Member of the Month: March 2018 - Photo of the Month: April, Dec 2018, Apr, Sept 2019, February 2020
Thanks for taking the time and emotional effort to share your experience mmmike. I can't begin to imagine what that's like. My heart goes out to you and your clan.Amy,
Thank you for your perspective on my recent post. Please know that it was not my intent to judge or show disrespect to the parents. I do not know what condition(s) their child has, but having had a child - first born daughter - born with a very serious medical condition, I felt that I had something to offer.
My daughter was born with Epidermolysis Bullosa (blistering of the skin). I won't go into the details - you can find information on the disease here, Epidermolysis bullosa - Wikipedia. But believe me when I say it is a horrific disease.
At birth, we knew something was wrong. Within 24 hours she was sent to a Neonatal Intensive Care Unit across town. No one knew what she had. She was placed in an infant isolation incubator as it was believed she had a severe staph infection. She was bathed in Betadine solution (antispectic) which reacted horribly with her skin. Within 72 hours 90% of her skin was denuded. It only got worse from there.
Given her condition we could not touch her without first scrubbing and gowning up. We couldn't hold her, comfort her, feed or nurse her or do any of the things that new parents normally do with their newborns. She spent 10 long weeks in the hospital - 3 weeks in a specialty unit 150 miles away - before we could bring her home. Even then, day to day living was hell.
Prior to her birth, I was vaguely aware of the importance of infant bonding with a parent(s). How do you do that when you can barely touch or hold your baby? The only way we could hold her for almost a full year was to carry her around on a gel pad to keep her skin cool and to prevent rubbing the skin, which resulted in more blisters. For the first year of her life she only wore clothes if we had to leave the house.
So, how to bond. One way is through skin to skin contact. Obviously, we couldn't do that. Are you familiar with the saying, "the eyes are a window to the soul"? Because we couldn't comfort or touch her, at least not how one would normally, we had to find a way to "communicate" with her to 1) get an idea of how/what she was feeling - pain, hunger, etc. and, 2) to bond. We only had the eyes to work with, so to speak, so we spent long hours just gazing into her eyes. talking to her, paying attention to what her eyes were telling us. Over time, we learned to recognize when she was in pain vs being hungry, for example.
If you've ever given a child medication that makes them drowsy, for example, you can see this in their eyes. Someone suggested something similar for the use of CCO et al. Look for the "vacant" look in their eyes, I believe is what they suggested.
I was sincere when I said "look into her eyes". Will it work in this situation? I don't know. But I do I believe they will come to "know" their child well enough to know whether the medicine is working and whether she's had to much.
Again, I apologize if my comment offended you or anyone else. I didn't mean to judge or assume and would never downplay the significance the impact of having a child with a serious medical condition has on a family.
It helps a lot to have that perspective on the context of your comment. In particular I think the most helpful clarification is where you state:
This changes the tonal effect of your first post considerably, so thanks for that.But I do I believe they will come to "know" their child well enough to know whether...
People have been trying to respond to a father who was asking for help in an area where they are struggling to read the signs - or at least feel like they are - so Oldbear was seeking to spread the field of experience with input from all over as to what they might have eyes out for in the child . It sounds like you have a lot to bring to that conversation. I know it takes time and can be a bit emotionally draining to share such hardship, but I do think your second post is really helpful, much more so than the first - so I'm glad I inspired you to write it.
There was absolutely no offence taken here, so no need to apologise.
Nothing but best wishes of strength and happiness from me to you.