Wednesday, May 22, 2013

things said and not said

Kate asked as we drove down a road that has ditches dug on both sides as it is under construction for new sidewalks, "wow! look at that! They're making moats."

Kate came home from school complaining that she had two conkers in her mouth that hurt.  I have yet to correct her and ask her several times a day if her conkers are bothering her. 

The kids were asking Joe if they could go to work with him.  Kate, who was sitting beside me, said she wanted to meet his boss.  Teresa replied, "She's sitting right next to you."

On Mother's day Kate inquired why there wasn't a kids day.  I had to bite my tongue to keep from saying something fresh.

Saturday, May 18, 2013

doing the happy dance!

It may not have been the easiest week but he did it! He is so awesome.  

Thursday, May 16, 2013

seven things about me

Seven things about me

1. I do not like confrontation. It makes me nervous and anxious and I try to avoid it if at all possible.
2. I am painfully shy and have been most of my life. I have certainly learned to come out of my shell since high school but I still dislike going to large gatherings where I know few people. Sometimes this shyness has been mis-interpreted as being snooty and that is so not the case at all. I am the most down to earth person on the planet.
3. I don't know how to do a cartwheel and this really pisses me off.
4. I've always wanted to write a children's picture book.
5.I harbor an inner Rachel Ray and love to cook. Sadly the joy of cooking gets shelved most days of the week because my days are stuffed to the gills with activities and I can't luxuriate in perusing recipes and trying out new ones.
6. Animals have always been a passion of mine. I believed as a child I could talk to animals and they could talk to me. My sister teasingly calls me Marie Doolittle.  My pets calm me when I'm worried, comfort me when I'm sad, and bring me constant joy. My pets are members of my family and I love them with every fiber of my being.
7. I am a shameless hypochondriac. I have a hangnail and I'm diagnosing myself with leprosy.

Wednesday, May 15, 2013

a few things I will never ever forget...some of which I really wish I could

that phone call from Tim...that horrible phone call that ripped apart my world before he even spoke a word...hearing him struggle to get the words out shook me to my very core

seeing my Mom...wanting to wrap her in my arms and comfort her because she looked so lost

the hugs from my brothers and sisters...hugs that you didn't want to end

seeing him wheeled by in the hall and recoiling in shock at the stranger on the stretcher...was that really him?

the kindness of the doctor who took the time to repeat his words to us several times over because when he's talking about your Dad it takes many repititions for it to even begin to make a little bit of sense

holding Dad's hand and feeling him squeeze my hand wrenches my heart even now to think about it

the hope...that devastatingly cruel emotion that resides in your heart even when you know you have little reason to hope because, maybe?

being ordered, yelled at, to leave the room when all the alarms started their noise and the terror that sound managed to create

standing in the waiting room and watching through the windows as the doctors and nurses ran by the windows, knowing they are running to save the life of your Dad and every fiber of my being praying they succeed

the nurses in the ICU bringing more chairs to accomadate our family and how that simple gesture brought me to tears

the look on the doctor's face and knowing finally that life was never going to be the same

taking a phone call from Sam after Joe inadvertently told Sam what was going on and hearing the wrenching sobs from my boy...knowing I had to ease his fears and comfort him in his sorrow but not knowing how to even begin to do that because I could barely stop from crying myself as I listened to him sob

needing to touch Dad...his hand, his leg, his hair...and the comfort I received from that contact

hearing my Mom talking to him quietly...telling him over and over how much she's loved him...that it was okay for him to go...and the miracle of him turning towards her voice

watching my children tiptoe in and say their goodbyes...a little fearful, tremendously sad, but really not fully understanding the finality of that goodbye

breaking down again and again and again and there always being someone there to wrap me in a hug and doing the same for the others when they couldn't hold it together themselves

making the decision, as a family, a single unanimous decision, that he'd want nature to determine the time of his death and not to simply exist on machines

walking in to his hospital room the next morning as they were preparing to take him off life support...angry at the priest as he gave him Last Rites and yet at the exact same time being so thankful he was there for him, my Mom, and all of us...tears streaming down my cheeks unchecked and realizing when we finished praying that I had grabbed onto the hands of my siblings on either side of me.

listening to his uneven times shuddering, at times strong and deep...and once again, hope steals into my heart, enough hope that I felt okay leaving

my phone ringing as I drove home not even ten minutes from the hospital and crying aloud "no, no, no, no" before I could answer

seeing my oldest brother waiting at the door to the ICU and collapsing into his hug sobbing

kissing Dad goodbye one last time and the horrible aching pain in my heart as we all had to walk away and leave him, all alone in that room.  It felt so wrong

It still feels wrong

Monday, May 13, 2013

I think I can...I think I can...I think I can

I sent my boy off to camp this week.  A week we've been preparing for for the last six months.  He started fundraising for camp back in the fall.  He dutifully sold coupon books and cookie dough to help fund his trip to camp.  It was sometime during the cookie dough fundraiser that he understood going to camp meant GOING and STAYING at camp.  He was going to go somewhere he had never been before and stay there for five days all on his own.  After selling enough cookie dough and coupon books to cover over half the cost of the trip, he informed me he would not be going, thank you very much.  I struggled with this.  I didn't want to force him to go.  However, I believe that the activities, field trips, and programs planned for this week are adventures he would love taking part in.  What to do? 

Our plan was to play up everything awesome about camp and do our best to alleviate his fears and anxieties concerning camp. And as far as I could tell, the plan seemed to work.  Sam left this morning after a hurried goodbye.  He got on the bus and is at camp.  I am praying to the powers that be to look over him and give him strength.  He needs it more than most.

 For many people routine reigns supreme. Autistic people take the love of routine to a whole new level.  Sam finds comfort and control in his routines.  Certain foods must be eaten on certain days and daily tasks must happen in the exact same order. Any change to routine would best be prepped for, if at all possible.  Sam can go about his day with happiness and security because he knows what to expect and what is expected of him.  But camp was a huge unknown. 

Not knowing when he's supposed to brush his teeth and having pancakes on Wednesday instead of Tuesday may not be a cause for worry for most kids, but for Sam all those tiny little changes in his routine add up.  They add up to a tremendous amount of I don't know and that is incredibly scary. 

He will be with the entire sixth grade.  All familiar people.  His teachers will be there.  Dad will stay over two of the nights.  He's memorized the daily schedule.  I'm praying he can focus on the adventure and not on the unknowns around him.  I'm praying he doesn't break down when things get a little challenging.  I'm praying his friends and teachers give him the extra support he so desperately needs this week.  I wish with all of my heart I could be there with him.  But in my heart I know this is something he needs to do on his own.  And I believe he is ready.  He has what he needs to handle any difficulties that may come his way.  I have told him this many times these last few weeks leading up to camp.  I pray that he believes me. 

What I didn't prepare for was how very much I would miss him.  I can get through this...right?

Thursday, May 9, 2013

really...where does the time go?

In the blink of an eye she went from a pudgy round faced little girl to a tall, graceful young lady.

She truly takes my breath away.

Tuesday, May 7, 2013


I find myself sitting on the sidelines a lot these days.  Baseball, softball, basketball...I am the designated cheerleader.  Sometimes I holler loud and other times I mutter quietly to myself.  Not just my kids either, I cheer on all the kids.  Whether they're on "our" team or not.  A mom at the softball field asked me the other day, "which team are you rooting for?" when I hooted my support of a particularly impressive hit made by a girl on the opposing team as our daughters.  "All of them." is my answer.  I cringe inside when I hear parents yell, "strike him/her out!" Really?  They're little kids.  Even when they're a little bit older, cant you just encourage the pitcher rather than yell something that may stab at someone's sense of self?  I'm just not cut out for sports.