For the first time in a long time, we decided to venture out as a family this evening. We went to a Mexican restaurant down the street and had a good time. Marissa was a little unsure at first. In fact, when we tried to put her in one of those wooden high chairs, she freaked out, so we asked to be moved to a booth so she could sit on the bench beside Jeremy. I'd like to think that she just decided she wanted to be a big girl and did not need to use the high chair like a baby. However, I know the truth is that she was overwhelmed and scared of the high chair. She was scared by the fact that she was not in her familiar environment.
One of the things I struggle with the most in having a special needs child is not being able to do "normal" things like "normal" people. I have written about this before, so this should be nothing new to most of you readers, but I know I have some new people on board, so I'll explain what I mean.
Because of Marissa's trach, we have to do a lot of things very differently than most people just to go out. First, we have to take her suction machine and supplies for an emergency trach change, in addition to the things one would take for a typical two year old.
Second, because of her "open" airway, we have to be very cautious about where we take her, when we take her, and what she touches while we're out. We have essentially secluded her at home since October (aside from doctor's offices and a few other exceptions) and we are probably taking a risk taking her out even now because it is still considered "respiratory season". We have to take antibacterial wipes and wipe down everything she might touch. We rub her hands with antibacterial gel when we leave. I can only imagine what I must look like to other patrons wiping everything down like a germaphobe. But I have to be a germaphobe for my daughter's sake. I don't have a choice. I would not act this way if it weren't for her compromised immune system. I would be able to allow her to catch a cold and not be in fear for the next several days that she could get significantly worse and need to be admitted to the hospital.
Third, because we seclude her to keep her away from the germs, she is somewhat stunted socially. I don't think it is severe, but it is noticeable. She is not used to being around a lot of people. Even though we socialize her as much as possible during the "healthy" months, she forgets in the months in between and gets overwhelmed and overstimulated when we do go out. I don't really know of a work-around to this problem. I don't want her to be limited by her differences, but she is. This frustrates me.
How do you raise your special needs child in a manner that does not cause her and everyone around her to be acutely aware of her differences? Ever since we knew she was going to have certain special needs, I have wanted to be that kind of parent who says, "we don't treat her any differently than we would if she were typical". Unfortunately, if we don't treat her differently, she runs the risk of getting very sick.
She is getting older and will soon start to become curious as to why she has to do things a different way than others she sees. We think she might get the trach out this Summer but if not, definitely by next Summer. However, she will have the g-tube quite a lot longer than that. We will have to find a way to explain to her why other kids she sees eat with their mouths and not with a tube in their stomachs. We will deal with it when the time comes, like we have dealt with everything else, but it saddens me that someday she will come to realize that she is different.
Having said all that, I did not start typing this post with the intention of complaining about being a special needs parent. I did really want you all to get a kick out of the pictures we took while we were out. So here you go:
She loves to take tastes of things that we eat. At least we know she will enjoy eating once she learns how and can do it safely!
I just had to post this picture because of the look on Marissa's face when she is loving on her baby. She sure loves fiercly!