To all of our local friends: Mark your calendar! On the morning of August 1st we are going to have a Family 5K to honor and celebrate our little guy. It will be informal this year, no set entry fee or anything. We will be asking people to bring breakfast snacks/drinks to share and walk. Any donations to Through Eli's Eyes will be optional. I should be meeting soon to finalize the details and once that's done, I'll post here and then send out Evites to the people I have email addresses for. I am very excited to do this and am thankful to my friend Kim for being so eager to take care of most of the details.

I keep having so many dreams lately where I am telling people over and over again that Eli is dead. I had a dream last week that I returned to my old job and everyone kept asking me how the baby was and I just replied "he's dead" over and over and over. It was horrible waking up from that one. A few days later, I had another dream that I was standing in the middle of some store screaming "my baby is dead".

Is my mind finally trying to process that he's truly gone? Do I need people to know that I had a baby, even if he's not here now? Do I just need that recognition that I am a grieving mom? I have no idea, but I do know that I sure hate those dreams. I can't even escape from the hurt in my sleep...

SMA claimed the life of another beautiful little girl this week. Each new death just tears away another piece of what little heart I have left. I hate feeling so helpless. I feel like I just sit here and watch it happen over and over again, so powerless to stop it. That hurts. It hurts so much.

This week I feel like I'm sitting by watching my marriage fall apart too. There is a rift that seems to be developing between us and I just don't have the energy needed to stop it from happening. As the shock of what happened continues to wear off, our hearts break more and more. We both sit with tears in our eyes so much of the time lately. This is not how things are supposed to be. We struggle to find things to do because we had plans, things we couldn't wait to do. Now those plans are gone and it is so hard to make new ones. How do we plan again after things went so wrong last time? I used to be such a planner, but look where that got me. It is easier not to have expectations now. But what do we fill our time with now? We have talked about getting a puppy, but I almost feel like we are grasping at something, anything to feel the void. I think we both know that is impossible.

I hope we can take a trip out of town soon and do some repair work and nip this in the bud. I love my husband more than anything. He is meant for me and I intend to keep him.

A bit of rambling tonight...just needing to work through a few things. I'm trying to keep the "Oh my God she is crazy" posts confined to my journal now. It is too much to expose all that to so many people. Grief is just not pretty and not always appropriate to throw in people's faces. I'm trying to do better, get back to being a better liar. Life is much easier that way. Dead babies just don't make for good conversation.

Today marks a strange point....Eli has now been gone as many days as he was here. How did time go by so fast? I found myself in his room this morning looking for a basket. All I could do was look around and see all the things still in the packaging, never opened, never used. We had plans. Big plans. Fun plans. Now I have some pictures and the smell that is slowly fading away. Damn I miss you little one. Your robe is still hanging on the closet door...you only wore that once I think. I saw that cute Pooh outfit that I loved putting you in hanging in the closet along with all the overalls that you looked so adorable in. Your Halloween costume, the only one you'll ever have, is still hanging in there. Extra diapers and formula still on the shelves...bottles bagged up on the floor. What the fuck am I supposed to do with all that? You should be HERE, with me, not rotting in the ground. I'm sick of my arms hurting, aching to hold you. Life is so unfair and there is no possible way to make it not be so.

Today was also the first anniversary of the day my friend Angela heard those words...the words that I wish none of us has ever heard...spinal muscular atrophy. Her little guy passed away on August 2nd, the same day we welcomed Eli into our family. My heart goes out to her today too. I hate SMA. If you haven't signed the petition, please it do now for our little boys. This has to stop. It just has to stop.

Sometimes there are so many things on my mind that I don't know what to write about...

One recent blog post I read had me thinking a lot today about my blog and why I write. Many grieving parents blog; it is a great release and I personally believe that writing helps me work out some things in my mind. Some of the other babylost bloggers are not "out" to their friends and family. I can't say I blame them most of the time... I know sometimes the things I write here probably make people shake their heads, say I should be committed, or maybe they can't figure out why I'm still going on about things like they happened yesterday. It is hard to write when you know people who actually KNOW you are reading it. Grief is a very raw emotion and it doesn't always look pretty on paper. To those that have not been there, it may appear to make someone look crazy, even mentally unbalanced (and yes, there are moments that I know I am crazy and unbalanced). I've debated many times about starting a new blog that I only write for myself and who knows, maybe one day I will. For now, I figure I will continue to write here and if I offend anyone or they finally get tired of reading my crazed rantings, they'll just stop dropping by... I think grieving parents must censor themselves so much that we should at least get one avenue where we can be ranting, raving fools.

This week has been one of those weeks that make me understand the 80% divorce statistic that is always associated with bereaved parents (I'm not sure I believe that one; most couples I know are still together). I honestly don't think those people divorce because they no longer love each other...more so because they do. It is hard to watch someone you love hurt so much and not be able to fix it. I know that's a big issue for men...they live for fixing things and unfortunately, this is one of those things that just can't be fixed. We go back and forth in our relationship and this week has been one of the estranged weeks. Other weeks we can't seem to touch, hug, or spend enough time together. I guess it is all part of the roller coaster we are on....up, down, up, down...lather, rinse, repeat. I know my Jason is having a rough week and I'm not doing a good job being there for him. I am just not strong enough to be that person right now, if ever. Father's Day was a double hurt for him, having lost his dad and Eli too. His dad's birthday is also this week, so that doesn't make matters any easier. I have no idea what it feels like to lose a parent, so I don't know his pain. I can only wish I had a magic wand to make it all go away.

If I have learned anything in these past 5 months, it is never to say "I know how you feel" ever again. Each and every situation is unique. Even if you think you've been there, done that, it is not the same. I promise you, it is not the same at all. I only know how I feel and can imagine the pain others in my situation feel, but I won't know their exact pain. I can't even know my husband's pain and we shared a loss. I can only work through my own and hope to find ways that might make coping easier.

My other issue keeping me up tonight is hopelessness. I feel beaten down this week. I am having trouble finishing up the cook book and getting the federal application even started for the non profit. I honestly wish I could wipe the words spinal muscular atrophy from my mind and NEVER think about them EVER again. Why? It would be easier. I won't have to read about other sicks babies, learn of new angels, or hear about pregnant women finding out that their renewed efforts to have a healthy baby have been thwarted by the cruelty of SMA yet again. My heart is broken, shattered even, and all of that continued bad news just breaks another little piece of what I have left. This week, I don't want to think about SMA. I hate it. I hate what it has done to so many of the wonderful families I've met online during these past 5 months. I will battle through and get back to the fight so that my Eli did not die in vain, but for this week, I think I need a break.

I've always known Jason was the perfect man for me, but I got a big reminder this morning of just how true that was. I left a bit late for school and had to be there on time because we had a test scheduled for today. The teacher locks the door at the start of the test and if you are late, you go on home and enjoy the zero you got on the test. I was driving and noticed a squirrel in the road. It had been hit, but was still moving its back legs and tail. I had a complete meltdown. I wanted to stop and see if I could do anything, but I had to be at school. I called Jason near hysterical to see what I should do. Being the amazing man he is, he tried to calm me down and when that didn't work, he asked where the squirrel was so he could get up and go see if he could save it. I wasn't sure I was okay with that, but he eventually talked me into it.

He got out of bed, grabbed the shovel, and went to find my squirrel. It had died by the time he made it there, but he still scooped it up and moved it off the road. After him assuring me that it had not been hit again but had died anyway, I guess I am okay. I just don't deal with death that well right now and even though it was *just* a squirrel, wasn't JUST a squirrel to me. I'm sure he moved it knowing I would probably have another breakdown coming home if it was still in the road.

All I can say is he loves me. I can imagine that whole scenario being played out with some other couples I know and there is no way the men would have gotten up and done that for a "stupid squirrel". So if you read this sweetie, thank you and I love you so much. :o)

Some days all I can do is wonder how can he really be gone... and if this is all just a bad dream, can I please wake up now?

babylost

Many times, late into the night, I sit and read blog after blog, article after article, in hopes that one of them will have a few words that will calm my mind and allow me to sleep. Most of the time I end up crying for the person blogging or writing, knowing a similar pain keeps them up writing and reading too. There's a new term I've learned this past month, babylost. Amazingly enough, there are many other babylost parents out there writing, sharing, caring, but most importantly, crying with one another in a shared grief....all part of the Dead Baby Club that non-members hate to talk about.

I'm sure we are getting to a point when people are expecting us to start "getting over it" and "moving on", but after reading, I see that's not expected from people who have walked our same path. It breaks my heart and causes me many tears, but I read those blogs and articles so that I feel normal where I am in my journey of grief. My feelings, thoughts, actions....they aren't crazy or abnormal or even inappropriate for this stage of things. They are what they are and for now, they are my way of coping. Not many people are "okay" even years and years after losing a child. I don't have to be right now. I am as okay as I need to be.

I've learned a lot in the 5 months that Eli has been gone; I've come to understand things that I never spent much time thinking about before. I think I can now understand the people who cut themselves. I don't do it, but I do sometimes feel emotional pain that is so intense, so strong, that I can only cry in hopes that it will soon ebb and give me a chance to breathe. I long for a release to that pain and I imagine that is what those people are going through too. I understand rage now. I feel it at times and would love to get up and break everything in my house; sometimes I'd even settle for something small to smash. I know it won't solve anything or lessen my pain, but at times, it almost feels like it will. I think it is merely a response to the helplessness that comes before the rage, who knows?

Finally, I can start to understand the desperate things women do to have a child. I miss being a mom. I didn't get to be one for very long, but I liked it, loved it in fact. The horrible reality of SMA is not only does it take your baby, but it takes your future kids with it too. I feel like we should have buried Eli in an adult coffin so there was plenty of room for him, our hopes, our dreams, and our future plans. I'm not sure all that could have fit in that little box they put him in; I don't think they realized it was more than just that little boy going into the cold ground. Anyway, I'm not going to be abducting kids from Target or anything, so don't be worried. I just have a little insight on why that might happen, especially when kids are allowed to wander off or are mistreated in the stores. It all goes back to the unfairness that is life and babies. Sad that we had to fill out an application and do an interview in order to adopt our cats but anyone can have a baby. No job? Drug addict? Doesn't matter...you too can have a baby! Screwed up DNA? Nope...better not even try it.

Some days, it is just hard to get up and go. On Tuesday I came across another family with a little one battling SMA. Jennifer's post that day had Jason and I both in tears. It hurts to see someone else having to go through losing their son. I was happy to see that Ryan has had some better days since then and I hope they can have more time to enjoy that cute little boy.

I wish I had some way to stop SMA from continuing to take babies away from their loving parents. I'd glad multiply my own pain to save someone else from ever having to feel it. Yesterday another little girl became an angel, ending her battle with SMA. She was around the same age as our Eli. Babies shouldn't die. They really should not die.

It almost makes me crazy to sit here and read about newly lost babies. I feel like I should be able to do more to make it stop, but I don't know what... If we had enough money directed at research, could we really find an end to this? If so, how do we make more people care enough to donate? It just doesn't help the hurting to feel so helpless to stop it.

I got home from class today and got the news that Eli's headstone had been delivered to the funeral home. We drove up there to see it and I took a couple of pictures. The lighting was not ideal, but here they are. It should be set next week and I can take some pictures while we are the cemetery for that. His picture will be in the box under his name. They wait to put that in when they install it.

I think they did a good job with it. I love the red on the bow.

It was hard to see that big cold piece of granite with his name on it. Very hard. I sure miss that little guy.

We went to the cemetery after we left the funeral home. It is so peaceful out there...

Another one of our rose bushes is in full bloom. We should have blooms out on all four of them this week.

If you search the internet on how to talk to grieving parents, I'm sure you'll find a list of things NOT to say or ask. You'll find the usual things there that upset us, like "He's in a better place" or "I know how you feel", but one you might not find, the one that is KILLING me lately is "How are you?" I recently read an article by another grieving mom and the opening line was "How the f*** do you think I am?" I breathed a sigh of relief. It is not just me who HATES that question. I can promise you, you no more want the real answer to that question any more than I want to answer it. I'm so sick of having to lie and say I'm okay. Do you honestly *think* I can be okay? A huge part of me is decaying in the ground. I go to bed crying because I'm going to have to wake up another day and have no child to love. How good do you think I can be? What would you say if I told you I thought about driving over into the other lane of traffic in hopes that it might make my pain go away? or that I've begged my husband to die with me? Do you really want to hear that? I don't think so, so please quit asking. I'm tired of lying. I am NOT okay and I'm not sure I'll ever be. I AM NOT OKAY.