My Parenting Journey: Blessing in Disguise
My Parenting Journey: Blessing in Disguise
I lay down in the deafening silence waiting to hear your first cry. I had lived my life up to that point thinking that there is no need to worry, good things will always happen to me, everything always turns up to be okay… it is these few moments that changed this fundamental belief and my journey with worry had just started.
You were immediately rushed to the ICU… it wasn’t until 10 days later that we were able to hold you for the first time. It took 6 weeks before you could come home… we waited months and months before we saw your first smile and it wasn’t until 3 years later that you slowly walked into our arms.
After a long journey of tests searching for the root cause, we finally got our answer… You have me, this person from Beirut, Lebanon meeting this guy from Delhi, India in Upstate NY, out of all places, and ending up with a baby girl with a rare and random genetic condition that only dozens in the world have. I just wasn’t sure anymore… is everything going to be okay? Are good things going to happen to me?
We decided to take matters into our own hands. I left my job, we relocated to Colorado for a needed fresh start, started a company supporting families with special needs and put my focus on you and the diagnosis. These bold steps we took opened many doors for our family. Through social media, we are now connected to 39 families around the globe that have the same diagnosis. We have a group of 9 researchers excited to learn more about your stories and thanks to a wonderful family in the same boat as us, we have a starting point towards fundraising the required $12,000,000 to get us to clinical trials. And you… sweet baby girl… you are making tremendous progress; the focus on you is making a big difference in your development.
Reflecting back, I realize that having you, with your uniqueness, is nothing but another good thing that has happened to me. I got the opportunity to become a better person. I got the opportunity to spend every little bit of my energy on something that matters so much. I got the opportunity to meet wonderful families from around the globe and to manage a cutting-edge research project that has the potential to change the world.
And you… sweet Yara… I can’t begin to tell you how you fill our hearts and lives with joy and love. Together, we will witness changes that will empower generations to come. Together, we will enjoy every bit of our journey… together we will make this world a better place.
You are my Blessing in Disguise. I love you to the moon and back and to the moon again…
Editor’s Note: You can learn more about Jordan’s Guardian Angels see Carole and her family at: https://www.youtube.com/watch?v=tNUhvSLTK3M For more information on Rare Disorders, check out the National Organization for Rare Disorders. Jordan’s Syndrome or variation on the gene PPP2R5D is a rare and random genetic mutation. The condition is newly discovered and not a lot is known about it as of yet. Some characteristics include global developmental delays, larger head size, hypotonia, delayed speech, and potential seizures. With the variation affecting the function of the brain and not the structure, researchers believe there is a potential for treatment… a treatment that doesn’t exist as yet. We have a team assembled searching for a cure or even reversal of the gene, learn more about the research. Visit www.jordansguardianangels.org and www.ppp2r5d.com
Are YOU Connected? Connecting with other parents helps you discover that you are not alone! Join 4000 members across Colorado who support each other in parenting our sons and daughters with disabilities and special health care needs! Visit: www.p2p-co.org
