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.