Two steps forward, three miles back

Now it is October and we've been here there and everywhere.  Last October Brandon was Baker Acted for audio and visual hallucinations.  This year at this time he is mostly stable.  Since March he has lost 48 pounds.  We've been to the pediatrician who's sent us for lab work, and an MRI of his brain.  She's send us to a neurologist who's sent us for lab work, and EEG, and an MRI of his spine.  He's send us to a neurosurgeon who then sent us back to the neurologist.  And round and round.  He has gained almost 2 pounds since his MRI of the spine which is a good thing.  He needs to have eye surgery still but we were waiting to see what all these tests were going to tell us.  Which was NOTHING!  His bipolar seems somewhat under control, he's not violent now, just mouthy and inappropriate.  He needs his ADHD meds adjusted but he can't have stimulant medications and his insurance doesn't cover any other the non stimulant options because of cost.  I've been putting this off as well until the weight loss issue was addressed.  The neurologist felt his weight loss was a major concern, but couldn't explain why he was losing so quickly.  While examining him he became greatly concerned with his gait and balance and gave him a generic "gait disorder", and "movement disorder".  We go back on Monday for who knows what.  Possibly another round of tests, or a referral to yet another specialist.  I'm getting frustrated, this same thing happened when he was 7 and the pediatrician was concerned he had neurofibromatosis.  Cat Scans, lab work, eye specialist,  and a trip to All Children's to see the genetics specialist and no further answers then.  I think after awhile I just get frustrated and stop all the nonsense.  Maybe there is no explanation for the mystery called Brandon.  This is just how he is?  No reason?  Progression of his bipolar disorder (neurologist mentioned this) whatever that may mean?  What does that even look like? 

Another concern I've had is with Noah, my little guy.  He's been having some wicked tantrums and it scares me that I'll have two Brandon's.  Of course that's not a realistic statement, but after what I've been through with Brandon it scares the shit out of me.  Having Brandon in my life has changed me forever.  It's changed my view on the world, and changed me into a parent that I'd never thought I'd be and never wanted to be.  When I had Kaylin I made sure she ate enough vegetables, did craft projects, flash cards, homework, etc...  Since Brandon came, everything I ever envisioned when becoming a parent flew out the window.  I have become that insane woman in Wal-Mart that you see with the three wild kids.  Having a Brandon, if you've never had one, makes you realize that what you think things should look like from the outside don't matter.  It doesn't matter what people say about you, your parenting, your housekeeping, or anything.  If you don't live it, you can't possibly even understand or even try to.  It has taught me to be less judgmental, more caring, more tolerant, more patient, more humble, and more dependent on anti anxiety medication.  It has taught me that my "normal" is different that your "normal" and that's okay.  It's okay, right?

I had a talk with my dad a few weeks back which really made me think.  He always has a way of saying things that make me think in a different way, which is awesome!  I was talking about those moms that work full time, go to college, have joined all the committees, and super involved with everything.  I was venting about how I can't get that work/life balance I so desperately thought I craved.  He told me that balance is a myth, and he is right!   I've decided that thinking there has to be a balance has set me up to fail, and to always fall short of my unrealistic expectations.  Expectations that society has placed on me to "do it all".  This is why I'm okay with serving only mashed potatoes for dinner, why I let me son go to school looking like he is in his pajamas, why my 4 year old plays too much on the iphone, why my daughter mopes in her room like I've ruined her life.  In the big picture, the big scheme of things, none of that shit matters.  It matters that I'm giving my kids love, acceptance, setting a good example by working hard, encouraging their individuality, teaching what's right and what's wrong and hoping that they turn out to be semi productive humans.  Or just humans. 

I hope that my kids make better choices that I did growing up so that they can be productive and not struggle financially.  It's frustrating day to day and check to check.  I work hard and hope to reap the benefits financially someday.  This month is Kaylin's birthday and I'm scrambling to pay the late bills from last month, have a party for her, would love to get her an awesome gift, and still have to buy Halloween costumes on top of this months bills.  Next month and the month after, and the month after will be the same song over and over and I hate it.  I'd like to get my van fixed and pay off my debt and do some home repairs or move into a bigger home.  I'm happy with what I have and am not being ungrateful for what I don't have.  I guess I'm just frustrated and don't want my kids to make the same mistakes buy not going to college, or having kids at a young age.  I'm done whining, sorry!