January 3rd marked 6 months since Henry passed away. I miss him. I miss him so much. His smile, his hair, his laugh that I'd only heard a couple times, his patience with Hattie, I miss holding him, feeding him, bouncing him on my knee, I even miss his poo-splosions, his grumpy days, and when he peed while getting his diaper changed getting me, the wall, floor, or something wet. I miss everything about my sweet boy.
I had a big breakdown in the middle of the night on the anniversary. He died at 12:34am so I can never fall asleep before then on the 3rd each month. I think being so busy with the holidays and visitors and everything, that it just built up in to one big breakdown. You can't keep yourself from feeling the sadness. You can push it back, keep yourself distracted, but it always leaks out eventually and then you're overwhelmed.
I read a book that explained grief from losing someone in this way: the grief is always there, even decades later. Often it's on mute, or playing quietly in the background, but there will inevitably and unpredictably come a time when the volume will be blasted up to 10 and all you can hear is the grief. But after a breakdown (in my case) it goes back to playing softly.
I don't think my grief is ever on mute (yet) but I liked this explanation. I might not be wearing my grief on my sleeve (I usually put on a good face in public, some days it's harder than others) but Henry's loss is always with me, playing at different volumes on different days.
We still don't know why Henry's heart suddenly stopped functioning. A viral cause has been officially ruled out, so a gene is the most likely culprit. The official cause of death is dilated cardio myopathy, to put it simply, an enlarged heart. We have banked Henry's DNA and are in the process of getting genetic testing done.
Assuming the cause of Henry's DCM is genetic, there are three scenarios. One: Kurt or I have a dominant gene for DCM. This means Kurt or I are at risk for having DCM and all our children have a 50/50 chance of having it as well. Two: Kurt and I both have a recessive gene for DCM. Kurt and I are both safe, but there's a chance all of our children could have it. A much smaller percentage...I can't remember exactly. 3: Henry was the first genetic carrier in our line, meaning one of his genes mutated/was defective and caused his DCM. I don't like the terminology (mutated/defective. Henry is perfect!), but this is the best option. Kurt, Hattie, and I as well as any future children have the same risk for DCM as the general population.
So, we're getting genetic testing done on Henry's DNA. There are 30-40 genes known to cause DCM. So if they find anything on one of those (sorry, don't know the terminology) then we know the gene that caused this and can check for it in me, Hattie, and Kurt. Or they find nothing. Only so many of human genes are mapped. Or they find something on a different gene that they currently aren't aware of that causes DCM. This will go into the database and maybe someday they'll know what it means and can give us an answer, no guarantees. So basically, there's a better chance that we won't get an answer than we will with genetic testing. But it might, you never know until you try.
We also banked Henry's DNA. It will be preserved for 20 years. Every year genetic testing is improved- there are more genes covered and more diseases discovered to have a specific genetic cause. So if we don't get an answer we can test Henry's DNA again in the future when testing is more extensive and likelihood of receiving an answer is higher.
We've been working with a genetic counselor at Primary Children's and she has been awesome. So incredibly helpful and informative and is trying to get all this done at no cost to us. We'll probably have to pay something, but I'm glad to have her on our team.
The day we went to talk to the genetic counselor for the first time, we also got Hattie's heart checked out and spoke with one of Henry's doctors and a social worker about the results of Henry's autopsy.
They gave Hattie a clean bill of health! For now. We're scheduled to come back every 5 years, unless we get an answer from genetic testing that would make the check-ups unnecessary. Hattie did amazingly well at the appointment. She held still for the entire echocardiogram. She was given a coloring book, markers, and nail polish at the end of her appointment. So not a bad day for her after all!
Hattie's appointment was in the outpatient building, but we met with the doctor in the main hospital and walking in made me sad an anxious. I'm glad the social worker is thoughtful and scheduled our meeting to be somewhere other than the PICU. Shelly (the social worker) came down and met us in the lobby. We went up to a conference room where we met Dr. Van Dorn. She called the time of death. It was hard seeing her. She's incredibly kind and patient both when we were in the hospital and during this meeting, but she's associated with the worst moment of my life.
After sitting so still in her own appointment, Hattie wasn't keen on sitting still during our meeting. I let her paint my nails with her new nail polish and then Shelly volunteered her own nails for painting. And when she was done, Dr. Van Dorn offered to let Hattie paint her nails too! It was quite sweet and funny in such a dismal moment. Hattie is seriously the best. I'm so thankful I have her. Can't imagine doing this without her.
I can't remember much that was talked about that I haven't mentioned- cause of death was DCM, nothing structural was wrong and no virus was present in his heart. Both Dr. and Shelly reassured us there was nothing that could have been done. His heart was past fixing and even coming to the doctor sooner in the day might not have done anything. The doctor in the ER/pediatricians office could have missed it and even if they had, they couldn't have stopped the DCM. Not indefinitely. It does give some comfort, but the 'what ifs' are always going to be looming somewhere in the back of my head. At least for the foreseeable future.
Tomorrow Henry would be 10 months old. Would he be on the verge of walking? Hattie walked at 10 1/2 months. Standing? Eating solid food like crazy? How many teeth would he have? What size clothing would he be wearing? Would his hair have started to grow yet? Or would he still be basically bald like Hattie was? So many questions.
Almost everyone that I've talked to who has lost a child, at any age, have said that the first year is the hardest. You have a whole year of firsts without your son or daughter and after that it gets a little easier. I hope that's true! Less than 6 months to go until I find out.
