Sunday, February 21, 2010

Mix and Match

"Life is like a box of chocolates, you just never know what you're going to get."

A dorky quote, yes I realize. But I find myself thinking this often lately. The last couple weeks have held some interesting events.

I was called by a recruiter I used to work with regarding a temporary position with a pharmaceutical company that manufactures CNS drugs. He said they had come to the end of their list of possible candidates to submit when he came across my CV. He had hoped I'd had a change in heart on wanting to 'semi retire' my career. Now, I've been out of work for almost a year and previous to that, I worked strictly from home for another pharma company for 3.5 years. It had always been my dream to stay home with my kiddos and we were finally able to handle it financially. It's been amazing to say the least. I'll be forever grateful for the time I've been able to spend with each of them while they were infants/babies/toddlers. I really had no intention of returning to work before this call. I was even tossing around the idea of going back to school for a Master's in counseling. But then this call came and something really struck me about the job and the company. How could this not be fate? To think that I could be a part of the research that goes into the drugs that have saved my daughter's sanity over the last few years is beyond my wildest dreams. And to boot, we have a fantastic nanny waiting in the wings who my children know and truly love. I feel pretty lucky this has fallen into my lap.
I interview tomorrow afternoon and while it will be a huge and initially heartbreaking adjustment, I feel as though this is some type of calling I must answer. It's just meant to be.

In Ava news, she's developed a new odd behavior pattern. She's been having BM accidents at school! My poor girl. She refuses to change into the extra underwear she has tucked away in her backpack and so has dirty underwear for a few hours - until she arrives home from school. We've chatted with the therapist about this and she's not really sure where it's all coming from - perhaps a control issue? Ava claims she is afraid to ask her teacher (whom we love dearly and is a sweetheart and beyond understanding always) to go to the restroom as she feels as though she asks too often. Ava is such a perfectionist - it just kills her to imagine that someone is disappointed in her or is thinking she's not perfect. I emailed her teacher to let her know what was going on and she and Ava have developed a code phrase that Ava can tell her so she knows Ava must go to the bathroom right away without Ava having to blurt out "I have to poop, Mrs. S!" Since this has happen, Ava's not had an accident but I feel like we're just on borrowed time here. On one hand, I'm of course heartbroken for her and on the other hand I'm so frustrated with her because I cannot understand - I cannot fathom what is holding her back from just going to the bathroom when needed?! Wouldn't that be worth it so you don't have to feel horrible with poopy underwear? Ugh, my poor girl and this horrendous illness. I know behavioral patterns such as this will just continue to evolve as months and years pass, but it is beyond exhausting as a parent to constantly find it within yourself to trudge through it all. There is no option to throw up your hands and say, "OK! I give up! I can't figure this out, I have no idea what the hell is going on! I can't fix it so just forget it, I give up, can't do it, you try now, ok?" And all the while, the previous is what drives me to continue to fight until she feels good and is stable. I made her a promise about a year ago, that I would never give up on this - I would never ever ever stop fighting for her to feel better. That she should always know that no matter what happens, I'll be here, right next to her, fighting this disorder along with her as long as she needed me. I realize at 5 years old that may not mean a whole lot to her, but I hope at 25, at 35, at 45 she looks back and realizes I never left her side.

On another note - I wonder if anyone has seen much of the publicity surrounding the upcoming revisions for the DSM? There is obviously a huge need to address Early Onset BP as there is nothing of its type in the current DSM IV. Studies are showing that Early Onset BP is actually grossly overly diagnosed and that perhaps a more suitable diagnosis would be "Temper Dysregulation Disorder with Dysphoria". It's been found that children that were incorrectly diagnosed with BP actually end up as depressed adults, NOT BP adults. Take a look for yourself - very interesting stuff: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=397#. Be sure to click on the tabs just under the words Temper Dysregulation Disorder with Dysphoria on the page for lots more detail on the rationale behind this disorder's addition to the DSM. Of course, I can't help but wonder where Ava fits into all of this. I look forward to discussing it with her pdoc soon. As horrible as it may sound, I'd be thrilled if my baby girl ended up with ONLY depression as an adult versus Bipolar Disorder. Thrilled that that would be all she had to deal with.

Ava's rages continue about once a week despite increases in meds. My girl finds it completely IMPOSSIBLE to play alone. Or really to play at all. It seems as though it is impossible for her to concentrate or keep her mind on anything at all. She used to love tv, her DS, the computer - it was worthy of a tantrum to get her off any one of those things but in the last several months she find virtually NO interest in anything. She's taken to following my husband and I around ALLLLLLLL day long (on non school days and after school). Its heartbreaking and maddening all at the same time. I watch other children her age an younger who play quietly and contently by themselves and I'm in awe. Ava has virtually NEVER been able to do this. She relies on someone else always to entertain her or spark her interest, imagination, motivation for everything. She is completely debilitated because of it. We work on this with her therapist as well but feel like we're really getting no where with it. At the same time, I worry it is a side effect of her Abilify as it seems as though it really became a huge problem as she began taking it. Yet another issue to discuss at her next pdoc appointment.

And so it goes - never a straight shoot sort of road in our house - always twisting and turning unexpectedly. I say this all the while teasing my husband often when he says this sort of thing. He honestly believes that we live a much harder life than compared to most. I question him with - what constitutes ours as hard as compared to the next family? Who is to say that we endure more than others? You cannot compare apples to oranges. Life is not easy and anyone who tells you it is - is lying!

I spoke to a clairvoyant recently who told me that some believe that unborn children choose their parents. She told me that Ava had specifically chosen us based on her issues in this life and our ability to handle them. On the days I want to give up and wave my white flag, I think of this and know in my heart that it is true. And I reaffirm to myself, what I have promised Ava -- I will not give up, I will not give up, I will not give up . . .

1 comment:

  1. Thank you! I found your blog while looking for reassurance during one of my 7 year old daughters meltdowns. She is being treated for Sensory Processing Disorder but likely is on her way to a BP diagnosis. I found this blog interesting as my daughter has in the last couple of months developed a urinary leaking problem and I have finally realized that she really truly does not know that she has to use the bathroom until the very last second, pee or poop. I have attempted to encourage a timed voiding system with her tho she does rebel and insist she doesn't need to go - which when I finally do get her there she does, big time. We keep her old potty in the van as short notice stops are common. I think the sensory part of whatever is going on has shifted since she never had such problems previously. Very elusive stuff, this gray matter.

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