This question hurts my heart a little. To insert blame just feels like shame should be associated with our diagnosis, and it is not at all. We are proud to have a handsome, healthy, strong, smart son who happens to have Down syndrome. Down syndrome occurs at conception and has nothing to do with race, nationality, socioeconomic status, religion, or anything the mother or father did during pregnancy.
Even though I️ knew this from the beginning of our journey from my nursing background, in all honesty, I fought feelings of guilt. We had a genetic screen done because of me. Because of my rare autoimmune lung disease. I️ went over every decision I️ made with my body from over the counter and prescription medications to food and drink choices. I️ scrutinized my own medical history : every surgery and every hospitalization in my teens and early 20s. Yet I️ knew in my mind that we should carry no blame or fault… my heart would not listen- not at first. The emotion was too raw.
The week after learning our genetic screening held 99% chance of Down Syndrome, we prayed for Henry to be whole, for his being to be blessed, for his every system to be complete and untouched by defects. After praying out loud together and actually saying the words, I️ was smacked back. My eyes flew wide and my heart heard, “But my child, your baby IS whole. Do you doubt he was weaved together in your womb exactly as designed?” I️ stopped. My heart stilled. My tears ceased. I️ had heard it. Felt it. I️ almost couldn’t breath. The thought was so powerful and unlike anything I’ve ever experienced before or since. I️ instantly felt shame and remorse for wishing my child to be anything other than exactly how the Devine was stitching him together within me. After that moment James and I️ really talked- More than we had in a week.
We agreed the test could be false- positive, or truly positive but would either outcome change anything? No. Could we bring ourselves to go to a clinic? Never. We had seen our itty bitty 9 week old baby in ultrasound. He had waved with his tiny budding fingers. He was still ours. We made him in complete love. Nothing could change those things. Psalm 139 on our hearts and fear given over to God, we set out on our journey to meet our son.
I want to assure everyone that giving up worry and anxiety is not easy and we didn’t end our fear there. We had to repeatedly give anxiety and fear over in prayer through our pregnancy after every appointment with high risk maternal medicine, after every discouraging professional consult, and after every medical personnel expressed any pity, apology, or callus. Henry is here- whole and beautiful. Henry is amazing and is tackling life with gusto and I️ still struggle with anxiety. I️ worry over bullies, IEPs in school, sports, his health, and so much more.
I️ still have to do my breathing exercises. I️ still have to recite my calming mantra. I️ still have to pray.