"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Monday, March 9, 2009

Out To Eat

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!

I thought this was funny because she decided she would try to squeeze behind Daddy's back.  She kept trying for several minutes, thus giving her dad a short time to eat mostly uninterrupted.  Too cute!


Jessica mommy to Alex/ RTS said...

You just made this girl hungry for some mexican!!!!!
and Alex does not have an open airway, and I do all those things with the sanitizing....Just let it be know it wasnt until the NICU that I became a hard core germ a phobe.

thinking of you today.

Michelle said...

Hey sister! Great pictures!!! I'm glad you guys went out. You deserve to be "normal" for a while!

Just a few more days!!!

Auntie Chelle

Nana and PaPa said...

Even though she is challenged with social settings, in these pictures she seems to have done very well! So what if you have to wipe things down....if people don't understand, they can just choke on it! LOL I LOVE the picture of loving her baby....she's SO sweet and loving. OK...now I also want some Mexican food! Glad you had a "break" in the normal world....INCLUDING Marissa. Love you guys.

ANewKindOfPerfect said...

I just love those pictures! The one of her loving on her baby doll is precious. :) I have learned to not give a flying fig about what people think. The looks we get when tube-feeding in public, or when we used to deep suction through her nose ... BOO TO THEM. We do what we do to keep our babes as healthy, safe, and happy as possible!

KH said...

Fun pictures! I'm glad you all went out! I can imagine that it gets very old having to be so careful all the time, for you as well as Marissa. I'm sure she will grow socially as she gets the chance--I can tell she loves life and loves people--try not to worry--she doesn't seemed too worried about it. Germaphobe is no big deal--hand sanitizer (or "shopping soap" as we call it) is my best friend when we're out...!

The VW's said...

What cute pictures of Miss Marissa out on the town! Glad you were able to get out!

I can totally relate to all that you wrote! Having our special children changes everything! Some things are so much harder, but they are definitely worth it!

I am SO looking forward to summer, when the environment becomes a whole lot safer for our little ones! Until then, keep up the great job! Marissa is very blessed to have such a great Momma!

Hope said...

You know what...I was going to email you today and ask what Marissa's eating plan is?

She looks beautiful in her pictures! I'm sure taking her out isn't easy. As far as the germaphobic issues, I have to practice them too. Anything to keep these little ones well! I know her open airway compounds this.

You pose a great concern that a lot of us have. How do we socialize them when they aren't supposed to be around other people or in people populated places? I wish I had advice, but I'm struggling through this too. When the only place your child goes is doctors' offices/hospitals, they associate going out as bad. I'm sorry I can't help, I wish I could. You are a great mother.

Rachel Marini said...

Cute pictures!! We all know how much work went into the 'behind the scenes' of the pictures, so.... great job!!

Jacque said...

You are one Awesome Mom Alicia (and dad too Jeremy!) Of course, with a cute face like hers, how could you not sacrifice all that you do for her.