Today sucks. I should be working on plans for my giant cupcake cake, stressing over what flavor of ice cream to buy, and trying to figure out which decorations he'd notice more.

I was going to post a video but after watching a few of them, all I can see is the SMA. How did we not know?????

August is National SMA Awareness Month

August is National Spinal Muscular Atrophy (SMA) Awareness month and we are excited to be moving forward in both understanding and developing potential treatments for this disease. This is the time to come together with your communities to raise knowledge of the disease to new heights.

Awareness is the beginning of change. The majority of people do not know about SMA until it directly affects their family. Even the letters SMA don’t ring a bell with many doctors, nurses and community members. This is where you can help.

What you can do:
Plan to get involved and spread awareness of Spinal Muscular Atrophy with the Materials here. (You can download these materials or call the FSMA office at 800-886-1762 for printed materials.)Click here for additional awareness materials.

Grass-roots Efforts are the foundation of this campaign. Whether organizing bake or craft sales or setting up candlelight vigils to honor the children who have died, there are many ways to take proactive steps to help Families of SMA raise awareness to help find a treatment and cure.

ALSO: "Honor your SMA Angels"Join with families and SMA organizations around the country by lighting a candle at sunset on the second Saturday in August to remember and honor those who have lost their battle with SMA.

Just when you think things might be getting a little easier...

This week is horrible. I feel like any progress I've made in "getting better" has gone away and I'm back at square one. I had already had some plans to celebrate Eli's first birthday, even before he was here. I miss those plans; I miss him. Babies are adorable covered in icing and I won't get that. I guess I can add it to the long list of things that make me feel cheated. It is a list that will continue to grow until the day I take my last breath. No first day of school, no first date, graduation, college....

I hate SMA.

Please join us at the walk if you can. If you can't make it but want to donate, we do have a PayPal account for througheliseyes@gmail.com or the address to mail a check is on my sidebar. We will find a cure for this horrible disease. If I have to go back to school and learn more DNA/genetics stuff and do it myself, I will.

My thoughts continue to be with Jennifer and the rest of baby Ryan's family as they say goodbye this week. I wish I could be there to give her a big hug. I also have a friend from Facebook, Angela, who lost her little Cisco, Jr on August 2nd of last year. She is never far from my mind either. Much love to all my fellow SMA mommies.

SMA Updates

Please remember our Family 5K will be this weekend at 9am! It is at Deussen Park Shelter #9. You can bring yourself, spouse, kids, grandma, neighbor, etc. We just ask that you bring a snack to share, some travel-size toiletries for donation to Ronald McDonald House, or a donation to Through Eli's Eyes.

My parents will be attending the SMA walk in Kentucky next weekend. I am so proud of them! Jason and I will be trying to make them some T-shirts to wear to honor Eli up that way.

Some good news out of the SMA community is a recent research article that talks about a possible treatment! How exciting is that?

Finally, I got up this morning to find that baby Ryan passed away last night. I've been reading Jennifer's blog every day so I knew it would probably be this week that I would be typing out these words, but it doesn't make it any easier. I hate seeing the babies continue to die. I hate feeling so helpless to make it stop. All I can do is continue to do what I'm doing and hope it will make a difference to someone.

It is so hard to imagine that in a week, if all had went as it should, I would be the mom of a 1 year-old. It hurts to even think about that, just like it hurts that I never got to see him roll over, crawl, say a first word, (I could list a million things I think)... I'm thankful we did get beautiful smiles and giggles.

Love you my little Eli.

Cats!

Even the cats love coupons!
Cat Recycling

Silly girl. I don't know why she like to lay like that!

When you lose your child, nothing is ever the same and you find yourself in an endless debate about how to live your life after. This week has been tough. Next week will be hell. I have no idea how to make it not hurt so much right now. Today I wanted to crawl back in the bed and hide but Jason pushed me to get out of the house and go do something. I did...and came home crying. I decided to go do a bit of shopping since I'm in the mood for our bedroom and master bath to finally have a color scheme. We purchased a dark brown comforter set months ago but never got past that point. Yesterday I found a beautiful throw pillow so I'm trying to build the room around that. I found green sheets to match the pillow and purchased some bath towels and new rugs today. I like green and brown a lot (so much that our nursery was almost done in those colors). After I left the stores I decided to go have dinner out so I could do some proofreading on the cook book. Everything was fine until this family of 4 sat down across from me...

They had two little girls, one who was probably 2 or 3 and so adorable. She kept smiling at me and my heart was melting. She was so fun to watch. They had bagels and she discovered the hole in the middle was fun to look through. Just cuteness over and over. When I got up to leave I gave her a little wave and she waved back and said bye. I felt the tears begin to fall before I even got out the door. I want a family. Not just a marriage, but a family. Do you know how many picture frames and wall hangings have "FAMILY" on them? Lots. Do you know how many things are advertised for families? You'll probably never notice unless you find yourself without a family. It's only those of us who live in the land of loss that notice them the most.

Been a weird week and I haven't had much to write about. Lots of tests at school. I got the proof for the book part of the cook book so I'll be proofreading this weekend. Little sad tonight, but that's nothing new.

Another little girl was lost to SMA yesterday.

Kezley Kay and her family will be in my thoughts for the rest of the week... Baby Ryan continues to be on my mind most nights as I go to sleep. Just lots of loss continuing to go on with no hope yet.

We did go to counseling and I guess we are "okay" if you can really be okay. I was told to get more sleep and maybe try a support group. Both good ideas I think.

Long week coming up... Jason is working a couple of extra days so I have to fend for myself more than usual. I dread it, but I have plenty of school work to keep me busy. We have a test on Wednesday AND Thursday this week. Ugh! I haven't finished the book for Thursday's test, but it seems to be an easy read so I should be able to read the rest tomorrow. We are going to the Astros game tomorrow night. The Cardinals are in town so we'll see how that goes. I am not really following the games like I have in the past; my heart is just not into it now. It is so difficult to go to the games...I haven't made it through one yet without crying. I'll always be sad that my Eli never got to go to a game with me.

I am so sick of the chronic insomnia. I hate taking medicine to sleep because I'm so groggy the next day. I've tried about every sleep aid I can find and all of them cause that horrible medicine hangover the next day. I usually sleep okay once I finally fall asleep, but it seems to take forever for my mind to shut down enough for that to happen. These days I'd kill for a man brain...they never seem to worry about anything! I can't imagine what would happen if we could trade thoughts for a day... Our poor husbands would go insane with information overload and we would be shocked to not be planning the next hour, day, week, etc.

I'm off to try sleeping again...it will be attempt #2, so I hope it works and I'm not up again in 20 minutes.

Cook Book Update

I got the proof for the cover in the mail today. I like it; I hope everyone else does too... We debated about what to put on the front for a long time. I wasn't sure if we should put Eli's picture on it or not, but we did and here's what it looks like.

www.petitiontocuresma.com

Before falling asleep last night, I went back and looked at some of the petition signatures from January and February. I had another SMA parent ask me if I was spreading the word about the disease. I try, but that's one of those questions that hurts me a little. I never feel like I'm doing enough to get the word out. Every time I see another baby die, I wonder if there was something I else I could have done to help stop SMA claiming yet another life. I needed to look back at the petition and see that yes, I had made more people aware.

Many of the names I saw made me cry. Some of those who signed in honor of Eli I don't know personally. I am sure they were some of the amazing ladies from the pregnancy message boards I visited last year or some of you who visit me here. I saw my brother's name, a few cousins, and some friends and former coworkers. I noticed some people who had obviously been recruited by a couple of my amazing friends who continue to work on getting signatures even now. It makes me sad that there are millions and millions of people in this country but we can't get 100,000 signatures on the petition. Have you signed yet? Are there friends on Facebook or through your email that you can ask to sign too? If so, please do it in honor of my Eli. Help that beautiful little boy continue to make a difference. I need that to happen, more so now than ever before.

Thank you to everyone who keeps coming back to visit my blog. I know I'm not Miss Sunshine and many of my posts are angry rantings, but I have to lie enough in "real" life; let me have this one place to be me, the angry hurting mom who would give anything to hold her son again.

http://www.petitiontocuresma.com/

I opened this up to type but I don't know what I wanted to say. Does it help me to come say I'm sad...again? That I can't sleep...again? Not tonight. For this week, maybe the next month, nothing is going to help.

6 months

It is hard to believe it has been that long since I last held Eli. Sometimes it seems like time is going so slow, but other times I feel like it has been decades since he took that final breath. Many days it feels like my life is a countdown to the 2nd and 14th of every month. Can those be the only significant days of my life now? All I get is two days a month of sadness and crying, with the days in between meaning nothing? The counselor I talked to on the phone told me the first year will be rough and I have to question if she didn't get that wrong. I think my lifetime will be tough. You can never go back to who you are 'before'; you just have to figure out who you are going to be now. I'm struggling to do that; I have no idea where to go from here. I have struggled with a career choice for ages but had finally settled on stay-at-home-mom. Now that the 5.5 months I was able to do that is over, where do I go from here?

I miss you Eli. I can't believe I will never hold you again. How can that be? Just how can that really be the reality I must learn to live with?

Some days it would be nice to just disappear.

I've started reading a lot of blogs written by moms who have lost their babies. Not just from SMA, but from all types of illnesses, disorders, and sometimes, the unknown. It is sad how no matter what the cause, we all hurt the same. Some of us put up a better front than others, but most of us are broken shells of the people we were before. Having a child changes you into a different person, but losing that child changes you even more. I go through many days where I don't see any signs of my old self. Where did I go? Will I come back? Who is this stranger I look at in the mirror every day?

I haven't read anything on the other blogs about pregnancy and parenting police, but it has been on my mind so I'm going to share my thoughts on it tonight. It is not a nice side of grief, but not much is. I find myself being the judge of who should be allowed to be parents and who should not. Why do they have a baby and I do not? I would never (insert random parent behavior); my children would be treated so much better than that. It is easy to elevate yourself to the position of best parent ever when you have no child. I can find fault with anyone at this point and make of list of why I deserve to be a mom and they don't. How sad is that? When did it become a competition? I hope it goes away because I am sick of those thoughts. Nobody deserves to lose their child, nor is it up to me to decide who is worthy of being a parent. Easy to say that, but not what usually comes to mind. I sometimes wonder if that is one of the dirty little secrets of babylost moms that nobody talks about or if it is just me.

We visited the cemetery today and it was not a peaceful visit. I have not had a good day today and I shouldn't have went there. I didn't stay long; if I had, I would have ended up on the ground screaming. I thought I needed the headstone there but it only makes it all the more real. My baby is in the ground and I will never hold him again....EVER. What a cold, cruel world.

Fundraiser Ideas

We have the walk planned for August, but I am starting to think ahead to the fall/winter. Bake sale?? I have never had a bake sale, but I LOVE to bake so I am thinking it might be a good thing. I hope to raise money, but I also hope to put some fliers out there and get more signatures on the petition. Anyone had any experience with bake sales? I'd love to hear your thoughts on them. Good way to raise money or not? What products sell the best? Leave me a comment and let me know what you think. I am hoping we can do 3 or 4 sales on the same day around our area. If any of the locals have any suggestions on locations, let me know (or if you would want to volunteer a little time to work one). If we raise enough, I'd like to do another big purchase of crabs for the hospital!

In other news, the cook book is in production! I got a letter today from the company that everything was there and they were ready to start production! Yay!

Sometimes I wonder what's wrong with me... I've looked at other blogs of some of the SMA families and while none of them think it is easy, they all seem much happier than I am. I'm NOT thankful I had a son with SMA; in fact, I'm pissed off about it. I'm glad that Eli was not born into a family where he would have been beaten or abused and I would not have traded him for any other baby in the world, but I am angry. I hate that SMA seems much more common than people realize; I'm mad that we were never offered a test to find out it was even a possibility for us. Why should only the CF test be offered if SMA has similar carrier rates?

I was so stressed out my entire pregnancy because I had a feeling something was wrong. There were times I almost couldn't turn down the street to my doctor's office because I was terrified of what they were going to find that day. The screenings we did made me an emotional wreck until we found out they did not show any problems. But despite those reassurances, the ultrasounds, the good news each visit, I knew something was wrong. I thought I was being crazy after he arrived and was okay, but maybe I somehow knew... Is that possible?

Is my lack of religion maybe the difference in me and the other families? I don't feel any longing for a belief in a higher power. It is a nice idea to think I'd see Eli again someday, but I don't really believe that. I think his spirit might still about around, but that wouldn't fit in with the mainstream Christian beliefs anyway. All is well in heaven, so he'd never know that we are sad and missing him here. He'd just be up there happy and playing, not a care in the world. I had a huge surge of anger during the few minutes I watched of the MJ funeral coverage. I think Stevie Wonder said something to the effect of "as much as we need him here, god needed him more". Ummm...yeah. I love how people always assume EVERYONE is going to heaven, even those with questionable pasts and no known faith. Too scary to admit someone might be burning in Hell, right? I am thankful nobody ever said anything like that to me about Eli. I'm pretty sure it would be an ugly scene.

So, who knows? I am trying to deal with my angry pissed off self if that makes anyone feel better. Good news, huh? I made an appointment with the bereavement counselor from Hospice today. We'll go on the 22nd and see how it goes. She told me today that his upcoming birthday is probably a big factor in all the issues going on right now. I guess anniversaries and milestones are hell on grieving parents. I think life in general is, but those days are definitely worse.

How do you break out of the grief and begin to see the sun again? I hope I can start learning soon. I love you my dear husband and for you, I will keep going.

Well...our first fundraiser (other than the cook book) is official as of tonight. I am so nervous that I will pour my heart and soul into it and nobody will show up. I have no idea how to plan an event so we'll see how it goes.

On August 1st, please join in our Family 5K to remember our son who would have been celebrating his first birthday on August 2nd. We are asking everyone to come walk and then stay and share some coffee and snacks together. This year is a small event as we are just starting out, so we hope everyone can pitch in and bring a snack to share. All ages are welcome! Please come join us as we remember the little boy who changed our lives.

Date:
Saturday, August 1, 2009
Time:
9:00am - 12:00pm
Location:
Dussen Park
Street:
12303 Sonnier Street
City/Town:
Houston, TX

I owe many thanks to my friend Kim for taking care of the details and knowing what to do to make it happen.

I have been blessed with so many amazing friends down here in Texas. For years I cried to Jason about my lack of friends; I always felt so alone here. Now I have many friends who are all working so hard to keep Eli's memory and spirit alive.

How? Here's an example: Tonight I talked to Kim on the phone about the walk. I sent out the Evite and Sara then asks if she can invite more people in the area. After that, I checked my email and Robin had sent me an update that she's been working on the federal application for Through Eli's Eyes. Another email arrived shortly after that from Megan with some pictures of the website she's working on for TEE.

How lucky am I? I will go to bed in a happy mood tonight knowing that people do remember Eli and are willing to devote their time to help us keep on remembering and doing good things in his memory.

Fun...Enjoyment. Are they possible now? It doesn't seem like it most days. I go do the things I used to have a great time doing, but I won't say I have fun now. No matter what we go do, we are always missing something. We went to the baseball game last night and there were kids all around. I don't know if I even paid attention the whole game. I cried a few times, had some peanuts, and came home no happier than I had left a few hours earlier. Instead of taking my mind off things, I get smacked in the face with the very thing I'm trying to forget. It will always hurt that I never got to take Eli to a game. Every time I go I cry about it. I guess one day I'll quit going so that I don't have to cry about it anymore.

Happy 4th of July

I didn't post any information earlier about the little girl who died this past week... Here she is, baby Morgan Jane. Another loved little one lost to SMA. I know her parents will be forever grateful to this amazing photographer for the beautiful memories she created for them. I can't look at them without crying myself.

Friends, family, those of you I've never met... this is why we all need to work together. These beautiful babies can't keep dying. If you have time and haven't signed the petition, please do it. It is the first small thing you can do to help make this stop. http://www.petitiontocuresma.com/ If you have a little more time, maybe ask your friends on MySpace, FaceBook, or your address list to sign it too.

For those of you on FaceBook, we have a group started for Through Eli's Eyes if you want to search for it and join.

My thoughts go out to Eric and Katie who I know have to be missing that beautiful girl so much.

My darling Eli...

I am sad that we aren't celebrating your 11-month mark today. I still can't believe you aren't here with us. Daddy and I both think you were more like a dream to us now. It feels like so long ago that we last held you. Oh what I wouldn't give to hold you once again. It is hard to still be here without you. I miss you so much. I know I said I never wanted a baby but boy did you change my mind. I just wish you had stayed longer... We didn't get to read even half of the books I got for you. I was getting a little sick of Dr. Seuss, but I'd gladly let them twist my tongue all up if I could just have you here to read to.

I'm not really sure what I'm supposed to do now. I had already decided not to go back to work and be home with you. I don't know where that leaves me now. I don't want to go back to a job like my last one. I cried so many times wishing I could quit. I can't do that again, not right now. I have no idea what to do. I just want to be your mommy. Nothing else seems right or fitting for me. I have started the process of getting in the teaching field, but I don't know if that is the right place for me. Can I look at those cute 1st graders every day and not imagine you and what you would look like? Can I stand to be around kids all day and then go home to an empty house? I have no idea. I don't think I can commit to anything right now, so I'll just work on helping other mommies and daddies by trying to raise some money for SMA research. Do you know how much I'd be willing to sacrifice to keep other mommies from missing their babies as much as I miss you? EVERYTHING. Mommies need their babies. They really do. The world is just not the same when you walk around with a big part of yourself missing. You left mommy with a big hole in her heart and I don't think it will ever heal.

Today I shook myself off and am trying to stand back up and be a good wife to daddy. He has been such a great man through this all and I need to give him a reason to continue to love me like he has. I wish you could have grown up and learned to be like him. He's amazing and I hate that you can't be here to see that. He showed you so much love while you were here and was the best daddy I've ever known. I miss watching him play with you. You saved your cute giggle just for him and I miss it.

I love you little one and I always will. I'll try not to be so angry all the time. I'm just mad that so many other little ones are here being neglected and abused while you had to go away.

Hugs and Kisses,
Mommy

To our Kentucky friends:

The Kentucky Families of SMA is having a Walk and Roll at Keeneland on August 8th. If you have time and can make it down there, please consider joining in the walk.

I have so much on my mind lately, but no words to really put it all in writing. It is a rough time for us right now, but I honestly have no idea why. I don't understand the ups and downs of grieving. What makes one day worse than the other? Why are things worse after 5 months? When will we stop hurting so much? All questions with no answers...

I think for me, I have lost hope. I'm grieving for Eli, but also parenthood. I have no hope that I will ever hear a little voice call me momma. It is hard to think that our lives will go on without a child, but I honestly think that will end up being the case. I keep thinking I'd love to try again, but then I find out another baby has died or been diagnosed and I know I can't do that again. It would kill me to go though it again. Adoption seems confusing, but Jason isn't on board with that option anyway. So I guess we are cat parents for now. What comes next is unclear.

It was very strange at the cemetery the other day. The man who set Eli's headstone was super nice. His 9 year-old son's birthday was that day. We talked about his two boys....while he was putting the headstone on our son's grave we talked about his two very alive sons. It was strange. Afterwards we had dinner with family and were surrounded by pregnant people and kids. Does life ever quit being cruel to babylost parents?

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.