My Battlefield and Fragments of Thoughts

In my efforts to care for and protect my Gabriel, hospitals have become my battlefields. Every time a doctor gives us a particular input, diagnosis, prognosis, medical opinion or advice, I've made it a point to do my own research. Not that I know better than them, but it's more of like my own way of doing something to make sure that I'm always part of everything. Stage mother? "Pakyalamera"? Close. But not quite. After all, what kind of parent would not want to have the safest and gentlest management for their sick child? It's the least I could do to help my son feel better. After all, I'm the one who's beside him day in and day out. 

Yes, doctors offer their expertise; but I offer my whole life.

Doctors examine him for a few minutes; but I look after him 7 days a week, 24 hours a day.

At some point, a doctor recommended NGT tube for my son. And then "this and that" happened. To cut the long battle short, I didn't allow it to happen and insisted that I can feed him by mouth. Fast forward to present, oh yes, I feed him by mouth, he gets to enjoy his occasional dose of ice cream, hot fudge sundae, fruit shakes and mashed potatoes. He can taste his food and I get to enjoy the simple happiness of seeing and knowing that my son can experience the joy of eating - a taste of normalcy in the midst of his delicate condition.

I don't want to think of what might have been if I had allowed the doctors to put that NGT on him. I'm just thankful it didn't happen. I'm thankful I said "no"

Nasogastric Intubation

I know that doctors know best and I have high respect towards them. I have faith in Filipino doctors. Probably there are a few out there who never heard of the word "compassion" ...but who cares about them. I'm just glad that I found good ones for my son. 

Here's what I believe in... every patient deserves attention - paying or non-paying - because the last time I heard, doctors are under oath to care for the sick. 

For moms out there with special children, what we are going through is difficult. Indeed, frustrating at some point, but it's comforting to know that we are not helpless. We can do something to make a difference in a special child's life. 

It's not easy to listen to doctor's explanations about certain conditions, the prognoses and their medical managements. But don't be afraid to ask. It's even fine to disagree as long as it does not put the child's life at risk.  Don't just accept it. Do something. 

Never lose the inclination to get to know the depths and details of your child's condition. I know it's frustrating and heartbreaking to know the truth - every bit of it, but it's much better than being clueless about what to expect. 

Acceptance does not really happen. The pain does not go away either. And it doesn't get easier over time. We just get used to it. 

Time will pass but the questions will remain. There is no such thing as plain acceptance. At least, none for me.

"Getting used to it." It's a sign that we become stronger and more tolerant over time, and at some point, we realize that our hearts just grow. We discover that length of patience we never knew we're capable of giving. We become more and more capable of loving our child regardless of what he or she is. We become more capable of loving unconditionally.

I, for instance, wake up every day discovering and feeling that I love Gabriel even more than the day before.

One thing I've learned through the 7 years that I've been taking care of Gabriel is to become pro-active in his treatments. If the doctor says something, I research about it. I read blogs, online articles and even search for an online forum about the subject. It helps a lot to read what other moms out there have to say about their own experiences in caring for their child with special needs. It makes me feel less alone. These moms whose articles, blogs and comments I read online, empower me and give me hope. 

My son's neurologist may sometimes feel as if I'm always trying to get in the way of her thinking; and may, at times, feel annoyed about the fact that I always ask "why?", and constantly going into the depths of my son's condition to the point of being somewhat demanding. But it's my son's life we're talking about. And I feel that it is perfectly okay to ask and even consult about something I read or observed (especially if it's relevant to my son's case).

She has gotten used to it.

Yes, I'm a "pakyalamera" mom and every check up / hospital visit is a battle for me... I will always have inputs. I will always have questions. And if I don't feel right about the doctor's decision, I will never (ever) have second thoughts about expressing it. I always have to know "why"... I'm not changing that.

*** Some of the images used in this blog post were taken from the internet. Credits to photo owners.