Feeding Tube Awareness Week: Why Awareness?

Today I'm supposed to write about why it is important that there is tube-feeding awareness. It's something that I've thought about all day, and yet I can't come up with tons of answers. Your being aware of tube-feeding is not something that is going to affect Sweet B right now. The girl spits food out of her mouth in public while laughing hysterically and thinks that her farts are the funniest thing in the world. I don't think she gives a crap about what you think of her eating from a tube.

I went through a stage where I was embarrassed of the tube. The main reason was that I didn't want to offend anyone by feeding her in public. I didn't want to gross anyone out. This is why I didn't choose to start feeding her in public until recently. Fortunately I've completely lost any fear of offending anyone and I am not the slightest bit embarrassed anymore. In fact, I'm proud. My husband and I always joke whenever we start tube feeding her in public and we say, "It's time to give everyone an education!" So you could say that in a sense, I have become more aware of the needs of tube-fed children, such as the fact that they need to eat to live, and it's crazy to not give them nourishment simply because you're in a public place.

Before I give you the most compelling reason to be aware of tube-feeding, I will give you the selfish one.

I need babysitters. Hubby and I have not spent more than an hour alone since she was born, and that has only happened twice. Sweet B doesn't qualify for a respite nurse since her conditions are not severe. A few years ago they took away the funding to help parents like us get a much needed respite. We've managed to work through this well. My husband plays tennis a few times a week, and although I don't have a hobby right now, he encourages me to get out of the house. Truth be told, I don't really leave much, and I spend the time that he is watching her, sleeping in my bed. I'm tired. Her numerous therapy and doctor's appointments are exhausting, as is the tube-feeding and oral feeding and physical therapy that I must do on my own. I know that it sounds pathetic, but it is the truth. I would love to go out to dinner with my husband. What I wouldn't give to be able to call a babysitter.

I don't think much about the lack of dates though. I'm confident in our marriage and we will survive even without time alone. I do think about what would happen if myself or my husband was in in accident. I worry about being with him at the hospital and having to go home because no one knows how to feed Sweet B. I worry about both of us dying and Sweet B having to go into a foster care situation initially because no one knows how to do something as simple as feeding her. Lately this has been on my mind a lot, and I hate it.

I worry about what I will do when I have another baby and am at the hospital after it is born. I envision my husband not being able to stay with me because he has to go home and feed her. I spent quite some time thinking about this this weekend, and I felt anger. Anger about not being able to spend time in the hospital room with Sweet B, my husband, and myself, a year and a half ago, and anger about not being able to spend time in the hospital room as a family with the new baby.

I've decided that I'm going to put this out there for people who know me to see, and I'm hoping that we will get some willing volunteers to relieve my anxiety on these issues. My mom learned to tube-feed this weekend, even though it scared her half to death, and I have had a few friends on face.book volunteer to learn (I only wish that more than one of them lived close to us!)

I think that people might not have volunteered because they weren't aware of how scary/frustrating it is to have no one know how to feed Sweet B. I think that some haven't volunteered out of fear of the whole tube-feeding thing. Sticking a tube into a hole in the stomach? Gross, right? And of course I haven't put it out there that I need help. I don't want to put people out. But just as I'm done worrying about what people think when I tube-feed her in public, I'm done pretending that it's okay that no one close to us knows how to feed my baby. There are real and compelling reasons for people who care about Sweet B to learn how to feed her.

But seriously though...look at that face. Feeding her through a hole in her stomach may seem gross, but it's keeping her alive. I would think people should be banging down our door, begging to babysit!

Educating people about tube-feeding hopefully will show others that one of the challenges that we face is childcare. Teaching people how to tube-feed will alleviate some of the worry that comes with childcare situations.

Did you know that many children who are tube-fed might be fed that way when they are adults? I believe that we have a few years at the most to deal with this, but some people will live the rest of their lives making sure that their son/daughter is getting adequate nutrition through their tube.

And now I'll take the focus off of our own family and talk about why tube-feeding awareness is important to society as a whole.

I think that we get so wrapped up in our own lives that we often don't take the time to find out what people are living with daily. A lot of the time it is fear. If we think about it, then we imagine it happening to us, and it is scary. My mind tends to focus on the worst case scenario. When I learn of a disease or a difficult life situation, it is often too scary to even think about it. It is natural for people to silently think "I'm so glad that isn't happening to me."

But it could. Your child could be in a car accident and have to depend on the tube for the rest of their lives. This doesn't just apply to tube-feeding of course. Any of us could find ourselves with cancer or a deadly disease. Any of us could find ourselves being discriminated against or suffering a depressive episode which completely takes us out of commission. Thank goodness we have "awareness" weeks that teach us about cancers and diseases and discrimination and mental illness. Awareness, if we choose to learn about the topic, take us out of our own world and helps us to see that the people around us are living life with frightening or difficult circumstances. We need to take the time to learn about the life conditions that people live with so that we can be a better support and not be so judgemental. The woman in the waiting room who is letting her toddler scream uncontrollably might be doing so because the child has autism, and ignoring certain behaviors are part of their therapy. The teenager at the store who keeps yelling the same word over and over, getting on your nerves, could have Tourette's Syndrome. The bank teller who is rude to you could have just found out that she has breast cancer.

If you made it to the bottom of this post, thank you for taking the time to learn about something that is probably foreign to you. Thank you for opening your heart and your mind and being aware that tube-feeding has it's challenges, as does every difficult life situation. Being aware of this helps us to become better people and help those around us to make it through this difficult life.