Sammy In Make A Wish Newsletter

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Sammy Super Swimmer!

Just a quickie to update everyone.

Sam has just graduated Swimming Beginners I.   This is a HUGE achievement when one looks back over the past year and a half.  I am so proud of him.  He moves on to Beginners II in April.

Jack starts therapy on Thursday.  He is also going back to Gilda's Club for the  Support Group on Tuesdays.  I really hope it helps him.....more about that on his blog.

Brian's toe is slowly recovering...he broke it!

I am wondering why my therapist (gosh that sounds weird) has three weeks between appointments????  Perhaps this is not the right person for me.  I did like him but might need more regular visits...or not...we will see.  So my Cancer Parent friends.....my next piece of unsolicited advice is to be prepared to change therapist if the first one isn't meeting your needs.  I will keep you posted on my decision after my next appointment.

Well, that's about it until Thursday when Sammy has his next LP.....how I hate those things!

Therapy

So many have been asking why I haven't been posting.  I am not really sure why, except that I have been having what I am calling 'delayed anxiety' over all that has happened over the past year and a half.  Basically, anxiety about our situation has set in and I finally dragged my butt to see someone to help me cope.

Sammy has been doing very well, steroid pulses aside, and has not been neutropenic or hospitalized for a long time, (watch me jinx it now)!  Yet I have been panicking, often in the middle of regular activities, about Sam, Jack, the house, school, putting on weight, which direction to turn in my life, and of course, the big one...relapse.

Finding myself unwilling, almost unable to make it through the day, to get off the couch or become motivated and excited at work, wishing night would come so the kids would be in bed and I could just be alone in my own thoughts...not healthy!!!!

"Well, you have been through so much, I'm not surprised you are feeling it!" so many have said.  But that is not good enough for me....I can cope with anything....I know I can.  The reason I know this is because I am willing to seek help, find support, get my butt into gear again and start living life.

So help is what I sought, and it was amazing to spill out all my angst at a total stranger....REALLY.  I had never been to any form of counseling before, I didn't ever think I would.  However, I strongly recommend it to anyone dealing with a child with a serious illness.

Strangely, the first session was okay and I left feeling like I was on to  something....then spent an hour parked at Binny Park, crying bawling by eyes out.   I was miserable for the whole week, almost debilitated with the feeling of absolute failure and depression.  I did not move, I did not speak, I just went to work, did my thing, came home and crumbled.  Brian was unbelievable in helping me through this stage by just doing everything!  The next session was a little easier, I was sad for a couple of days, not the whole week.

Now I am feeling a release from so much anger and panic.  Well, actually that is not quite true...the anger and panic is till there, but I can push it out again and cope...most of the time.

Today the sunshine was a happy thing...I played outside with the boys for hours.  We sang to Alice in Chains, The Ramones, and the Black Eyed Peas as we made lunch together, and I enjoyed being with my boys again.

Sam still battles cancer, Jack is about to get therapy to help him with his situation, Brian has a broken toe...but I am able to cope with it all again.  We all need help at times, my time is now...just as life was becoming more normal.  Perhaps that is why I began to crumble, I am not in the 'shocked to my bones' stage anymore.

Why am I sharing all of this?  Because I'm acutely aware of the audience this blog has attracted....many people view the posts from sites such as www.cancerkids.org and I know how hard this whole experience can be.  Seeking help is part of the journey...I realize that now.  Sometimes a total stranger is the person who can make you feel better because they are totally detached from your situation.  They are paid to listen, there is no need to sugar coat or be guarded so you don't overburden wonderful friends.

Today is a good wonderful day!

As It Is

Today I am directing you all to a blog that helps me when I am feeling at my lowest.  The title of this post is the actual title of the blog post from the amazing Galen Pearl.  This post is about her own struggles with her son's autism.

I read it and immediately connected to the feelings and emotions of a mother trying to do the right thing. Not getting it right all the time.  Wrangling with the feelings that come with that.

BUT, Galen does not dwell on the negativity I often feel.  She draws from her own belief that we can be HAPPY, if we work at it.  Happy is not a word usually associated with having a child with a life-threatening illness or chronic condition...but her words make sense universally.

Please take a look at As It Is by Galen Pearl on her blog: Ten Steps to Finding Your Happy Place.  I may not have found a way to stay happy all the time, but there can be a lot of comfort for many people  there.

Questions From a Six Year Old

This afternoon, driving home after Sammy's PT, he asked me a question that astounded me.  He asked,

"Will I ever be able to run fast like I used to?"

I wanted to stop the car and hug my little man, soothe his fears, and promise a total comeback from the debilitating effects of the chemo.  That was not possible.

What I could do, however, was calmly tell Sammy that he should get back to being fast once he finishes chemo.

"But are you sure?" he asked.

"Well, your doctors are some of the best, and they say you should get back to the way you were before..."

"Yes, but will I really?"

My superhero was showing me just how aware he was of the way I answered the questions.  He wanted to hear an outright guarantee, and that was something I could not do.

No one knows if he will totally lose the weak legs and limp.   He may never have full use of his hands...therefore, I cannot confirm that this will definitely happen.

All I could do was reiterate how sure the doctors were that he should get better, and remind Sammy that we expect the best results once he has stopped treatment.

We then went on to discuss the magnitude of the party we will be having once treatment is over.  Expect a BIG bash....and Sammy wants to stay up until midnight.  THAT I can guarantee he'll do!