Two years ago today 

Two years ago today, my mom, sisters and friends hosted the most beautiful baby shower for Jude. The theme of the shower was “Brave Little Warrior” everything was put together so perfectly and so many of my closest friends and family joined to celebrate Jude’s beautiful life.
We knew at that point that Jude had a form of skeletal dysplasia but we were believing for a healthy baby no matter what the doctors were speaking to us. So we all joined together to celebrate and believe for the best.
They sat me down in the middle of the living room and started praying for Jude and I. They spoke words of healing and peace. My pregnancy had already been terrifying and hard. Every appointment had scary news that Jude wasn’t growing and they were continually worried. During the prayer time at my shower we all prayed and believed for smooth sailing the rest of my pregnancy. As soon as I got up after prayer my water broke. I rushed to the bathroom and realized I was losing a lot of blood.
I was then rushed to the hospital by ambulance where my husband met me. The whole ride there was terrifying. I was contracting and they said there was a good chance the baby would come on the way to the hospital and we’d have to pull over and then keep going once Jude arrived. Thankfully we made it to the hospital! As soon are we arrived they began prepping me for emergency c-section and I knew it wasn’t good. Jude was already too small and I was only 32 weeks.
My sister posted a request for prayer on Facebook and which is how Jude’s Facebook page began. We started his page to update friends and family on what was happening because our phones were blowing up with requests for updates.
My husband arrived and instantly knelt down beside me and started praying for my pre term labor to stop and for Jude to be ok. By the grace of God my labor did stop! Doctors didn’t understand it, but it stopped.
They decided to give me steroid shots in hopes of it helping Jude’s lungs develop and they decided they would then try and get me to carry him 24 more hours. 24 hours then led to 48 and then 72 led to a week and before I knew it, I was able to stay on bed rest and carry Jude to term!!!! This was a miracle.
Doctors said it would be a case study because I shouldn’t have been able to carry him to term. But somehow my amniotic fluid replenished and Jude was stable. We know it was prayer!
Jude will be 2 years old in a little over two months! I will be posting throwbacks leading up to his birthday with more of his story. Thank you to everyone that has been faithfully following Jude’s journey and encouraging us! Your love and prayers mean so much to my family ❤️


  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  

HOPE is EVERYTHING 

First in this post let me say thank you to everyone who has been faithfully following Jude’s journey, sharing posts and doing everything to help us raise awareness for RCDP. We feel so much love and support and it means more to us than I could ever convey.
Molly Grantham with WBTV Charlotte local news followed us to Delaware to get coverage of Jude’s medical care he receives there from several specialists. She got footage from every appointment and procedure and interviewed the specialists who know most about RCDP. This is great because it really helps people to learn more about this diagnosis.

 

 

RCDP is a indeed a brutal diagnosis. It’s painful and scary and it comes with a lot of unknowns. Every single day we are taking on a fight for our child’s life. Everyday we are storming heaven and earth to do everything we possibly can for our Jude.
One of the doctors said in this video something that really stung me “He is not going to be 70, he probably won’t be a teenager”

 
We have known since the very beginning when he was first diagnosed that RCDP is a “lethal” diagnosis. But to hear him referring directly to my child in such a brutal sentence was hard to swallow and it sent shivers down my spine.

 

I’m going to open up and take a moment to be 100% brutally honest in hopes that it doesn’t send off offense but rather gives insight and encourages people to get behind such a worthy cause for these beautiful children.

 

If you are friends with me on Facebook and Instagram or follow Jude’s Facebook page, you obviously know that we post ALL THE TIME. We spend our every waking moment working at raising awareness for the genetic disorder that is dramatically altering our child in many ways.

 

I lose friends on social media all the time and a lot of the time its people I personally know. I have heard on more than one occasion comments about how we post a lot. I have asked people to share a post about Jude, another RCDP kid or something about Rhizokids with a “no” response or have been ignored. Because they only like sharing things that look nice on their feeds or they don’t like posting about the same thing over and over.

 

Please hear me out and don’t take this as judgement or condemnation. For my child and the other beautiful RCDP children I have come to love so dearly, I have a job to raise my voice as loud as I possibly can. I am on a mission, and it’s one that is not to be taken lightly.

 

Yes, I have faith in a wonderful Heavenly Father that has so graciously extended his hand to us throughout this entire journey. Even in my human flesh when I have questioned or taken offense, he has remained loving and faithful.

 

I have hope and I am believing with everything I am for what earthly man sees as impossible to be possible.

 

When I first heard that sentence, I wanted to rewind it and somehow delete it so that no one else could hear those words. But I have come to realize that it was something I actually needed to hear. It motivated me to push even harder. To use all my strength to invade heaven and earth to fight for my son and all of these beautiful babies who have no voice to fight with on their own.

 

Posts about RCDP aren’t always the beautiful and hope filled ones. Sometimes they are raw, scary and even hard to see. But this is our reality, we are in a fight for LIFE. And even though I do believe in miracles and I do have hope, I also know that God has trusted me with this mission. He has trusted that I will fight until I find victory.

 

I will do any earthly thing I possibly can in my human nature to fight. I will continue to bombard this world with the words RHIZOMELIC CHONDRODYSPLASIA PUNCTATA. 

 

These children are facing terrifying battles and it is very very hard to watch. It’s not all the “feel good” stories at all times. 

But these children are also some of the strongest human beings you will ever meet. Their strengths is incredible and inspiring. Makes you feel like no matter that you’re facing, you will make it.

 

Most RCDP children cannot talk or they only can very little. But they do fight, they love and they strive to do the impossible.

 

Let me remind you, they said Jude would live two weeks and here shortly we will be celebrating 2 YEARS.

 

I just want to be clear on why I send thousands of messages and emails looking for help with awareness. This is our reality. This is why we post thousands of posts and start social media campaigns.

 

Our warriors need us to be warriors along with them. We are marching this battle for them.

As I said in the interview, they are not sure the clinical trial will do everything we hope, but they know it will do something and something to us is EVERYTHING #HOPEisEVERYTHING

 

This isn’t me saying “to fight with us, you must share every single post” that is not what I am trying to get across at all. I am voicing why we do what we do. And I am trying to shed light on the reality of what these beautiful, sweet and innocent babies live with.

 

Every post, prayer, ounce of hope, encouragement and love matters. Our community feels all the support from so many. We can’t do this without you. We need an army, we need a tribe!

 

Let’s join together and fight this fight, with unending hope in our hearts and our heads held high.

Let’s lift up our voices for our warriors who can’t, let’s hold up their fragile arms and soldier on with them.

Let’s shout loud and clear for all be nations to hear. They have fought long and hard and deserve HOPE and a cure.

Let’s run this race until we reach the end where victory is won and RCDP is done.

They fill our hearts with immense joy, love and peace. So let’s give back to them what they give so freely.

 

I HAVE HOPE. We have hope. I will hold onto that. I will continue this fight. #HOPEforRCDP

 

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11

 

To see Jude’s recent news stories and extra footage from his WBTV story, you can find them on Jude’s Facebook page  https://www.facebook.com/prayingforjudesullivanpeters/



  

I promise. 

You have always loved music. I imagine if you had the ability to, you would get up and dance.

The outdoors always bring a smile to your sweet face and makes your tiny heart race. I imagine if you could, you would get up and run really fast.

I see your little lips trying to form words when you see your mommy and daddy and I know that if you could, you would call us by name and tell us how you love us.

I see you try to form words when a song comes on and I imagine your voice would be the absolute best.

I can’t give you everything my heart desires to give you but I can promise to do my best.

I promise to pick you up when the music is playing and sway to the rhythm so you can feel the dance. I promise to hold you up in the air so you can feel the refreshing breeze on your face. I promise to hold you tightly to my chest and sing to you so you can feel the words forming into a song. I promise to be and do anything you can’t. I will be your dance, your song, your steps, your voice and anything else you need me to be. I will be everything for you. It’s the least I can do for someone who is everything to me.

I love you, Jude ❤️

My joy

Sitting here rocking my sweet Jude at 12:00 am. because I can’t bring myself to put him down in his bed. He’s wide awake and staring right at my face. His eyes are so full of joy and sparkle all the time, he always has the most precious smiles to share with everyone, he laughs and talks every single day, he lights up when he sees his family, he loves worship music, he loves to cuddle and he loves anything that lights up. This baby wakes up smiling every single morning. Doctors and nurses fall in love with him because even after surgeries he greets them with a smile.

He has intense therapy every week and I see the pain he faces. I also have seen him go through surgeries, spinal taps, IV’s, sleep studies, MRI’s, X-rays, catheters, blood tests and many other things. And through it all he never loses his joy. He is filled with joy.

When I look at Jude that is one word that always pops in my head “joy”
He is teaching me to have joy in every situation because no matter how hard this journey may be, we have each other, we have LIFE and we have joy. Thankful that The Lord has used my sweet boy to teach me so many things. He is my joy.

I love you my sweet Jude ❤️ You will always bring me great joy.

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Nine months

I can’t believe my baby is already nine months old! I have officially been carrying him in my arms for the same amount of time I carried him in my womb. Nine months ago today, I gave birth to a miracle, a warrior and the sweetest baby. I’ll never forget walking those hospital halls and fighting back the fear of losing my baby. After twenty hours of labor, I heard the cry I longed to heard, the cry they prepared me not to hear. I took one look at his perfect face and I was undone, overwhelmed and completely captivated by his beauty. They placed his tiny fragile body on my chest and it became painful to breathe. I never understood what it truly meant to have your breath taken away until that moment. From those first few moments with him, I knew he was destined for something incredible, something I could not even fathom. I knew he was a strong fighter and he would continue to fight. I knew from that moment forward that I was a completely different person. They told us before he even went home that he most likely wouldn’t live long and as much as those words broke my heart, I knew he was meant to be here and his life would be a testimony of the goodness of God. Jude is nine months old today and filled with LIFE. He is thriving and fighting. He has an army of people who constantly surround him with love and prayers. I get letters about how he has touched people’s hearts and changed lives and I smile because I knew before he was even born, he would speak to the nations. I can’t even put into words how honored I feel to be a mom to such a beautiful miracle. He has made me a better person, he has taught me the significance of life, he has taught me to fight, he has healed so many places in my heart and he has filled my days with complete joy. I love you my Juju bear with every ounce of my being Keep fighting my Brave Little Warrior boy. I’m so proud of who you are. ‪

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A New Year

2014 was defiantly a year of trials and heartache but also a year of healing and miracles. I had the scariest day of my life when my water broke at 32 weeks at my baby shower. I was rushed to the hospital and almost lost my baby that day. They prepped me for s c-section and after many prayers, a miracle happened and I carried him all the way to 40 weeks. Thoughout my entire pregnancy and scares with Jude and hearing from all the doctors that he may not live, The Lord continued to promise me that he would and he did! He took the first breath on his own and we heard his cry. We welcomed our living, breathing miracle into the world and he has already become a world changer with his amazing testimony of his LIFE. Then my sweet baby nephew was born and completely captured my heart! He will forever be Jude’s friend and protector and I am so thankful for that. My sister and I became moms together and it has been amazing sharing this journey with her. My relationship with my sister Ashton has become deeper than ever and The Lord has really mended our hearts. She has become such a wonderful and loving auntie and would do anything for her nephews. I also had the heartache of saying bye to my best friend and watched her move away to Colorado. But our relationship has stood even in the distance and now she is married and having a baby! We get to be mommy’s together and I am so very excited about it. In 2015 we will be welcoming their little Sugar baby. My amazing friend that lives far away from me in Australia came and stayed with me twice and we had such an incredible time together and our friendship feels stronger now than ever. My husband and I said goodbye to our first place together but my wonderful parents welcomed our family into their home to live and it has helped us tremendously with the care of Jude and it has been such an incredible blessing. My parents became grandparents for the first time! This has been a dream for them and it has come true. They are such incredible grandparents and love these boys so very much. Their love for the boys is amazing. This year has been filled with many doctors appointments, travels to Delaware, therapies, hospital stays and surgeries. Jude has been hospitalized 9 times this year and had 4 surgeries. But he has always shown strength and bravery. I have shared this entire journey with my amazing husband and best friend by my side. He has held me up in the hardest times and rejoiced with my in the victories. Seeing him become a daddy to our baby has made me love him more and more everyday. The way he fights for Jude is amazing. I am so very thankful for all the amazing people that I have in my life. I can’t wait to see what 2015 will bring!

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