Giving Thanks… and Giving Back

Posted on | July 22, 2010 | 9 Comments

It just occurred to me, as I get ready to crawl into bed with my son, that he will be 11 months old tomorrow. At 5:23 in the early evening. Eleven months. That is one month shy of a full year, for you mathematically challenged folks… like lawyers.

For a while now, I’ve been planning to do a big giveaway for J’s first birthday. I just wanted to celebrate the fact that we survived a full year together… that’s pretty huge! And as I started to buy things and get contributions, I also started to feel a little silly. I mean, no one really cares about winning things from me, right? I get that a lot of people think giveaways are just a waste of space and you really want to READ things. And I also felt sort of petty. I mean, celebrating my kid’s first birthday on my blog? You people don’t know my kid. You don’t know me! You don’t actually care that I didn’t go completely nutso during the first year of his life and change my name to Tawanda and get a tattoo of the beer menu at Taco Mac down my left leg.

So I thought about saying nevermind. I thought about saying forget it to the vendors and keeping the purchased items for myself.

And then I read something amazing from a friend of mine and I want to share it with you guys. J and I have almost survived a year and yes, that feels like an achievement. And yes, I’m a little weepy-eyed thinking about how he’s growing up so fast. And sure, there are days when I’d like to freeze time and keep him just this age for a little longer. And days when I want to fast forward through a week or two (or a year) to get out of a certain phase.

But you know what? He’s healthy. We had a scare, but it was minor in the grand scheme of things. My child is healthy. He’s growing up strong and happy and HEALTHY. Do you know how many moms wish they could say the same thing?

I know one in particular.

Let me tell you a little bit about THIS mom. A few years ago, Valerie Grady was the mother of a happy and healthy two year old, Andrew, with another little boy, Trent, on the way.  During the months leading up to Trent’s birth, their lives began to change. I’ll let the Grady’s words (from their website) tell the story:

“Drew was starting to drop his toys and yell at them as if he didn’t understand how it happened. Then he had his first seizure a few weeks after his 3rd birthday.  In July of 2007, he had another major seizure at a baseball game.  After having an EEG, it was determined he had epilepsy. Although we weren’t thrilled with this diagnosis we weren’t overly concerned either. After all, Drew’s dad had a form of epilepsy growing up that he outgrew.

During the fall and winter of 2007, Drew’s seizure activity increased in both severity and type and we struggled to find the right medications and a proper diagnosis. We started the Ketogenic Diet in April of 2008.  As soon as we started the diet we saw improvement in seizure activity but there was no improvement in his EEG.  In August of 2008, Drew had a Vagus Nerve Stimulation (VNS) implanted.  We also saw improvement with this treatment.  By December, 2008, we noticed that he was starting to lose some of his ability to pronounce words. He also developed problems with his balance and co-ordination and our once active child was barely able to stand without falling over. While many of these symptoms can be associated with the anticonvulsants that he was taking, I knew deep down that something was very wrong. We began to push for more testing.

In February, 2009, we took Drew to the Cleveland Clinic for a second opinion. Assessments were done, blood was drawn and previous tests were reviewed. We were then informed that the MRIs were showing significant brain loss and that it was possible that Drew suffered from some sort of progressive myoclonic epilepsy. It was a very long few weeks while we waited for those lab tests! When we got the call from the Cleveland Clinic we knew it was bad. Despite that premonition, nothing can prepare you to hear that your child will not get to grow up. In February, 2009, on a Friday night, we were told that Drew has late infantile neuronal ceroid lipofuscinosis (LINCL), or, more simply, Batten Disease. We were devastated. 

A few weeks later we decided to test Trent, Andrew’s younger brother, for the disease.  One can never fully prepare himself for the news that not one, but both of your children have this terrible disease.  Trent just turned 2 on July 10, 2009, and is still not showing any symptoms, but they are sure to start.  Unlike his brother at 2, Trent’s speech is a bit more delayed.  Trent loves to play street hockey with his neighborhood pals and help his brother as much as possible.  It is heart breaking to watch Trent push his brother’s walker around knowing that one day it will be his.  When I thought of hand-me-downs I was thinking shoes and clothes, not wheelchairs and walkers. 

We decided not give up the fight for our two precious angels but we will need help along the way.  There are several research studies that we are working to get the boys involved in, but these studies are mostly privately paid.  We also learned that we must fight for the boys to receive services and equipment that they desperately need and sometimes the battles are not won.  Only certain equipment is covered by insurance.

Our goal is to raise awareness about LINCL and Batten’s Disease as well as help fund the treatment and services that our children so desperately need.”

Two boys. Two little boys who were as happy and healthy as mine is now. Two little boys whose parents are dealing with the reality of disease on far too large a scale on an every day basis. Their story absolutely broke my heart. 

So instead of just having a giveaway to celebrate surviving a full year, I want to host a Giving Thanks and Giving Back… I’m giving thanks for a healthy son and giving back the gift of hope to another mom. I can’t begin to imagine the heartache that Drew and Trent’s parents deal with on a daily basis but I can imagine that every little bit of help they get takes a bit of the load off. Batten Disease is scary. It’s scary and it’s real and it affects children like Drew and Trent and thousands of others every day. By helping the Grady family you can help raise awareness for Batten Disease and help two parents fight the hardest fight any parent will ever fight… the fight to find a cure for the currently incurable. 

During the next month, I’ll be including a PayPal button in every Spilled Milk post. By clicking on that button, you can donate to the Grady family. You certainly don’t have to donate to participate in Giving Thanks and Giving Back, but you certainly SHOULD. For every five dollars you contribute, you’ll receive an entry to win some pretty amazing things. If you want to enter without contributing, that’s okay… just email me and let me know and I’ll put your name in the hat. And if you want to contribute an item or something to give away you can contact me for that, too.

I’m still compiling a full list of all the wonderful people who have consented to be a part of this giveaway but here’s an incomplete list of things I’ve purchased and things that have been donated to help the Grady family:

A necklace from Tina Tarnoff 

A Gebbie Cloth from Yes, Sarah

A wristlet purse from Cathystotes

An eco-friendly snack bag from Cathystotes

A $25 gift card to BabyGap

A dozen cookies from Two Smart Cookies

A sun catcher and wine cork from Put a Cork in It

Store Credit to InStitchesMonogram

A gift pack featuring a $15 Starbucks card, a Lil Sprout Knits baby rattle, and more courtesy of, well, ME

A custom nursery wall print from Sweat Pea Prints

A wooden diaperbag tag from Coconut Robot

But really, the main thing is to help out a family that needs a few reasons to give thanks. I haven’t asked the Grady family if this is okay because well, I don’t really know them… I just know their story through, as I said, a friend. So if I have to retract all this, I will, but for now? Check out their story at their website and then give a little thanks for your own little miracles and give a little something back to help someone else’s. 

So reach deep in your pockets and tell a friend. And maybe we can bring some sunshine to Drew, Trent, and their parents.   (If you’re interested in donating items, contact me… the more the merrier, I always say!)


9 Responses to “Giving Thanks… and Giving Back”

  1. Raising Madison
    July 22nd, 2010 @ 1:25 pm

    you know I'm on this to help you out in any way you need.

    Pay day is tomorrow and I promise to donate.

  2. MrsPatterson
    July 22nd, 2010 @ 2:22 pm

    I got chills reading this. My heart breaks for that family. I'll certainly donate to help them out, and my prayers will be with them.

  3. Metta1313
    July 22nd, 2010 @ 2:55 pm

    I heart you momma! I have to wait for my payday too, which is the last day of the month. But be sure to know I will be donating. What a great way to celebrate J being a year old.

  4. Sherri
    July 22nd, 2010 @ 4:49 pm

    Wow, sure puts things in perspective, doesn't it? What a challenge ahead for this young family.

  5. Eliza
    July 22nd, 2010 @ 8:00 pm

    This is absolutely brilliant! Thanks for giving back and celebrating J's birthday in such an amazing way!

  6. Emily
    July 22nd, 2010 @ 11:51 pm

    Done & Done. I cannot even imagine what this family is going through. Things like this remind me to be grateful every day.

  7. Mommarazzi
    July 23rd, 2010 @ 4:46 am

    Such an awesome idea for a very deserving family.

  8. Anonymous
    August 26th, 2010 @ 8:37 pm

    It's stories like these that give me ulcers over being a parent. Such tragedies can happen at any time! It's like you're always walking a tightrope without knowing it until you fall off! This family is in my prayers and I can only hope that my boys' guardian angels will keep them safe from disease and harm.

  9. JTownsend
    August 31st, 2010 @ 11:00 pm

    Just made a donation. Just wish I could give more, but I will be praying for them everyday. I believe in miracles . What a great person you are!

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    Spilled Milk (and Other Atrocities) by Law Momma is licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.
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