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.

Jason sat down to try and write the dedication page for the cook book tonight. Here are his words....you might want to get a tissue before you start reading. We are both sitting here crying, longing for another moment with our precious little one.

August 2, 2008 is a day that I will remember for the rest of my life. The doctors were in sterile operating attire, my wife was prepped on an operating table, and the room was set for the arrival of a precious gift sent just for Rita and myself. With a simple incision and separation Eli was brought into this world. It was an amazing feeling. I was so excited. I did not know what to do; stay next to my wife; go look at my new son as he experienced his first moments in his life, or just stand there in awe. It seemed like he was pulled out of the empty air. I still remember the little push on Rita’s stomach the night before and wondering what Eli would be like. The decision was made for me. With a “you can go and look at you baby,” I was ushered to look at my son up close for the first time. He was simply beautiful even though they were still cleaning him up. Little perfectly formed fingers and toes, arms and legs flailing; he was perfect to me. Emotions rushed through my body. That was my son. JUST AMAZING. He was really here. Each motion he made seemed somehow exciting. We were taken to the nursery for cleaning and weights and measurements. I was just stunned while we were there. I stood with my arms behind my back just watching the nurse do her job. Finally she said I could touch him. The first touch was magic. A tiny hand clasped onto my finger. It was a simple reaction, but one that will never be forgotten. I stood there and it seemed like everything else disappeared. Nothing mattered; just me and my little Eli. Who knew that moment would be one of the greatest in my life; given to me by something that was here just a little short while, for on January 14, 2009, just 5 months after his arrival, Eli was taken away from Rita and me. I watched as my son drew in his last breath from this world. All life was stalled and my son was no more. No more clasps around my finger. No more smiles. No more giggles. No more life.

The Clock Ticks On

The clock ticks on

While my soul bleeds slowly

And the aching of my empty arms

Cries softly, like a child in the night

I examine the hole in my Self

That remains where once a baby smiled at me amidst diapers and worries

And long sleepless nights

That then were spent in caring

But now are spent in silent dry tears

Listening

As the clock ticks on

© 2000 by Kathleen P. Leach.

Growing Garden

Our First Tomato of the Year!
We have about 5 corn plants that are doing good so far!

One lonely apple!

Missing the little guy today...

I wish I could get to a point that pictures made me smile and remember the good times. For now they just fuel my anger and make my arms ache. I long to hold him, even if it is just for another minute.

I'm sad tonight. Really sad. It hurts me to look at my husband sometimes. It is just so unfair that two people with so much love between them are in the situation we are in. We are both calm and patient, very loving, and have adequate means to provide for a family. Yet here we are, childless, perhaps forever that way. What kind of cruel world is this? It sucks to hear about people hurting their kids or people who have no possible way of caring for their kids to keeping having more. I hate it. HATE it. HATE it.

Late nights of too much thinking and snoring husbands...

I was thinking about the past two weeks and how much "better" I think I've been dealing with things. I came to the conclusion that it is working because really, I'm NOT dealing with anything. I'm in some sort of avoidance mode. We took the framed pictures of Eli out of the living room a few weeks back so we could use the bar area for company. For some reason, we never put them back up. Walking past them every day triggered a lot of crying for me, so maybe that is helping curb the number of breakdowns. Who knows? None of this makes any sense. If you come to my house and look in the cabinet underneath the bathroom sink, you'll find lots of hooded towels, baby bath stuff, and a rubber ducky. Why? That's all that remains of what was...everything else has been put into the den of sadness formerly known as the nursery. I can't put those last few things up and try to go on with my life. Not yet. Maybe not ever. How can that be all there is left?

I had to go to the doctor yesterday. My OB/GYN quit taking my insurance so I had to find a new one. Sitting in the waiting room was hell. I had pregnant women all around me. One had her whole family there and they were so excited about finding out the sex of the baby. Another couple came in and had the most adorable little boy. He was having a blast screaming and playing. I felt tears falling down my face a few times but I just burrowed further into my history book and tried to block it out. It is hard to live in the real world sometimes. Of course I cried when I had to meet with the doctor and give her all my history. She seemed nice enough, but of course she was clueless about SMA, much like we all were before. Oh how I would love to go back in the past and never have to hear those horrible words.

We did go start the bank account for the nonprofit today. We can take donations now but they are not tax deductible yet. Getting that form filled out and submitted will be the next thing on the to do list! Miss Megan has volunteered to help with designing a website so I am excited about that. So many kind souls have joined in this journey with us and I can't ever say enough thank yous to get our appreciation out there.

Kindness is difficult to give away because it keeps coming back.

One small action leads to another, which can lead to many. Your actions may inspire others to do the same, with far-reaching results that completely outweigh that first effort. You'll probably have no idea how much of a total effect your actions will have. But that kindness will often be paid back two-, three- or even tenfold. If not from the person you helped, then from someone further down the "kindness" chain. So go try it out! Do a kind thing for the next person you meet, and see if you don't get a positive return.

Just thought that was worth posting today.

Through Eli's Eyes is now official in the state of Texas! I got the papers today. Now I just need to get lots more help with getting the financial part set up and maybe find someone to design a website. If anyone knows how to do a web page and would like to volunteer to help out, I would really appreciate it! I wouldn't mind some recommendations of designers just in case I do end up hiring someone to do it. I have to figure out how to get the domain name and all that too. I am totally CLUELESS on this part of things so it will be time to call on some friends for help! We can't accept donations that are tax deductible yet, but hopefully we can get that part progressing soon.

Thanks again to Robin for helping me start this process and guiding me through it. (HUGS) to you!

Nights once filled with cries
now filled with lonely tears
A mother's heart breaking
and wishing baby near.

No answer to the question
of why you had to go
No comfort to the hearts
of those who loved you so.

Each day starts with wonder
oh why get up today
All the reasons for my labor
have left and gone away.

Is there any light
in my dark and dreary day
I need a bright sunshine
to make me want to stay.
~ Rita 6/6/09


When a parent dies, you lose your past; when a child dies, you lose your future. - Anonymous

Okay....bit confused here. If there is a nice lady named Stephanie from IN that visits our blog, can you pretty please send me an email? :o)

Well, today I received a check from a church in Indiana and the note just said it was a gift and that a Stephanie King worshipped there... Just strange to get something like that out of the blue with such a brief note attached.

This weekend is a sad one for me. This week last year was the weekend of my baby shower. I hadn't planned on having one. I didn't think anyone would come. I was so shocked when we had a huge room full of people and that picture only shows a part of all the beautiful gifts we were given that day. To my amazement, my friend Brandi and her family came all the way from Baltimore to be here for it. It meant so much to me that she did that. She always has a special place in my heart because she was the one with me when I met Jason face to face for the first time. She watched our relationship develop and mature and stood by my side when he became my husband.

It is almost impossible for me to imagine that Eli would have been 10 months old this week. I know August 2nd is going to be here before I'm ready for it. I wish I had the words to describe how much I miss him. I think I would miss an arm or hand less than I do him. He became my reason for everything. It is hard to lose something that important. I am just thankful for my Jason. I know that without him, I wouldn't be here now. It was too bad of a place to want to stay after Eli's last breaths but I didn't have the heart to put Jason through any more loss. I love him beyond words.

It is just unthinkable how much can change in the short span of a year. Be careful that you aren't wasting your precious time with your little ones.

Guilt

I'm not sure how the grief process goes, if there is any pattern really, but I find myself in an odd place this week. For a few moments, I forgot to be sad. I didn't forget Eli; I always go to sleep and wake up thinking about him, but I did have moments during my day where I didn't feel like my world was over. I think going to school and getting out of the house every day has been a good thing to help pull me out of miserable place I was living in. I have mixed feelings on that. Does that mean I'm forgetting? Moving on? or just finding a place where I'm okay for now? I have no idea. I just know I haven't cried myself to sleep this week. I've woke up crying and come close to tears before sleep, but no crazy anger surges or crying until my eyes hurt. Of course I'm crying while I'm writing this, but I won't count that. I just know it feels strange, different this week and I'm not sure what to think about it.

School is great so far. My professor is from Alabama and seems to have strong opinions on many of the more controversial subjects in history. His lectures have yet to be boring and as an added bonus, he usually lets us out early! I turned in my application for the teacher certification program yesterday. I still wonder if I'll be able to do it, but I at least need to try. The difficult part will be seeing kids come to school dirty or have their parents unwilling to take interest in their child's education, but I had teachers growing up who cared enough to almost be like a parent to some of those kids. Maybe I can too.

We had a nice day today. If you haven't tried cooking with your spouse, I highly recommend it. I picked out three new recipes and we made them together today. It is a nice bonding experience and you get some great food to eat when you are done!! Here are the recipes we made tonight: Italian Meat Loaf, Potato-Gorgonzola Gratin, and Pound Cake. The original recipe for the pound cake calls for blueberries, but I had fresh raspberries and used those instead. I think they were pretty good and none of them are on our "do not make again" list. I hope we make this a weekly ritual as it is something we enjoy doing together. I was happy we got to share all our hard work with my friend Fran! I think she was thrilled she didn't have to cook tonight; I know I would be! :o)

School is providing a good distraction for me. It makes me get out of the house every day and interact with others. It also gives me something besides my grief to focus on. It is a summer class so we are packing in all the information in 5 weeks! It requires a lot of reading, that's for sure! I find my professor a little difficult to read, so we'll see how the first exam goes on Thursday. Wish me luck!

There's nothing like waking up at 5am pissed off. I have no idea why I woke up in such an angry mood, but honestly, it isn't unusual for me to be mad. Lately I have episodes where the anger is so hot and intense that I just want to get up and break something or hit something. I can feel my heart rate and blood pressure go up when these moments come on. Most the time I can try to take plenty of deep breaths, count to 10 or 50 or whatever, and it will pass with the house still in tact. I know the trigger, but I'm not sure what to do to fix it. I can't remove the images of Eli taking his last breath in my arms. I can't stop myself from going back over the events of those 3 weeks over and over and over again to try and figure out something that would have changed the outcome. I know it is too late, but it doesn't stop me from trying to find something, just one little thing, that I could have changed to make things different.

I fought so hard in the hospital back then to get us home. I wanted what time we had left to be good times, not times filled with so many needle sticks that there was no place else to stick or a constant parade of doctors, nurses, hospital staff. Eli was so stressed out by scrubs and white coats and I was tired of having to calm him back down when unnecessary people would come in and get him upset. I wanted to come home and take him for walks or to the zoo or just something not related to SMA or hospitals. I had NO idea that the time I had left was 4 hours. 4 damn hours. I feel like somebody should have told me he was so close to death and asked me if I really wanted to take him home. Honestly, I'm not sure I would have, but I can't say that for sure. I just wish I'd had all the information to make that call. I think they knew or else they wouldn't have made us ride home in an ambulance, right?

I don't think I will ever be sane again. Can I be when I sat and held my son while he took his last breath EVER? I am really beginning to doubt that. I guess I will have to keep faking my way through things, but life sucks. It is hard to go back to being the childless couple. There's nothing in our days that make them worth waking up for, going to work for, breathing for. I have some hope that things will change and maybe some joy will be brought back into our lives, but sometimes it IS hard to see the forest for the trees.