Yeesh!

Wow!  I'm terrible at updating, aren't I?  I can ramble a bunch of excuses, but sometimes it just comes down to the fact that updating is admitting that my life is crazy, hectic, and stressful.  It's that double edge sword...  I don't mind blabbing.  In fact, some times it does feel good to purge and let it all out.  But there are times when it seems very daunting...  I'm a freak, I admit it!  :) 

Let's see, where are things at right now?  Basically a stand-still.  Forrest is now done working.  It's good for him to have the time off, it just adds a little to my anxiety.  We bounce checks with both our incomes.  Now we have only one to survive on...  Yikes...  It also tangles up a lot of other "trickle down" factors.  We will now have to change insurance to take my (very expensive) insurance.  We've always used Forrest's as it was better than mine.  Better coverage, lower co-pays/deductibles, etc.  Now we switch.  I guess that's not really a huge deal, but the insurance I have means we have to change all our doctors.  We've had the same family doctor for 14 years.  When I walk into the office, my doctor hugs me.  He asks about the kids sports, family activities, etc.  He knows our entire history and knows us as people.  I have complete comfort going to him, and trust and respect his professional opinions.  Now, we have to switch.  We will also have to start over with a new oncologist.  We've been working with the same people since this all started.  They know every little detail of every little thing that we've been thru.  I know the nurses on a personal level and can text/call them ANY time.  Whether to make an appointment, ask a favor, or hang out - it doesn't matter.  They're always there!  ALWAYS!  When something is going on with Forrest, we immediately have an oncologist and 4 nurses running to try to figure things out, and make things better.  When Forrest has opinions, desires, or preferences, the doctor LISTENS to us.  He respects our opinions and feelings, and works with what we want.  We are never pushed or pressured to do something we are not 100% on board with.  Now, after all these years, we have to start over.  From the stories I've heard, that isn't always the case.  In fact, I don't think it's even the norm.  I think it might even be rather rare.  I hate that we have to switch, but I recognize the fact that there is no way we can afford to keep our doctors and pay 30% of oncology bills.  So, come September, we will find all new doctors and start at the beginning.  When kiddos are sick, I will have to work with new nurses and doctors to set up appointments, and then drag them 30 miles to get them there.  Same goes for Forrest...  Difficult enough to get him to go to the doctor, now I have to drive half an hour just to get him there.  No fun! 

Hmmm...  Time to whine about something else?  :)  I've always got more, haha! 

There are times when I find myself in one of "those" moods.  Today must be one of those days!  :)  Today, I feel frustrated.  (I think that's the feeling, but I am not honestly sure...)  People tell me on a regular basis what an inspiring family we have.  They tell us how great it is that we do the things we do.  We're told how amazing it is that we spend so much "family" time together.  We are always trying to get out and do fun things as a family.  People say they wish they could be like us.  They want to look at each day and say, "Hey, let's make some memories!  Let's live life to the fullest!  Let's how important we are to each other today!"  But, I sometimes wonder if they have really thought that through...  Certainly, we try to take a lot of pictures, and we are constantly trying to make positive memories.  We have bonds that are different than most families.  We've laughed and cried with each other.  We've talked about life and death.  But our understanding runs deeper than usual (I think), given all that our family is dealing with.  It's great that people look at us and see a close family, who love each other deeply, and spend a lot of time together.  It doesn't bother me a bit that people look at that, and want it for their family.  But, when I consider the process it's taken for my family to get to that point, it makes me shudder.  The things in life that have brought us to these realizations are not things I'd want any family to face.  Ever.  :( 

And, it looks wonderful on the outside, doesn't it?  But what about when you really dig in?  Now, I've never been shy, and I'm willing to talk openly about quite a bit.  If I ever hesitate to talk, it's not my lack of desire to share.  It's that I feel like such a downer.  I can talk with a group of smiling friends, and in 2 sentences, I can have everyone frowning, hugging, and wiping tears.  Who wants that???  Now my friends will always insist that they want me to talk, they want to know what's going on, they like when I share.  But really???  I don't think they do.  Who wants to hear the depressing details all the time?  It's something that we fight with as a family, every day.  And it's the little things that most people wouldn't even notice.  Or, in isolation, think is normal.  (Hmmm...  I think I'm losing focus.  Let's see if I have some examples that illustrate.)

Jessica: On the outside, all is well, right?  But, there are the little things that eat away at her.  She has a difficult time with friends at times.  It manifests in different ways at different times.  Sometimes, it's the lack of being able to relate to her friends.  Her life experiences are so vastly different, she has a hard time relating to girls being upset that someone didn't come running over to notice their haircut (or any other silly reason, according to Jess.)  Jess is frustrated that her friends are consumed by trivial things.  They worry about "stupid stuff."  She has a hard time relating the stress they have to the stress she feels.  It can make her seem almost insensitive at times.  She also needs constant reassurances from her friends, I think.  She wants to know everything is okay with her friends, all the time.  She's frustrated that her friends might be mad at her, and she doesn't know why.  Still in line with friends, she has a difficult time understanding why her friends cry over something someone did.  They feel terrible and cry on her shoulder and Jess comforts them.  Then, the person Jess comforted will do the very same thing that made her cry, to someone else!  Jess says she talks to her friends and says, "You know how that made you feel, why would you do that to someone else???"  She has wisdom and understanding that surpass her 13 year old body.  It can be challenging for her at times!  Finally, she doesn't sleep at night.  She's up all hours of the night.  She may fall asleep, only to wake in the middle of the night.  Or, she can't fall asleep until very late.  I think it's the anxiety her body is feeling.  That constant turmoil.

Luke: Luke has always been a very sensitive boy.  He's always been patient, understanding, and very caring.  But lately, we can see differences that just are not normal for him.  First, he's VERY emotional.  Now, all kids can be emotional.  I get that.  But Luke is definately at an extreme.  He cries over anything and everything.  All the time.  We've also noticed some very destructive behaviors.  It started with a wii controller.  Ben came up to let us know that Luke broke a wii controller.  I had no idea what he was talking about, but on further exploration, I found he had broken a nun chuck for the wii.  No big deal.  Accidents happen, right?  But, this wasn't a casual, oops, I broke it.  Luke CHEWED through the wire for the controller.  What??!!??!!  When I talked to him about it, he couldn't explain why he did it.  He didn't know.  Then we found a pair of underwear that were SHREDDED.  At first Luke said they ripped.  But when we looked at it, the waistband had been cut with a scissors.  We asked again, Luke started to cry and said he was just so mad and he ripped it up because he was mad.  It was like I'd been slapped.  Luke?  Angry?  THAT angry?  Oh my!  I've recently found a tank top in the laundry that was also shredded.  I assume the reasons are similar, but I didn't ask Luke about it.  I don't know how long it's been down in the laundry, and sometimes it's not worth bringing it back up.  But, these issues stem from the anxiety that is swarming inside of him and he doesn't know how to deal with it all.  We try to talk to him about better ways to work through anger and frustration. But, I hate that he has to deal with this to begin with!

Benjamin: Even little Benny, at 5 years old, shows signs of stress.  His latest this summer, has been an anxiety with separations.  Any time Forrest or I leave, the boy will break down and sob.  He will cling to us, and beg us not to go.  If he realizes we are leaving anyway, he will cling even more and beg to come with.  Ben has never been clingy like this.  I'm not sure why he's feeling it all of a sudden, but it's been terrible.  It's even worse if Forrest and I are both going somewhere! I dread to think what will happen when I have to go back to school, and when Ben starts school.  :(

So, anyway, on the outside everything looks wonderful.  But just under the surface, there are so many challenges we are trying work with!  Each of the kids stresses.  Little things with Forrest.  (For example, each morning when I leave I give Forrest a kiss and hug.  Not something unusual at all.  But it's an important part of my routine.  Each morning when I leave for work, Forrest is sleeping.  When I kiss and hug him, I usually wake him a bit.  Given how terribly he sleeps, I feel bad about waking him, but I have to.  I check on Forrest each morning, at his request.  He is terrified that something will happen and the kids will find him, and he's passed away.)  I find it difficult to believe that anyone would want to have all these things hanging over their head to better appreciate how important their family is to each other! 

Okay...  I've been rambling quite at bit!!!  I'm sorry!  I'm not sure this makes any sense to anyone but me...  O well!