In Need of Some Emotional Duct Tape

Today is Peter's 11th birthday.

I am grateful for the strides he continues to make.  It would be a lie if I said seeing his disabilities wasn't ever painful.  We've accepted his diagnosis and all the crosses and blessings that have come along with it.  Sometimes it still hurts.

Peter knows that his birthday is July 31st.  When I ask him how old he is...he gives me some random answer like "it's my birthday".  He doesn't understand the question, or get that he will be 11.  That hurts....

Every year, our family members ask what Peter wants or likes...and each year the answer is still the same..."Nothing, really."  He doesn't ask for anything or really play with anything.  Sometimes he will show a spark of an interest in dinosaurs or, right now, in sharks. But it's fleeting.  Luke, at 2, surpassed Peter's non-existent pretend play skills months ago.  That hurts....

Peter needs to be on a gluten and dairy free diet.  He also can't have anything with yeast.  Those foods really throw off his sensory system and make him miserable..in turn, making us miserable.  Cooking for Peter is a challenge.  He has his small list of favorites....and often doesn't want to try new things.(Which is frustrating since gluten free ingredients are often expensive!)

Cooking is so much more than just a meal.  I love being able to cook something special for my family to enjoy.  A satisfying meal or dessert does so much more than just fill up a tummy!  I hate that I can't share that with all of my kids at the same time.  I do make Peter gluten/dairy free treats...but even the best ones are no where near as good as some of the "regular" food I make.(Sorry if that sounds conceited...it's just that the texture and the taste just aren't the same.)

I know this shouldn't be such a big deal, but since Peter's diagnosis I don't enjoy cooking as much.  It's become stressful always worrying about cross contamination or Peter swiping foods he shouldn't have.  (He hid a package of oreos in the couch a few weeks ago...I couldn't understand why he was sleeping so horribly for a few days until I saw him take the cookies out of the couch!)

Cooking just isn't as fun when you feel like you have to guard everything you make!     

When Peter was originally diagnosed 8 1/2 years ago, Jay and I went a little nuts and tried to have our whole family eat a gluten/dairy free diet.  It was a miserable experiment that no one enjoyed.  It lasted a week or two.  I still remember the day I decided that it was ridiculous to keep trying.  I made dinner with regular spaghetti and meat balls without telling Jay.  I still remember Jay's face and tone of voice when he asked me if they were gluten free and I said, "No".  A huge wave of relief spread across his face and he said, "Oh, thank God!"

We had even tried "squash fries" when Peter was first diagnosed on another person's recommendation that they were "wonderful" and "tasted just like real fries!"   Ummm...no....they don't.  The older kids still mention it occasionally...."Remember when mom and dad went a little nuts and made us all eat squash fries?".......

I'm trying to hold onto the funny moments....I'd much rather laugh than cry.  Today I will probably do a little of both.  But, my main goal, is to make today as meaningful as possible for Peter.  And I'm happy that, this year, I think I actually got him a gift he will really love and use.....a camera.  He is always stealing my cell phone to take pictures with it and he loves to look at the family photo albums.  He also likes to make an incredible mess by taking out stacks of loose pictures that I haven't put into photo albums yet or am saving for scrapbooks (that someday I will get to!!!!).  (Ugh!)

Today, I will try not to let the "what if's" or the "if only's" take over my thinking and just enjoy who Peter is right now.

I just need to pull the emotional duct tape a little tighter.....

Martha's Vineyard

We had a fun weekend on Martha's Vineyard.  My parents have a home there so we usually get to visit once or twice a summer.  This was our first time this year.

Andrew had to work so he stayed with Jay's sister and his parents.  I don't think he was disappointed because he got lots of special attention....I joked that he wouldn't want to come home!

The weather wasn't the best, but we still enjoyed the beach, and the game room, and the Flying Horses Carousel, and lobsters at Menempsha, and dinner at Giodanno's, breakfast at Linda Jean's and then Giodanna's pizza before we left on Sunday.

This year, Luke actually sat on the horse and grabbed the rings himself!  He had so much fun!

It was Kate's first time at the beach....

....she wasn't quite so sure about it!
Her siblings had a good time!

Most importantly, we had ice cream at Ben and Bill's multiple times!  Their ice cream is great....and rivals our local favorite ice cream spot, Acushnet Creamery.  The neat thing about Ben and Bill's are the flavors they offer.....particular family favorites are triple chocolate(chocolate ice cream with chocolate sauce and chocolate chunks) and, Jay and Mike's favorite, Baileys.

Peter loves the Vineyard!  He loves it so much that when we leave he cries.  In fact, he was so upset about leaving he started crying 4 hours before we left!  He cried all through church, and all through breakfast, and on his trip with Pa to watch for planes at the airport, and waiting for the ferry, the whole ferry ride home and all the way home.  The only thing that got him to stop was going for cake at Grandma's house.  She had made a cake for everyone to enjoy after the family pictures we were supposed to take but had to postpone because of the weather.

Thank goodness for Grandma's cake!

Super Dad to the Rescue...Again!

It's been a rough week with all the non-sleeping, a very clingy baby(oh, why won't those teeth just come out already!), and taxi driving...especially the lack of sleep part!  I was hitting a wall today.  It wasn't a good day to hit a wall because I have to get ready for a short weekend trip we are taking.  It's not the best time for my brain to be on "sleep fog" mode...I'll end up forgetting something important!

On top of planning for the trip I also have to have everything picked out and ready to wear for family pictures we will be taking at Jay's parents' house a couple hours after we get back.  That's not an easy task either.

So, packing, prepping for pics....not to mention Jon's doctor appointment, grocery shopping, driving my parents and a couple of my kids down to the ferry to catch an earlier boat, driving Andrew to work, going to the bank, finishing the laundry and dishes and being ready to leave by late afternoon!!!  That's my day today!

I really needed to make muffins and cookies for Peter to bring with us.  Peter's on a dairy free, gluten free, yeast free diet so having enough snacks for him, especially when we are away from home, is very important!

Last night I asked Jay to help me with it in the morning.  He ended up cooking it all last night(and cleaning up the mess).  He didn't even start it until after 10...which is usually when he is asleep on the couch already!  He finished at 11:30.  A late night, but it will make for a much easier morning.

It was such a huge help and it took two important items off my to-do list!

Super Dad(and hubby:) to the rescue....yet again!

Today's Assignment!

The value of our life does not depend on the place we occupy. It depends on the way we occupy that place.

St. Therese of Lisieux

This was the quote of the day from Catholic Digest Daily Moments.  In fact, it was sent to me twice.....I figured that was a sign that I was supposed to really think about it instead of my normal skim and delete.

I'm glad the value of my life isn't dependent on the "place I occupy."  I will never live in an incredible house or have an amazing summer home.  But, I have a home that (mostly) fits my family and we do our best with the time we have to take care of upkeep.  Really, compared to the way much of the world lives, we have an incredible number of blessings!  (Even with a dryer door that still needs duct tape to help hold it shut despite all of Jay's efforts to fix it!)

The real meat and potatoes of that quote is the second part...How do I "occupy that space?"  I wish I could say our home was always a place of peace and respite.  I wish I could say that our time in our home is always used to build each other up and encourage each other on the paths God has given each of us.

That wouldn't be the truth.

Too often, one or more persons in our family are too critical, too impatient, not loving, or struggling with something internally that makes them unsettled and they end up taking their feelings out on the people that love them the most.

Too often that person is me!

I am running on days of broken sleep, due to a baby and toddler that continually stir during the night and now, on top of that, because of fear.  Turns out that our neighbor's house alarm went off at 4:30 am two days ago because someone actually got into their garage and tried to break into their house!  We live in the suburbs in a fairly quiet town.  That break in has definitely triggered a lot of insecurity and fear for me and is now adding to my sleeplessness....and I truly do not need anything else to help me not sleep(Kate and Luke do a great job on their own!)!

   

Fear is a tough issue for me.  Now that I feel like I've worked through the issue of grief over our kids growing up...at least for the moment!(click here to view that post)...I think I have my work cut out for me with all my fear problems!

To deal with the issue at hand, I'm just not sure how to regain a feeling of safety.  We are making sure all the doors and windows are locked before we go to bed, but there are going to be nights when the windows will need to be open.  I just don't know if I will ever feel safe enough to sleep soundly with windows open ever again.

I'm thinking we should get an alarm system...Jay's talking about a dog.(Umm...no...sorry, honey, been there. Done that!  Not that I don't like dogs...but they are a lot of work and I am cleaning up as much poop as I can possibly handle right now with a baby and a toddler who has no interest in potty training.  I don't have the energy to care for one.more.thing!  Not to mention the dog hair!  We had a nice lab named Ben who died 4 summers ago.  Just when the kids and Jay talked about getting another dog, I found out I was pregnant with Luke....so the kids got a brother, not a dog!  There's only so much one mom can handle!)

Anyway, I'm rambling...and way off topic!

Goal for today and for the near future....work on making "the place I occupy" a patient, loving, life-giving environment!  That shouldn't take too long.(insert eye roll here!)

Why couldn't I have gotten this quote on a day I wasn't feeling cranky, tired, and impatient!!! 

It's All About Perspective

One of the things I've been really wrestling with over the last year is the reality that our children are getting older and life is changing(at least with the older teens...we started all over again, too!).  I have been living with the knowledge that the kids will not be part of our family in the way they always were in just a short time.  Already, jobs and girlfriends and drivers licenses have begun to change the way they participate in family life.  I realize it's a healthy and natural step in their development into young adults, but it's hard to let go!

It's happiness and grieving all at once.

There are two particular things that have touched my heart in my search for peace over these impending changes.  The first came from the book One Thousand Gifts by Ann Voscamp.  She wrote,

"I watch the hands move grace on the clock face.  

I'm growing older.  These children growing up.  But time is not running out.

  This day is not a sieve, losing time. 

With each passing minute, each passing year, 

there's this deepening awareness that I am filling, gaining time."

What if, instead of looking at the growing older and eventual nest leaving as loss.....I look at it as gain?

Picture a giant colander.  I have been looking at life in a way that meant, as my children grow and leave, more of my life will seep through the holes and disappear until all that's left is the empty colander. 

But that's not really true.  My children growing up does not mean that everything we have experienced is gone.  Those relationships will still be there...they will just be different.  Our memories will still be there, too.  

Even if they aren't living in our house our bond will still be real and our relationship meaningful.  And, eventually, new relationships will grow to include spouses and grandchildren and, God willing, great grandchildren.  

So, here's my thought...

Rather than an empty colander....my life is like a beautiful trifle.  

Each stage just adds a new layer.  

My life is more, not less.

With this perspective, I can focus on rejoicing, not so much on grieving.  Enjoy where I'm at more completely instead of just fearing its end.  

I can embrace the words Fr. Dave gave as a quote at the talk I attended last week, which is the second thing that brought me peace:

"Don't cry because it's over, smile because it happened."     

Sweet, Sweet Sleep...Where art thou!

Sweet, sweet sleep has been elusive lately.  I think that Kate is working on her two top teeth and is waking up multiple times a night.  Luke has been less than stellar as well.  I think I got woken up six times before 1am last night!  Then our neighbors house alarm went off at 4:30.  Ugh!!  Luke was ready to go at 6 am and I felt like I never really got a chance to have a true night's sleep.  It's never a good sign when I wake up praying that I will have time for a nap!

I have the kids tune, Bingo, running through my head...you know, "There was a farmer who had a dog and Bingo was his name-o" tune.  Except I'm changing the words.

There was a mom who needed sleep,

and Mommy was her name-o!

M.O.M.M.Y, M.O.M.M.Y, M.O.M.M.Y,

and Mommy was her name-o!

Ahh...the joys of sleep deprivation!

Did Someone Call For A Taxi?

I began my taxi driving services this morning with a blast from the past floating through my head.  Remember the Bangles hit "Manic Monday"?  Well, the refrain has been stuck in my head all day and I can't remember the last time I heard it on the radio?!?(Probably 20 years ago!)

"Just another manic Monday(Ohh...ooo)

I wish it was Sunday(Ohh..ooo)

Cause that's my fun day(Ohh..ooo)

An I don't have to run day(Ohh..ooo)

Ohhh...Just another manic Monday!"

I wouldn't really call my day "manic".  I did do a couple of errands this morning...but honestly I was running at a slower rate than normal today.  There was lots of broken sleep going on in our house last night and I am feeling kind of tired. (You know the kind of tired that when you stop the car in the driveway and you close your eyes and just don't want to move..until the baby screams or the toddler starts chanting for a snack!)

 Seems there will be an additional person to carpool this week.  Mike's car had a blinking check engine light and he mentioned it to Jay, who just happened to receive a phone call from our mechanic who was trying to contact our friend just hours before he(the mechanic) left for vacation.  Our mechanic(Joe), who is unbelievable(another 80's song reference...hee hee..I'm on a roll!), told Jay to have Mike bring his car by at 3.(Mercy hour!)  Joe hooked it up to the machine and, though he didn't have enough time to thoroughly diagnose the problem, deemed it unable to be driven until it is fixed.

So even though Mike will be car-less for a bit(Joe's on vaca for a week...sigh), thankfully, Mike won't be driving around potentially destroying his engine!

I guess it's all about how you look at things!  

I'm seriously thinking about getting myself a taxi sign and charging my kids for miles driven!!!!