This week was probably as normal as it's going to get. Work. Boys. Fights. Overall lack of sleep. Three nights on the floor in the boys' room. Work. Losing a phone. Without insurance. You know, normal, everyday life. No major reminders of Everett. Pushing it out of the brain. Just.... forgetting as long I can. Without doctor's appointments, it's a lot easier. We have another one (doctor's appointment) Tuesday. With an ultrasound. I'm mixed bag on this one.
We chose to stop the genetic testing with the basic genetic scan and the screenings that are normally done. Nothing. We chose not to do the microarray that would determine if there was a small chromosomal imbalance-- a deletion or transmutation-- that could cause Everett's problems. Or if could be an inherited chromosomal defect. We talked and talked about it, but nothing that could be found would change anything. It doesn't increase the risk of another pregnancy ending in tragedy. It doesn't particularly influence the boys in any way-- not that can be changed, at least. In the future, if we choose to have another baby, we'll do ALL the testing. And we'll make sure that the boys do as well. That's all we can do. No name. No syndrome. No .... explanation is going to change anything. And there's enough financial strain in the future without adding to it with tests to assuage curiosity. It won't change anything.
The mixed emotions come from... wondering. Wondering why we're doing another ultrasound. Do we just monitor his.... development? Do we just monitor for the heck of it while he's moving? What's the point? Even if the VSD improves in-utero, there are so many other complications that it wouldn't matter much. Is there even a chance of improvement? And if there is, ...will it really be an improvement? One conversation I had a week or so ago sticks with me. When discussing a friend's experience, an answer to a very hard question for a family faced with incredible tragedy of two children, one child who barely existed, but lived several years with monstrous amounts of medical intervention and one who lived only hours after birth, a father responded with much wisdom: there are some things worse than death. And what if that's what we learn if there are .... 'improvements'? Do we learn that there are some things worse than death? Do you hope for improvements? Or do you just hope for the end? What on earth do you hope for? And how do you hope for either? Or do you hope for anything at all?
This week will be anything but normal. Or I guess just a new part of normal. The reminders. The times you can't just.... forget. Or pretend to. Waiting for the visit on Tuesday. Driving back down. Spending another $4 to park your car to be reminded visually and medically that Everett's life will be too short. Or to be told that it will be ...something worse than death. There will be much judgment over that thought, I'm sure. But... unless you've really looked into the ultrasound face of your little boy.... and seen the fluid on his brain, parts of his brain missing, watched his blood flow without much pattern in his heart, or seen the bubble of intestine in his lungs-- watched him curl himself into such a tiny little ball that the medical folks comment on it every time-- you have to think it: there are some things worse than death. And improvements, without complete healing, would create just that: existence. And is that really life? Could I handle that? Are we willing to give up everything, including so much of the little boys we have now that are completely healthy? Could our marriage survive that? Could our finances hold up to that? Who thinks that?!?! And better yet, what kind of mother WRITES that about her baby? How do you hope it will all just be .... over?
And yet, how do you not hope for improvements? How do you not hope to hold your baby for years? How do you not hope for something positive in the ultrasound? How do you not hope to have him recognize you? How do you not hope he can feel you love him? How do you not want something more?
But how can you? How do you wish that on your two wonderful little boys? How do wish that on your husband? How do you wish that on your family? How do you wish that on your life? I am reminded, some things are worse than death. Some things are harder than death. Some things. Some things create mixed hopes. And where there is mixed hope, there is always fear.
And yet, I still want to hold him. I still want a live delivery. I still want him to see his mama's face and know.... KNOW how much she loves him. I want him to KNOW how much we wanted him in our family. I want him to KNOW. I want him to FEEL my love. And I don't want him to feel anything else. I don't want him to gasp for air, or ache in pain, drown in his own chest fluid. I don't want him to feel anything but love.
And I'm not sure, with mere improvements, I can assure him of that. I'm not sure with improvements that he will feel my love, but rather wonder where his protection is? I'm not sure that if I cannot assure him a life free of constant struggle that I can say I love him the way a mother should.
So how do you hope? And what do you hope for? How do you wait for an ultrasound without expectation of something? How do you just... wait?
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