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.

12 comments:

Chris Byrd said...

Very glad you don't let that disgusting excuse for a human being change the way you go thru your day. She is negative to her core, likely a raging alcoholic and the type who just really needs to go away and leave people alone. By now you know where you stand with us Debbie. We all love you and Bryan and the kids!

az.bakers said...

Thanks Chris!
Deb-it is perfectly stated! xoxox

Unknown said...

Tell your "friend", as my dad used to say, "Walk in another person's moccasins instead of stepping on her (his) toes".

Melinda said...

Hi Debbie,

My name is Melinda and went high school with Bryan. I read your blog after he posted it on his FB page. I really appreciate your approach of love and explanation to this person, rather than hate. Hate and anger is such an easy reaction and takes far more energy! It is very easy for someone who doesn't know your world or your child's life to judge. Our oldest child has Autism and was dx when he was 3, he'll be 10 next month. Throughout our journey with Connor, I have come to realize my capacity for love and compassion. It is far deeper than I thought possible. Having a child with any type of challenge rocks your world, but sometimes it lets in the most beautiful light and miracles!

Good luck to you and your family!

Melinda

3boysmommy said...

Thank you very much! I appreciate when people read what I write, and especially when they take time to comment (this goes for previous Blogger comments I never replied directly to in my other posts, too- sorry for that). It really does mean a lot to me and I love the opportunity to share things. I think my next topic needs to be something lighter, but this one was close to the heart. It is amazing the different paths life takes and how it changes your capacity for love, like Malinda stated. Well said... all of you. :)

Terra Walker said...

Very well written, Deb. Thank you for sharing this, and also your journey with your boys.

I agree, that love is the better answer here. I feel nothing but pity for her now. But like my dad used to tell me while I was struggling as a Life Coach, "You can't fix 'em all. I'm just glad you're gonna try."

Much love to you, my dear. Keep on keepin' on! If you need anything, I'm always around :)

Terra Walker said...
This comment has been removed by the author.
3boysmommy said...

Melinda... sorry I didn't spell your name correctly earlier! Terra... thank you so much! I agree, maybe pity is a good thing for HER now. What else can we do. Thanks for chiming in. Appreciated for sure!

mymeow said...

Debbie, I am an old friend of Bryan's. I really can't say I know you, but after reading your blogs and from what I know of Bryan, your children are very blessed to have you both as parents. Your dedication and love for your children is very obvious. It's so sad that there are people like that out there who would say otherwise and hurt you like that, but great job of taking her negativity and making it into something positive with your blog. It was written very well.

Robin Knapp

Kelly said...

Deb, I have another online friend--who now is a good friend in real life--who has been accused of MBP as well. Unfortunately, her situation has turned UGLY, to where the accuser will stop at nothing to destroy her, all while my friend has stayed decent.

People like that cannot be reasoned with. MBP is a serious charge and should be considered defamation. Just because our kids are hard to diagnose (Michaela doesn't even technically fit her main dx, or any of her other ones!), doesn't mean we're making them up! Anyone who judges based on online postings is superficial and a simpleton. They cannot understand the depth in life, nor can they understand the complexities of the body.

So, my advice: get as far away from this person as possible before they start getting on a crusade about you and try to "save" your child. I'm serious. And then: keep on doing what you're doing....the truth always wins!

Jessie Geroux said...

Just curious if this person is the same person that prompted me to do my blog post about cyber bullying. If it is she is a complete and utter nut job, I admire you for this classy well written post Deb.

3boysmommy said...

Jessie can you send me a link to the blog you had posted, too? Looking forward to reconnecting! Kelly, SO well said. Yes, everything. Spot on. I am glad to see this person has more or less gone away for now but I regret all the irritation and heartache she has caused not just me, but others as well. Sickening.