The Gray Area

I feel like I'm living my life in The Gray Area.

Geek and I are separating...but not really.

Bubba has Autism...but the support groups and other things (apps, books, etc) are for kids with the classic form, which he doesn't have.

Diva has cerebral palsy...but again, any support I can find is for kids with the severe form, her is mild ataxia.

Let's start with Geek and I.  If we didn't have the kids, this would be really easy..."bye!"...but not only do we have the kids (and for their sake we need to stay friendly...not that anything is ugly between us we just realize we aren't working as married parents) but we need to wait until the end of the school year to even tell them on the suggestion of their psychologist.  The last thing we want to do is cause any issues with them finishing out the school year.

Now, the support groups.  I want support from other parents, I want their advice, their tips, their friendship.  Our families really don't understand, some of them try to but until you live it day in and day out you really just don't get it.  For instance, Geeks aunt and mother don't understand why we "insist" on disciplining the kids immediately...I'm not sorry, you cannot take Bubba/Diva with you to do something fun and postpone his/her punishment!  The there is the snide, "Does she really need to sit in her wheelchair?"  Um, yes, if we don't pace her she will tire out and meltdown.  I'm sorry you are embarrassed by the wheelchair and her braces, but tough shit.  Yeah, I'm not sorry about getting rid of my in-laws at all.

I wrote this back in early May.  Over the next few days, I'll be posting  a lot.  I wrote to help me through my emotions, but I didn't want to post anything until I was in a better emotional place.  

I Would Be So Bored With "Normal"

There is nothing normal or typical about my life.  Well, there are a few things.  I cook for my family...we laugh...we play games (the Minions LOVE bored games)...I spend one night a week putting their weekly pill containers together...we visit so many doctors that my kids know the drill by heart...

Wait, those last two aren't normal.

I spend Thursday nights, after the Minions are tucked into bed, filling their weekly pill containers.  Diva takes two pills each day...one is a fish oil and the other to help her sleep, in addition to mirilax.  Bubba takes 5.5 pills each day...two fish oils, 1.5 for ADHD, one for asthma, and the other for reflux.

Doctors visits...Diva sees a GI doctor, an orthopedic doctor and a psychiatrist on a regular basis, in addition to her family doctor.  Bubba sees a pulmonolgist (for asthma) and a psychiatrist, in addition to the family doctor.  Of course, they also see the dentist and eye doctor.

Did I mention before that they both get physical therapy (PT) and occupational therapy (OT) and Diva also gets speech therapy (ST)??

They have seen just about every specialty at the childrens hospital at some point in their life.

It makes me sad when we get complements like "it's great that they can swallow pills and that they don't give you a hard time taking them"..."you are so good letting me examine you"

Honestly, I wish I had to hold them down to get a shot or take meds.  I wish they haven't had to experience of anesthesia.  I wish I would have to sit there and watch them take medication, rather than just telling them "time for meds" and they know which slot to open.  I wish they didn't know to question if they have the correct pills if the color/size/shape changes.

I wish my kids didn't know what the inside of a childrens hospital looks like.  I wish I didn't have to give their teachers a full page background on them.  I wish Diva could have milk, didn't need medication to help her poop every day, and that she could sleep well.  I wish Bubba could make friends easily, knew a time when he didn't have daily pills to take, and didn't have to carry a nebi/inhaler everywhere.

I'd like to have just one week to enjoy my Minions without the consent worry.  But it's not going to happen, and I'm ok with that.  Taking Diva home after her surgery a few weeks ago, I said to Geek, "We would be so bored with our life if the kids were "normal""  He agreed.

A friend of the Geek said to him, "I don't know how you do it.  I'd be mad a the world."  Geeks response, "What good would it do?"

Finally....some answers!!!!!

We have some answers for Diva!  She has mild Ataxic Cerebral Palsy.  And CP is most likely the cause of her cronic constipation.  As for the feeling of food getting stuck in her throat?  Well, according to her orthopedic doctor, the form of CP she has is mild so it's not likely...but anything is possible.

Her treatment plan (Geek and I are so freaking happy we finally have one!!!!) is as follows:
-PT is increased from once a week to twice
-lower leg braces to be worn part-time (so basically for school and walking trips, like the zoo)

We left her appointment feeling so much lighter.  This massive weight has been lifted off our shoulders. 

We have treatment plans for both kids.  We feel we have the best diagnoses for both of them.

Things are starting to fall into place!