Hunter is rattling cages...
After about 20 or so seconds, Hunter gets up on his knees and really rattles things around. The background beeping sound you hear is his Pulse Oximeter. When he is moving around a lot, it will not pick up a correct reading and sound off. We were trying to put him to bed.
There have been many positive things that I have been writing about with Hunter. I have to admit, not every day is positive. And, getting to these positive days is an uphill and sometimes treacherous course.
We have tried for over a year to get Hunter to take one bite of food. During this time frame, we have heard people make uninformed comments to us, like "just feed him" or "give him to us for the weekend, we will have him eating". Are they really thinking that they can make a difference in one weekend? What are they trying to say to us? Are they trying to say that despite taking him to therapy four times a week, and trying to feed him ourselves that we aren’t doing enough? Do they really understand the importance of not force feeding him and the fine line that I have to draw between a positive and negative feeding experience? Those are the people that I have realized are not my support. They have never had a child that has eating difficulties. Please let me clarify that just because a child won’t eat spinach does not mean that have an eating problem. It is a successful day when Hunter takes five bites of pudding or he tries a different texture food. For instance, he tries oatmeal instead of pudding or accepts cold or warm food items instead of pudding being at room temperature.
There are so many things that people take for granted in this world. One of them is the fact that there child is born full term and healthy. When prematurity strikes, it affects an entire lifestyle. When we get sick in our house it flip flops everything. Suddenly, one parent is stuck doing everything while the other parent goes into isolation in a bedroom to recover.
I have also heard people say that I'm being paranoid about our family getting sick. But, I have to just shake my head and know that those people have never walked a day in our shoes, or never watched their child fighting for their life because of an infection or virus.
If Hunter gets sick, not only does it affect his health and puts him in extreme danger, including hospitalizations and intensive care services, but he suffers hardships in his development. It takes away from his strength. If he can't breathe, he can't function - including eating. A simple cold could do this to Hunter. So, I ask myself - how paranoid am I really being about Hunter's health? Hunter already has developmental delays as a result of his lungs, prematurity, and underdeveloped organs, can he afford any other setbacks?
I have learned that people have a hard time accepting what is not normal. But, its the abnormal that makes this world turn. We are all abnormal with our own handicaps. Some handicaps are more noticable than others, but that doesn't change who we are as people. We learn from what is not normal. Hunter has taught me so much about the value of this life and I will forever be grateful to him for that.
As I have said before, prematurity is not something that I planned for. It was something that was given to me to deal with. Regardless of his health or handicap, I love my son more than anything and do the best I can to keep him healthy.
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