Without a Net

I know that most everyone feels that their life is a non-stop balancing act… I won’t disagree. Over the last couple of years I have felt more and more like I’m walking a tight-rope made of glass and covered in dish soap and every time I feel as though I’m building up some sort of safety net, someone somewhere yanks it away.

In September of 2007 my oldest son was diagnosed with Leukemia (A.L. L.) at the age of 8. At this point, my youngest son was 3.

From that point on, my youngest took a back-seat to big brother’s hospitalizations, Dr’s appointments, etc. I’ve had heartbreaking conversations with my baby boy on the phone when he’s asked me “Mommy, are you ever coming back for me?”

What person could hear that and not fall to pieces?

So here we are now, we’ve made it to 2009 and while the oldest doesn’t stop chemo until 12/2010 he’s doing well and is not on the “strong” stuff that he was previously.

Things should be getting better… right? Why can't it be THAT simple?

I can’t build up any leave at work because the “big” boy still gets sick more often than typical kids and I’m out for Dr’s appointments, blood work and the like. There’s still the medical bills and the daily medications which are a routine part of my child’s life and a routine gaping hole in my budget.

I’m on my own here, and I feel like I’m going to fall at anytime… fail at any moment

Now my little guy has to have his tonsils and adenoids removed… and guess what loving mommy will most likely have to take (even more) leave without pay? Yeah… I should be able to take that week of recovery to be with my child… not stressing over how to balance him and where he can go so that I can get back to work. That’s not fair to him…it’s just not right.

This additional drain of my leave means that I’ve had to cancel my trip to D.C. for a pediatric cancer advocacy group. Not to mention, my oldest is supposed to have a trip with Make A Wish… and guess who won’t have “leave” balances available for that either? Uh-huh. You got it, leave without pay.

Through all of this (and here comes where I really sound bitter) where have the “helpers” of the world been? The fundraising, house cleaning, meal making, awareness helpers that are supposed to be there for me… for my boys… to help relieve the crushing amounts of stress that I just don’t know what to do with anymore… Do you know where they are?

I don’t either.

Here I am… in debt beyond my eyeballs, with no hope of ever regaining the career that I once had, no hope of anyone ever offering to take up the reigns and save me… just no hope.
I’m truly not one to willingly ask for help… or to really expect it. I wasn’t brought up on “hand-outs” or ever been given lavish gifts or money. I have no expectations for what people should do… and I have no problem working for me and my children’s lives… but would it really be the end of the world if just a little simple free good graces fell on us with no strings attached…one win-fall of WOW?

What does a girl like me hang onto... this tight-rope isn’t holding up so well…

Save the date

Save the date:

June 22 – 23

CureSearch REACH THE DAY 2009 will be the ninth annual gathering of the childhood cancer community in Washington, D.C.

The event provides an opportunity for those who care about children with cancer, to share their story with our nation’s leaders, and to impress upon them that critical funding for childhood cancer research is needed.

We come together in one place on one day to raise our voices for all children with cancer and for those who no longer have a voice..

EVERYONE is welcome and there is NO COST to register for this event. The only expense would be in travel and hotel.

For sign-up, or more information please contact me at:

Justwondering1997@yahoo.com

Or

Sabrinag191@myactv.net

**We are hoping to work together and fundraise in order to assist in covering the travel and hotel expense for our group – this will be a vital portion of our success in making it to this event**

Feeling Hopeful?

So, as you know, I've been attempting to make some useful handmade things...

I love to get feedback, so I sent an email in mass with some work that I've done and had a response from a group which is near and dear to my heart!

A Message of Hope Cancer Fund

This group is grass-roots and deserves to move up into the trees! The people there are amazing and they truly see the importance of what families need when dealing with a cancer diagnosis and treatment regimen.

So...long story short, let me know what you think of my first lettering experience and please do check out A Message of Hope and see if you can help... time... money... anything helps! Take it from someone who knows!

Thanks!

One of "Those" days...

It's one of those days... we hear that expression all the time and we all have our own definitions.

The bracelet you see here is for Leukemia awareness.

Now just a couple of years ago, I wouldn't have even known how to spell Leukemia with any certainty. Now, I can spout off terms, diagnosis, side-effects, medications, and so on with ease.

My son had always been the picture of health until this diagnosis.

Today is no different than any other day while living with Leukemia, but today seems to be hitting me particularly hard. For a while now his liver function tests have been elevated. It's killing me because I feel as though I am killing my child with the cure! Seriously speaking, most of what he's taking are poisons and he still has so much more to go... how does a mommy handle that?

For instance, these "medications" affect the brain, kidneys, bladder, liver, heart...EVERYTHING. We're talking life-long side effects here people. LIFE LONG.

THIS IS SIMPLY NOT ACCEPTABLE!

How is it, how can it be that this nation- - - supposedly the most powerful nation - - - is also the most selfish!?!?!

We can invest money and spend money to make "her" boobs bigger, lips more plump, stomach flat, or "his" johnson larger, wrinkles reduced...

We can spend money on vehicles too large and further pollute our planet, we can find ways to make unripened fruits and veggies "look" good and taste horrible and lost all nutritional value.

We spend tons on new... NEW...NEW Houses, clothes, shoes, cars, etc...just to replace ones that are already there and work just fine.

Yet, in this land of plenty, of over-indulgence, of excess... we can't cure cancer...not really... at least not without poisoning those already sufferring from it. When can we finally focus on healing cancer patients without taking them to the verge of death and ruining the rest of their lives?

Just a thought... $5.2 billion was spent on cancer research...in the same year... over $13 billion spent on unnecessary cosmetic surgery. Chew on that a moment while imagining it was your child and not mine.