I can hardly believe it’s already time to start on our journey as we head to the Rhizokids conference. In a week we will be reunited with our Rhizo family and I will be snuggling so many sweet warriors in … Continue reading
Three years ago today at 3:06 am, you made your grand entrance into the world and changed our life completely. It was such a scary pregnancy and the labor was so hard and frightening. They kept “preparing me for the worst” and I kept believing as I dreamed for the best. I believed in you before I ever even saw your face. I fell in love with you from the moment I found out I was carrying you. For 9 months I was head over heals in love with someone I had never seen face to face. I loved you with every kick, hiccup and even through the heartburn, bed rest, back pain, sleepless nights and swelling. I knew you. I carried you through trauma and I put myself through pain to fight for you. Doctors wanted to put me first multiple times but for me it was always you. From the first moment of knowing you were mine, nothing was more important than loving and protecting you. My own self no longer mattered. The enemy tried so hard to scare me, steal my joy and break me down and while I was scared at times, the joy I had for you far outweighed it all. I knew you had a purpose and I prayed into that with my whole heart. I remember walking to the delivery room and pacing the halls in labor while saying “Jesus, you have control. Jude is strong and his heart beats. Breathe Jude! Just breathe” Before you came they said you probably wouldn’t cry when you were born because you would need assistance breathing. But you, my boy proved them wrong. You cried out the most incredible cry that sounded like a warrior but also a little baby lamb. There you were! Perfect, tiny, fragile, so soft and absolutely beautiful. A living, breathing miracle before my own eyes and I just had the honor of bringing you into the world. And suddenly, none of the pain mattered. I couldn’t believe how beautiful you were. I still remember the way it felt to hold you the first time. You were so itty bitty, your skin was so soft and warm and the sound of each breath was healing to my heart. The sound of each breath was victory. You fought hard and you entered the world a true warrior. Jude, you have changed my life in the most beautiful ways. While it feels like just yesterday you arrived, it also feels like you’ve been my best friend forever. Sweet baby, I have watched you go through so much and held you through many storms. And yet it’s me who fails to stand strong at times and it’s you who never gets knocked down. You smile through pain and breathe through fear. Even though you have had many hardships, that’s not your story. RCDP is not your story. You’re story is HOPE! Your life is a testimony to the goodness of God. Your strength and bravery is an example to many and your joy is contagious and healing. You have such a beautiful story and The Lord has used your incredible life in such powerful ways. I can’t say I always understand everything and that I don’t ever fail in my faith. But the way you never lose your joy and the way you fight through any battle teaches me so much. It strengthens me faith. You’re daily teaching me lessons. I am so thankful The Lord chose daddy and I to be your parents. You’re our world. We are so proud of you! These past three years watching you, loving you, fighting for you and holding you have been a dream and I can’t wait for many more. Happy Birthday, Brave Warrior! Jude Sullivan peters, you are my perfect miracle. I love you to the moon!
This is an update I did not expect to make. Today we received news we didn’t expect to hear. Today was an appointment we have been dreading for months and yet today turned out to be a milestone I believe … Continue reading
Hello everyone, Two more days until we leave for our big trip to Delaware for Jude’s MRI and appointments at AI DuPont Nemours Children’s Hospital. We’ve been waiting for this MRI for quite sometime and pray that it will give … Continue reading
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 … Continue reading
I remember feeling so alone when Jude was first diagnosed. Many other women in our local community had babies around the same time as me but their stories, ultrasounds, births and life with their new babies were 100% different than the journey I was on. I felt like it was hard to connect into a group of moms because when it came down to me talking about my motherhood experiences, no one could understand me the way they understood each other. Now I know every child and every parent is different and no ones life looks identical, that is not what I am saying.
But while everyone else was losing sleep at night with fussy babies who wanted to nurse, I was losing sleep in uncomfortable hospital chairs and by the sound of alarming monitors. There is nothing harder than jumping in an ambulance with your child and praying for dear life.
Shortly after Jude was born and officially diagnosed with RCDP, we reached out to online communities hoping to find anyone who knew something about this. We were contacted the day we posted his diagnosis on the Parents of Little People page by multiple parents that had children with RCDP.
I was bombarded by messages and beautiful photos of other Rhizo kids flooding my inbox. Almost every photo of each child was a huge smile and I heard about all of their joy.
We felt terrified, confused and alone and then this beautiful community we call our Rhizo family came rushing around us and extended so much love to us when we were strangers to them.
They didn’t candy coat the situation, they were real and honest with me as they told me how hard I would have to fight for my son. They told me the biggest challenges, warned me about what doctors would tell me and told me all the ins and outs of what an RCDP child deals with daily. They told me what tests to have done, what x-rays and MRI’s to have taken, what doctors to travel to and what therapies to start.
I felt so overwhelmed by all the information I was receiving but it was what I needed and honestly, these women pulled us out of some really deep gutters with their incredible knowledge that I was able to give to the local doctors who really knew nothing about his diagnosis.
Then I started hearing from moms who had angel babies and that was really hard for me. I couldn’t stop going to their pages and looking at their perfect faces. I couldn’t understand why. And my heart started aching and missing sweet angels I never even had the privilege of meeting. My heart fell in love with them and although I never got to meet and snuggle all of them, they have become a part of my life and have such a special place in my heart. What was and is so amazing to me is that these families who have been walking in this storm have not stopped fighting RCDP. They do it in honor of their beautiful angels and because they love our kids so much. That is family. Even when it hurts, they don’t stop fighting. And even in their moments of feeling hopeless they don’t let go. I can’t think of many more honorable than these incredible people I get to call my family.
This is a group none of us would wish to join but we are so incredibly blessed to have. We grieve together, we rejoice together and we fight together. We are in this together.
I remember the day he vowed to me for better or for worse, in sickness and health. He vowed to hold me, carry me, guide me, provide for me, love me and lead me.
Hearing him vow in sickness and in health, I would have never dreamed the sickness that would find us would be that of which was diagnosed to our firstborn son.
This journey we are on together has indeed been the most painful and terrifying. Four letters were spoken to us on one of the happiest days of our life and in that second it felt as if our world was crashing down around us. It felt like someone kicked us in the gut and sucked all the air out of the room.
I was terrified and the pain was unbearable. And there he was although also beaten down and just as hurt and terrified as me, he somehow still had the ability to be my strength. He found the courage to fight, the faith to believe, the hope to stand on, the tenderness to comfort and the love to heal my breaking heart.
One of the biggest battles we face on a daily is Jude’s seizures. I daily watch him scoop up Jude and cradle him in his ever so loving arms with tears streaming down his face and I know it’s the safest place Jude could be. I watch Jude smile at him when the seizure ends and I think it’s his way of saying “don’t worry daddy, I’m ok”
And at the end of these terrible episodes, I see both of their joy return as their bond and love for one another can heal their hurts.
There are times where this journey has torn me to shreds and sucked my energy away. But he somehow always has the ability to pick me up. It doesn’t even always have to be with his words or his prayers. But his gentle loving spirit and the strength he carries for all of us stands me up on me feet again.
I knew when I married him that he would take care of me. But I didn’t realize he would carry me through a storm so harsh. I didn’t know one could be so strong amongst their own pain. He’s a strong shelter in the storm. God knew exactly what he was doing when he gave him to me.
His love for Jesus, love for his family, passion for worship, hardworking provision, encouragement, gentle spirit, silly humor, beautiful looks 😏 and unwavering faith are just a few of the things I love so much.
I’m so blessed to hold his hand on this journey.
Jude is a blessed little boy to have him as his daddy. Sull, you’re truly a hero to me and your Jude bear ❤️ My vow to love you forever is the easiest promise I have ever made. I know it’s not our anniversary or your birthday. But I want you to know I celebrate everyday with you. I have posted countless blogs about Jude and our life together. I like to write about the things that mean most to me and you mean the world to me Sull. You’re our anchor in the storm and bring bring so much joy to our life. The Lord truly uses you in a million beautiful ways to lead and care for your family. I’m so proud of you.
And to end this mushy post on a silly note for you…
As Buddy the Elf would say…
“I’m in love, I’m in love and I don’t care who knows it.” ❤️😘😂
It’s not often I post a photo of just myself and not because I think it’s a bad or weird thing, I just tend to post photos mostly of my son, family, friends and places. In this picture I was … Continue reading
From the first moment I broke the news to you and you wrapped me in your arms and lifted me off my feet with joy and laughter that may have also come with some shock over our unexpected and perfect surprise “Jude”. From that very day, you became a wonderful daddy. Before you even knew his name, you loved him with such a fierce love.
Our journey with parenthood quickly came with heartbreak and fear. I’ll never forget the way you stood strong in your faith and believed for the best even when they told us to prepare for the worst. Every scary appointment you stood strong in your faith and you held my hand.
I’ll also never forever the day I was rushed to the hospital 32 weeks pregnant and I almost lost Jude. I was terrified and in such pain and then you came rushing in by my side with tears running down your face although it was also filled with so much strength and grace. You brought me peace. You took on strength for the three of us as you fell by my side in prayer and fought for all of us.
Walking down that bright hospital hall to meet our Jude was terrifying as we were told to prepare for the worst but you stayed strong the entire time. You prayed as you held my hand and you gave me the motivation to bring him into the world as your faith in me gave me the strength to do so. The look on your face when you saw his for the first time will forever be burned into my memory. Our miracle entered our world and he was a fighter like his daddy from the very first breath he took. My love for you grew so much stronger and you looked more perfect to me than ever before. I watched you step into your new role with such great faith, joy, pride, love and peace.
Through all the medical prognosis’s, procedures, surgeries, MRIs, ambulance rides and sleepless days and nights with our boy in a hospital bed you have been a foundation of strength for us. Every prayer you have prayed blesses me. Every tear you have cried although it has broken me in ways, it also reveals to me the love you have for Jude. When he hurts your heart feels with him and when he’s laughing on cloud nine, you’re lit up with more joy than ever.
Jude can’t talk yet you understand him so well. You know his cries, his cues, his laughs and his expressions. You know his ways of telling you he loves you.
We have heard 100 times from people and different doctors about how Jude isn’t average. The way that you always make things work perfectly for Jude melts me completely. You have done everything to have a perfect father son relationship and you never make Jude feel like he can’t do things. The way you believe in him is so inspiring. And the things he has a hard time with, you do it for him. You’re his strength. You’re his joy. You’re his motivation.
I learn from the two of you every single day. You have taught me so much more about the fathers love for us by demonstrating that same love with Jude, you have taught me to have joy amongst the storm, you have taught me that everything is possible even if it’s not absolutely perfect and you have taught me how to fight.
The love you have for Jude and the love he has for you is breathtaking and perfect.
You’re a hero. You’re a wonderful daddy and I am so blessed to be on this journey with you. Happy Father’s Day, babe! Jude is blessed to have you as his daddy, pal, playmate, protector and hero ❤️
My name is Hannah Peters and this is my wonderful son, “Jude Sullivan Peters.” We currently live in Charlotte, NC.
Please let me take a little time to share with you about Jude.
Jude was born with a very rare and lethal form of dwarfism called “Rhizomelic Chondrodysplasia Punctata” (RCDP). Currently, there are less than 100 cases diagnosed worldwide.
RCDP is a condition that impairs the normal development of many parts of the human body. The major features of this disorder include: skeletal abnormalities, distinctive facial features, intellectual disabilities, and respiratory problems.
RCDP is also characterized by shortening of the bones in the upper arms and thighs (Rhizomelia). Affected individuals also have a specific bone abnormality called (Chondrodysplasia Punctata), which affects the growth of the long bones and can be seen on x-rays. People with RCDP often develop joint deformities (contractures) that make their joints stiff and painful as well.
RCDP is associated with significantly delayed development and severe intellectual disabilities. Most children with this condition do not achieve normal developmental milestones such as: sitting up, feeding themselves, or speaking in phrases. Affected infants grow much slower than other children their age, and many of these children have ongoing seizures. Recurrent respiratory infections and life-threatening breathing problems are also common.
Because of their severe health problems, most people with RCDP survive only into childhood. It is rare for affected children to live past the age of 10. However, a few individuals with milder forms of the condition have lived into early adulthood.”
When Jude was born we were told that he wouldn’t make it two weeks and he is now 2 years old! Jude is a fighter and fights hard every single day. In truth, all of the RCDP children are fighters!
Jude is currently in the emergency room awaiting admittance into the hospital for the second time this month because he has been battling two viruses for several days now. Two weeks ago Medicaid made the decision to discontinue coverage for Jude’s hospice care. We had a in home medical care team that was capable of giving Jude the care his complexities require. Since losing Jude’s care it has been scary to say the least! Sadly, Charlotte does not have a true pediatric palliative care program, so kids such as Jude fall into a place where they are penalized for surviving. However, Jude’s diagnosis HAS NOT CHANGED. He still continues to fight a lethal diagnosis, only now we feel stranded without the correct medical care and support that Jude needs on a regular basis, which again was being provided by his Hospice palliative care team.
In Jude’s short two years of life he has had five surgeries and several other medical procedures. He has six hours of therapy every week, he was born with cataracts in both eyes (which is why he wears the glasses), his hips and shoulders are out of place, all his joints are contracted, he eats by a feeding tube, he has spinal stenosis, spinal kyphosis, a spinal cord tether, requires oxygen due to apnea. and his all around medical routine is pretty vigorous. Without a miracle, Jude still has many surgeries and treatments in his future.
We are currently in a situation where we have no home care team and the programs that are available to us are simply not specialized enough to care adequately for someone like Jude. We are a family that believes in prayer, however we also believe in Jude receiving the best medical care available!
Therefore, we NEED the city of Charlotte to come up with a plan to have a true pediatric palliative care program where Jude and others needing specialized in home care can receive the medical support they require to overcome their challenges and to not be penalized for fighting and overcoming.
Will you please help us by sharing this post? I am sure that Jude is not the only child in the Charlotte/Concord area that is facing this type of issue. With the above said, I am not sure if I need to lobby the governor, representatives, the media, THE PRESIDENT or whomever! But I am a mom on a mission to give my child the best chance at fighting and the best quality of life that I possibly can. Jude and all the other beautiful children battling medical challenges deserve the best care possible!!!
Thanks for your help in this important matter!
#FIGHTINGforJUDE #fightingforacause #HOPEisEVERYTHING #HOPEforRCDP #judestribe #judesjourney #prayforjude #rhizowarrior #superjude #bravejude