Wow!! 8 years already!!
Eight years ago, my youngest child was brought into this world! The words dwarfism, achondroplasia, DNR , small ribs, and so on floated around us. We knew if she took a breath, we would fight with all we had to keep her doing just that!! This girl came into this world with an ability to overcome, and adapt!
Lyric Orianna , song of new light! Yes that is her name !! She is the brightest light and she is never afraid to shine!! Oh this girl has taught us so so much!! She is a force of nature !!
You see, I had never actually met a person with dwarfism, I was absolutely out of my realm of knowledge!! I was scared I wouldn’t be a good mother to her. I knew nothing about dwarfism, nothing about the needs of a child with achondroplasia, but I soon learned 80% of children with dwarfism are born to average height parents. I was not alone and I would have support !
So, we learn new things every day. The first two years of her life, we took 14 trips !! Yep that’s right 14!! Because western South Dakota does not have pediatric specialists!! Not a single one!! And finding doctors that had experience with dwarfism was not easy. Did you know that 75% of marriages fail when you have a child with different needs?? I find that very hard to process. I was stunned that only 1 in 4 marriages survive having a child that needs a little more. Oddly after all these trips I understood why!! It’s difficult to maintain a connection when you are apart so much.
Dwarfism is a different world, and parenting rules go out the window!! We have had to teach her to climb on things, that we did not allow the other kids to climb. We had to learn that our daughter doesn’t need super warm layers, she will overheat. And mostly we have learned NOT to judge another parent for how they do things!, because we do a whole lot differently!!! Yes , there are many challenges that come with achondroplasia, but so many more rewards!
Give them the skills they need to live a life filled with joy! Love your children as you would want to be loved. Embrace each struggle with an open mind and heart. Learn from your children for they will teach you!! I wouldn’t not change a single thing about her! I will always fight for her to live her best life!
You will hear a lot about my kids as I get comfortable writing this blog. My kids are my world. I didn’t want to be a mom but I sure do love it 😍 I love the joy children bring into this world. I love the laughter and the random hugs. But mostly I truly enjoy that being a mom I have learned to go with Grace. To grow and learn everyday, to find the lesson and move forward.
We are truly blessed to know this child and to be her parents !! She is and always will be the stubborn, sassy, strong willed, loving person that she was meant to be. We will always be standing beside her in love and grace.
By giving Lyric the space to grow into the person she was meant to be , has reminded me that as adults we need this space as well. We need to grow and evolve and have to space to be who we were truly meant to be. My hope is that you are getting that space !!
Love and Light