"Suffering the Slings and Arrows of Outrageous Fortune"

Now that Justina is home, reunited with her family, friends and pets, I am looking back over the whole sad saga of her 16 month imprisonment.

 

Freed justina sisters

 

 

I have already asked What was the Point? in a previous post and, while I don’t necessarily want to just rehash that sentiment, I am still incredibly frustrated that there is no good answer to that question. Furthermore, Justina’s situation today is essentially the same as it was when she was taken by ambulance to Boston Children’s Hospital on February 10, 2013:

She is ill. Dr. Korson, at Tufts, is her doctor. Her parents have custody of her.

What improved for Justina over the course of the past 16 months?

Nothing at all, as far as I can see. The somatoform diagnosis has apparently been tossed aside and everyone now agrees that her symptoms are from her mitochondrial disease. Her parents, although doing nothing really different today than they were 3 months ago when Judge Johnston wrote his scathing ruling accusing them of cursing, name calling, threatening, and generally being ‘difficult’ to get along with and therefore not qualified to have custody of their youngest daughter, now have been deemed qualified by the judge to have custody of Justina. I shouldn’t complain since she is home, but, I can’t help but think: What???

Let’s see: 16 months ago the Pelletiers said Justina had Mito. They wanted her own doctors – Flores and Korson – to provide her care. Flores happened to be at BCH but when the disagreement arose,  Tufts was where Lou and Linda wanted to take Justina. The Pelletiers said every medical intervention done to Justina was needed and that they were not abusing her in any way, so there was no reason for MA DCF to take custody. They said they would sue everybody who was involved in the medical kidnapping of their daughter.

Today, their position is precisely the same as it was when all his started. They broke the gag order and have never shut up; the media attention on Justina has only grown since November when Lou spoke to Glenn Beck.

So, what changed that made it possible for Justina to go home?

DCF, for starters. They were dragged into this mess by Boston Children’s Hospital – certainly not kicking and screaming, but willingly and because of their own negligence, so they do not get a pass on their own culpability, but they have at least had the sense to allow it to end.  Hopefully, they will think twice before ever doing this to another child – I hope and pray, that when faced with a similar situation in the future, the nasty burn they got from holding on to Justina is still very painful.

The controversy and media storm was never, ever going to go away; not until Justina went home and DCF was out of the lives of the Pelletier family. Somebody had to blink and, while conventional wisdom would say DCF was the party with the power, the Pelletiers were never, ever going to be the ones to blink. So, somebody had to resolve it. Secretary Polanowicz at HHS intervened in such a way to bring it to a close. I would say he had to set it up to look like the Pelletiers were giving in, when in reality it was DCF who was giving in. Bless him for doing so, but, it never, ever should have taken 16 months to resolve this. Period.

Today, the joy I feel as I watched Justina return home, to her loving family and adoring dogs, is tainted a bit by anger. I look back over the months that Justina was isolated and removed from life as she knew it…for no reason. Everything she knew and loved and held dear was taken from her…for no reason. Her voice was silenced, her wishes and independence and autonomy squashed;  her development and health imperiled… FOR NO REASON.

They said it was for her own good, but how can that be the case when nothing at all has changed from the time they took her? I look back and just see the seconds ticking into minutes, the minutes into days, the days into weeks, the weeks into months and the months into more than a year… as the tears and the longing and loneliness and fear and rage went on and on.

Why can’t I just be grateful that she is home?

For any human being, our greatest treasure on earth is time, for it is with the time we are given that we live. We manage our time, know that time is money and regret wasted time because we keenly understand that time lost cannot be found again. We bless others with our time – it is a manifestation of love and value and esteem. We cherish our time with loved ones who have their own finite resource of moments on this earth, because really, in the end, time is all we have. For people with chronic, rare, debilitating and progressive conditions, time is everything. At this time of celebration, I cannot help but grieve the unforgivable amount of time that was stolen from Justina. Her release is bittersweet to say the least…

So much has been taken, forcefully and wrongly, from this brave young lady but it is the time that was stolen, wasted, and callously tossed aside that is an irrevocable loss: the  16 months – 489 days – of her life that have been stolen by the powers-that-be are utterly irreplaceable. Nothing and no one can return her lost time with her elderly grandmother, with her sisters, with her parents, with her friends, with her pets.

Where do we go from here?

It is infuriating to think of this crime being swept away as if it were nothing because the DCF finally caved and because the Judge deigned to sign the order allowing her to go home: “Golly, Justina. Looks like we made a mistake. Ha Ha! Sorry about that! You weren’t crazy after all… well, have a good life!” Despicable doesn’t begin to describe this…

16 months ago, Lou and Linda weren’t allowed to get a second opinion from Tufts because Dr. Korson had ‘allowed’ himself to be hoodwinked by Linda into providing unnecessary medical treatment, but the court ordered Justina’s care be returned to Tufts and Korson, tacitly admitting BCH screwed up.

Lou and Linda were steadfast in saying they had done nothing wrong, that their daughter belonged with them and, after 16 months of disagreement,  the court agreed – at least that Justina belonged with them and the lack of criminal charges certainly lends credence to the idea that they are not just ‘not guilty’ but innocent.

They were devastated that their visitation was limited to one supervised hour per week. But, the court cited their visiting Justina everyday at the placement in CT as evidence of them cooperating…As if they wouldn’t have visited her every single day for the previous 15 months if they had been allowed? Who’s fault was it Justina didn’t see her parents everyday!

After 16 months, the case against the Pelletiers has been dropped and Justina was sent home with no strings attached.

I am overjoyed that Justina is home but the insanity and pointlessness of the past 16 months could just make my head explode….if wasn’t able to see the good that will come from this. Thank God, there is good coming from Justina’s suffering because I really need it to mean something...I will talk about that in Part 2.

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Comments on: "Making Sense of #FreeJustina Part 1" (5)

  1. Justina is just the beginning. As I type this all across the Country, Drs. don’t believe their patients. Drs. don’t believe their patient’s families. Despite statistics showing that medical child abuse is one of the rarest types of abuse, everyday a CPS team at a children’s hospital is picking up the phone and and telling CPS they have yet another set of parents they suspect.
    Money? Partially. Dr. arrogance? Partially. Erosion of parental rights? Partially. Power? Partially.
    Today across America there are Drs. who don’t believe, or don’t like, or don’t like the other Drs. that will pick of a phone.
    This has been a growing issue for years. As medical scientists discover new physical diseases that prove patients are not just “anxious”, “depressed” , “lazy”, “dramatic” etc there will be just as many Drs. who will refuse to believe the “new” science. Hospitals will chose money over science every time.

    Redhot mess and extremely dangerous for the medically complex patient.

    If you find a Dr you truly, truly trust? Hang on to them, as there aren’t many of them.

    Thank you for doing such an amazing job covering the Justina story, you have made it clear this is not a “mito” issue. This is much bigger and scarier then that.

    • I think the motivations you list are why this is such a difficult problem to resolve. When the cause can be one of many motivations, it is hard to be able to find the way to stop it.

      But, while I wish like crazy Justina did not have to go through this, I do believe her case is going to lead to an awareness of this problem of false abuse allegations and the horrific ‘it’s all in your head’ label. Good will come of this, but it is going to be a long road. It isn’t solely a mito issue, although mito kids seem to be at particular risk. It is my hope that the various patient organizations can team up and work together to help public officials make real changes to protect our medically complex kids.

      Thanks for commenting!

    • I think exactly this, what Diane said, is WHY we can’t “just be grateful”. Because Justina is the kid whose name we know, but what about all the other kids this has happened to, is happening to, and might happen to in the future? They deserve to be protected from The System exactly as much as Justina did, and the fact that they’re not as photogenic or their parents aren’t as articulate or their families don’t have as many resources as the Peltiers is no reason that they should suffer more.

  2. Susan said:

    I’m left with fear.

    • Me too…although, I do believe there will be reform and meaningful changes. Perhaps our kids are safer than they have been, but we are still left with the real fear that this happens, in every state. Which is why Justina’s Law is so necessary…

      Thanks for commenting 🙂

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