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
For over two years this cozy room has been home. At 32 weeks of pregnancy with Jude I was put on bedrest and we moved in with my parents. They gave as a cozy space to make our own and it certainly served us well. This is the room I would lay in for hours and anticipate life with Jude. The room I spent days and nights praying over his precious life along with our family. The room I daydreamed about his little face. This is the room I came home to and found comfort after scary doctors appointments. The room we set up as Jude’s nursery and hung his name on that wall and his “Brave Little Warrior” banner. We tucked away his tiny clothes and set up his cozy crib. We made it such a perfectly sweet nursery and Jude loved every moment of it, as well as us. This is the room we brought baby Jude home to from the hospital and it instantly became his place of comfort. This is the room I learned to be a mama in, I spent nights nursing him in, I rocked him many hours in, we took many naps together in and I stayed up many nights with him in. This is the room where grandma and grandpa came and said goodnight to him every night. The room grandma would rock him in to give a very tired mommy and daddy some rest. This is the room Lucy spent everyday with us in. We watched Jude achieve many milestones in this room and we all danced around it with each one. We’ve spent many nights praying over him, reading him stories and singing to him here. He has had countless therapies here and nursing visits. This is room paramedics rushed to his side in but the same room he thankfully came back to. He had many photo shoots and news stories in this room. He had comfort, joy love and many fun times here. Although we had to downsize and put our belongings in storage and sometimes space became a challenge, this room became much more than just our room…it became home. The home we joyfully came back to after each hospitalization, long trips and long days. It was certainly cozy and lovely. It holds such precious memories and will always mean so much to us. It will always be Jude’s first cozy home. Thankful I can still always come back with Jude and remember all the memories we made here together and even make new ones as they are now turning it into a room for the grand babies. Today is bittersweet as we say goodbye to our first home and say hello to a new house that will be our new home. The end of a beautiful chapter and the beginning of another. Thank you to my wonderful parents and Jude’s grandparents for giving us these perfect memories. Thankful we are only FIVE MINUTES AWAY!!! 🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼
I can hardly believe it’s been two years since the most beautiful miracle entered my world. It was a day that was long awaited with both excitement and nervousness.
We arrived excited but in total honesty we walked that bright long hall to the delivery room carrying some fear. But we believed and proclaimed that we would come back down that hall with a beautiful life in our arms.
The labor was long and hard! Almost 20 hours. All along I was so excited to meet him but I was so scared to take him from my womb because I knew he was safe there.
His daddy and his grandma stayed with me through the whole thing and coached me on. And while I could see excitement on their faces, I could also see the same fear on them that was on me.
But when he arrived and his daddy got the first look at him, I will never ever forget the look on his face. Such relief, joy, passion, peace and love all in one expression. It’s a moment I will never forget. It’s the moment I loved him even more than I ever thought I could. I watched him become a daddy with such pride and love.
They prepared us for the worst but we clung to the best. We believed for life, breath, peace, joy and miracles. And at 3:06 am, I saw the perfect face of a warrior, my warrior boy.
They said his body would be to fragile for him to breathe on his own and said we wouldn’t hear a cry. But when they held him up for me to see him, he let out the most incredible warrior cry. My miracle was breathing on his own. He was alive! He was everything and more that I dreamed he would be. He was the most beautiful sight to behold.
They said he would go straight to the NICU that they had me tour and said I wouldn’t get to hold him right away.
After he was born and I got my first look at him, they rushed him to the surgical room connected to my delivery room. I watched doctors, nurses and students crowd the room and I could hear his perfect cry. I was devastated and aching at the fact that I couldn’t hold him. I needed to hold him. A few minutes passed and I saw him in a nurses arms headed towards me. And my aching was gone because they placed him on my chest and my whole world pieced back together. The fear that tried to cling to me for 9 months was gone. The words of death that were spoken over him by the enemy were lies. HE DEFIED THE ODDS. The first breathe that left his body was a miracle. He came into this world with a warrior cry and from his first breathe, his LIFE was a testimony of the goodness of God.
His first breathe fulfilled all the promises the Lord had given to us.
In these past two years we have had moment of pain, confusion and testing. Jude has has multiple surgeries and many hospitalizations. We have painfully placed him into the arms of strangers (surgeons) and sat long hours that felt like eternity trying to catch our breath until he came out. We have spent many nights on hospital benches and even nights crawling into his hospital crib with him. We have spent countless hours at therapies and doctors appointments. We have traveled many long miles to get him the best medical care. And we feel as through we have become therapists and nurses ourselves with his medical care.
I’ve received several messages asking why I brought him here to suffer. How could I choose this life for him.
Jude is the most joyful person I know. He has all the reason in the world to live unhappy and yet he has a smile and sweet giggle to share with anyone and everyone.
Jude loves life. He has pain at times but he never lets it bring him down long. Jude is a
strong fighter and he is defeated obstacles they thought he never would all the time.
This has been two years of miracle after miracle, two years of promises fulfilled, two years of victories, two years of unspeakable joy and two years of unmeasurable love.
My sweet Jude,
From the moment I knew you were coming, I loved you. And when I heard your heart beating, mine nearly beat out of my chest. From the moment I got my first look at you on that little screen, I thought every inch of you was perfect. And then when I got to see you and wrap you in my arms, I knew I was holding a perfectly created masterpiece. Your sweet brown eyes take my breath away every single day. Your little expressive eyebrows tell me how much you love me with every little raise and that huge smile on your face. And every single breath you take, I am proud of your strength. Your heart is filled with so much joy and love and everyone who meets you falls in love with you! To know you is to love you. You are certainly God’s most perfect masterpiece, my love. I am the luckiest person in all the world because I get to be your mama. I promise to always love you with all that I am. I promise to protect you and keep you safe. I promise to lift your precious life in prayer and believe for continued miracles. I promise to be your #1 fan and cheer you on with every single milestone. I promise to never give up fighting for you and with you. I promise to always be by your side. I love you forever and ever and ever, my brave warrior boy ❤️