Friday, August 24, 2012

The One With The Bed

I've been avoiding this post because thinking about it has been exhausting.  I've tried making kidney bread.  I read the first three Harry Potter books.  I cleaned every toilet in the house.  But here it is, a week from when I first began to avoid, and now I've gotta man up and write.

REM sent a social worker out to our house last Thursday as part of our "getting to know you" package.  She was nice enough.   She actually did not leave my kitchen (which was good, since that was the cleanest part of my house).  I thought she'd look around for baby hazards or something.  I didn't really know what to expect.  Mostly she asked me what diagnoses meant on LM's paperwork, or why our address was wrong on her forms. 

We get down to business.  "What next?"  We only have three months til we no longer qualify.  "What can you do to help?"

Diaper delivery.  Sweet.  Crib mattress pads.  Neat.  On to the big stuff...

The bed.  So I mention that sharing weekends with the Ex means I would need a portable sleep solution for LM.   I had found The Safety Sleeper on an autism website.  It looked awesome, but the price was wrong. 
Its like a boy scout tent.  With a mattress.  Its only $1,549.99
Well, they agree to think about it.  This whole shared custody thing seems to throw them a curve ball.  I don't really get why it would, but maybe medically difficult children are supposed to stay in one place and I'm doing it wrong.
She leaves saying that no matter what, I'll be getting recommended for a safe bed for Little Man.  I'm ecstatic. 
Then come the phone calls.  Medi Rent wants more info.  They let me know that I would probably get denied a bed at first, because Medicaid does not like giving out beds.  But then I would reapply, and maybe get accepted, with a letter of doctor recommendation/prescription.
She emailed me a picture of the bed. 
Imprisoning infants since 1921. 
Now don't get me wrong, I am incredibly grateful that Medicaid might get us a bed.  I know there are plenty of people who need medical supplies and never will be able to get the assistance they need.  If I was already married to Hubs, we'd be shit out of luck.  As it is, we still might lose out on this bed if Medicaid moves at the typical government pace (snail) and then we will be back at square one.  We'd postpone the wedding which is a few months away (we've been avoiding it a while now) but *I* don't have health insurance if we don't get married. Which is scary because I have my own medical worries I have been avoiding for over 2 years.
That aside, this is completely impractical.  This is obviously not portable. Overnights with the Ex are going to be much more difficult, if not impossible.  While I don't really worry about him not sleeping, I worry about Little Man getting into something dangerous while in his care without a safe bed.
And its just... its not a bed.  It's a place to sleep.  As much as I joke about needing a baby jail for Little Man at night, or a way to keep him trapped... its scary looking.  Its like being in a hospital all the time.  Sterile, uninviting, and kind of creepy.  I know Little Man is far from being able to complain right now.   But the thought of him sleeping in this bed til he's eight or nine... its just overwhelming.  It makes me feel claustrophobic and gives me flashes of his time in the NICU.  It doesn't look like a place where I snuggle him and read him stories or do anything other than lock him in it and run away. 
Looking at this bed, imagining it set up in his room... it breaks my heart.  I don't want to feel like we're at that point where Little Man needs hospital grade equipment in his bedroom at night to keep him safe. 
I'm overwhelmed.  I'm sad.  That is just all I can say right now.

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