National Dwarfism Awareness Day

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

2 thoughts on “National Dwarfism Awareness Day

  1. Hannah,
    You are a beautiful, loving mommy to Jude. And Jude is a precious, sweet little angel!
    I pray for, and love, your wonderful, loving family.

  2. Hannah, I am once again humbled and full of admiration as I read your description of how you and Jude have developed your own means of communicating with each other. Plus I’m a lover of great photography, and what you describe with words shows up in those dear photos. At the same time, babies not beset with Jude’s severe dwarfism still develop non-verbal means of letting mommy and daddy know their feelings of love, joy, security, and also pain, fear, or confusion.

    I’ve been a student of neurolinguistics for 35 some years. It reminds us that verbal communication is usually a surprisingly smaller component of what goes on between two or more persons, with body language usually comprising more than 50% of what gets passed on as people communicate (the rest being audio/tonal).
    It revolutionized the manner in which I was able to interact with others, whether in a casual or a more formal setting, which for me had to do with ministry to people in need. It helped me be a more effective pastor; then as a business chaplain and also as a management consultant for smaller-sized health care organizations. Then for 25 years as a personal financial advisor practitioner (before I retired early 2016 for health reasons).

    Why am I sharing this personal history? To affirm and celebrate WITH YOU your focus on what Jude IS ABLE to do, and the deep, personal communication which Jude and you have developed.
    Of course it would have been great if as a more typical child, Jude could use words. Of course you have every reason to mourn the severe limitations and complications this horrid disease RCDP has inflicted on Jude and on your loving union with Sully. A disruptive, vindictive ENEMY has done this, as Jesus clearly taught in the parable of the wheat and the tares.
    Jesus told us we would encounter TROUBLE in this world. Which is why our Creator of Good invaded the Enemy’s territory, and as Jesus added—and I love how the Amplified Bible teases out the full meaning of Jesus’ encouraging REALITY—“I have told you these things, so that in Me you may have [perfect] peace. In the world you have tribulation and distress and suffering, but be courageous [be confident, be undaunted, be filled with joy]; I have overcome the world.” [My conquest is accomplished, My victory abiding.]”‭‭ — JOHN‬ ‭16:33‬ ‭AMP

    Please bear with me, because there’s a powerful lesson to be gained way back in the beginning. Yes, in what we consider to be so familiar, Genesis 1. For it illustrates a powerful lesson for Jude and you.

    Jesus as the creative WORD took on planet earth, which is described as “… formless and empty, darkness was over the surface of the deep, and the Spirit of God was hovering over the waters.”‭‭ — Genesis‬ ‭1:2‬ ‭NIV. And with just his Word God brought order—first light to make up day, not just dark or night; then waters above, not just below; finally waters below moved over so dry ground could appear. Now that there was order, he began to fill the void—vegetation and trees filled the dry ground; next sun to rule the day, moon and stars the night; then creatures to fill the waters below, the oceans, and creatures to fill the waters above, namely the sky; next creatures to fill the ground full of vegetation and trees; and finally beings bearing the likeness of God in the form of male and female human beings, who themselves would have the privilege of co-creating with God additional human beings. WOW. And yet he was not quite done. Before they were to begin working on the first time day of the week, Jesus gave them the greatest gift possible—rest in his Presence, Shabbat Shalom, the peace and wholeness found in Sabbath rest with the Creator.
    Well, an Enemy disrupted God’s beautiful creation. And the first gift Jesus as the incarnate Word offers us having defeated the Enemy is Peace and rest in his Presence. And then just as in his creation in the beginning, he goes about bringing order out of our chaos, and fills our emptiness with good things.

    You, Hannah, have grabbed that gift of rest in Jesus, and the gift of his creative power, with all the protectiveness of a Mother Bear for her injured Cub. You have chosen to be full of joy in the midst of your pain. Full of courage in spite of the easily set-off nervous system Jude’s little body degenerates into those nasty seizures. Undaunted by the constant battles you fight from the moment you wake up in the morning.
    How? Allow me to remind you of a little used promise in the Bible, which came to mind as I read the close NON-VERBAL communication taking place between Jude and you, Jude and Sully his Dad, Jude and everyone who takes the time to listen with their eyes, with their ears, and most of all, with their hearts.

    “The Lord your God is living where you live. He is a mighty Warrior [seems like Jude the little Warrior takes after his Daddy God!!]. He is most happy with you, filled with joy. With his love, he will calm ALL your fears. He will rejoice over you by singing you love songs.” — Zechariah 3:17, MBP

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