Ramblings

This post is long overdue.  Can't believe I haven't posted since June!!

A quick catch up.  Summer was good for the whole family.  We always enjoy taking the summer "off" and just hanging out at my parents place down the Cape.

And then it was back to reality when we came home.  In September we had a door put on "Tim's room" to continue to try to find a way to deal with the ever present leg pounding.  Tim had his MRI and follow-up with Dr. Plotkin in September as well.  There was some new growth in an area he hadn't had before but they decided to watch it at this point and re-check it in January.  The biggest recommendation that came out of the appointment was to continue to look for a day program for Tim both for more stimulation for him as well as for respite for me.

In October Tim went to visit his parents in Florida for two weeks.  I spent some of that time in pursuit of a day program for Tim.  It has been really difficult trying to find a program close to us that will spend time working with him instead of more of just a daycare option.  I spoke to Whittier Rehab in Westboro and they informed me that they do not currently have a program but are hoping to start one in the future.  I asked if it was possible to start the program with just Tim and they said they would look into it.  Finally some progress! They said that until such time as they get it up and running, he could come on an outpatient basis for services.  So I'm working on that now - getting prescriptions for speech, OT, and PT services.  Hoping to start soon.

I pretty well feel like my emotions are on a crazy rollercoaster.  I try so hard to always "look on the bright side" but sometimes I sink back into the "this is so unfair" frame of mind.  Last night my car broke down and had to be towed.  Not something that should push you over the edge but when you're living as close to it as I am, it doesn't take much.  Having to figure out rides for the kids, appointments for Tim and I, and just the need to run out and get a gallon of milk becomes a daunting task.  People are wonderful and everyone offers to help all of the time but I think I've discovered that I really hate feeling needy.  I just don't want to be seen that way.  As much as I know people are always willing to help, I just feel like a pain in the ass.

So once I knew it could be several days of not having a car, after almost giving into the tears that I knew were coming, I decided to rent a car.  Not an expense I needed on top of the expense to fix the car, but to me a better alternative to having to ask for help yet again.  I was feeling pretty frustrated about it when I decided to take one more look around the house for a key to my in laws so I could go and borrow one of their cars.  Lo and behold I found it and canceled the car reservation.  Feeling a little better, I found a ride from one of the best friends a girl can ask for, Laura Catlin, and we went to Norfolk to get the car.

This should have been the end of feeling bad for myself except I got back home and Emma noticed there were no plates on the car.  A call to my father in law confirmed that the car is not currently registered and I would need to go back to Norfolk to get the other car.  So there I found myself crying in the car on the way to Norfolk and the way back with the correct car.

And here I am still in need of a giant hug and a shoulder to cry on but once again not wanting to ask for help. Though I guess to some extent that's exactly what I'm doing.  Why do even the normal things in life have to feel so hard sometimes?!

A Tough Month

I've said it before....I can go long periods of time feeling ok about things and then WHAM! everything gets tough to face again.  Nothing has changed healthwise for Tim.  We continue to plug along trying to find the right medications to help with his behaviors.  But here I am feeling helpless, frustrated, and back to questioning "Why me?"

I think it's partially the month of June.  We "celebrated" our anniversary last week.  For me that's a really tough day to "celebrate."  You're supposed to be able to look back at that day you got married and all of the wonderful things you've shared since.  All I can seem to see on that day now is everything that I lost.  It's not your typical wedding anniversary.  Yes, we went out to dinner but it wasn't a romantic night out.  Any trip out to a restaurant is hard now as sitting still for any length of time or holding a conversation are not things that Tim is able to do well anymore.  We got lots of anniversary wishes and reflections of how beautiful our wedding day was and I just found as the day went on I just felt more and more sad. 

And then Father's day rolls around.  This one is tougher for me to watch the kids go through.  I don't think that they find that particular day any harder than any other but both of them have talked about how their daddy isn't really a father in the way other kids have a father.  He can't help with homework, or fix things that need fixing, he doesn't follow when they try to talk to him about something happening with their friends, and let's face it when they are home alone with him they are the ones in charge.  And since his temper isn't always the best, they have to be very careful about what they say and do around him.  Unfortunately he also doesn't like to be touched so hugs and kisses are pretty much out too.

Now comes my birthday.  In the days before the brain tumor symptoms even started, Tim was so invested in surprising me with something on my birthday.  His generosity always amazed me and it was so nice to be surprised.  Now that he can't drive, the kids are in charge of trying to find me something on Amazon and he doesn't really have any part in it.  I definitely miss those days!

I have to give a shout out to my most amazing friend, Laura Catlin, who is giving me exactly what I want for my birthday this year - time with friends.  Time to feel as normal as possible, hopefully time to laugh.  I honestly don't think I could make it through all of this without times like that. 

It has been a rough couple of weeks and for someone who's not usually a crier, there certainly have been a lot of tears.  If anyone is available for a hug, I could sure use a few! :)