Today is national dwarfism awareness day. My son is the center of my universe! And he has a very rare form of dwarfism. I remember when I first found out in utero that my baby had dwarfism. The first time they told me, they didn’t know just how severe it would be. I remember going home and all I could think was “He will be small. That’s ok! He will be very small but he will be healthy! He will still live like most children. He will be playing, going to school and doing all the things kids do. I’ll just have to explain to him why he’s small. Healthy is what matters.” And I had peace. Never did I imagine what what’s to come.
I didn’t even know what RCDP was. I had no idea that when they told me “your baby has dwarfism” that it would mean that he wouldn’t be able to speak, walk, eat, run, ride a bike, make messes and do all the things you picture when you find out you’re going to be a parent. And then I came face to face with RCDP and every single day from the minute I wake up, it’s the battle we fight.
Let me tell you, while RCDP may take away the ability for my son to talk with me, walk or wrap his precious arms around my neck, it DOES NOT and WILL NOT take away the JOY! It can not effect our beautiful bond. It can’t take away all the love. It can’t take away his sweet, happy and wise spirit.
Although it has taken the ability for him to form words, every single day when he uses his own special way to communicate to me, he is defeating it. He lets me know how much he loves me with those big brown sparkly eyes, his infectious smile, the way he rams his little head into me (which is his way of hugging) and the sweet noises he makes. He lets me know when he’s hungry, tired or wants to be put down. He is smart enough to find his ways to communicate with me. I just have to be patient, study and listen and it is my greatest honor.
Knowing him is pure joy. I can honestly say, I didn’t know much about dwarfism before I had Jude. I had NO IDEA there were lethal forms of dwarfism.
RCDP has taken from me, from us (our Rhizo community) but it has also given us a family, a greater understanding of how precious life is and the most beautiful warriors there are. We just said goodbye to yet another Rhizo warrior. It never get easier. But we are better to have known them and to love them! And they are always in our hearts and forever a part of our lives. Our beautiful Rhizo angles ❤️
On National dwarfism awareness day I am here to say…RCDP, you can not take our joy, our love and our strength. We will continue to fight, to raise awareness, to stick together, to love and to live in joy and HOPE even amongst the pain.
And to my beautiful son Jude, my sweet baby boy! You are a warrior! You fight harder than I ever could. You never let your limitations in your fragile little body limit the joy in your spirit and the love in your heart. Being your mommy is my greatest privilege. Being loved by you is a dream. I will always fight for you, protect you, hold you and love you. You are my best friend! I will never stop being your voice and working as hard as I can to raise awareness. You’ve got a friend in me, babe ❤️ #dwarfismawareness #HOPEforRCDP #HOPEisEVERYTHING #bravelittlewarrior