Wednesday, March 24, 2010

This was so hard to write and will be the last I say on this subject for now.

After my last post I received an email from a mom who saw her son in mine.  Parents of children like this tend to gravitate towards and cling... even momentarily to one another because the feeling of relief that comes from knowing you will not be judged is nearly overwhelming.  We speak the same language... one of understanding and not advice.

People like this blog because it is "real".  This might be a bit too "real" but facing cancer is easier than the uncertainty of what to do to help Marc.  Everything might turn out just fine but I've come to some realizations lately that have driven me to seek outside help once again.  Let me be clear and say that Marc is not violent.  He does not hurt other kids, his sister or our pets.  He just has no judgment, virtually no self-control and very little empathy.  He's always been tough, I just thought as he matured, certain things, like being able to trust him for short periods of time, would happen.  That has not happened and I now have a nearly 9 year old boy who most times needs near constant supervision.  That feels overwhelming.  His issues go beyond this but I love him and .... this just isn't the forum to catalog our struggles.

  • With cancer everyone rallies around you and gives your child gifts.
  • With behavior problems people shun you.

  • With cancer people say things like, "I don't know how you do it.  You are so strong.  I don't know how I would face it."
  • With behavior problems people say things like, "Well, I just don't allow that sort of thing in my house (as if "allowing" it is the problem)."  And, "Well have you tried this thing (that of COURSE we have tried because we've tried just about everything) because that's what we did and our child never did it again (which is truly laughable in Marc's case)."

  • With cancer people pray for you.
  • With behavior problems people judge you.

I'm not saying cancer is a walk in the park but the support is unlike anything I would have imagined.  That is HUGE.  Sometimes I feel so alone with parenting my son.  So when I meet someone who struggles like I do, we cling.

Janine, I get you.  I get your fear and your frustration.  Hugs and prayers.

Monday, March 15, 2010


I feel like I have a weight on my chest right now.  No.  I mean, really.  There is a heaviness that has settled into my chest and it HURTS.

I haven't written much about Marc here but I used to have another blog where I wrote quite a bit about him.  This is rather long but was a very typical day in our lives.  I wrote this three years ago... almost to the day.

Oh hard, hard, hard.

This morning Marc woke up with a chip on his shoulder.  He screamed at Rachael and told me about 6 times every thing she had done wrong to him.  Let's see... she dared go to the bathroom when HE needed to go and wouldn't immediately get off the toilet as soon as he announced his need.  Of course he screamed at her which made her want to stay put.  Then she "stole" his plastic coin.  Of course by the time I was hearing about this he was holding his coin and still screaming at her about it.  Then she spit at him.  Spitting is wrong of course but he had been SCREECHING at her for about 20 minutes.  I felt like spitting at him!

I stayed extremely uninvolved and emotionally detached.  This was driving him bonkers as he wanted heads to fall for the horrible things she had done to him in the three minutes they were up before me.  It was hard to offer empathy to him when he was screaming yet HE was holding his "stolen" coin, Rachael clearly got off the toilet and well.... yeah, the spitting was wrong but it was still hard to offer empathy with that.

So I didn't.  I did however offer Rachael a bit by saying things like, "Are you okay?  It hurts my ears to be talked like that.  I'm sorry."  This infuriated him and he continued to rage on and on and then she kicked him.  This was the last straw for him.  He DEMANDED JUSTICE!  He said, "Aren't you going to go talk to her and put her in time out?!"  I said "No".  He asked why not and I told him that it was hard for Rachael to be screamed at so much and left it at that.  When she came out of her room (where she ran to hide as soon as she kicked him I said to her, "I'm sorry that Marc is screaming so much at you, it makes me sad."  She agreed and then I said, "Rachael, even when he screams at you it is still wrong to kick."  She agreed again and when he went to brush his teeth she said, "Mommy, I'm sorry for those things I did to Marc."  I gave her a hug and told her to go tell Marc and she did.  Marc told  her he didn't like her now that she's not a baby anymore and the only way he will be her friend is if she pretends to be a baby forever.  She giggled and said, "No.... let's be friends now!"  Marc continued to hold his grudge and insist he doesn't like her anymore but her conscience was clear so she was joyful.

So my plan to stay as uninvolved as possible is working brilliantly for my daughter.

This thought is scary but sometimes I wonder if Marc is sacrificial.  I don't know how to explain it but I am learning so much through him and yet the lessons only seem to apply well to his sister.  I just pray it is taking him longer and this isn't glimpses of his future:  angry all the time, cataloguing every wrong done to him, believing he is justified in every action, never taking personal responsibility.  I know he is not even six yet though and it can take time.  I truly pray that it is just immaturity.

So, through all this we're getting ready for school.  I said to him, "Marc, if you get ready for school on time I will walk you."  Getting him to stay on task every morning is hard.  I said, "What did I just say?"  He said, "If I get ready on time you'll walk me" all bored like.  So, he starts playing checkers with his sister.  Actually, he starts screeching at his sister that she is "stealing" his checkers.  Meanwhile he has double the amount but that is beside the point.  I tell him, "Five minutes until you need to leave," and he continues playing.  So, I make his lunch and go get his shoes and put them on for him and tell him to brush his teeth (which is what I told him to do right before I said "Get ready and I'll walk you" but he never did).  He comes out and I put his backpack on him and tell him that I love him and wish him a good day.  He starts wailing, "Why aren't you walking me to schoooooool?"  I said, "I told you that I would walk you to school when you got yourself ready on time.  Instead you chose checkers even after I reminded you."  He's sobbing now and I just calmly said, "Tomorrow I hope you are able to get ready before you play so that I can walk with you."  (**Side note:  The school is across the street from our house and he crosses with a crossing guard.  Very close and safe to walk alone.)

So he left utterly miserable this morning and I am fighting the feeling of sobbing myself because once again, he is very unhappy, totally blames me for it and will probably have a difficult day.  If I did nothing wrong, why do I feel so guilty?

I'm not going to write about what happened today... yet, but let's just say it's not getting easier.  It's getting harder.  We're seeking help but all those things I feared are not going away.  I don't think it was immaturity.

Monday, March 8, 2010

Growing up is hard.

When we first moved to this city we met a family who has a little girl one year older than Rachael.  Rachael was two at the time and this little girl was three and there was instant love between the two.  Over the past four years that little girl has spent a lot of time in my home and they bonded in such a beautiful way.  If you have raised a child you understand how almost unheard of it is for two children to spend hours... HOURS, day after day with one another and never fight.  They could just look at each other and start laughing.  They GOT one another and it was a privilege to witness.

This girl's mom and I were friends too, and now we're not.  There are a lot of things I did wrong and can accept blame for but ending the friendship was not my decision and I hated how it went down.  The conflict involved our spouses and Tom, though willing to forgive, did not want to continue the friendship with her husband.  She demanded complete reconciliation as a condition of our friendship continuing and so it ended.  And with it, she also ended the girls' friendship.  And this broke my heart.

I didn't tell Rachael that she would never see her friend again and for the past two months I have heard Rachael talk almost daily about this little girl to me, to her brother, to her other friends, to her dolls.  She brings home artwork from school with this little girl's picture on it and stories of her love for her.  I have just tried to stall her and hope she'd forget but tonight on the way to ballet I was once again encouraging her to make new friends and she once again told me that she misses her friend and wants to see her and I decided it was time to start her down the painful path of letting go.

I was gentle and went slowly but essentially told her that she wasn't going to see her friend anymore.  She just didn't understand.  I tried several angles that I was hoping she would just accept, "She's really busy", "You are in different schools and churches now".  But she just kept saying, "But why?"  I reassured her that I know her friend loves her and misses her too but sometimes people have to move on.  She said, "But we've been friends a REALLY long time."  She kept coming back to why, why, why and none of my lame reasons were working so I finally told her the truth.

"Rachael, it's because her mommy doesn't want to be my friend anymore and so she says her daughter cannot be your friend anymore."  Rachael took a moment to absorb that and the truth of the situation began to set in.  You should have seen that child's face.  It broke my heart more than anything we have gone through in the past 7 months - by a long shot.  She said, "But that's not fair."  I said, "No, it's not fair and I think  it's really mean and I am so very sorry sweetheart."  She didn't wail and carry on but the tears just silently started to fall down and the grieving process began.

She's only six but her heart... for the first time... has been shattered.  And I don't know what to do.

Except cry with her.

Monday, March 1, 2010

I wish I may, I wish I might.

I would trade all the cool things that have happened to us as a result of melanoma in a moment for it to have never happened.  And that includes the Granddaddy of all Cool Things That Happen As A Result of Cancer, but we can't change that it happened so come on in Grandpa, get comfortable and don't mind the squeals and hugs and general party atmosphere.

Make-A-Wish came tonight!

This awesome couple, Robert and Rebecca, who volunteer for Make-A-Wish (would that not be THE coolest volunteer gig ever), came over tonight and asked that incredible question of Rachael, "If you could do anything, have anything, go anywhere, meet anyone, what would you want?"

We'll get to Rachael's answer in a moment and trust me folks... you won't want to miss this.

First though, I heard back from the study nurse today regarding the dosage of the interferon we've been giving her.  Let's just say, "Thank God Grandma and Grandpa invited the kids over to their house sooner rather than later and that Grandma is a nurse and reads labels of medications she is asked to administer."  Yes, Thank you God.  Grandma caught a mistake and again, THANK YOU JESUS, it did not disqualify Rachael for the study.  She has been getting her medication diluted by about 1/2 so I have some concern now about what the symptoms might look like next week when she is getting the correct dosage but at least we caught it early.  They will document the mistake and we will be allowed to continue.  So that was good news and thank you for your prayers!

Back to the fun stuff.  Last week I was contacted by Make-A-Wish to set up a meeting where they could interview Rachael.  Before the meeting I chatted on the phone with Rebecca and asked her if I needed to prepare Rachael in any way for this meeting.  I have not once mentioned Make-A-Wish to her because I didn't know if it would happen or what the process would look like.  So I told Rebecca tonight that I would just let them tell her why they were there and let it all be a surprise.  Sounds fun, right?

For those of you reading who have not raised a child and may one day, let me bestow a little free advice.  Never predict what your kids will do.  You will be wrong and feel dumb.  That's your PSA for the day.

So Robert and Rebecca, or R&R show up and we tell Rachael, "Guess what?  We invited them over for you and they have something cool to tell you."  She's all, "This is because of my cancer, right?"  Can't get anything past that one.

We get comfy and they start with some boring paperwork about who we are and what my middle name is and Marc pretty much answers all of these questions.  Except my middle name.  This somehow surprised both children that I could have such a thing.  Anyway, we get to the part of the interview where they ask Rachael about 20 questions about herself.

What's your favorite color?
Junk Food?

Wanna know her answer to that one?  "Hmmmm.  Wellllll.  Cans.  No!  Iron!  I like iron!"  Get it?  Get it?!  JUNK food?  She'd never heard the term before so she was thinking scrap metal.  Is that not hilarious?

So she starts wearying of the inquisition and is getting all, "I DON'T KNOW WHY ARE YOU ASKING ME ALL THIS STUFF?!" when they lay the Big Daddy of questions on her:

"If you could do anything, have anything, go anywhere, meet anyone, what would you want?"

"Heaven.  I want to go to heaven right NOW!"

My daughter's greatest desire, most heartfelt wish is to be with her family all together with her Jesus.  And seriously folks... let's get on it!  NOW!

It was a beautiful moment of laughter and you should have seen the looks on R&R.  Pretty sure they've never had that particular request before.  We explain to Rachael that though heaven would be the ULTIMATE wish, Make-A-Wish really doesn't have the ability to grant that one so what might her SECOND greatest wish be?

At this point she got super shy and almost weepy and just totally focused on how she just wants her whole family to be together and the only thing she can think of is heaven and oh please stop asking me because I'll just bury my head in my mommy's tummy and mourn the wish that you can't give me.

Then Marc pipes in, "OOOOHHH!   I KNOW!!  I KNOW!!!  I want to LIVE at Disney FOREVER!!"

Okay children.  We are really not getting the concept of Make-A-Wish here.

R&R are just sitting there sorta stunned and say, "We can finish the paperwork and you can talk about it and tell us in a few days.  It's no rush, really."  Rachael is just looking shell-shocked and practically whimpering and Marc won't stop with the whole moving to Disney FOREVER madness and so we're all, "Okay, let's just finish the paperwork."

After a bit though, Rachael starts to come to life again and when I whisper to her, "You need time to think about it," she whispers back, "No.  I want to go to Disney."  I say to her, "This isn't pretend baby.  These people really make wishes come true for kids who have cancer."  She seemed intrigued.  Honestly, I think it was all just a bit surreal and unbelievable and it wasn't computing.

They told us a little of what we can expect and one of the things we had no idea about is that a limo picks you up at your house to take you to the airport.  Let me just invite anyone in the area right now, if you want to come see us off for that party you are invited!  A limo!  Marc says, "Finally!  I have been waiting a LONG time to ride in a limo!"  I'm so glad for that kid that he finally is getting his due in life.  After R&R left we heard the kids talking in the bathroom and Marc's going on about the limo.  "Yeah, there's probably going to be a disco ball inside of it like the cash cab!"

After we had gotten all the business out of the way I asked Rachael to get her Beads Of Courage to show R&R and I told them all, including Rachael, a story....

When Beads of Courage featured Rachael on their blog we were contacted by Colin Smith, who is the Program Director.  He told me that he had been contacted by one of their artists who wanted to make Rachael a special bead and asked me if there was anything she might like.  I wrote back and told him that we were hoping she would get to make a wish and knowing her, she would want to go to Disney.  Maybe the artist could make something to commemorate that.

About six weeks ago I got a package in the mail from Colin and inside was a bead so beautiful I knew it would become one of Rachael's most treasured possessions.  We will not put this bead on her chain with her other beads but we will make it into its own special necklace for her.  She can wear that necklace when we go to Disney but tonight we wanted to share that moment when we gave it to her with R&R.

Yes, I would give it all back to have never learned how serious melanoma can be, but when I want to scream "CANCER SUCKS" we will have no choice but to see the blessings in it.  Thank you to people like Rebecca and Robert and Colin and Sharon (the BoC Artist) for blessing us.  You remind us that God is good.  All the time.

When they were walking back to their car tonight Rachael turns to us and says, "They are my Fairy Godparents!"