Friday, July 31, 2009
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?????
Thursday, July 30, 2009
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.
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 firstname.lastname@example.org 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.
Tuesday, July 28, 2009
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.
Saturday, July 25, 2009
Love you my little Eli.
Friday, July 24, 2009
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.
Wednesday, July 22, 2009
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.
Monday, July 20, 2009
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.
Saturday, July 18, 2009
Friday, July 17, 2009
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.
Thursday, July 16, 2009
Tuesday, July 14, 2009
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?
Monday, July 13, 2009
Sunday, July 12, 2009
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.
Saturday, July 11, 2009
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!
Thursday, July 9, 2009
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.
Wednesday, July 8, 2009
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.
Saturday, August 1, 2009
9:00am - 12:00pm
12303 Sonnier Street
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.
Tuesday, July 7, 2009
Friday, July 3, 2009
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.
Thursday, July 2, 2009
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,
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?