What did you do with that person that was always secure in her constant planning? You always knew what was going to happen throughout the course of the week and planned every vacation with an itinerary that would make your own Outlook calendar cringe. So when you thought you had this birthing routine around and had your daughter on April Fool’s Day I bet you thought a cruel joke was being played on you. You weren't expecting your daughter to have such a hard time breathing, the chaos of her being whisked away to the NICU, and then the diagnosis - Down syndrome.
Of course, you didn't expect all of those events to occur. You thought' you'd be home in two days and with the rest of your kids. This was going to be easy. I guess the shock took your breath away so you went into a daze. Sure you went into mom mode to make sure your daughter was going to be okay. You stayed up late googling everything about Down syndrome. I remember you even started to google how many people with Down syndrome have run a marathon. You were looking for the positive in the situation. You were looking for a plan.
Well, isn't it funny to look back on all of those events, the medical appointments, the therapies, the surgeries, giving up your vacation time to replace it with doctors’ visits and extended stays in the hospital that you were soooo enamored with the words Down Syndrome and stressed with the comings and goings that you would have no idea that she would actually be the biggest joy in your life? That you would actually be a shoulder to lean on for other parents traveling this journey with you. You would bond with more families that you have ever bonded with before.
You made it through those early dark moments and came out of the tunnel and into the light. You learned how to make Down Syndrome just a normal part of your life. You learned that Down syndrome is just a medical definition that does not define who your daughter is. She is creating a new definition for Down syndrome in exceeding all of your expectations that you gathered while reading about it. If only, the definition could capture the emotions of joy you have brought to so many, the opportunities you have been afforded to help others, and the bond that your family is growing.
You've let go of that person that was always planning detailed itineraries of her vacations and trips, laying out plans for everyone to follow. You’ve slowed down to inhale the moment. You’ve learned how to look at situations with introspect, understanding, and reflexively. It took a disorienting experience like hearing the words Down Syndrome to show you that life is just that - unplanned.
Photo: Kate White and Nicole (mom) together after completing the Flying Pig Piglet Race in Cincinnati, OH. Nicole's dream is to one day run a marathon with her daughter.
This letter is part of DSDN's October Down Syndrome Awareness Month campaign. We asked our members to write a letter to themselves during the time they received the diagnosis. Do you know a parent with a child under the age of 4 who needs connections and support? Let DSDN help and get started here.