As many of you know, my family has been dealing with Ehlers Danlos Syndrome for a while now – March 14th was the 3 year anniversary of getting the official diagnosis from Dr. Tinkle. Time has passed and we have settled into our new normal, things have changed so much since that desperate day. In fact, it wasn’t until I was replying to a comment on the 13th that I even realized the anniversary was upon us – that is how far I have come on this journey.
And then I read something that rips open the still tender wounds. It was nothing much, just a stupid commentary on the Justina Pelletier situation: ugly words from someone who clearly has no idea what living with a rare, chronic illness is like. I hovered my cursor over the comment box for several long minutes, longing to let this woman have it. I couldn’t form a rational reply with the anger and pain surging through my soul so I reminded myself that it is not my job to police the web for stupidity and I clicked away.
The next day I searched again for the article and, sure enough, it was as bad as my first reading made it. Again, I resisted the temptation to comment. The article is 3 months old and so obsolete in the reporting of the events of Justina’s case that it really doesn’t even bear thinking about. But, I cannot stop thinking about it…
I have said many times that the Justina Pelletier situation hits incredibly close to home for me. It is scary, in ways parents of ‘normal’ kids cannot fathom, although they are at risk as well. It is infuriating. It is painful. It rips open wounds that were healing. It hits at all of the things that I worry about: parental rights, the dangerous lack of awareness of rare diseases, that a stray doctor could tell my daughter it is all in her head, that Children’s Hospital could be a danger and not a help.
My daughter is about 7 months younger than Justina. She is old enough to be aware of current events and this one truly impacts her. But, it does her anxiety no good to know or imagine what Justina is enduring. I hate that this is the world she lives in and that she is so vulnerable. It is far too easy for all of us to imagine Emily’s face instead of Justina’s in the news reports.
Back to the offending article: I am torn between refusing to give the author any publicity or a pingback by sharing the link and linking so everyone else can be mad with me. Y’all know that I am normally addicted to embedded links, but I am going to abstain this time. I think I will withhold the courtesy of linking to her article because I will not reward her ignorance with attention and will instead just share a couple of her more offensive thoughts. You can just google ‘crazed mito mommies’ and read for yourself if you so choose – the link will be at the top of the results.
First of all, she was completely, stunningly incorrect by predicting that the interest in the Justina case was waning. Instead of interest declining, even ‘rational’ people can see something is horribly wrong here and the public is jumping on board in droves to support the Pelletiers. Of course, she also pontificated that the final judicial decision was imminent, because that is what reasonable people believed in December. Sadly, this case is not being run by reasonable people – Thus. The. Injustice. In fairness, it is possible that her opinion has changed a little in the ensuing months, although I rather doubt it. I would be happy to accept an apology if her position has ‘evolved’.
She refers to the ‘overzrealous internet groups’ still obsessing over this case. This attention-seeking article was published on December 14th – at that point Justina had been held by BCH and DCF for 10 months. I guess people should have stopped caring at …what? month 1? 3? 6? and just let DCF have its way with this poor helpless child instead of obsessing so long.
I proudly admit that I am part of the ‘rabid parental interest groups’ who are trying to forcefully change minds, so feel free to take her advice and ignore me completely. I have a platform, a small one certainly, but I will use it to the best of my ability until Justina is home and a law bearing her name prevents this from EVER happening again.
Her comments about the ‘mito mommies’ worrying about a case they know nothing about and how the good ones aren’t even paying attention because they are too busy tending to their own families to insert themselves into a situation which does not involve them, were beyond offensive. It is offensive to not just those ‘crazed mito mommies’, but every single parent who has an ill child they are forced to advocate for. I guess I am not a mito mommy, but I am an EDS mommy, and a POTS mommy, and a Mast cell mommy and it is my right to speak up against anything that I think can harm my child. (It’s funny how ‘it takes a village’ goes right out the window in this case.)
So many, many words are on the tip of my tongue and the tips of my fingers. But, I will restrain what I really want to say and just say this:
None of us ‘crazed mommies’ asked for this life of caring for a chronically ill child. We would give anything for our kids to be healthy and not at the mercy of their medical condition for the rest of their lives.
With all due respect, YOU are the one inserting yourself into a situation which you know nothing of and you look foolish by doing so. You have a right to your opinion but you do not have the right to name call for the sake of getting yourself page views. That is reprehensible. And just a suggestion, don’t quit your day job for your hobby of predicting the future – you really are not very good at it.
If you do not have a chronically ill kid, just shut up and admit that maybe there is something you don’t know. The hypocrisy of you telling me that I don’t know the facts of the case so I don’t have the right to an opinion is absolutely stunning considering YOU don’t know the facts of the case any better than anyone else yet you feel entitled to write such a juvenile piece of drivel. And, you refer to Justina as the ‘mentally ill teen’ so, yeah, I can tell you are so incredibly unbiased.
I would not wish even my worst enemy to have to watch their child’s life derailed by an incurable medical condition. Lady, for your child’s sake, I hope you never have to learn what it is like to parent a medically complex child. But, life has a funny way of coming around to bite the ignorant so I would be mighty wary if I were you.
Suggested reading: Proverbs 16:18 – The Message phrases it particularly well for this situation:
First pride, then the crash— the bigger the ego, the harder the fall.
No, we are not crazy. We are angry. We are infuriated that our government can willfully run roughshod over the citizens from whom it receives its power. And we are done sitting by quietly while our children are abused by the very institutions that are supposed to help them.
Our children deserve a world where ‘it’s all in your head’ is not a viable option until every medical option has been ruled out. Our children deserve a world in which they are respected and treated with the dignity that is due them. There are more of us than you know and we are uniting around this common threat, so get used to hearing our obsessive, crazed voices and just try to ignore us.