticity; capable of rewiring itself. While we hold onto the hope that her brain will rewire itself, and that God will help her develop to her fullest potential, we really don’t know what she will or won’t be able to do in her life. The fear of the unknown is something hard to live with day in and day out, but it is our new normal. Everyday is both scary and a blessing.

To say it’s been a hard year is an understatement and when people ask me how she’s doing, there is no easy answer. I always say “she’s okay,” because the fact of the matter is she’s ALIVE, so to us she is her version of “okay.” And truth be told as hard as our days are, and as painful as it is to see our baby struggle every day, there are so many other babies & parents whose days are even harder. Which brings me to the purpose of this blog and first very, very, very, long post. When we were in the hospital, and with each diagnosis to come in her first year of life, I of course, googled the shit out of it. Remember when I said I research everything? All I found myself doing was research. Side effects, long term outcomes, the good, the bad, everything. The one thing that helped me cope immensely was finding blogs, support groups, and Instagram journeys of other children in a similar boat. It was eye opening to realize how many children suffer from brain injuries, rare diseases, epilepsy, and more. Of course we all know there are sick and disabled children in the world, but until you become a part of that family, you really don’t comprehend just how many. It’s truly heartbreaking. But following these stories & seeing the strength these children & their parents possess was the kind of inspiration and hope we needed to march on. And so it got me thinking, that even though I will never understand why this was God’s plan for Madison or us or our families, that perhaps Madison’s journey can provide hope to someone else one day. And the only way it can do that, is if we share it. I am truly convinced she survived hell because she is meant for more, she will do more, she will surprise everyone no matter how long or hard it takes to get there, and she will continue to be our miracle girl. I wouldn’t wish meningitis or any of the rare & complex issues Madison has been left with on my worst enemy, but sadly I know she won’t be the last innocent child to suffer. And so, I hope that down the road when another mama is in my shoes, clutching to her faith & googling for stories of hope as she wonders what her life might become, she finds this journey, our journey with Miracle Maddie, and it gives her some relief that she isn’t alone. And if this blog doesn’t become anything, that’s okay to, because from what I’ve heard its good to have an outlet to get your thoughts together, especially when faced with difficult life changing circumstances.

So that’s the jist of our story and purpose for this blog. Apologies for the length of this “post” (I bet if I had researched what your first post should be about before writing this it would definitely had said to keep it short & sweet or something..oops!). I know I won’t be sharing every day, because like any mom (special needs or not), life is just too busy for that! In fact, I was able to write this lengthy little guy because after a year of being hospital free (aside from routine EEGs), we recently landed back in the hospital (in the same exact room where she survived meningitis (hello PTSD!)), because Maddie has rhinovirus. She is stable & we’re essentially just waiting for it to run its course, so I thought I would put our time to good use & finally get this moving.

So thanks for reading! To our family & friends: thanks for your love, support, and prayer this past year. Most of you probably don’t even know the ins and outs of Madison’s injury, so John & I hope this will be a place for us to keep you updated on her progress. To the special needs moms and dads who find us: hang in there! You will breakdown. You will feel defeated. You will constantly wonder why and what if. But when you feel like you can’t do this, that you’re not strong enough (as I do quite often), just remember you CAN do it. Remember you ARE doing it and that you’re not alone. And to everyone else: I hope Madison’s story inspires you anyway! I hope it helps bring awareness to special needs children and the many rare injuries numerous children suffer.

Xo,

Kelly