Mountain Highs and Valley Lows

There is no black-and-white situation. It's all part of life. Highs, lows, middles. -Van Morrison

That is the truth.  When you parent special needs kids you ride that high/low wave.  This past month has been full of mountain highs and valley lows for us.  While I was in church I spent a lot of time thinking about the past month.  The good, the bad, and the downright frustrating.

We've been dealing with our school system.  It hasn't been good.  LCPS is supposed to provide some very basic services to my daughter.  I'm talking about bare bones here.  They basically need to check in once a week and see if she's still breathing.  Not too challenging in my book.  School has been going for a month and right now we have yet to have any services provided.  We had someone lined up but at the last minute this paragon of virtue decided not to do their job.  I've emailed our school board representative but they also chose to ignore me.  It's sad that she has to go without minimal services.  But out here it's really not unusual.  Which makes it even more sad.

Marvin has an MRI this week.  I'm used to Cary Lynn having them but for Marvin this was something new.  UVA wants to check out some "suspicious" items.  They have tried to get his early MRIs he had beforehand, but so far when Marvin became our son his previous records disappeared. What if they find something?  He already has so much going on I really don't think he needs more. He also developed Osgood Schlatters disease.  You can read about it here, but basically it's glorified growing pains.  Fun fun fun.

The insurance has changed here as well.  We've all been moved to something called CCC+.  It's basically an MCO.  I've spent hours on the phone trying to figure out what Drs. are covered.  We also just got a call from Marvin's psychologist's office about insurance.  There is this really big myth that insurance covers it all.  It doesn't.  We pay out of pocket for a lot of stuff.  Therapies, medical supplies, some Drs., and extras.  Those things aren't cheap.  As I'm writing this I've found out my daughter's food supply may be in danger.  If insurance decides to stop covering it that's $3,000 we will have to cough up to make sure she eats.  Little things add up.

My husband works really hard.  I used to work.  I now am a full time medical manager.  I miss working.  Not just for the income, but because I miss adult conversation.  I don't always find fulfillment in Legos, Minecraft, Peg and Cat, and discussing the importance of proper hygiene.  Go figure.  Or just a break.  My family is coming in a couple of weeks and I'm so grateful.  They will provide much needed respite but Colorado is a long ways a way to get the support that we need.

Despite the valleys, our mountain views have been really good.  Cary Lynn has managed to gain about 20 pounds in a year.  We now don't have to see the dietician as often, yay!!  She has had a good stretch of being healthy.  For that we are thankful.  She also is getting home educated (because I can't trust the school system to do their job). and is a feisty, sassy, and lippy kindergartener.  I tell her she's my most difficult pupil and she spits at me.  So we are off with a bang.

We tried school for a little bit with Marvin last year.  After talking with his team, the increase in his appointments, and the need for very tailored learning accommodations he's back at home.  He's doing really well and keeps saying he is glad to be back at home.  Not every kid is going to do well in a school situation.  We've accepted that Marvin is unique and that this is the way he learns best for this season.  Now he's a confident fifth grader and able to advocate for his learning needs.  Plus he delights in showing his younger sister how school "is supposed to happen".

All in all we are marching forward.  We may get knocked down but we always get back up again.  I'm proud of us all.  I'm also thankful for the blessings we have.  The kids are healthy, they are learning. Despite repeated hygiene conversations, I'm pretty happy too.  We will get through the valleys because my kids deserve more time in the mountains.  Here's to hoping we spend more time on the mountains this month.