Like Seattle rain, the tears were persistent and recurrent for months. Hearing the words, “Your prenatal screening shows a high probability of Down syndrome,” followed two days thereafter by an ultrasound and the doctor’s words, “Well, you saw the ultrasound. This looks like Down syndrome and a cystic hygroma. You’ll need to come back for another ultrasound in a few weeks.” It was the first and last time we ever spoke to that doctor.
Diagnosis Day.
It’s burned into my memory. The first year or two, it felt like a swell of anxiety approaching around May each year – watching spring come alive, and the weather starts to turn – only to feel the anxiety creep back in that accompanied that day. That is what trauma will do. I can still remember being told that another Mom sent us a “Welcome to the club!” message while fighting fear, anger, and tears, thinking, “I never asked to join this club!”
But, I decided early on to turn Diagnosis Day anniversary into a gratitude day. I used the first, and each anniversary since, to send messages directly to the very kind, loving, and expert care team who took care of us after that first initial horrible diagnosis day. And, more importantly, to celebrate the most beautiful amazing daughter that we have been gifted for exactly who she is – including her diagnosis!
This year, five years later, Mother’s Day and Diagnosis Day are one and the same. It feels like an added celebration to me now. I wish what I could tell the me of five years ago is that I would be unbelievably blessed to parent this amazing child and that she would have already given me far more than I could ever give back to her. That the unrelenting grief and mourning would be a passageway to immense love and joy. That Down syndrome is not what medical school books taught me that it was. That Down syndrome is not a narrative of a grave disability that society would have one believe.
My daughter is 4. I have no idea what the future holds for her. I don’t know what she will be able “to do” – it does not matter. She is spirited, opinionated, hard-working, loving, kind, and has infectious laughter. She gives the most amazing hugs. She loves kitties and dolls and swimming and preschool. She loves the slide at the park.
This Mother’s Day, I am beyond grateful. To a Mom on Diagnosis Day, this is what I have learned:
1. Our human value is not attached to our doing. Our ability level, education, or what we can “do” with our mind or body does not define our value as humans. It seems like an obvious statement: But how often do we internalize our worth based on what we can or cannot do? I have to remind myself of this often: My value is not based on my doing but on my being. Without my daughter, this is not something I think I could have truly learned. It’s a lesson that also provides value to all of my children.
2. Do not underestimate a person with Down syndrome. People with Down syndrome are beautiful, fun, creative, and capable.
3. The people I have met in the Down syndrome community are amongst the nicest humans.
4. My world is bigger, not smaller, for having a special needs child. There are exhausting levels of planning, appointments, therapies, and things that my typical children do not need, but I would not change it for anything.
5. I don’t know what her future holds; she may live with us forever. Well, how lucky would I be to spend my lifetime with her joy and love right next to me? My husband feels the same.
6. I am a better doctor because of her and the process of grieving that came with her diagnosis initially. I can walk with my patients better in grief, with empathy toward disability or what feels to be life-altering for what is occurring in their lives.
I am grateful to be the mother of three amazing, unique, fun, and beautiful children. I am, this year, thrilled to co-celebrate Mother’s Day and Diagnosis Day.
Jennifer Mills is an internal medicine and palliative care physician.
