My sweet Jude,
I can hardly believe that you are already a year old. While at the same time I don’t even remember what life was like without you in it. Since the first moment I learned of your existence, I have loved you with everything that I have. You were an unexpected, absolutely perfect and wonderful surprise to your daddy and I! We couldn’t have been happier to find out we were going to be your parents.
It didn’t take long for doctors to discover something was wrong, you weren’t growing at the rate you should have been but we kept speaking over you that you were strong and you have only proved that to be true. At first they said you would just be little and that was all there was, I knew you would be perfect in every way, shape and form and I could tell just from your ultrasounds that you were the most beautiful baby I had ever laid eye upon.
Then things took a very scary turn when on the day of your baby shower, my water broke and I started hemorrhaging and almost lost you. Nothing on earth can compare to the terror I felt that day. I remember laying in the ambulance crying my eyes out and begging God to let you live and breathe. I arrived at the hospital where your daddy rushed to meet us and together we cried and prayed on your behalf. That day a whole army rose up to fight for you, pray for you and speak life over you. They got the monitor out to place on my belly to find your heartbeat and I was terrified. It didn’t take but a minute of placing it until we heard the beautiful noise of your strong beating heart. You fought hard and I was able to carry you 40 weeks when they planned to take you at 32.
About a week before you were born they discovered that what you had was something much more severe than what they had originally thought. They told us to prepare for the worst and that you may have been incompatible with life outside the womb. I went home terrified and devastated. After lots of emotions, torment and fear I decided that I wasn’t going to live that way! I had to rise up and fight for you. I was going to speak life over you. I continued to do all the normal things people do to plan for a baby. I got all your tiny clothes washed and put away, we decorated your nursery, we set up your bed and we packed your hospital bag.
Finally the day came! It was time for your arrival. I woke up at 4:00am and spent some time alone talking to you. Telling you how strong, brave and fearfully and wonderfully made you are. I promised that I would make my arms your safe place. And I told you that you had to breathe and fight. Driving to the hospital felt so surreal. There were so many people at the hospital anticipating your arrival. Walking though that hospital, down those long halls and arriving to the room you would be delivered in felt scary and exciting all at once. I told the Lord that day that I could not survive leaving that hospital without you in my arms and we all continued to pray and speak “breathe Jude breathe”. The room they had for you was connected to a surgical room and there were so many doctors, surgeons and nurses waiting for you and prepared to operate. The labor was painful, hard and terrifying but it was also exciting and beautiful at the same time. I had already tried to prepare myself and come to terms with the fact that they weren’t going to let me hold you right away, they said you would be to tiny and would need assistance immediately. They also told us we would probably not hear you cry because you would need help breathing. Then, at 3:06 AM you made your arrival. They held you up and you didn’t cry right away. Those few seconds felt like eternity. Then you put your little head back and let out the most perfect little cry. They whisked you away to the joining operating room and I just laid my head back and cried. I could hear you and all i wanted was to hold you in my arms. I just kept repeating “thank you Lord, he is breathing”. Suddenly, something unexpected happened and after a few minutes I saw them walking back with you and they put you on my chest. In that moment I lost my breath, tears fell and every single bit of fear and hurt I had harbored up vanished and everything felt perfectly ok. You completely captured my heart, changed my life, restored my hope and faith and became my world that night.
Your second day of life they took you for some tests. We knew you definitely had some kind of skeletal dysplasia because your legs were twisted up on your chest, your upper arms and legs showed to be significantly shorter, they discovered you had congenital cataracts and you were contracted in your joints. We had no idea how hard the results would be to hear. After they took you, a geneticist came back to speak with us. He handed me a card with a very long name on it “Rhizomelic Condrodysplasia Punctata” we had absolutely no idea what it was. He went on to tell us that you wouldn’t live and that most babies with this didn’t make it through infancy. He told us to take you home and make you comfortable and suggested morphine and hospice. I lost every single bit of control of my emotions and I couldn’t get out a single word. And there I was again, fearing for your life. Grandma and Grandpa then arrived and I struggled to tell them the news we had just received. I handed the card to my dad and he began to look it up online. I collapsed in my moms arms and when I looked back at grandpa, all I could see was fear and hurt. He didn’t let me know he was scared but I know him and his eyes and face told me everything.
We took you home the day before Easter and tried to make things as happy and normal as possible. You were so tiny and in so much pain. We passed you around on a memory foam pillow to ease your pain and your daddy made custom memory foam mattresses to fit everything. Changing your diaper and your clothes tore me apart every time because you cried out in pain and your face would fill with hurt and fear. I was nursing you the first week you came home but you wouldn’t stop choking and throwing everything up. I knew something was wrong. At just a few days old, you had a seizure and just went completely limp. We couldn’t hear or see your breathing. We rushed you to the hospital and you then had another one in the emergency room. They discovered you were aspirating and I had been filling your lungs with milk which also caused infection and the seizures. We were told you couldn’t eat by mouth anymore and they had to place a feeding tube. I grieved so deeply and walking you to that surgical room was one of the most horrible feelings I have ever experienced.
I could go on and on about everything I have seen you face. The surgeries, the blood tests, x-rays, sleep studies, spinal taps, seizures and the list goes on. But what I can say is that you ALWAYS make it through with pure joy and grace. I don’t know anyone else who can smile after a needle in their spine, but you can. Nothing takes your joy and strength. And while I know as your mommy I should be the strong and brave one, I feel like its you who is strong and brave for both of us. You have so rightfully gained the title “Brave Little Warrior”.
You are ONE today! They said this day would never come. But you never stop defying the odds. You are constantly shocking doctors and doing things they said you never would. You can eat by mouth, move your arms and legs, you aren’t in constant pain anymore, you socially connect with us and anyone, you are gaining head control, you are breathing on your own and you are FIGHTING. You are incredible. And your beautiful testimony, bravery and strength is speaking to the nations and changing hearts and lives. I couldn’t be prouder to call you “The Brave little Warrior” My son, my hero, my strength, my peace, my heart and my best friend. Keep fighting the way you always have. We will beat this! YOU will beat this. I will always be here to hold your hand, be your voice, love you, soothe you, encourage you, believe in you, fight for you and pray for you. I love you more than I could ever put into words. There are no words meaningful enough to capture how I feel about you. Happy birthday Jude ❤
You came into our lives as perfect as can be, a tiny fragile package The Lord entrusted us to keep.
The journey started rocky and things were touch and go but every battle thrown against you, you have been shielded by The Lord. They told us not to keep you that we should let you go. They said we would be selfish to bring you in this world. We shook our heads and stood our ground and I kept you safe inside and even though you have daily battles, your pure joy is what abides. They said you wouldn’t be here long and your life would quickly pass so we put your life in the hands of The Lord and have continually prayed and fought on your behalf. So sweet Jude keep your head up and continue on this fight. Your heavenly Father rewards you for all your bravery and might. And know we will always be here to carry you along. And when you’re feeling pain or fear we will hold you in our arms. You’ve taken on great battles with bravery and strength, your joy it never wavers even amongst great pain. Your smile melts the coldest hearts and heals the deepest wounds. Your story speaks to The nations and brings healing, hope and truth. Jude, you are a brave warrior and a brave fighter. No matter what is thrown against you, you just hold your head up higher. Keep fighting strong warrior, keep defying all the odds. We are all fighting with you. You’re brave, mighty, fearful and strong.
Our pregnancy announcement!<p><a href=”https://vimeo.com/75913006″>coming soon…. [sully + hannah]</a> from <a href=”https://vimeo.com/user5259670″>Jonathan Volk</a> on <a href=”https://vimeo.com”>Vimeo</a>.</p>
The Warrior Arrives! (April 17, 2014 3:06am)https://vimeo.com/94069695″>Jude Sullivan Peters</a> from <a href=”https://vimeo.com/user5259670″>Jonathan Volk</a> on <a href=”https://vimeo.com”>Vimeo</a>.</p>
The Warrior Is One! (Jude’s first birthday party April 4, 2015)
All photo and video credit goes to :