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 20th 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

24 Comments

  1. John
    August 30, 2018

    Absolutely beautiful. Our girl is one tough cookie.

    Reply
  2. Erica Biesiada
    August 30, 2018

    I LOVE IT! And I couldn’t be more proud of you + jb + miracle Maddie! LOVE YOU GUYS!!!!!

    Reply
  3. Rachel
    August 30, 2018

    This is amazing. You are amazing. Keep writing !!!! You are a natural and an inspiration.

    Reply
  4. Charlene Florio
    August 30, 2018

    You are all so strong and it is an honor and pleasure to be a part of all of your lives. We love you 💖

    Reply
  5. Michelle Interdonato
    August 30, 2018

    Love that you’re starting this blog! Despite the fact that it made me cry, this is an incredibly well written first post. Love you, John, Madison, & Lincoln so very much. You all amaze me with your strength every day. XOXO <3

    Reply
  6. Jacyann Menta
    August 30, 2018

    I can’t even put into words how proud I am to know you and John and Maddie! You’re all an inspiration every day <3 love you guys! & amazing first post!!

    Reply
  7. Cheryl
    August 30, 2018

    Love this!! And I definitely agree it’s a great outlet to get your thoughts and feelings down! I will most definitely be following! You are such a strong woman Kelly! Don’t ever doubt yourself! ❤️

    Reply
  8. Rachael Gener
    August 30, 2018

    Oh, Woomie! This is beautiful, and you are a rockstar! Thank you for sharing. Sending lots of love to you and your family.

    Reply
  9. Jenjen
    August 30, 2018

    Kelly, you’re one super Mom and we’re SO proud of you and your courage ! You and John are amazing parents. Miracle Maddie is an inspiration to many. In sharing your journey as a family has and will continue to inspire many — not just those who go through what you go through but how we deal with life in general – our choices, our attitude.
    Love you ❤️

    Reply
  10. Janet Lee Kaufmann
    August 30, 2018

    Wonderful first blog. Just so you know you have prayer warriors down here in North Carolina. Have been praying for you all and little Madison before we knew she’d be little Madison. Prayers have continued following her birth. I have no doubt sharing your experience will help others who are going through a similar thing. That is one tough little girl, just like her namesake and she has so many angels watching over her, and you and your husband too. Hang in there!
    –Cousin Janet

    Reply
  11. Diane Hynes
    August 30, 2018

    Beautifully written. You and John are the parents Madison need and was blessed with.

    Reply
  12. Jenn
    August 30, 2018

    Beautifully written. She’s lucky to have you. I’ll continue to pray for you all everyday

    Reply
  13. Catie
    August 30, 2018

    Kelly,

    This is such a beautiful read. I understand so much of this yet, my heart still breaks for your sweet angel. Your family is strong and your beautiful angel is a wonderful and is strong!! Thank you for this amazing story beginning!

    Reply
  14. Renee
    August 30, 2018

    Absolutely beautiful what a gift you are to other parents going through the same thing or similar situation. NEVER give up Hope❤️🙏🏼

    May God Bless Madison, John, and you always.

    Reply
  15. Lisa
    August 30, 2018

    What an amazing little trooper you have, god bless you and your whole family. She is simply beautiful! I met your mom Jackie through a mutual friend years ago and she is the most wonderful, kind, loving, giving and happy person I have ever met and have the privilege to know. I am so happy that you are blogging because I know the impact it will have on so many others who can relate and who might be struggling. Thank you for sharing your very intimate personal story with all of us!

    Reply
  16. Janet Stegiel
    August 30, 2018

    What a beautiful read, continued prayers to Maddie and your family. Looking forward to getting to see all Maddie will do as she continues to beat the odds and amaze us all!

    Reply
  17. Stephanie Backiel
    August 31, 2018

    A+ on your first post Kelly.
    A job well done!
    Keep up the good work!
    Never give up!

    -Ms. Backiel
    2nd Grade Teacher

    Reply
    1. kellybacks
      August 31, 2018

      i just laughed out loud. hahaha

      Reply
  18. Annemarie
    August 31, 2018

    Beautifully written! What great parents you are! Keep writing your beautiful story !

    Reply
  19. Eileen
    August 31, 2018

    Your story inspires me and I will keep you in my prayers…. and your writing is terrific! Keep it up, keep the faith.

    Reply
  20. Marie Chuntz
    August 31, 2018

    You definitely have a flair for writing! This blog will not only help you but others as well. Social media can be a very positive outlet for awareness and finding out what others in your situation have found to be beneficial. Continued prayers and many blessings are being sent your way. ❤️

    Reply
  21. Aunt Debbie
    August 31, 2018

    there are some lines from a poet, “the most sublime act is to set another before you.” it seems always quickly interpreted as describing the act of putting someone else first. but I’ve always felt it as an act of beholding. no words or actions beyond, beholding. and while this can happen without a life altering event, such an event can offer it like casual life seldom does.

    so while I am moved past words by yours, with all that has happened to your young family, I see you and Madison, beholding one another. with what fullness of feeling is a privilege for those who love you to behold.

    with love, Aunt Debbie on behalf of me, my cats, and Grandma Nato, too.

    Reply
  22. Michele
    September 1, 2018

    Very proud of you, Kelly! Keep fightin’ the good fight. Xoxo.

    Reply
  23. Angela Varghese
    September 1, 2018

    Love your post! Thank you for sharing your story and your heart. You and your family are inspiringly strong 💪🏽Please keep writing ✍🏼

    Reply

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