Petition!

If you haven't signed the petition to cure SMA, please do so. We need our government officials to start spending our tax money on things that REALLY matter! It is such a waste that so much is spent on elections, celebrations, kickbacks to family and big business. Our kids are dying from something that could be cured if enough money was directed towards research. I'll keep posting this because it is very important to my family. Let's help Bill and Victoria get the 100,000 signatures!

such a lonely place

Our house is lonely, I'm lonely. Jason went back to work yesterday. It is hard to be here without Eli. I'm staying in bed as late as I can so I don't have to look around the empty house. He was usually napping this time of morning after we had been up playing a little. We just miss him more and more every day. It was so hard to see Jason come home from work last night; I knew it would hit him hard and it did. He loved coming home and getting that beautiful smile. It made any bad days at work better. Things are just not the same...

I didn't sleep well last night. I kept waking up thinking about Baby Grace. For those of you not from our area, she was a beautiful 2 year old girl who was beaten and tortured by her mom and step-dad and then thrown into a bay in Galveston. The mom is currently on trial and it is constantly on the news. It just breaks my heart every time I see her picture. At one point last night when I was wake, near tears, I thought I heard the baby monitor... I turned it off already though, so of course it wasn't that, but it did sound like the first rustling of Eli waking up. I forgot for a minute that he was gone, but the red light on the monitor served as a quick reminder. Even though we are going through hell right now, I'm happy Eli had a life of love; he was given to a family that was good to him, didn't hurt him, just loved him. I just wish we had had more time.

Memories

MEMORIES
If we could have a lifetime wish

A dream that would come true,

We'd pray to God with all our hearts

For yesterday and You.

A thousand words can't bring you back

We know because we've tried...

Neither will a thousand tears

We know because we've cried...

You left behind our broken hearts

And happy memories too...

But we never wanted memories

We only wanted You.

(Unknown)

I found this on a grief website I was looking at and it really sums up how we are feeling right now.

PSA: Peanut Butter Recall

I'm getting a little worried about this latest recall. Please be sure to check out the list below. I would recommend throwing out any peanut butter crackers or cookies just to be safe. I need to check our pantry too. (I know it's way off track, but I haven't been paying attention to this so I'm afraid some of our family may have missed it too).

http://www.accessdata.fda.gov/scripts/peanutbutterrecall/index.cfm#All

Thank You

One lesson this whole ordeal is teaching me is to be a receiver. I love giving....it is what makes me the happiest in life. I love doing little things for people I love to see them smile. Jason and I usually buy toys every year for needy kids around the holidays. We participate in holiday food drives. I love all of these. It makes me feel great to give to those in need. Receiving is not on my list of favorite things. I am not big on gifts TO me. Since Eli became sick, everyone has been amazing at helping and giving. A lot of it has been hard for me to accept, but I'm trying. Its not that I don't appreciate it, its just that I don't feel worthy of all the effort/time everyone is putting into helping out. I don't think I've ever done anything bad to deserve what happened to us, but I also don't feel like I deserve all the good that has happened either.

If you are one of the people giving donations, food, thoughts and prayers, thank you.

Small Update on Us

Not much new from our house today. We are both a little under the weather. Jason went to the doctor yesterday and is currently on antibiotics. I'm starting to get whatever it is, but feel a little better today than yesterday. Nights are usually my worst time, so that could change at any minute. The weather was beautiful yesterday, high 70s, but changed last night and was down in the 30s. I think we are supposed to have a few more cold days, but we seemed to have avoided the freezing rain that was discussed last night.

I think today is a numb day for us both. Jason will be returning to work tomorrow. I know he dreads it; not the work, but the constant "I'm sorry for your loss". I don't think we know what to say back to that really. I'm glad I can hide in the house for a while so I don't have to face it. I know I hate the sound of the phone ringing now. I usually just let the house phone ring and go to the answering machine. I always lose my cell phone so I never know when it rings anyway. I'm sorry if you are one of the family and friends trying to call. We just need a little space right now...

I don't know what should be normal for our house now. It just seems so lonely and quiet. I hate that. I know we are both struggling with what to do with our time. We end up watching TV or playing on the computer. Nothing productive, nothing together. We have a lot to work on, especially finding activities we can do together. Avoiding each other isn't a good thing; part of it may be that we are both not feeling well. I hope thats it anyway...

The Evil that is the Media

Sometimes the timing of things makes me wonder how much hell we are going to be put through in our healing process. One of the big stories around our area right now is a set of parents on trial for beating their 2 year old daughter to death. They torturned her for a whole day... A WHOLE DAY. The mom was pregnant with her 2nd child when she was arrested. Every single time the news has promos or comes on, the story is on there. It's in the papers....it's everywhere. I know it will always be hard to see these kind of stories, or to see parents mistreating their kids around us, but why this trial, why right now? It breaks my heart even more and fuels the anger and unfairness I already feel. It is a shame that such a beautiful little girl was given to such a cruel and heartless woman. I hope her new child will be given to someone who will love and cherish him/her. As for the parents...there is no punishment fitting for what they did... I wish all of us who have lost a small child through no fault of our own could stand before them for days on end telling our stories, letting them know that we would die for what they had...not kill it.

SMA Information

While I'm sure most of you have already done your homework on the disease, I feel the point of this blog, at least for right now, is to raise awareness. I want to share some facts about it so that you are more informed and can talk to others about it. For anyone in our family, you too could possibly be a carrier! We do not know what side of our family this gene is being inherited from, so please think about getting tested.

Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.

WHO IS AFFECTED
SMA is one of the most prevalent genetic disorders.
One in every 6,000 babies is born with SMA.
SMA can strike anyone of any age, race or gender.
One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.
7.5 million Americans are carriers.

THE TYPES OF SMA
SMA Patients are classified into four types based on milestones achieved at onset of SMA. Type I and II are the most prevalent.

Type I, or Werdnig-Hoffmann Disease, is the most severe form of SMA. Type I SMA strikes infants between birth and six months old. Children affected with Type I cannot sit without support.

Type II affects infants between seven and 18 months old. Type II patients may be able to sit unaided or even stand with support. They are at increased risk for complications from respiratory infections.

Type III, also known as Kugelberg-Welander Disease, is the least deadly form of childhood-onset SMA. It strikes children as early as the age of 18 months, but can surface as late as adolescence. Type III patients are able to walk, but weakness is prevalent. Most patients eventually need to use a wheelchair.

Type IV is the adult form of the disease. Symptoms tend to begin after age 35.

SMA does not affect sensation and intellectual activity in patients. It commonly is observed that patients with SMA are unusually bright and sociable.
**this was taken from the FSMA website**

Be sure you go sign the petition to cure SMA! We need to get our government to help fund research for this horrible disease! The petition was started by Bill and Victoria Strong, who have a daughter with Type I. To learn more about Gwendolyn, you can read her story on a blog they keep for her.

Time Heals all Wounds??

We went and looked at the headstones today to see which one we liked. It was hard to decide without seeing it in person, so we brought the drawings home to look over them a bit more. We then went out to the cemetery to see if they had any similar to what we were looking at. There were a few there that we liked, some similiar to what we'd already picked out, so we should be making a decision soon. They will be engraving the crab toy that Eli loved so much on it.... it always made him smile so I can't think of anything better to symbolize his life than that.

The funeral flowers had all died for the most part, so Jason and I cleaned off Eli's grave while we were there. I kept the bows and carnations that were still pretty and made a little bouquet with them. It was so hard to stand there knowing my little boy was deep in the ground, so far away from my arms. I would give my very soul just to hold him one more time, to see that beautiful smile just once. I miss him more and more every day.

We took time to clean off the graves of his grandparents too; we also brought fresh flowers to put in the vases on their headstone. I hope we can take flowers out at least every other weekend. One grave there had a pole with wind chimes hanging on it; I think I will do this for Eli too. I have always loved wind chimes; my grandparents always had them on their porch and I have some on mine right now. I just have to find one that is worthy of my little guy; he will then have music to listen to on those cold windy days.

The past 2 or 3 days have been tough. I could easily have stayed in bed and ignored the rest of the world. Jason has pulled me off the couch a few times already. I'm not sure why its getting harder to deal with, but it is.... I thought time was going to help us heal, but it seems to be making me hurt.

I think I am now entering the silent part of grieving. I don't really have much to say lately; the tears are still flowing but the words are not. Sometimes the silence in our house is deafening...the TV is almost always on to disguise the lack of baby cries and coos.

We miss you so much little man.

We will be going to the funeral home to look at the work-ups of the headstones today. I guess that is the last thing we get to do for Eli.

3am, and yes, I am lonely

Most nights I still wake up at 3 am, just from habit I guess. Tonight I couldn't seem to go back to sleep. It has now been a bit over a week and a half since we lost Eli, but it seems like years already. Maybe the lack of truly living makes it seem like so long ago... I know we are just existing right now. Jason didn't leave the house at all yesterday; neither of us showered...we are just here.

I don't know how to go about the process of living again. When is the right time to decide if we want more kids, the method to try to have them, or look into adoption? 3 months from now, a year, never? When can we laugh again and not feel guilty because we aren't crying? When will we go to the store and remember that we don't need anything from the baby aisle? When will people stop calling to make sure we are okay? What kind of life/future do we have now?

I don't think I ever want to put myself into a position to go through this heartbreak again. It hurts too bad. I hope with all my heart that someone can find a way to help or cure children with SMA so that no more parents have to live through this hell.

Get Up...

Yesterday was a bad day. Not that they all aren't bad, but it was one of the worst so far. I think Jason and I are both really struggling with what we are supposed to be doing... Our whole day was filled with taking care of Eli....now what? We seem to alternate; one day he wants to stay in bed all day, the next I do. That works out okay because the other person can pull the covers back and say GET UP. The days we are both in bed are the rough ones; there is nobody here to make us get up; we can only cling to each other and mourn.

I'm grateful to have such a wonderful husband; I just hope this loss doesn't cause us to lose each other. It is easy to push those that love you away in these times. It happens to many couples. I just know Jason, like Eli, is a big part of me and I can't make it without him. If nothing else is worth crawling out of bed for, he is. I have to remember that and get up. I didn't do that yesterday.

Amendment

Several days, or weeks...I honestly can't keep up with the passing of time right now....I wrote an entry about being uncomfortable with the number of people who have stopped in to read our story. I have now changed my mind; I'm starting to believe that this blog is part of Eli's legacy. It seems that many of you moms now appreciate your own kids more, even during those rough times. Perhaps that will prevent just ONE baby from being shaken in frustration? I would write 24 hours a day if that were the case. Or maybe its just to show you how precious your little one is; that getting up at 2 is not a chore, but a privilege. Maybe will you forget that there are dishes piled up in the sink and spend a few more minutes enjoying your daughter or son's smile. They grow up so fast; don't miss a moment of it. I wish I could go back knowing these things.... You don't know how much I wish that.... each and every moment would be treasured more...but I cannot.

I am at a loss right now; I have no idea where to go in the next 5 minutes, 5 days, 5 years. Breathing....it's a good thing sometimes, but right now it is tough.

Sadness

For 32 years of my life I never wanted kids. I never did the babysitting thing, was never really around babies at all. I would be annoyed at stores and restaurants by the kids running all around being loud. When we found out we were going to be parents, I had mixed feelings. We had discussed having kids, but hadn't really decided that it was something we wanted to do. I knew I could never terminate a life, so we started down the journey...

I spent hours and hours researching... I read so many reviews of baby products that I became an expert of sorts. I only picked out products that I thought were safe. I read up on vaccines and got a little worried, so I made a plan to space them out. I did everything I could do to keep Eli safe...but in the end I was helpless to do so. It hurts to watch your little one suffer from something you can't take away or fix. I cried so many times wishing I could be the one hurting, the one who had to die. I wanted so much for him to grow up. I think he would have done great things in this world. He had so much personality for someone who was so new to this world. I fell in love more and more every single day. I would get cranky when he wouldn't eat or nap, but I gave up being upset and decided that if nothing else worked, we would play. I loved being a mom. It was the greatest job in the whole world.

Now that my job is over, I'm lost. I have no idea what I want to do with my life. I don't know where my focus should be right now. Jason and some friends had mentioned maybe I should look into nursing or teaching, but I'm just not sure. I had so many plans of things to do with my son that I find it impossible to get off that track. I still want to bake cookies, play with clay, and spend the day at the park learning about plants. It is just not right or fair that I don't get to do those things. Not fair at all.

I looked at an adoption website today just because I was a little curious. I found baby after baby with serious issues....issues due to them being shaken. That only helped to fuel my anger at the unfairness of this situation. I would have never hurt Eli. NEVER.

This pain and loss is almost more than I can deal with at times. I hope it will lessen over time, but for now it is only growing stronger. I am so thankful I have a wonderful husband to hold me when I cry; someone who feels the same pain and will stay in bed and be sad with me. We are both so lost and hurt right now; the only thing saving us is each other. I love you, Jason.