Faces

Simon has just now started drawing stuff I can recognize.  The picture on the right is Hulk from yesterday.  I can't so much tell it's Hulk, but I can tell both of them are faces.  The one on the right is from tonight.  He's starting to do awesome things.  He's growing up.  I need to do a better job of teaching him things, though.  But he does know one letter, B.  That only leaves 25 more to go. 

Grateful

Ro & Maya

I've been reading a blog written by a mom who lost her 3-year-old to cancer last year.   I've been up reading it in the middle of the night when my sinuses won't let me sleep.  It, like other things, is making me very grateful for what we didn't have to endure.  I feel for all the other parents who end up in the ER with their child for something innocent enough, only to be thrust into the whirlwind of scans and doctors and being told you're not going home today.  It really is dizzying.  But after those first few days of wrapping our heads around what was going on and what we needed to do, it really was so simple.  Sure, the nights where Simon was angry and had a hard time sleeping wore mighty thin.  I threw myself a great pity party.  I had no idea. 

We never spent more than a week in the hospital, not after that first stint.  I think the greatest blessing we had I never had a clue was a blessing.  We never had to share a room.  TCH has only private rooms, at least on the floors we were on.  From what I'm seeing now that is not the norm.  I can't imagine having to go through that hell and not have my own private space.  And the stories of sharing rooms with mere babies and even older children being left in the rooms with only nurses to look after them for many hours or even days is too much.  We never had to worry about what the right course of treatment was for Simon.  We didn't have to travel across the country or even across the state.  We drove a half hour into the Med Center.  And so far we haven't had to sit across from a doctor who is avoiding our eyes with tears in their eyes as they tell us what no parent wants to hear. 

Maybe I should have questioned more.  Maybe, but I don't think so.  I hope not.  But I also hope we never lose our appreciation for everything about Simon and his bravery and that we're lucky things didn't end up different. 

Raising Money

I've started a fundraising campaign for CureSearch which is a childhood cancer non-profit.  I'd like to make a better future for kids with cancer.  We can do much better for these sweet souls.  Here is a link to more information.

September

September is Childhood Cancer Awareness Month.  I've thought about it more this year than last.  I guess last year I was too busy living it.  What's really brought it home for me this year is reading the daily postings of two mothers with pre-schoolers who lost their battle.  Each one is posting a bit each day throughout the month.  I tend to read about Aidan in the morning and Donna in the evening.  It hits home that not all kids are as lucky as my dear Simon.  I've delighted in their little spirits and my heart has broken with their mothers'.  One mother had to sign a DNR for her son.  The other died a little each time her daughter told her what she'd be doing when she turned 8 or 9, her mother knowing she wouldn't live to see 5.  I've actually been dreading the end of the month for I know what I shall read.  My heart has been heavy today because of what I've read.  I've cried buckets of tears.  I fear I shall also tomorrow.

Why do I do this to myself?  I really thought about that yesterday and today.  I do it to honor the children.  I do it to remind myself that our family is very lucky.  I do it because if we weren't I'd be mad as hell and would be doing just what those mommies are doing.  I'd want everyone to know about Simon to raise awareness.  I'd want to make sure he didn't die in vain.  I'd want everyone to read about him. 

I'm really feeling the need to do something for the hospital or families dealing with this now.  There is one organization that lets you adopt a family for Christmas.  I think I'd like to do that.  I want to do something beautiful in Simon's name.  In a bout of insomnia the other night I happened upon two other moms with kids who have/had clear cell also.  One is going through treatment now.  It takes me back to a year ago.  And speaking of which, here is where we were a year ago.  He doesn't even look like the same boy.  I'm so proud of how far he's come.  He had scans last week (bone and CT) and all came out clear.  I'm so happy. 

Friend

We have a new woman watching Simon now.  She's a lady from church with 5 or so kids of her own.  One is a 3 year old boy.  He just started going there yesterday, but by all accounts it's going swimmingly.  Word on the street is he's been behaving himself and even got a nap today.  Her elementary school daughters came home and loved doting on him.  He didn't even care when Daddy left him there.

This morning after I left I'm told he grabbed his bag and went to the front door.  He kept saying "I friend!"  He was so anxious to go see his friend.  He's been so isolated for so long he hasn't really been around kids except his cousins.  It's so awesome and sweet to know he now has a friend.  It kinda makes me verklempt.  Apparently today when he went over there his pal came to the door and the two of them took off to go play.  It's something so small but it still makes me so proud of him.

L for Love

The picture above is from Dodgeball.  Blaine and I saw this on our honeymoon and it was awesome.  It was us in movie form.  It was nonsense.  It had a filmstrip.  It had a water-skiing squirrel.  It had everyone in it ever.  It had ESPN 8 - The Ocho!  In this picture the wife is making the loser sign and her husband takes it to mean "L for love."  Blaine and I picked it up and do it all the time, especially when saying goodbye.

Lately Simon has taken to doing it too.  He hasn't quite got it down yet.  He kind of points to the top of his head with his fingers all spread out.  But it's the cutest thing ever.  He can't yet say "I love you" but he can do this.  Sadly, someday he's going to grow up and realize how odd his parents are.  Someday he'll probably figure out that it means something else to the rest of the world.

You Are My Sunshine

The husband is working late tonight so I got to tend to Simon all on my own.  I had to work late (yes, really!) and got home a little before 8:00.  Simon had been asleep for about an hour and hadn't really had a proper dinner.  I debated if I should wake him up or let him sleep.  The clincher was that the kid wets through a diaper quicker than I can say piddle so I figured I better at least change his diaper.  When I woke him up I asked if he was hungry.  He said yes, so I changed his diaper and got him up.  I decided to make him a waffle and some eggs.  Man, he tore through the egg so I made him another.  He picked at the waffle.

As an aside, we've been wanting to get a stereo for the living room but haven't gotten around to it yet.  I finally set up the Pandora on the Roku so we have some music now.  Simon is LOVING it.  He dances his little heart out.

We had music on while he ate.  I let him sit on my lap.  It was so quiet and peaceful.  I kept the lights down and kept kissing his head.  I love the smell of his hair.  He held froggy while he ate.  It won't be so much longer before he's too big to sit on my lap, but I can still cuddle him.  I got him in for a quick bath.  He hated every second of it, but it really does help him sleep better.  Then we cuddled on the couch listening to the lullaby station and he fell asleep in my lap as we listened to "To Make You Feel My Love".

We heard "You Are My Sunshine" once or twice which made me think of when he was born.  Eons ago there was this show called "Murphy Brown" that I liked.  She sang that song to her newborn son in the hospital and for some reason it always stuck with me.  When we were waiting to be sprung from the hospital with Simon, Daddy was asleep in the bed and I held Simon in the chair and sang that to him. 

It was such a lovely evening which I needed after a stressful day at work.  To have a quiet evening with Simon is such a treat.