A few weeks back, I took Sorkin, my three-year-old, to the doctor. His ear had been bothering him and we wanted to be safe/check for an ear infection. At his appointment, his primary care physician heard a heart murmur. I am glad we went to her since she has seen him since he was a baby and so she noticed the difference right away. She decided we should get an echo to clear him of anything concerning. Tomorrow is Sorkin’s echo. It will be our first time back at Children’s since Emerson died which is a lot of baggage I am not thinking of or trying to process in advance. So that’s going to be a hot mess/train wreck of it’s own.
No, tonight and every day since we went to the doctor, we have been anxious and worried about Sorkin. It’s hard not to be worried and I am sure nothing will feel better until after a cardiologist tells us everything is fine after looking at images of his heart.
Here’s why: we’ve done this before. We’ve had a kid with a small anomaly found at a routine procedure (my ultrasound). We were told not too worry and that while it was “something” it was probably “nothing big”. Then we received one of the worst diagnoses for heart defect: HLHS. Only 1 in 10,000 kids have this heart defect. It changed our life. It’s still changing our life. Emerson was more sick than we could have known at that ultrasound. He fought for every day of his life and it’s a miracle he lived for 4 years and 4 months– it’s not enough time but his life was a miracle for us.
Still, our experience has created deep fear around small concerns. I really appreciate our PCP for not minimizing it. I appreciate that she didn’t try to reassure me that everything was ok and move on. Instead, she recognized our family history, acknowledged Emerson and my fears, and decided that an echo would be the best tool in this situation to ensure Sorkin’s heart is ok. She asked where we wanted to go and who we wanted to see and made sure the referral reflected those requests. She did provide assurances but never once did she says “It’s probably nothing” or “don’t worry about it”. She just knew that we would worry about it.
And we have worried about it. Every day. Every time Sorkin is tired. Every time he stops playing before his friends or cousins. Every time he seems unwell. I question if he is a.) just sick (it is winter after all), b.) just tired after playing (he is only 3), c.) actually tired from a lack of sleep (he goes to bed at 9 and gets up at 5– not great), or d.) if this is an undetected heart defect. The worry and concern it can’t go away and I don’t think it should go away at least not until we have the echo and then talk with the cardiologist. Then we will know.
It’s been hard with Sorkin since Emerson died. He is so emotionally intelligent and complex. He understands when we are sad or upset and he comforts us (he sings a song from Daniel Tiger: “it’s ok to be sad sometimes, little by little, you’ll feel better again”). Then at random times he misses Emerson hard. He struggles with understanding death and how it will affect him. For example, last night Matt was putting Sork to bed. He, Sorkin, suddenly talked through the ambulance pick up of Emerson: how the EMTs came into our house, how he stopped the show, then he was so scared, then they took Emerson and Uncle JC stayed with him. Then he said something to Matt along the lines of the ambulance did not bring Emerson back. It’s heartbreaking for us but we help him through it the best we can. Emerson was his big brother and our lives were centered around his care for most of Sorkin’s life. Most days I love Sorkin’s memory and emotional intelligence; I am so happy that he has those memories of his big brother. Then other days I feel so lost. Matt and I don’t know how to parent through this pain. We do the best we can. We tell him the truth as best as we can. And it hurts. The whole thing hurts. It should hurt. It’s ok that it hurts. It’s ok that Sorkin hurts, but it’s unnatural for a mom to help their child through the death of a sibling.
And now my sweet Sorkin has a heart murmur. I keep trying not to get ahead of myself but I catch myself thinking ahead and playing out “what ifs”. Mostly what if Sorkin does have a heart defect and needs intervention? How can we help him through that? How will he ever understand that Emerson’s life and history is not his? I think the answer is we don’t do it alone. We use supports (like therapy) to help Sorkin through it. Again, I know I am getting ahead of myself but it’s hard not to after Emerson. We’ve been told previously that it’s “probably nothing” and to “have a good weekend” while we wait for our echo. I am continuously grateful for the amazing care in Minnesota. I believe that Emerson would not have made if 4.5 years if we had stayed in Chicago. He would not have made it through the first harrowing surgery. There is genuine care and bedside manner here which I found lacking in our medical journey with Emerson in Chicago.
So we will say extra prayers tonight and see what tomorrow brings.