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 me...it is late and I'm writing through tears.)

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.

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.

Last Christmas Eve....

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

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.

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.

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.

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.

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.

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.

Help!!

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.

Texas Snow!

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

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.

Happy Thanksgiving

A few new cards...

Just a few more recent cards...I've been back in my craft room making a few this past week while Jason was working. It keeps my mind busy so I don't sit around and think too much. We are still selling them to raise money for FSMA. I had been thinking about putting them on Etsy, but I honestly think the listing cost plus the selling fee would eat away at most of the money I'd make on them. They are doing okay at the consignment store where I have them right now and I'm thankful to be able to put them there. Suzanne has been great about helping us with any of our SMA fundraising events and I can't thank her enough for that.

One year ago...

Things are just going along around here. It is a tough time of year for anyone who has lost a family member, but especially so for those who are missing children. It is hard to walk in a store and see all the Christmas decorations....to think of all that we are missing out on this year. I know the weeks to come are going to some of the most difficult of my life. I am thankful I have a wonderful husband by my side who understands the pain of missing our beautiful boy.

The Unite for the Cure fundraiser wraps up this week, so if you haven't donated and would still like to help, please go to the website and do so. It means the world to us and so many other families. It doesn't have to be a lot of money...any amount will do. Over $70,000 has been raised so far and I hope to see the numbers climb as the month comes to an end. We still have money from my card sales, the Waffle House dinner, and some bake sale money to send in.

If you are a craft person and love to cross-stitch, you might want to get involved with a group called Cole's Quilts. It is a volunteer effort to make quilts for children with SMA or a memory quilt for the angels. Each square has been cross-stitched by a volunteer. They are currently working on one for Eli. MJ and her caregiver Brenda made a square for Eli and I noticed that a volunteer named Rita had made one that is now on his completed square list. It is a great cause and the lady who coordinates it, Linda, has been such a sweetheart in all of her emails. She was originally going to make a quilt out of Eli's clothes but I couldn't part with them right now.

I have to share this morning! Jason and I met with our Congressman this morning about the SMA bill currently in the House. We received an email about 30 minutes after we left that Congressman Poe had signed on to support the bill. How exciting is that??? He was such a nice man and I am thrilled he has agreed to support our cause.

A HUGE thanks to Congressman Poe!

New Fundraiser!

We have another fundraiser starting up! This one is great because everyone across the country can be a part of it! Vicki is a great lady that has donated her time and efforts to several of the things we have already done here locally. She is a lady of many talents, including making amazing candles. She donated a $1 from the sale of each one at the Mom's Night Out event on Friday night. She approached me asking if we'd be interested in hosting a party for Tastefully Simple as another fundraiser. Well, it is now set up and ready to go! She will be donating 15% of her profits from the party to our efforts to find a cure for SMA. All the hostess gifts earned will be raffled off once the party closes out.

If you would like to order, you can visit the website and shop. It will ask you before you finish if your purchase is for for a host/event. You should be able to put my name (Rita Wright in TX) in there and we will get credit! It ships directly to your house a few days after you order it. Just be sure you order early so it will get there in time for the holidays. I already have my eye on a few things for our Christmas Eve appetizer night.

Vicki is an awesome lady who never stops finding ways to help others and I am honored she is doing yet another thing to help our cause.

Recent Happenings

We did one final bake sale last night. We stuck with baking whole loaves and selling just those plus some Amish Friendship Bread starters. I think we were able to raise around $200! Thanks a bunch to the Marnae, Kim, and Sara who helped make yummy goodies for the sale. A big thanks to Suzanne for thinking about us and letting us set up for her mom's night out event! She gave special discounts for people buying from our sale or bringing items for Ronald McDonald House. I'll have to take a picture of the HUGE tub of donations I have to take down there this week!

Just a few more cards I've made this past week. Christmas time is here!

While I was at the bake sale on Friday, one of the other vendors there came over to give me a wonderful massage using her essential oils. We were talking and she had been following our story from around the time Eli was first sick. During our conversation, she told me her sister had lost 3 babies to Werding-Hoffman. That is the older name for SMA Type 1. It was sad to hear of another family who had experienced this loss not once, but three times. Thankfully her sister does have a 13 year old who is healthy.

Tonight came the sad news that we lost another baby in the SMA world. Beautiful Owen lost his battle with this horrible disease. Please keep his family in your thoughts (and prayers if you pray) this week. My heart is broken for them.

Today made 10 months that we have been without our beautiful boy and I miss him more and more every day.

Pumpkin Carving 2009

Jason's Pumpkin
Rita's Pumpkin

Eli's Pumpkin

We were browsing at Kohl's today and look what Jason found!!! I don't really want to put up the tree this year, but he wants to, so at least we have this to put on in memory of our little man.

Waffle House Fundraiser

So many thanks go out to all the folks up in Maryland who worked so hard to make the Waffle House fundraiser such a success! Aren't the crabs and t-shirts AWESOME? They did an amazing job; with the 20% donated from the restaurant and customer donations, they estimate they raised over $1000! (I think you can click on the pictures for a larger, better view of the shirts. I love them!)

www.uniteforthecure.com
We are so close to the halfway point for our goal! If you haven't donated and still want to, you can go here and it will have information and links on how to donate online or give you an address where you can mail a check. Thanks to the ladies from the MSN board who are dropping by wanting to help! You ladies are awesome!

Few more pics from the arboretum

These were all taken with our Canon Rebel XSi. I LOVE it. I am still waiting to take a class on how to REALLY use it and I'd love to learn how to do some editing too. Jason and I hope to make it our common hobby at some point. We do enjoy going and taking pictures together so for now, that's enough.

Mercer Arboretum

I had been wanting to get out and play with the camera, so we headed out to the arboretum today to see if we could find any good subjects. I was happily surprised to find butterflies galore! It was AMAZING to say the least. We also got to see a rabbit, squirrel, two turtles, and a few birds. Hope you enjoy the pictures!

Friends are AWESOME!

My wonderful friends in Maryland have come up with a great fundraiser for Unite! Brandi and her amazing friend Stephanie are having this dinner at Waffle House on Saturday night to help us make our goal of $5000. I love that we have friends who care enough do to this. I wish we could be there, but I know they will do a great job spreading awareness and raising money to help end SMA! Thanks ladies! Love you!