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.