Sunday, August 14, 2011

On Thinking You Know...When You Really Don't

One of the downfalls of sharing so much online is that it occasionally opens one up for criticism. I have had a little of that here and there, and it has never been anything too dramatic. Something happened the other night, however, that shocked myself and many who saw it unravel. I don't like to continue negativity, but in as positive of a light as I can spin it, I need to talk about this. It isn't just for me. It is for the other parents who also share online through blogs, Facebook content or Twitter. I have enjoyed reading their ups and downs, their daily anecdotes as well as their struggles. We need to continue to tell our stories, because they matter. I plan to do so. I will not let one cruel person make me question what I share.

In the midst of an ER run with my youngest the other night, (because he had a very high fever), I went on Twitter via my phone to pass some time in the waiting room. I asked if anyone was still awake, because, hey, the ER in the middle of the night is a little lonely. One of the first people to respond was someone I share mutual friends with, but do not know well. She has caused waves with others in the past, but I, because I am a nice person, continued to follow her online and allow her to follow me, too. It started out with her asking if I needed anything. Sounds nice enough, right? Then it very quickly proceeded to her accusing me of lying about not being able to attend a pot luck she was having over the weekend. After that she started making cryptic comments about how she hoped my child would get better and for me to read into that however I wanted. It really made no sense. Then right after that, which I unfortunately did not catch until the next day, she "happened" to post a link about a mental illness in which a parent somehow finds the time to fake illnesses in their child, make them appear sick and "hospital hop" seeking attention. This was followed by the hashtag: #justsayin.

This person has met me only twice in real life and has NEVER met my child. If she would have taken the time to learn the whole story, rather than just the window crack she could see on Twitter, she would know this:

Joshua has developmental delays as well as some health (mostly gastro-intestinal) concerns. I have spent a lot of time in my writings saying how fortunate we are, and that our problems are nothing compared to so many. I don't seek sympathy, but I enjoy sharing what I do know and reading about others who have similar concerns with their own kids. When someone tells me that a blog entry, or even a tweet, was something they could relate to, it makes me feel good. Our doctors have had a hard time getting Joshua to fit any one clinical picture, which is not unusual. It may make unkind and closed-minded people, such as the woman mentioned above, assume there is "nothing there" then, but that is not so. For lack of knowing what else to call it, for now, our doctors use "mild cerebral palsy," while also being quick to tell me they know it is more than that. Again, this is not unusual. There are so many neurological, genetic and metabolic conditions that it is like throwing darts in the dark sometimes. Some children never receive a conclusive diagnosis.

As for the hospital trips, maybe this person could have taken the time to ask about our schedule. We go to the children's hospital here once or twice a week just for simple pediatric therapies such as OT. Also, all of Joshua's doctors work out of that hospital, so whether we have a check up with a specialist or just a run of the mill cold to look into, that is where we go. Our ER visits are likely an average amount. I go if there is an alarmingly high fever, vomiting that will not stop, or an injury, as any good parent would. So yes, you may see a "check in" to the hospital more than what seems average, but it is not always for something major. It is definitely not for something I have made up for "fun" (in all that spare time I have, you know!)

Maybe this person has seen me say that we are going to California and Wisconsin for medical care soon. I happen to know many parents who have traveled out of state to seek medical care for their children. It isn't that abnormal. If this woman would have taken time to ask, I would have explained this: We were told to seek a second neurological opinion on Joshua. The question of metabolic/mitochondrial disease has also been considered, and so I was fortunate to find a doctor somewhat close to us in California who specializes in all of these areas. We are going to Wisconsin because our gastro-intestinal doctor said it is the next step. In fact, he wanted us to go to programs back east that lasted two months! I was happy to find a shorter plan in Wisconsin. Joshua has already been through feeding therapy at the hospital here, and it didn't increase his volume of how much he ate. He has flat-lined on growth. (Miraculously, he is not losing yet!) He will not be able to sustain long term on the amount he is eating. We don't know enough about his gastroparesis to know what his stomach really can handle in one sitting. He may have hit a ceiling as far as his eating ability. Our doctor feels that it is vital to get more information and maybe do some intensive feeding therapy, seek alternative ideas and gain knowledge for what the future holds. It may still result in a feeding tube being placed. I asked about twenty times over the course of several months if we really needed to travel for this, and each time the doctor or his nurse reminded me of the reasons that we do. I hate to fly and be away from my other two kids. This is not something I want to do. It is something it turns out I HAVE to do for my baby. Who wouldn't?

I choose love and explanation over hate and yelling. But I still had to speak out about this because the woman behind the ridiculous assumptions was so wrong, and because I am sure there are other parents who have been in this situation before. I will continue to share our journey. I will be open about my bad days as well as the good. I will do everything I can to help my child until his doctors and myself are at peace with knowing we have turned over every rock within reason. It is not crazy. It is responsible, logical parenting.