Adjusting to Luke’s Diagnosis
Six whole excruciating, frustrating weeks passed from the time Luke was born until we finally received his official genetic karyotype results, which told us he has Trisomy21 (Down syndrome). For Chris and I, it was just one more way that our postnatal care was completely bungled and, in my opinion, exposes even more holes in the medical system where people with more complicated care needs get lost in the cracks.
We were told that once Luke was born, a pediatric geneticist would “hopefully” be able to give us an on the spot opinion of whether or not he had Down syndrome — but as you already know they couldn’t give a yes or no opinion at birth. The hospital asked for the information for Luke’s pediatrician so the lab could send the bloodwork results there. Then, we were told that we should get the results of Luke’s genetic karyotype (bloodwork) in no more than two weeks. Three days after he was born, we were discharged from the hospital and sent home with these pending results hanging over our heads. Luke was born on December 3rd, meaning we should have had the results by Christmas.
Two weeks later, and the call still hadn’t come in. I called Luke’s pediatrician several times asking if they received his report and they hadn’t, and on top of that they didn’t even know who to call and ask about it. I called the practice where I had received my prenatal care and all they said was the result should be sent to the pediatrician, who would call us.
In the meantime, I was struggling. Postpartum anxiety and depression were setting in, and I was having a hard time adjusting to life with two kids, struggling to feel connected to Luke, and having this never-ending internal battle in my head about whether or not I thought he had Down syndrome. Sometimes I would look at him think I could “see it” and other times I would look at him and think I couldn’t. When he rolled over before he was a month old, I thought for sure no baby with Down syndrome could do that. But he also didn’t cry much, or coo, or make those cute little newborn baby noises, which would lead to me sitting on the couch at midnight obsessively going down the Google rabbit hole trying to find something that would confirm, or dispel, my anxious thoughts.
Finally, I had my six-week postpartum checkup. I remember sitting in the office with my midwife just crying and unloading about how I had been feeling. I told her about all of my fears, frustrations, the way the anxiety was making it hard to function and do everyday tasks; the way it was overwhelming me so much that there were moments where I couldn’t even breathe. I told her that we STILL had not received Luke’s lab results, and she told me to wait a moment while she went to her office to see if she could pull them up. When she came back, she handed me the results and said it was as they suspected — Luke has Trisomy21.
Honestly, finally having an answer gave me some peace; but I would be lying if I said I didn’t struggle to accept the answer we were given. The weeks that followed were still full of emotional ups and downs, gripping anxiety, and anger at God. I felt like I was legitimately having a mental breakdown and my mental state was quite honestly terrifying. Every day was a battle in my head of thoughts like “why is this is happening to us, this is so terrible, how are things ever going to be better”, followed by thoughts like “what is wrong with you? Be thankful he’s healthy, be thankful he’s happy, he’s so snuggly and sweet and we’re lucky just to have him”. Other moms whose children have Down syndrome would tell me that one day I would look back at the early weeks and wonder what I was so worried about. I prayed and prayed for that day to finally come so I wouldn’t feel so upset and overwhelmed.
I can’t say for sure when those thoughts and emotions subsided, but slowly they became less frequent. The future started to look brighter and that darkness that threatened to overtake me disappeared. I owe so much of the healing and acceptance to my husband and closest friends. They listened while I yelled, rambled, and vented about how I felt and how upset I was. They held me and let me cry, and they cried with me. And finally, when there were no tears to be had or words to be spoken, they prayed over me fiercely with a passion and love I had never known.
Now, Luke is 4 months old and I can say that Down syndrome isn’t as scary as I thought it would be, and it isn’t even a part of our daily conversations anymore. I see now that those other moms were right, I don’t know what I was so upset and worried about. Luke is far more like his sister, and any other baby, than he is different. He’s just Luke — extra chromosome and all.