Monday, January 30, 2012

i care about rare.

It was such a good weekend to take a break from writing and to just "be." 
Be in the midst...
of the mess.  the pain.  the joy.
Almost monthly I go internal for a good check up of my soul.
Friday night Rache and I went to a women's retreat at a local church for a little refreshing.
 It was so well needed.  A good cry brings a good breath.  One that is deep and runs through your lungs like the chilled air on a cold run.  You can feel it burning and it makes you want to stop yet it is equally invigorating and energizing.  It's just enough to push you forward to the end of your race and you feel replenished as soon as you are done.  
That's what a good cry did for me this weekend.  It pushed me forward.

I returned home to a sick, teething, crying Mabel.  She spent 2 out of the 3 days this weekend in hysteria; crying and fussing around.  I slept with her jerking, seizing body on top of mine Friday morning and felt the reality and severity of her little life rush through my body like a drug.  It's incredibly scary to let my mind escape me and meet up with harsh truth of Mabel's little life and what it might mean for our future.
She always wants me but this weekend, mostly she was perched on the shoulder of whoever would carry her. 
Very little sleep was had by all.
 I was told by my boy that I was 'his one and only girl.'
 I was also told this morning as he rounded the corner at the bottom of the stairs,
 "Mommy.  You have crazy hair.......
but it looks beautiful."
I hugged him and greeted him with a good morning, buddy.  Just as I do every day.  That is one thing about my life and myself that I will never regret.  No matter how bad the night before may have been, my children are greeted joyfully each morning and that is a really good feeling.  I may fail a million times throughout the day but I am determined to daily remind them how thankful I am to wake up and greet them.  
They are all I've ever wanted.

 Daniel was home for more days than usual over the weekend.  I am so thankful for his help.  Although I typically have to tell him how to help me, he is pretty quick to do so.  

 I was supposed to be a part of a Rare Disease blog hop today as part of the group that I support when we 'Wear that we Care' for World Rare Disease Day.  30 days from today (February 29th) we want more people than ever to be aware of how significant rare disease is in our generation.  

Spreading awareness is incredibly important to me.  In fact, it's become my mission to stop the ignorance and raise the bar on the information that people are receiving or not receiving about rare disease.  
However, I just didn't have it in me to sit down and write a whole post about it today.  I did that last week. 

The statistics are clear.  There isn't enough research.  There isn't enough funding.  There's very little advocating happening.  
There's only people who are suffering and the people who love them doing this dance between joy and grief; good days and bad. 
 Children are dying (almost 30% of children with a rare disease will die by age 5!)
Also, 1 in 10 Americans suffers with some form of a rare disease.  That is over 30 million people which means that is more than the total number of people living with cancer worldwide.
And yet we're still here--talking about 'rare disease' and how we need to raise awareness.  
It infuriates my mommy heart and breaks it all at once.  It feels so very unfair.
 But here's what I do know--I have a great hope that research will progress.  I have a great hope that with the help of people like you, we will raise awareness and funds that will throw our nation into a more educated state.  One where there will be an increased urgency to see the faces of children who cannot help themselves, and therefore step up on their behalf.  Sadly, there is little time for most of these children.  
We are without a diagnosis, but many of our friends are living with the reality that their children will die at a very young age due to a disease that is considered rare yet quite frankly might be easy to research or even cure if the support and funding were available.
Don't they all deserve a fighting chance?
 Please visit and 'like' the Global Genes Project's Facebook Page to get involved.  
Mabel and I are good friends with the people there and we would appreciate your support!

Remember to "Wear that you Care," by wearing jeans to support World Rare Disease Day.  Take photos and tag the Global Genes Project when you upload them

Have a knack for creating?
Donate a bracelet to the 7000 Bracelets for Hope campaign.  You can bring hope to a child or family who is living with a rare disease.  Mabel and I received our bracelets last summer!

For more information, please visit www.GlobalGenes.org and www.RareProject.org to learn more.
 I'm all about justice.  And this feels very unjust.  There is too much 'rare' for my liking.  Please join our fight and help us spread awareness...
For Mabel.
For Ethan.
For Stevie.
For Olivia.
For all the man children who don't have a voice but have a life worth living.
We can make a difference!

3 comments:

JPEMARSHALL said...

We care about rare too. I've seen it written, "It's only rare, until it happens to you!"

I am blessed to call your family our friends. I am blessed that Ethan and Mabel have brought us together on this journey of motherhood.

Lots of hugs and prayers!

Pamela

Shasta @ intheoldroad said...

Great post. I'm a mom to a child with rare disease and joining today's blog hop too. God bless you and your family.

Shasta
http://intheoldroad.blogspot.com/2012/01/my-other-lifea-rare-story.html

Vicki said...

Mabel is such a beautiful little girl with the biggest blue eyes. I love your blog. Keep the faith and take 1 day at a time.

-Vicki (fellow blog hopper)