Little Critter

This afternoon I laid on the bed and read--out loud.  I read Little Critter books written and illustrated by Mercer Mayer.  I was reading to Clown--Ian's stuffed toy from when he was a baby.  I've read those books hundreds of times.  All 3 of the kids loved them.  I bought the first one at a warehouse in Tracy when Ian was just a few months old.  It was  Just Go To Bed.  It's pretty ragged  by now.

Some of the other favorites were  Just a Daydream  about becoming a Superhero and taking care of the neighborhood bully; 

Me Too  about the little sister who wants to do everything her brother does;

 and  I Was So Mad  about being told no, and wanting to run away.

The kids grew out of the Little Critter book collection a few years ago.  The books didn't go in the donation piles or in the yard sales. I couldn't part with them.  I kept the whole stack in my closet on a shelf.  I figured I could read them to my grandchildren someday.

Last year, on this Sunday,  Ian was in the hospital,  but he seemed a little better.  Lucy and Mikey came with Keith to visit and we took Ian on a (wheelchair) walk up on the roof of the hospital.  Shortly after they left to come home,  he said he wanted me to take him on another walk.  I just pushed him around on the floor,  but he tired  pretty quickly.  On the way back to the room, we passed a book cart.  I spotted a Little Critter book.  It was Just Me and My Mom. 

We stopped and I asked Ian if I could read it to him.  My nearly 16 year-old son humored me and sat quietly in the wheelchair while I read out loud to him one of the books he and I both knew by heart.  That was a gift.  In less than 24 hours he was gone.  I feel like some angel placed that book there to give me one last chance to mother my son. 

I probably read 10 or 12 critter books  this afternoon, but not Just Me and My Mom.  I might not read that one ever again--in a good way.  Why smudge that memory?

A Year Coming

This has been the post stuck in my head for weeks--keeping me from writing other things.  It's haunted me for a year.  The doctor in charge of the CCU at Lucille Packard Children's Hospital at Stanford gave me his card before we walked out of there without our beloved son.  He said if we ever wanted to contact him, we could.  I do.

Dear Dr. Roth,
It was a year ago today, Friday, that we brought our son Ian to Stanford.  You said I could contact you if I ever wanted to.  It's taken me this long.  Before I say anything about the 4 days he was at Stanford, I want to tell you one of my memories of a stay at Boston Children's.  It was a long stay, in fact I don't even recall which one or what the specific issue was, as there were so many stays and varying issues.  I remember you coming into Ian's room on 6 East very late at night and kneeling down next to my makeshift bed.  You spoke so softly and told me Ian needed to be moved (or moved back) into the unit.  I cried and you said the best thing for Ian was to have better supervision and resources.  You were so kind.  I trusted you.  I thought your manner with me and with Ian was so respectful.  I never forgot it.
I heard years ago that you were now here on the west coast.  I actually wondered if someday we would have to see you again.  Then 2 years ago we went to an A's/Redsox game and you walked right past our seats.  I wanted to grab Ian and follow you to show you how big and healthy he was and thank you for what you had done for him.  He had done so well since his fontan 10 years before.  I think only 2 caths in 10 years.  We were lulled into thinking he would grow up and live a long life.
I have so many questions.  I haven't asked because I know how things work.  I won't get answers, but I want to ask anyway.  I know you have MandM conferences and discuss what goes wrong.  Did anyone say,  "Gee, his kidneys were failing,  his liver was failing,  his temp didn't even register on the thermometer,  Maybe we should have done something."  I couldn't sleep for months because ever time I layed down I could hear Dr. Oleson saying,  "I don't think we need to bother the cardiac failure team on the weekend."  I don't know if Ian heard her say that, but I did.  Can you imagine what that has done to me?  I had to leave my son's body in that place where I don't think enough was done for 3 days and then it was too late when he was finally brought where he needed to be.  I blame myself for not bringing him sooner, for not shouting at the doctors  and telling them myself that his heart was failing.  I'd seen it before.  I knew what it looked like--but I trusted and I didn't want to scare him and I wanted to deny what I knew.  But I trusted they would see it and fix it--and fix my son.  He's gone and I want him back.
Many people advised Keith and I to pursue action against the hospital.  We haven't.  They say we need to make things better for the children who come there in the future.  I remember telling them that I don't care about any other children, mine is gone.  I told them I didn't want to wreck any doctors' lives.  I just want to know that behind closed doors somebody said we should have done things differently.  Again, I know, you can't tell me.  Almost 16 wasn't old enough for my son.  He  had  plans.  He wanted to serve his church for 2  years in an exotic place with cool food.  He wanted to be a chef or a movie critic or sportscaster.  He wanted to have a girlfriend.  He wanted to beat heart disease.
Now I'm left with the guilt of not only giving him that broken body, but not keeping him alive in spite of it.  I'm sure you've saved hundreds of kids' lives.  You saved his--in Boston.  I wish we had been there last summer.  I think the outcome would've been different.  I'm sorry for saying so.
Please tell the doctors to be careful what they say.  We hear them even when they think we can't.  Please tell them never to work on the premise that it's just a stomach bug.  Please tell them  that parents need to blame them, because if we don't, we blame ourselves.  Please tell them to check the personal effects bags more carefully so that clamps and viles of drugs that didn't save someone don't end up with parents who bury their children.
Ian was and is a miracle boy.  The ache doesn't go away.  We aren't fine.  We never will be again.   Thank you for your part in keeping him with us as long as he was.
Sincerely
Michelle Gleason

Not Just Getting a Tan

So,  I was just laying in a lounge chair while Mikey and a friend were swimming today.  I started to think about how long it had been since I prayed--myself--personal prayer.  I don't even know.  I remember it.  It was at night.  Before bed.  I got back up and went downstairs to turn on the TV after it.  Praying makes me sad--very, very sad. 

Prayers start with "I'm thankful for..."   and even though I have a lot... 
Then you get to the "Please bless me to..."  Those aren't great either. 
I don't even know what to ask for.  How do you ask for anything,  when you can't ask for what you want?   Praying makes me cry.   All I can say is please forgive me for all the things I've ever done, so I can see my son again someday.

As I lay there face down (sunning my back),  I thought how horrible I was for not praying and decided that it might be good to do it right there.  How much bawling could I do with all those people around?  And even if I did,  my face was down.

Here's what I came up with:

I'm thankful I got as much time with Ian as I did.
I'm thankful that we were so close and he shared so much with me.
I'm thankful that he isn't suffering right now.
I'm thankful to know where he is.
I'm thankful for all the things he taught me.
I'm thankful that he has Keith as his dad.
I'm thankful that he had so much faith and was so diligent.
I'm thankful that he touched so many people.

There were several more things.   It was a good prayer.  I cried.  Nobody saw. 

It was kind of  like life now.    Nobody sees.  I put on a brave face and pretend.  I can't even talk to God about it.

Days of 47

July 24th.  Pioneer Day.  When I was a kid, it was my least favorite Sacrament Meeting.  All the boring stories about people who lived 100 years ago.  That sounded like forever ago, but it's over 150 years now.   I guess age and experience have taught me to appreciate those old stories because today when they were overlooked,  I really missed them.   I've heard it said more than once that Pioneer Day is just for Utahns, but I don't agree.  Sure, the church was restored on the east coast, but all the faithful saints did as they were asked and trekked across a wilderness to preserve the gospel legacy for those of us to follow.

As a missionary is Hong Kong,  I saw the Chinese members commemorate Pioneer Day.   They were so thankful for the stalwart.  They recognized that from a very humble beginning the worldwide Zion was established.

We did sing two hymns today in honor of the pioneers.   The first one made me cry.   I've sang it hundreds of times and always connected it to the pioneers of 1847.   Today it was about me and my life and my toils and sorrows.

Come, Come, Ye Saints  by William Clayton

Come, come, ye Saints,  no toil nor labor fear,

But with joy wend your way.

Though hard to you, this journey may appear,

Grace shall be as your day.

'Tis better far for us to strive

Our useless cares from us to drive;

Do this, and joy your hearts will swell--All is well!  All is well!

Why should we mourn or think our lot is hard?

'Tis not so;  all is right. 

Why should we think to earn a great reward 

If we now shun the fight? 

Gird up your loins;   fresh courage take. 

Our God will never us forsake;

And soon we'll have this tale to tell--All is well!  All is well!

We'll find the place which God for us prepared,

Far away in the West, 

Where none shall come to hurt or make afraid;

There the Saints will be blessed.

We'll make the air with music ring,

Shout praises to our God and King;

Above the rest these words we'll tell--All is well!  All is well!

And should we die before our journey's through,

Happy day!  All is well! 

We then are free from toil and sorrow, too;

With the just we shall dwell!

But if our lives are spared again

To see the Saints their rest obtain, 

Oh, how we'll make this chorus swell--All is well!  All is well!

I got through the first verse pretty easily,  thinking about the pioneers.  Then the second verse started and I got all choked up.  "Why should  I mourn or think my lot is hard?  'Tis not so, all is right.  Why should I think to earn a great reward If I now shun the fight.  Gird up my loins, fresh courage take.  My God will never me forsake."   It's not a pioneer song.  It's a be strong and don't give up song.  Now,  just like 150 years ago.  How hard must it have been for them to sing that song as they walked?  How choked up must they have been singing those words after having their homes burned down and their husbands beaten and their children dying of malaria or exposure or cholera? 

I've always had great feeling about the last verse.  I remember the Mormon Tabernacle Choir always used to sing that verse in this awful minor key in such a mournful way.  I always said to Keith,  "That's the happiest verse.  Why are they doing that?"   They've stopped over the last few years.  In fact,  the last time we heard it,  they sang that versed triumphantly--like a Hosanna.   (to watch on youtube click here)     Today that verse made me think of Ian and how it was a Happy day for him to be free from the toil and sorrow his earthly body presented him with and how he is now dwelling with the just.

I'm certainly not to a  point of   "All is well."   In fact,  this month has been horribly challenging--to the point that I have nothing to say--nothing to write because I know nothing can make me feel better.   The ache is here to stay.   The anger isn't going away and I don't have some great lesson learned that balances out the devastation of having my son ripped away from me.   Someone said to me today,  "I didn't really know my father.  He died when I was 16.  How well can you know someone when you're 16?"  

Will my son forever be 16?  Did he really know me?  There are a million questions and most of them have different answers everyday.   The big one is who am I now?   My job, my life was caring for Ian and keeping him alive.   No matter what anyone says to the contrary, part of me will now forever feel like I failed. 

Back to the hymn.   I thought a lot about the first verse after singing it today.   The phrase  "Come, come, ye Saints"  is a  plea for us to come unto the Savior,  no matter when we live.  It's a counsel to not be afraid of what we are asked to do or what challenges we are given.  It's a promise of grace as long as we strive to be our best and leave the useless behind.  We can be happy and all can be well--no matter what burden is in the cart we have to push.  Here it is again:

Come, come, ye Saints,  no toil nor labor fear,

But with joy wend your way.

Though hard to you, this journey may appear,

Grace shall be as your day.

'Tis better far for us to strive

Our useless cares from us to drive;

Do this, and joy your hearts will swell--All is well!  All is well!

Pioneer Day and pioneer hymns are for us now.  They are for me now.  I hope I can remember what this meant to me today.

Summer 9 years ago.  Cutest boy ever.

Lucy, Mikey and I went with friends to a really great water  park today.    Had tons of fun.    Still felt lonely.    Still felt cheated.    Still  felt guilty.   But glad I went.  Glad I have a friend.  Glad the kids had fun.

A New App

This weekend I had an idea.   I'm sure it's not original and it already exists but...   Wouldn't it be a great app if you could press a button on your cellphone and the screen would turn into a mirror?   You could check yourself anywhere,  anytime.

I wish I had that app.   I need to check myself--about 100 times a day.  Maybe with that I could see what everyone else sees.  I could see what I put "out there".   I could see why my daughter and my husband think they need to apologize to me all the time.  I could see the looks I toss around that distort the words I say.    I could start there--start being the key word.

I told Keith that all  he's sees in me is anger.  That's not fair.  Maybe that's all I would see if I was on the outside.  I do it to him too. 

This weekend was indescribable.  Can something be wonderful and horrible at the same time?  It can and it was.  It was great to see my brother.  It was great to see my niece and nephew.  It was great to go away for 3 days.  It was great to see Lucy and Mikey laughing.   It was great to see Keith relaxing, even if I ruined for  him off and on. 

It was horrible to actually feel Ian's absence--not that we don't all the time.  I don't even know  how many times I actually turned around looking for him, thinking we had lost one of the kids.   I almost called out a time or two,  "Wait,  some one's missing."     It's horrible to  be doing something and  think,  "Ian couldn't do this.  We wouldn't be doing this if Ian were here.  Ian could never walk this far.  Ian couldn't take this heat.  Ian would just be watching them;  he'd be exhausted."   It's horrible to see Mikey throwing up and laugh and say,  "Well it wouldn't be the Gleasons if there wasn't throwing up during a fun activity."     It was horrible thinking about what souvenirs Ian would be begging for.  It was horrible seeing how much his cousin has grown in a year.  It was  horrible to say to my brother,  "We've never had the luxury to stay this long and get this tired at an amusement park,"   and then feel guilty about the way that sounds.  The worst horrible--trying to pretend all the way home the Ian would being here playing video games when we got home,  just like he was when we went to Yosemite without him.

I think maybe that might be the reason  Keith and I think the other is mad all the time.  How can we possibly be in this much pain unless someone is mad?  It's like people describe having a phantom limb.  Even if it's gone,  it's still right there in the room,    in the car,   at the beach,   in the restaurant--aching. 

I think, truth be told, if I had to pinpoint the emotion that shows as anger,  it would be fear.  I know things can die.  What if I kill my marriage,   my friendships,   my testimony,    my children's confidence,    my husband's spirit?   I could be wrong.  I'll admit that--upfront.  Maybe it is anger all the time.   Maybe there isn't room for all the rage I have to be focused inward and it's coming out all around me.   I don't think everything Keith does is wrong, but he thinks I do.  I don't think everything Lucy does is wrong, but she thinks I do.   I think they are fantastic and even though they both think I mean it as a negative that they are so alike--I don't.   I even had to go back and edit the previous post because I was worried that it might hurt Keith's feelings. 

If only there were a mirror to look at that showed you your insides.   Now that would be a million dollar idea!

Symbols

I was driving  to the cemetery this afternoon with the windows down.  It was a breezy day.  My bow blew out--the bow that Keith and the kids put in my new  van on Mother's Day 10 years ago.  I pulled over,  put on my emergency flashers and jumped out.  I had to cross the road and look around until I found it.  When I got it,  I started to cross back;  a semi truck stopped for me and even let me go in front of him.

As soon as I started to drive the tears flowed.  It was like I just recovered my long lost best friend.  That bow was a symbol--a symbol of being a good mom.  I've been pushing back my feelings for a while and refusing to sit at the computer and think about how I'm doing.  When I got to the cemetery and saw how the grass looked,  I just couldn't help but think it was also a symbol.  We tried so hard to get green beautiful grass to grow and cover Ian's grave this past winter and spring.  Leave it to me to plant seed that wasn't resistant to the hot sun.  Now it's dead.  Good Intentions;  Hard Work;  Love;  Still Dead.

I guess bawling over a iridescent bow is a  pretty good sign of how I am.  Not to mention standing over a grave and begging my son to please go with us on our trip this weekend.

Judging Others

William George Jordan wrote:

There is but one quality necessary for the perfect understanding of character, one quality that, if [a] man have it, he may dare to judge--that is, omniscience. Most people study character as a proofreader pores over a great poem: his ears are dulled to the majesty and music of the lines, his eyes are darkened to the magic imagination of the genius of the author; that proofreader is busy watching for an inverted comma, a misspacing, or a wrong font letter. He has an eye trained for the imperfections, the weaknesses. . . .
We do not need to judge nearly so much as we think we do. This is the age of snap judgments. . . . [We need] the courage to say, "I don't know. I am waiting further evidence. I must hear both sides of the question.   It is this suspended judgment that is the supreme form of charity.

"The Supreme Charity of the World," The Kingship of Self-Control (Old Tappan, New Jersey: Revell, n.d.), pp. 27­30;
 

Pioneers

I haven't been a 'Utah Mormon'  for a long time.  I didn't know there was such a thing until I moved away.  I don't understand the distinction.  Even so,  just because I live in California now,  it doesn't mean I don't still honor the pioneers who settled the Salt Lake Valley and respect them for the sacrifices they made.  I'm able to see and appreciate how their dedication benefits us all,  even today.

I'd like to Give Up

Ian never gave up--at anything.

No Title for This

How many days, weeks and months can I feel the same way?
How many times can I complain about church or what people stupidly say?  They aren't getting better.  Church is still about miracles and how great your life is if you do what's right.  People are still frightfully ignorant and insensitive and if they are lucky, they will never be able to understand.

I feel like I'm stuck and there's nothing ahead on the horizon.  Others peoples'  lives are going on.  I see them like I'm looking out a window on a train and the scenery is moving--but I'm still,  in the vacuum of it all.  There's no epiphany.  There's no lesson.  There's void.  There's exhaustion.  There are permanent valleys forming from the rivers that run from my eyes.  There's the PowerPoint  flowchart from rage to guilt to denial and back again.

In the past few days somebody looking in from the outside would've seen me go swimming with my family;  go out on a date with my husband;   go to a family holiday party;   and  light fireworks on the 4th of July.  Today,  I went on a bike ride, out for sushi and bowling with Mikey.  It all sounds so normal and pleasant, doesn't it?  I think I cried either before, during, or after each activity.  I could see Ian in the  pool.  I even said to Lucy,  "I wish Ian were here fighting with you."   I could see him jumping in excitement at the fireworks.  I could see him bowling--not as an almost 17 year old, but at about the same age as Mikey when he thought it was the funnest thing ever.   I thought how much he would've enjoy the sushi and how it's probably because of him that Lucy and Mikey love the raw fish the way they do.  I could see him complaining and refusing to go to the old folks party, especially at Charley's house.  I couldn't really help but think about him during the date--it was dinner after a funeral.

So if all these great activities leave me just as numb as sitting in front of the TV,  why even bother?   I guess the answer to that is:  Mikey and Lucy.

I'm already worried about next month.  When it's been a whole year,  it should either hurt less or I should be a master at faking it, right?  My life should be moving by then, shouldn't it?  Don't I have to stop feeling sorry for myself by then?  I know that eventually  my perpetual mood swings will just drive people away.  People can only tolerate a downer for so long, then they just move on.  Oh, the things I worry about.

In this awful post, there's one good sentence.  Keith and I are still one--even in our suffering.

The Rope

I had the great privilege of attending another funeral last night--even had to lead the opening song  "Love at Home."  It was a nice funeral.  Keith conducted and spoke--spoke well,  but the stake president gave an outstanding closing message.  It was about a rope.

He said the atonement is like a rope.  It's strong and sturdy.   You could tie a box shut with it and know that it would get to it's destination.  Then he said,  if you really get it,  the atonement is so much more.  If you are stuck or stranded or hurt,  you could tie it to a tree and trust your life hanging on it to get off a cliff.

I'm so not saying it right.  I should've written this last night when it was fresh.  It was the best message ever.  Keith and I both really felt it.  It's one thing to know the atonement's there if you need it.  It's a whole other thing to depend on it for your very life.  Or to realize that you do.  That's where we are right now.  It's everything.