Thursday, December 31, 2009

I can't believe 2009 is almost over. I am glad to see the end of it as it has been the worst year of my life. I don't think I even remember a third of it, but I'm sure that's a good thing, a self-protection of sorts. I was thinking back tonight and at first it didn't seem like we had accomplished much at all this year. I still haven't went back to work, we haven't figured out if/how we will get to be parents again, and I don't make it out of bed, to the shower, and dressed every day.

So what did we did this year? With the help of friends and family, we put together the fundraiser cookbook that has sold over 400 copies. We had a first family fun 5K for Eli's birthday. We had 4 bake sales that made nearly a combined $1000. We met with our Congressman and helped add another supporter for the SMA bill in the House. We pulled together with our friends and family to buy a truckload of crab toys to take to the Children's Hospital and have also made several trips to Ronald McDonald House to drop off pop tabs and supplies. Friends in Maryland even got coworkers involved and raised over $1200 for Unite! Not bad for a year spent living in a grief-filled fog I suppose.

I learned a lot this past year too. I learned how amazing my family is... My mom and dad have been by my side this whole year. Most of that time has been in spirit rather than in person, but that counts just as much. Mom was here through our last 3 weeks with Eli and held him and loved him no matter how tired she got. She battled through her daily pain to get together a bake sale and a yard sale to help us with our Unite effort. She personally sold over 200 cookbooks. My parents traveled to Lexington with good friends and walked in the SMA walk to honor Eli. The time of Eli's funeral is all a bit of a blur, but I remember seeing Stiltners all around me during that time. They drove the 1000+ miles to be here. My family, well...they are like no other family. I love you all.

Friends.... I am so thankful for our friends. We have a variety of friends, each unique in their support and love. They have all offered different types of support and have all been the crutch that kept us from falling over this year. From helping organize the walk, baking for the sales, and getting petition signatures, they have been awesome. Several of them have given me some amazing gifts over the past weeks, but all of them have given their love and time to lend a shoulder, shed some tears, or just drag my sorry butt out of the house. Some stood alongside side us for the walk, others came to release birthday balloons, and some were almost constant fixtures at our house on the weekend... Thank you all for all the support over this past year.

Now what will 2010 hold? I don't want to make resolutions. I'm a bit against making plans now. I had a lot of plans before and now I'm stuck with toddler clothes and crib converters that I'm not sure I'll even get to use. I can't plan now. Plans don't go how we want them so why waste time? I do want to make some goals though. I want to get back to Weight Watchers and lose this weight again. I felt like a totally different person when I was 70lbs lighter and I kind of miss that Rita. My doctor said a loss of 10-20% would be a good start if we were thinking of trying again or making an appointment at one of the IVF clinics, so there is an added bonus to weight loss. I want to figure out a new career path. I am still debating on this teaching thing, but I hope I can get on some substitute lists and maybe get in the classroom and see how it feels. That goal is a little difficult, not one I'm sure of meeting, but I want to put it out there as something I want to work on. Finally, I want to make my house look like and feel like a home. I want to organize, paint, decorate...whatever it takes to make it feel like we didn't just move in. On that note, I also want to be a better housekeeper and stay on top of my cleaning chart.

Wishes for the new year? I wish/hope/want Jason to find a good friend who lives nearby. I know he must feel lonely a lot and I'm not always the best company. His friend Charles has been great about being around when it counts, but I'd like for him to have someone closer to hang out with. He doesn't have a good support system in his life and I don't always feel like I'm strong enough to hold him up. Men seem to really struggle making friends so I have no idea how to make this happen, but I hope something falls into place. He is such an amazing guy and anyone would be truly lucky to call him a friend.

I wish/hope/dream for a cure for SMA. So many new articles come out every day about promising research studies. I hope we can send enough funding towards that effort to make it happen. I will keep playing the lottery on the 100+ million dollar nights in hopes of winning. Eli's name would look pretty awesome on a research building. :) I live in constant frustration that the lack of cure is due to a lack of funding, but that keeps me working on raising more money.

I hope to make progress on being a parent again. I don't know if that will mean adoption, IVF, or just playing the odds and hoping to win, but I hope we can decide on a plan and start working on it. Sometimes I don't think I want to because no other child will be my sweet Eli, but I know I can't have him back. I also know we have lots of plans and would make damn good parents.

So....goodbye 2009. Please take all the sadness, pain, and anger with you as you exit.

(I'm sure there are tons of words left out, spelling and grammar errors, and who knows what else in that novella above, but forgive is late and I'm writing through tears.)

Monday, December 28, 2009

Sorry for the lack of posts...

It is just a blah time here at home right now and I figure most people don't want to hear about how smelly we are from not showering or how we are sleeping most of our days away. We made it through Christmas with lots of tears and they continue to fall as the anniversary of the worst time of lives come to pass. Tomorrow will be a year since we found out about SMA. I don't have a lot of memories left from the bad times, but I remember the doctor telling us that was their probable diagnosis and then hesitating when I asked what the prognosis was... It felt like a hit and run because she told us he would die before he was 2 and then left us to cry. She did come back later, but she was not comforting to me in any way. The whole initial experience in the hospital was horrible and I'm still angry that we had such uncaring doctors who never had Eli's best interests at heart. I'm so thankful for Dr. Erikson, Dr. Northrup, and Dr. Mancias who all worked with us during our second hospital stay.

My friends at Merry-Go-Round came through again and they were able to order 100 more crab toys for us to take down to the children's hospital on Eli's angel day. It won't stop the pain, but it will at least be something we can do in remembrance of that wonderful son we got to love and hold for such a short time.

Friday, December 25, 2009

Last Christmas Day

Eli with Aunt Crista

My cutie pie in his Christmas jammies. They are now tear-stained and living in my nightstand.
The greatest gift I've ever received. I just wish I had been able to keep it.

Thursday, December 24, 2009

Last Christmas Eve....

Blah....I don't even know what to write. Today sucks.

Wednesday, December 23, 2009

One year ago...

I was looking through pictures and found one we took exactly one year ago. This is, well, WAS my favorite outfit of his. It tends to be the one I grab when I go in his room to cry. It hurts to hold it, but at least we have some pictures of him wearing it. The holidays are so so tough.

Monday, December 21, 2009

Birthday 2009

Sara made me this funny cake for my birthday! It is one from Cake Wrecks, one of my absolute favorite websites. She asked what I wanted for my birthday and I told her "I want sprinkles". LOL It is great to have a friend who shares your love of bad cakes, but who also makes delicious replicas of them! :)
Fran got me this great ornament for the tree. I love sock money! We had looked at them one day while we were out shopping and I wanted it, but didn't get it that day. I was delighted to see she went back and got it for me. She also gave me a neat reusable shopping bag and a Roger Clemens autographed Astros hat!
This was my gift from Heather. I need to get some better pictures of it, but I wanted to share right now. I love it to say the least. It is so beautiful, but her caring enough to take time to make it for me and pick out things that are so perfect...well, amazing. I'm starting to cry over again...

It is so great to have friends who love you enough to do all of these wonderful, special things. Each of them are so different, but all so meaningful. It is nice to feel loved.

Saturday, December 19, 2009

Birthday Surprise

My friend Suzanne surprised me with this amazing painting today. She has done so much for me in the 16 months I have known her. She was a constant support through my struggle with breastfeeding, with us the night Eli left, and continues to help us in our fundraising efforts. I had no idea she was bringing something this amazing when she called me today. I can't wait to frame it and hang it up. What a wonderful present this year.

Friday, December 18, 2009

Eli and Mommy Playing by the Tree

I think I posted this before, but it is my favorite and I wanted to share it again. It was on my mind so much this morning.
Hard to believe that one year ago we had no idea we were going to lose our precious Eli. I'm a bit weepy this morning just looking at the tree and remembering. One year go Eli and I would have been up looking at the lights on the tree. We always stayed up after Jason left for work and watch the lights. I think the tree stayed on from morning until bedtime because he seemed to love them so much. I miss him so much. He wasn't part of our lives for very long, but he changed us so much in that short amount of time. He was such a gift, but one I was not ready to give up so soon. I still wonder what he'd be like today. I still peek at the clothes in the little boys section wondering what he'd look like in them. I still think about all the books we never got to read and the toys we never played with. It is hard to give up all that...even now.

I'm going to try to post my favorite video a bit later. It is sad for me to watch, but also one of my best memories.

Happy Birthday to my wonderful husband.

Monday, December 14, 2009

Today we decided to put up the tree. Our tradition is to always put it up on Thanksgiving night, but we didn't do it this year because we weren't sure if we were going to put it up at all. The house has seemed very sad without it so we broke down and pulled it out of the attic tonight. I remember how much Eli loved the lights last year and I think if nothing else, we needed to put it up to remember those good times. It is getting close to a time of bad memories, so we should remember how great this time of year was a year ago...we still had no idea what SMA was at this point.

Wednesday, December 9, 2009

Just wanted to stop in and say Hi. I haven't had much to post lately... We are just trying to get through the holidays. I have been more focused on my weight loss lately, so I've been over on that blog more than here writing about my personal life. It's not exciting, but it is my focus. We need to lose weight and get in a better, healthier state both mentally and physically before we decide what route to go to be parents again.

Hope every is staying safe and warm as the cold, snowy days make their way across the country.

Monday, December 7, 2009


If you have a Facebook account, please visit the Chase Community Giving page and vote for the Gwendolyn Strong Foundation. Chase will be giving $25,000 to the top 100 charities and Bill & Victoria will be donating anything they win through the program to the Unite for the Cure effort. Voting ends the 11th, so go vote and ask your friends to do the same!

Other SMA charities you can vote for include Claire Altman Heine Foundation, Andrew's Buddies (FightSMA), Families of SMA, and Marshall's Miles. Ronald McDonald House of Houston is also an important one for us as we continue in our efforts to support them in thanks for the comfort they provided during our hospital stays with Eli.

Friday, December 4, 2009

Texas Snow!

This was at 1:30 today. I'll add more later as it continues to fall! So exciting!

Wednesday, December 2, 2009

Christmas 2009

Today we took Eli's tree out to the cemetery along with a basket of pansies. I had bought Chrsitmas flowers for the rest of the family too. It makes me sad to see so many bare graves out there. If my lottery gamble every pays off I will cover that place in flowers. I try to take a few extra bunches for some of them each time I go, but there are so many that need some TLC.
Today you would have been 16 months old... Miss you so much little one.