Tag Archives: Parenting

Just Finished Reading…

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I just returned home from a quick trip to Colorado and I had loads of time to kill while there as I was on bed rest for a day and a half. I started reading Next Stop by Glen Finland on the way out and finished it on the plane into Denver. My wife picked up Brain on Fire by Susannah Cahalan for me to read while I was on bed rest. I finished it before we left the hotel to come home. Days later back at home and inundated with playing catch up (and catch the little people) I am still thinking about both stories. 

SIMILARITIES:

Strong parent advocacy for a child

Mental illness and the stigma associated with its diagnosis

Disease with shockingly many unknowns

Misdiagnosis

Strong parental relationships (despite divorce, hardship, etc.)

Resilience and independence (the child’s)

Incremental growth or recovery in very small, sometimes painful baby steps

At the center of Brain on Fire is Susannah Cahalan, a successful, but young reporter for the New York Post whose normal daily functioning is quickly overtaken by some unknown ailment which causes her to deteriorate into a state of psychosis. Next Stop is one mother’s story of her son David who is born with Autism, but of course, it takes years of doctors’ visits, special schools and repeated testing in order to arrive at this diagnosis. In both stories the parental support is vital to the eventual diagnoses and treatments.

ISOLATION. There are many moments in Brain on FIre where the reader can feel the total isolation of Susannah and, at times, her father as he follows her every step of the way into the darkness of her disease – the outbursts, the paranoia, the escape attempts, the awkward uncontrollable limb movements and eventually the catatonic state into which she slides before meeting Dr. Najjar. It is so very clear that as the physical ailments slowly get ticked off the list of probable cause and the shift moves toward complete psychological diagnosis, doctors and nurses slowly turn away from her and her parents. “I can’t help you, I’m off the case,” they say. Glen Finland writes in Next Stop of feeling isolated in the grocery store even when she recognizes a father and his autistic son in the aisles. She wants desperately to pat him on the shoulder and say, “You’re doing a great job,” but she realizes that once you’ve met one autistic child, you’ve met one autistic child. Every single one is different. Even in physical therapy with her son David at  very young age she looks around the room and sees so many other overwhelmed and tired faces (of parents) that she is reluctant to share her story or her feelings with the other parents. How isolating is that? You’re all going through similar things and yet you can’t share the burden. It’s already too much.

RESCUE. Susannah’s case is eventually turned over to Dr. Souhel Najjar who through a series of simple tests including one in which he asks her to draw a clock, he discovers that she has a disease only recently named in 2007 – Anti NMDA receptor encephalitis. Its progression of symptoms include (taken from Wikipedia):

  1. A prodromal phase of nonspecific viral-like symptoms (fever, headache etc).  
  2. Psychiatric disturbances with schizophrenic-like manifestations (hallucinations, visions, suicidal ideation). This is usually the phase that patients are admitted to hospital.
  3. Memory impairment – in particular anterograde amnesia.
  4. Dyskinesias (especially orofacial) and seizures (often tonic clonic but not associated with epileptiform activity as assessed by electroencephalography).
  5. Loss of responsiveness, low Glasgow Coma Scale (GCS).
  6. Hypoventilation/central respiratory depression.
  7. Autonomic instability (e.g. variations in blood pressure and salivation rates).                                                                                                            You can see how one might be considered a psychiatric patient headed for a for-life facility. And the shit kicker for poor Susannah is that even when she’s on the mend, she has to go back through each stage in order to reach full recovery (which no one was sure she’d actually reach).

David’s consistent support and rescue team includes his parents (mostly his mom), his brothers and, in a few cases, some of his brothers’ coaches. Public school, private school, back to public school, vocational school, and finally a program in Florida that is meant to be training for life on his own. All the way through, his mother is there, watching, taking notes, pushing and making sure David gets the care he needs. Eventually she sets him free on the metro – to explore, to learn, to become fully independent.

PROCESS and CLARITY. Susannah, a trained and skillful reporter, leans on her strengths in order to process the life changing experience, particularly since she cannot recall at least one month of her life. She looks for clarity through interviews with doctors, family members, nurses, co-workers, and neighbors; video of her time in the epilepsy ward at NYU; journals her father and mother kept while she was in the hospital; personal research on her disease. She slowly pieces together and writes her story. David runs. He runs so fast and so hard and so long that his high school track coach picks him up for the cross country team. He runs for his independence, for his sense of self, for the simple pleasure it gives him. He runs the Marine Corps Marathon – perhaps the most emotional point in the story for me (and there were MANY). 

Certainly these are very different stories about very different people, but they’re so fresh in my mind, I just can’t help but see the similarities.

No parent will get through Next Stop without some serious emotional connections. Heartbreakingly beautiful. I dare you to get through Brain on Fire without being horrified at how simple it would be to disappear into a psychiatric ward in an unforgiving and inflexible health system where psychiatric disease still has so much stigma still attached to it. Also, it totally makes me rethink Linda Blair and Emily Rose. And all the other crap shows I’ve watched on demonic possession.

  

 

 

Monday Morning Fiasco – Mommy Tragedies

I’ll preface this post with two caveats – 1. I will share way too much information; 2. Said information might be pertain to barfing and lady business.

Monday wasn’t any more rushed than usual: wake up to small child yelling, “Mommy. Mommy. Mommy;” go get kid, take him downstairs, make coffee as quickly as possible while simultaneously emptying the dishwasher, packing his snack bag and fending off four hungry golden retrievers and a Snoot dog.

This is a Snoot dog (and kid #2)

This is a Snoot dog (and kid #2)

Wife comes downstairs with kid #2, start making scrambled eggs for kid #2 and set up high chair while wife feeds starving animals. After we get through the business of breakfast and coffee, my wife walks dogs, feeds chickens, and checks horses, while I change poopy diapers (bathing if necessary), get small children dressed, get myself dressed, and make sure my gym bag is packed with bra, panties, clothing, brush, etc. You will recall from my Bra-less at the Gym post that I often forget such things.

So, now I’ve remembered the kid’s backpack, we’re in the car, we’re on time and we’re headed out of the farm gates. Courtland is really into going fast now that he has discovered the four wheeler (and yes, please, go ahead and judge me for letting him ride on it already – he’s a kid who lives on a farm. He will likely also drive a vehicle by the time he’s 10. Whatever.). So, I move a little quick around a few turns to give the illusion of going fast, but we’re stuck behind a worky looking van (ladder on top) so we’re not moving very quickly. Our morning drive to school takes anywhere from 25 minutes on a really, really awesome no traffic day to 45 minutes on a really really suck ass traffic day. We only live 17 miles from town but our roads are loopy, one-laned and often filled with tractors and other slow moving farm accoutrement.

Finally we arrive at the highway and we are making great time. We go past two construction sites that he LOVES because they’re filled with “diggers!” and “dump trucks!” and “ment mixers!” We are still talking about the diggers and dump trucks and ment mixers as we head into the really loopy part of this road which is, by the way, not more than 3 miles from school. As we round the last bend, halfway through saying, “Mommy,” he just lets the puke rip, right over the pacifier and onto the car seat, the middle seat, and the Tiger Woobie. Faaaaaaaaantastic.

Of course, he is completely distraught and I immediately pull over into a gravel lot just before you come to the main stoplight before you turn towards the high school. You can imagine that this little stop is a busy one. So I get out, get him out of his carseat, place him on the ground next to it and begin the search for paper towels, tissues, dog towels, whatever I can find to start cleaning him up. I find a skiphop bag from when he was probably 6 months old and thankfully it has an old pack of wipes in it. How did I manage to remove every single towel and his change of clothes from my car? How? Oh right, I was cleaning it out and those were deemed non-essentials. Right.

The ‘older then Jesus’ wipes actually have some moisture left in them and I proceed to clean the kid up all the while reassuring him that it’s ok – “we’ll change your clothes at school, we have an extra carseat, Tiger Woobie is all clean”, etc. Luckily we did have an extra carseat (facing the opposite way, but that’s not important) and he could easily be deposited there after cleaning him up while I cleaned the rest of the car and his stuff. Here’s the f*****g awesome part though. As I lean over the extra carseat while unlatching it to turn it to face forward, I realize that I forgot to put in a tampon before I left home. F*****G GREAT. 

Well, here I am with just a few wipes left (please, please, please say I have had the foresight to put a tampon in my gym bag. Please.). I quickly relatch the seat and get him in it, buckled, and ready to go. He’s finally stopped crying – miraculously I have remained calm and just continued to reassure him so apparently those mushy parenting books are sort of right. Who knew?

“It’s OK, honey, Mommy’s just going to use a few wipes to clean herself up and then we’re going to get moving again. Hang in there.” I move to the front of the car after closing the other back door and get in. I score a tampon from my gym bag

High five.

HOOF*****GRAY! It’s probably from 5 periods ago, but who gives a rat’s ass? And, YES, I do what I have to do and ignore the traffic and the open blinds in the townhouses next to me. I DO NOT CARE.

Though we are making a left turn out of the lot into the busy street, we somehow manage to get out super fast and we’re on our way to school again, having lost only about 10 minutes. Wow, Mommy. Not bad. Considering.

Change of clothes at school and I’m off to the gym. Yay, Monday.