The Before and After of a Special Needs Diagnosis
Having a child is life changing. Having a child with special needs is life altering. When our daughter was diagnosed with a rare chromosomal disorder called Prader-Willi syndrome at just two weeks old, it came with a seemingly endless list of challenges and impossibilities. She would never feel full. She would never graduate from high school. She would never go to college. She would never live independently or get married or have children. Never. Never. Never. Littered everywhere I turned. I wondered if it also meant she would never be happy, and I wondered if it meant I wouldn’t either.
Eliza is nine as I write this post, and I have learned so much in that short span of time that I almost feel as though I have become a different person, or at the very least, that my life can be split in the “before” and the “after” of our unexpected landing in the NICU and then the “special needs” world. When she was a baby, the relatable struggles around feeding and sleep schedules that we had experienced with her older sister were kicked up ten notches. With Eliza, we were navigating feeding tubes, oxygen tanks, and, at one point, even a full body cast. And when she reached school age, the parent/teacher conferences expanded into IEP meetings, incorporation of every kind of therapy imaginable, and an uphill (and ongoing) push for inclusion and understanding. I stepped into a new arena of both tender vulnerability and fierce advocacy.
What has changed since having her? Everything. It has colored every experience since, and I am realizing more and more that I have far more questions than answers, far more curiosities than certainties. And while that may have terrified me at the start, that fear has mostly fallen away and left wonder in its wake. I wonder what I will learn next, I wonder where Eliza’s life will take her, I wonder when and how our world can embrace neurodiversity as simply different and not less than. Bonus points if we can begin to see the differences as truly beautiful and awe-inspiring, if we can lean into that lens as a teacher and guide to perhaps see things even more clearly than we would otherwise. It’s a big dream, but like all big dreams, I believe that it starts small.
If you, dear reader, are at the start of your journey, wondering if life will ever be the same, know that I get it. I really do. If you’re like me, you may be wondering if you can handle it all, and you may be wishing desperately that this wasn’t your path…that you wouldn’t have to find out the hard way. You may even wish you could go back nine months and undo it all. I did. And I felt such shame and isolation in that thought. But I am here to say if I could go back eight years and nine months, I wouldn’t do it for the world. I don’t want to go back to life before Eliza…not for me, not for our family, and certainly not for her. She is a happy kid who brings love and light into our world in shades we would have otherwise missed, and I am grateful beyond measure that she’s ours. I am grateful I get to witness her journey, with all its twists and turns, because it brings me to my knees with awe and wonder again and again.
Borrow my confidence if you need to, but trust that even if life is never going to be the same, you just may find you wouldn’t want it to be.
