New Years Eve, Feat. Fireworks Through The Blinds

We had some plans for News Years Eve. Like many of the plans we make, they changed.  I’m not sure how the ‘constant change’ will eventually affect Elias’ older siblings but I don’t think they enjoy being pushed on to other people at the last minute. My daughter can’t stand it when we rearrange the furniture in the house, so one can imagine how she feels when the ‘rug’ is pulled out from under her feet. I suppose time will tell how things will play out, but not without many prayers for the best outcome.

Elias was breathing heavy all day. He’s bounced back many times before and typically breaths heavy every day, but not for this long and we can usually get him to settle down after some good suctioning and a good cough or two. This day nothing we could do would help and eventually we made are way to the hospital. It had been seven months, at this point, since the last visit and we were all feeling pretty comfortable with the consistency of being home, even if we couldn’t get out of the house together much, as a family. In these times, I can feel the control slide off my body into some unknown place and become replaced and infected with anxiety. I know this feeling too well and there is nothing I can do. I am the guardian and protector of my son and knowing that something will come between me and my son fills me with anxiety, fear and doubt. Many things already come and will eventually come between us; medical equipment, nurses, doctors and even the ground. It’s true that I have to live in the moment and I mostly do, it’s the only way to survive and keep pressing on, but I know that the future will be a ‘moment’ as well, even if it doesn’t exist now. I suppose that is why many people are anxious.

We arrived at the hospital some time in the late afternoon or early evening and went through the trauma room, mostly to be able to get up to the PICU faster rather than going through triage. A lot of the doctors and nurses know Elias by now and we called ahead, so there was somewhat of a preparation before we got there. The last time we were in the trauma bay, back in May, there was a teenager one curtain over that was screaming profanities and idle threats. I don’t know what was physically wrong with him but mental illness may have been the bigger issue. The doctors and hospital staff tell us all the time that they wish all the parents were like us. We don’t do anything special other than love our son and learn what he needs and then try to meet those needs to the best of our abilities. This makes me wonder what kinds of ‘hell’ they see everyday, but I think I have some idea. There are kids that live at the hospital, abandoned by the parents because no other facility  can hold them or is equipped for their needs. Unfortunately, the hospital is probably the best place for many of these kids, since the nurses here are pretty caring people, generally. At least they’re not being neglected or abused by their parents and there is some measure of stability. And if they were put in to a home, if one even existed for children; what kind of care would they get? People making minimum wage to take care of the most vulnerable and fragile children in our society will never be a situation that ends well. Comparably nurses are paid fairly well and have a higher level of education than people that work in group home settings, so it follows that the care would be better.

So here we are waiting out the storm of the affects of pneumonia on our poor child’s lungs, wondering when we can go home and how long he can stay at home after that. We are always reminded that one can not hold on to anything forever, but we do our best to forget this cruel fact and live where the present unfolds in a room, where once a year one can see the fireworks at the zoo. But now this is the past…….