I will never forget the first time I read those words (rhizomelic chondrodysplasia punctata) they were written on the back of a doctors business card. I couldn’t even really pronounce them. I was sitting in my hospital bed holding my sweet baby that had just come into the world. He was born on April 17th at 2:06 am and came into the world with a warrior cry. They told me to prepare for him to not be compatible with life outside the womb and then here he was in my arms crying the most beautiful cry.
We knew Jude had a form of skeletal dysplasia since utero but we didn’t yet know what it was. They just said it was severe and to prepare ourselves for the worst. We knew when we saw him that he did have something. His legs were twisted up and one foot was on his chest and his arms were tucked behind him. I remember us saying “but he’s not in the NICU and he’s here. He probably just needs some surgery on his arms and legs and then everything will be ok! Because besides that, he looks ok.”
We were thrilled and believed with such joy that we had a healthy baby who just needed a little help. And then that business card was placed in my hand and our world was turned upside down.
All I wanted to do was squeeze him tight but when the doctor said the words “unfortunately this is a very rare and lethal form of skeletal dysplasia” my stomach started turning, my head started pounding and my body was just shaking. He told us we should take him home on morphine and try to enjoy what he thought would be around two weeks with him. Tears instantly feel uncontrollably and my arms felt so weak as my body was just shaking in shock. I tried so hard to just hold Jude tight but sully had to place him in the bassinet next to me as I was unable to steady my trembling arms.
My mom and dad walked in the door and saw me sobbing and Sully. Mom asked “Hannah, what’s wrong!” But I couldn’t speak. I couldn’t form my words. I handed dad the business card and Sully told them “they think Jude has this” I looked over and saw my dad holding the card next to his phone to look up those words. I saw tears in his eyes and he quietly walked to the hall. I knew it wasn’t good. But I was terrified to read.
Mom followed him out to see what it was. She came back and picked up Jude with tears and we all began that day to pray pray pray even harder. We had prayed for nine months that everything would be ok.
Jude survived a placental abruption and miraculously I was able to carry him to term. They told us he’d need instant assistance breathing and probably emergency surgery but he didn’t. We knew he was a fighter, a brave warrior and a conquer.
Soon after we were connected with an incredible community, Rhizokids. I had the blessing of connecting with other moms who were in my shoes. They walked me through the hardest seasons of my life and till this day, my rhizo family is my backbone. They are always there to love, understand, pray, weep, rejoice, celebrate victories and hold hands with me. They are family.
We have now had the honor of meeting these families, loving on the beautiful warrior kids and connecting with them in such a beautiful way. I love these precious kids as if they were all my own and that same love is felt from all these wonderful families. We are a small group battling something so rare. But let me tell you, we are loud. The strength and tenacity these families have is unreal. We are in this together.
Each warrior and angel holds such a special place in my heart. RCDP, those four little letters have taken precious lives way to soon. We have said goodbye to many times. The pain is real. The fear is sometimes unavoidable. And forever our arms and hearts will be missing the ones who went before us.
We have a beautiful tribe of warrior angels watching over us and we will never stop fighting in their honor. They are and will always be such a huge part of our lives and our community.
I have the highest respect for the angel parents who in their pain, continue to fight. They stick around and never leave. Because we are bound together forever. We are a beautiful family. I love you all so much.
This is our harsh reality. But together we fight, together we comfort, together we miss, together we pray, together we weep, together we rejoice and together we are stronger. Together we stand.