Wednesday, January 27, 2010

This is one of those weeks again.  I think after the excitement of last week, it's probably to be expected.   All ups seem to be followed by downs.  

I feel like I'm really struggling right now.   I'm not feeling much purpose in being here, in trying to get through the hurt.   I guess I've started to give up hope that things will get better or that we'll ever have the level of happiness that Eli brought.   I keep trying to put a new life, possibly a life without a child, in my thoughts, but it is just not working.    I want Eli, I want to be a mom, I want all the things that I can't have...maybe ever.

I think I need to find a new support system.   Facebook was great for me this past year.  I connected with so many other moms who had been through the same type of loss and understood the hurt and pain.   I had old friends and new ones providing support and help.  It was awesome.   Now it feels like a den of pregnant women.   I'm happy for everyone, but it is hard not to be jealous.   I hate those feelings...   On the other hand, I hate to delete my account and lose contact with so many people..  It's a tough call and one I'll have to think about this week and figure out what works best for me right now.

Tomorrow I am having lunch with Jenni, the wonderful chaplain from the children's hospital who was by our side until the very end of things.   I'll never forget her kindness and the amazing job she did to help us say goodbye to our beautiful boy.

Saturday, January 23, 2010

Woo Hoo!

I hope Bill & Victoria are okay with me stealing their pictures to post over here. I thought they were the best way to spread the news. After a long week of hard work by so many, Gwendolyn Strong Foundation placed in 6th last night and will receive $100,000! It is amazing that this contest started with 500,000 charities and we ended up 6th in the final round. I won't say it is a miracle because that would discount all the hard work that went into making this happen. Don't ever doubt the love a parent has for their child...and boy, oh boy is Ms. Gwendolyn loved. The Strongs are bringing SMA awareness to a whole new level and organizing an army of people who are going to put an end to SMA forever!

Friday, January 22, 2010


Today is the final day for voting over on Facebook. I am amazed at how this week has progressed; apparently even Joe Jonas is supporting us on his personal Facebook page! Right now we have just hit 48,000 votes and seem to be in a good spot to win $100,000 today. It brings tears to my eyes to think about how many people we have reached this week. Just the awareness is worth all the effort we've put into posting, emailing, tweeting, and then crying as the votes come in.

I had the highlight of my week happen last night. I was on Facebook really late and saw Cake Wrecks post the link to the beautiful video that was made for the campaign and ask their followers to vote for us. I was FLOORED because if you know me, you know I LOVE that blog. They have about 80,000 followers over on Facebook so that was awesome. Then, I see that they tweeted the link to their 1.2 million followers! Umm...super Wow, right? I was trying to figure out how they had heard of us. I had sent off an email earlier in the week asking for their support, but I honestly didn't even think it would be read. To my surprise, Jen from over there not only read it and supported us, but she even wrote me back to let me know she had done that for us. I was totally freaked out over that one. So in summary, if you don't go over to see the wrecks, go! I think you will get some serious laughs. (The link has been on my sidebar for ages, so you can just use it to go visit them.)

Hopefully I will be reporting back with some good news tonight. We can still use votes to make sure we stay up in one of the money positions, so if you haven't voted, please do before midnight tonight (that's eastern time!).

Tuesday, January 19, 2010

Nothing new to post really. We took the crabs down to the children's hospital today, delivered some things to Ronald McDonald House, and went by the zoo. The zoo was sad for me today. There were so many children made me miss Eli so much. We never got to take him to the zoo. :( Other than that, I've been working my butt off trying to get votes and support for the Chase Community Giving campaign over on Facebook. We are so close to earning $100,000 for the Gwendolyn Strong Foundation. We are currently 3000 votes behind, but if everyone will go vote and ask friends and family to vote, surely we can catch up. Please help us out.

Here is Victoria's latest post:

Incredible Support

There are so many exciting things happening surrounding this amazing campaign, growing our vote numbers and raising much needed awareness of SMA. We are truly inspired by every one of you for rolling up your sleeves and fighting for this with us, calling in favors, thinking outside of the box, and NOT GIVING UP. Every single vote is important and just when we think we've tapped out our friend base, another awesome boost happens. In the last few days, here are some of the cool endorsements GSF + SMA have received (forgive us if we forgot anyone, it is crazy around here):
  • Reigning four time Nascar Sprint Cup champion Jimmie Johnson -- posted to his FB fan page
  • Comedian Dennis Miller -- posted to his FB fan page
  • Actress Candace Cameron Bure -- posted to her FB page + continues tweeting the link
  • Band Widespread Panic -- posted to their FB fan page + tweeted the link
  • [H]ouse Producing Director, Greg Yaitanes -- keeps tweeting link, even from the Golden Globes on Sunday night :)
  • Singer Elizabeth Mitchell + Little Bird Records -- gave us permission to use her beautiful song in our video, posted the video to her FB fan page, + sent out a newsletter to fans with link
  • Founder, Craig Newmark -- tweeted the link
  • Founder, Adam Strong (no relation) -- did blog post + tweeted
  • Founder, Ben Kuo -- did blog post
  • NY Times Bestselling Author, Susan Wiggs -- did blog post
  • Actress Ali Sweeney -- tweeted the link
  • Author James Frey -- posted to his FB page
  • Twilight fansite, -- did blog post, keeps tweeting the link, + put button on their site
  • Smart Mouths -- did blog post, FB fan page, tweet, + podcast
  • PEP -- sent out letter to all parents ever involved in this parent support group, posted to FB fan page + keep tweeting link
  • Alpha Chi Omega -- posted to website, FB fan page + keep tweeting link
  • -- tweeted link
  • Clear Channel Radio -- interviewed SMA mom Brandi Meyer + posted to website
  • Santa Cruz Sentinel -- published newspaper story
  • Santa Barbara KEYT ran story on 11pm news + KLITE radio will do something tomorrow
  • Dozens + dozens of moms have blogged, posted video + link, Facebooked + tweeted
Incredible right? And the biggest thing of all has been the thousands and thousands of you who have gone the extra mile for us...for SMA! We can not thank you enough. Let's keep at it and keep this list growing!

Friday, January 15, 2010

Okay friends! It is time for some action! If you have a Facebook account, you have an amazing chance to make a HUGE difference in the SMA community. The Gwendolyn Strong Foundation can win $1 million dollars in the Chase Community Giving Program; can you even begin to imagine what that would do for the race for a cure?? We need everyone to vote and help get the word out! I'm going to steal Victoria's post from Gwendolyn's blog and repost it below. Please help. This would be a dream come true for so many families.

This is IT! Final round voting for the Chase Community Giving campaign on Facebook IS LIVE and runs through January 22. Below are simple instructions on how you can vote for the Gwendolyn Strong Foundation to help make a $1M MIRACLE an SMA reality.

Please dig deep, be shameless, and go the extra mile to bring this home for all of those impacted by this cruel disease. We can't do this alone, but together we can make this happen!


VOTING - simple instructions on how to VOTE!
  • Go to -- This will take you to the Gwendolyn Strong Foundation Chase campaign site on Facebook. This is where you vote. Click on the "Vote For Charity" button to vote.
  • You must have a Facebook account to vote. If you don't have a Facebook account you can easily sign up for one by going to and following the simple Facebook signup instructions.
  • You may only vote for Gwendolyn Strong Foundation once, but GO NUTS! telling anyone and everyone you know to go to to vote for the Gwendolyn Strong Foundation.
EMAIL - copy and paste the text below into an email and send it to everyone you know(You can write your own more personal letter -- we just wanted to help make it easy)

Dear Friends:

This is a personal plea! A cause that is very important to me has a real opportunity to win $1M to help CURE Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children. I'm asking you to do two FREE things that will take you less than a minute and will help turn this $1M MIRACLE into a reality:

(1) VOTE ---> Go to and take 20 seconds to vote for the Gwendolyn Strong Foundation in the Chase Community Giving campaign on Facebook.

(2) FORWARD THIS EMAIL ---> Forward this email to at least 20 personal contacts and ask that they do the same.

Thank you so much for your support. We can't do it alone but together we will help CURE SMA forever!

FACEBOOK STATUS UPDATES - simple instructions on how to spread the word on Facebook
  • Do this every day during the final round of voting from Jan. 15-22.
  • Go to -- this will take you to the Gwendolyn Strong Foundation Chase campaign site on Facebook.
  • In the box titled "Help This Charity By Spreading The Word" on the left hand side of the Gwendolyn Strong Foundation Chase campaign page, CLICK the "Add To Profile" button.
  • A new box will pop open.
  • Add a personal comment if you wish in the white rectangular box.
  • CLICK "Publish".
INVITE YOUR FACEBOOK FRIENDS - simple instructions to make a personal plea to invite your Facebook "friends" to vote for the Gwendolyn Strong Foundation
  • Go to -- this will take you to the Gwendolyn Strong Foundation Chase campaign site on Facebook.
  • In the box titled "Help This Charity By Spreading The Word" on the left hand side of the Gwendolyn Strong Foundation Chase campaign page, CLICK the "Invite A Friend" button.
  • A new box will pop open.
  • Check the boxes next to the "friends" you want to invite.
  • CLICK "Send Charity Voting Invitation".
TWITTER - if you have a Twitter account, simple instructions are below to tweet messages to your Twitter followers (you may be asked to login to Twitter after clicking one of the HERE links below)
  • Click HERE to tweet the following ---> I voted for @GSFoundation to make a $1M MIRACLE a reality and cure a disease.
  • Click HERE to tweet the following ---> My child is dying of SMA and 20 seconds of your time WILL help CURE it.
  • Click HERE to tweet the following ---> YOU can help CURE the leading genetic KILLER of young CHILDREN, SMA. Be part of a MIRACLE.
  • Click HERE to tweet the following ---> What would you do with $1M? I'm helping CURE a disease. Forever. Be part of the MIRACLE.

Thursday, January 14, 2010

One year ago...

We took our trip out to the cemetery today. The weather seems fitting for the day; it has been gray, cloudy, and raining since I woke up. We put new flowers on all 6 of the graves and left a red rose for Eli. Before we left we released 5 balloons in remembrance of the wonderful 5 months we got to enjoy our beautiful son. I figured I would cry more than I have today, but I feel numb more than anything. It is all still surreal at times, like a nightmare that I'm still waiting to wake up from.

Wednesday, January 13, 2010

I looked back to my post from one year ago today and it was too hurtful to repost. They are the last pictures we took of Eli and they hurt like hell for several reasons. It sucks knowing they are the last pictures that we'll ever have of him. Worse, they are awful. He looks so sick and not like my beautiful smiling baby. I hope at some point in my life I can get over the anger and hatred I have for the doctor who I think shortened our time with Eli and made him sicker than he was. I'm not in denial about the fact that he was going to die, but I know things shouldn't have happened the way they did. Starving a baby for almost 2 days, especially a sick one who is struggling to gain weight and eat anyway, should never happen. So tonight I'm going to bed angry and sad, missing my beautiful son.

Saturday, January 9, 2010

Insomnia is once again my best friend... I just seem to have so much on my mind lately when I go lay down and sleep eludes me each and every time I long for it.

Tonight we watched Up. It was my movie choice for the week and I'm not sure how I feel about it even now. It is such a powerful movie, but even more so to those who have suffered great losses or struggle with infertility. My mind has been racing ever since we finished it. I think it has a great lesson in it for me, for my marriage. The couple in the movie was not able to have a baby, but they managed to forge ahead and enjoy life and each other. I feel like Jason and I have put all enjoyment on hold now. We have banked, happiness...on being parents again. I think we've forgot how much we can enjoy just being us.

I've met a lot of couples and heard lots of tales about other marriages... I know how lucky I am to be married to one of the best men I know. He is truly a partner in every sense of the word. He loves me unconditionally. He is my best friend. There is no other person on earth that I enjoy spending time with more than him. He always has his arms open to hug me. He never fails to join in my silly jokes and games. I honestly couldn't invent or make someone more perfect for ME. He GETS me in a way that nobody else does. Can that be enough? There is no guarantee that we will ever be parents again, so I think right now I need to learn to appreciate what I have and not put all my eggs (or happiness in this case) in one basket. I already have something that most people never get to experience...true love. It would be wonderful to have a child to widen our circle, but I shouldn't let that missing piece take away from the beauty of the life I do have.

I'm glad we did watch Up maybe keep me up all night thinking, but hopefully some good will come out of it. I hope tomorrow I can wake up and be thankful for what I do have. It is hard not to be sad over what's missing, but 3 lives didn't end one year ago...only one did. As hard as it is to even think about moving on, life doesn't stop for those of us left behind. We must learn to smile again, to love again, and open our hearts to the possibilities before us.
No matter how many times I go to buy flowers, I'm never prepared for the sadness it brings. You would think after a year, your heart couldn't break any more than it already has...wrong. I can feel another piece of it crack every time I go and walk the aisles of flowers. How do you even pick flowers that are good enough for your child? I usually walk around hating everything, but not because they aren't pretty.... I just don't want to be shopping for flowers. I came home with a few bags full of them because if I don't get them, I have to look at 6 sad graves each time we visit Eli. It is always a wake-up call for me and helps me remember that my Jason has lost so much more than I have.

We go pick up the crabs tomorrow. I guess we will take those to the children's hospital on Thursday. It won't make the day better, but at least it is doing something.