More changes

It seems like we just when we settle into a routine the cosmos decides to shake things up to see if we are alert and on our toes.

Since all I do is sit at home, watch soaps, and sip pina colodas (not) all day.  Haha.  First of all I have never had a pina coloda and second of all I hate soap operas.  I prefer reality tv thank you very much.  Throw in a salted caramel brownie and my life is complete.

The children both have big changes.  One of our biggest changes is Cary Lynn's professional health care team.  VCU has been really awful lately.  We still have some good departments and people but frankly telling me that my kid is going to die and there is just no point in doing much with her does not really thrill me.  Yes, it has been said.  Yes, I do know that she does have a shorter life span.  However, I don't need it to be pointed out repeatedly and beat into me.

Plus we are also loosing our neurosurgeon.  That is not a big loss in my book.  Many people liked him but I was never overly impressed.  Anyone who does not care to spend more than 5 mins and 42 second with you (yes I did time his last visit with us) does not deserve my respect or admiration.  I really believe that we are partners together and I don't appreciate being shoved off on the nurse practitioner.

So we are moving some of Cary Lynn's care to UVA.  I met with her developmental pediatrician last week and not only did she hear what I was saying she heard what I didn't and couldn't say.  She took time to match us to good people that fit what we were looking for in Cary Lynn's care.  I also had the privilege of "firing" her old team.  It was kind of liberating.  OK, it was downright great I won't lie.

We also are bucking the system on education.  Cary Lynn ages out of Early Intervention in October.  For some reason everyone starts jumping the gun to send them to school.  Like if you don't send your special needs child to school you are a horrible parent.  There is a lot of pressure.  But Cary Lynn just isn't ready. Period.  The powers that be are super surprised that I am refusing school for her.  That I am just not so excited about that.

There are a few reasons why we're not ready.  Cary Lynn has CVI.  She is still in beginning phases.  A child with CVI needs huge amounts of modifications to be successful in the classroom.  Modifications I'm sure that our county won't be able to accommodate.  Plus she is medically fragile.  She requires lots of extra care and still has lots of doctors to go see on a weekly basis.  And we get great services from our outbound therapists.  And her level of development is more like an infant than a nearly three year old.  She just isn't ready yet.  In a few years she will be ready for home bound services but that is a long way off yet.  She needs time to get there.  Time is a precious commodity in our home and I am OK letting her have a chance to grow and blossom.

Marvin too has changes.  We took him to a developmental clinic and are now visiting with a neuropsycologist.  He is great.  We have ruled out what Marvin doesn't have but still have a long list of things that are going on with him.

He struggled so much this last year.  His first year of school was great but this year just wasn't.  Even with an IEP things just weren't good for us.  For him.  Sometimes you have to make really tough choices when you want your kids to learn.  You have to honor the way they learn and what their needs are.  Marvin has had to have tutoring to catch up this summer.  The things that he supposedly passed on are what he is struggling with now.  But the good news is that we are making progress.  The bad news is I feel that he should already know these things.

So after consulting with Marvin's team the solution we came up with was to try out a smaller environment for him.  He also needs his unique learning needs addressed and we have hopefully found a school that will help us do that.  It was a hard choice for our family.  But sometimes you have to do what works for your situation.  We are very excited about this and hope that we have found a good spot for our son.

I really wish that I could say that I embrace change and some sort of Miss America crapola about it.  But honestly, I hate changes.  I have eaten the same thing for breakfast for years, wake up and go to bed at the same time, and love my routines.  If you throw off my groove my world comes to a screeching halt.  Really. I can be quite the spazz in that department.  But life is about change.  It isn't about making you happy or comfortable.  And when you have kids special needs or otherwise you don't always get your cozy happy routines.

But I am ready for these changes, because honestly, the routine wasn't working.  It was becoming toxic to our family situation and way of life.  And so we made the changes to bring healing and hope to our family. Because at the end of the day I have to honor my children's needs and work to make things better for them. And eat that brownie that is calling my name.