~ Blessings ~
Standing by the door,
a mother and her friend.
Tears in my eyes~
this pain will never end.
A perfect healthy baby,
sitting in the cart.
Smiles & fun for everyone~
for me~ a broken heart.
I watched the happy mom,
as she proudly showed her friend,
her baby had a tooth~
...I had flowers in my hand.
She continued with her shopping,
her baby at her side.
I had to leave the store~
the tears I couldn't hide.
I quickly drove away,
...the flowers in my hand.
This broken heart will never mend~
I'll never understand.
A mom~ with her baby,
holds such blessings from above.
A smile, a cry, a tooth~
a baby she can love.
I hope she understands,
the blessings Our Lord gave.
...I have these flowers~
and a tiny little grave.

© Sharon Kivisto 1997

I've definitely been feeling this pain lately each and every time I go to the store. Finding this poem made me realize that I'm not the only one to experience it.

I made a memorial page for Eli... Please drop by and write a tribute or light a candle for him.
http://eli-beasley-wright.gonetoosoon.org/

One model of the stages of grief shows them as Denial, Anger, Bargaining, Depression, and Acceptance. I know I have been through at least four of them; sometimes all four in a matter of minutes, other times weeks. I think anger is the most difficult one to overcome and I find myself there so much of the time. I have been struggling a lot this past week and I think much of that is anger. Why Me? I wish someone could answer that question for me. It would make all of this a bit easier to deal with. I would love to know what horrible thing I did in my life that would warrant losing my child. I gave to my food pantry each chance I had, bought Christmas gifts for nursing home patients and always made sure we picked as many angels off the Christmas tree as we could afford so kids could have presents and not be disappointed on the most commercialized holiday we have. I made holiday dinners and invited friends, family, and anyone else who needed a place to go. I still try to give back as much as I can despite the fact that my heart is broken and I'd rather curl up and hate the world.

Why Jason? Nobody has been put through as much pain and loss as my husband. Eli was his chance of having a new family, someone to love, someone who didn't leave him. He had already lost a brother, both parents, grandparents, and a best friend. Why Eli too? How much loss can one person be expected to endure in their lifetime? I think he has had more than enough. I honestly don't know how he even gets up every day and functions.

I would rather be in any other stage. This one is hell. It is hard to be mad at the world and question why something so terrible had to happen to us. There are never any answers. Who knows why? Certainly not me or anyone I've met. I just get up and hope it be another day, another stage. I'm not sure how long it takes to make your way to acceptance, but it sure doesn't even seem on the horizon for me.

Pardon any grammer/spelling mistakes. I'm back to the sleepless nights phase so I'm up when I should be sleeping...again.

Bedding....take 2

The last bedding set I bought at J.C. Penny online arrived and did not look remotely like the picture online. Jason and I went to Bed Bath & Beyond today to look for a new set and we found this one. It came with everything in the picture, including valances for the windows! I don't have to worry about matching up anything. I'm going to put it on the bed tonight and see if I like it in my room.

Cemetery Flowers

flowers I made for Jason's brother, Shawn
Jason's grandparents
My little creation for Eli
flowers for Jason's mom, Pam
flowers for Jason's dad, Greg
I have had a rough weekend and Jason realized I needed to go out to the cemetery. He helped me finish up the flowers I was making to take out there for all his family and we headed that way this evening. It was so peaceful and calm out there. Eli's wind chimes are still beautiful and played some music for us while we were there. On our way back to the truck, I snapped a picture of this beautiful flowering tree that was in the cemetery.

I hope the flowers look okay. I'm definitely no expert at flower arranging, but it seems nice to make them myself to take out there. My next project is to make a few extras to take with us on our next trip. There were a lot of graves out there that had nothing beautiful on them. I can't afford to do all of them, but maybe a few at a time. It makes me sad to see them neglected and bare.

Happy Memories

I love my husband and I think he is one of the best out there. I look back and think how blessed I am that he wanted to marry ME. I never realized what unconditional love was until he taught me. He is so patient and loving, through both the good and bad times. I'm thankful that I get to go to bed and wake up with him every day. Love you my sweets.

Memories....

That has to be the grumpiest family EVER. I'm not sure why we were all so mad, but wow! LOL It is a good source of laughs now, so I guess we got over whatever it was!

Support a fellow mom dealing with SMA

Do me a favor... If you have a young girl in your life who loves wearing bows, please consider buying one from Gina at Larkie Lu Bows. I found her website today and I hope I can send some support her way. Her daughter has both Down Syndrome and SMA and she makes the bows her help support her family; she also donates 10% of her sales to FSMA for research.

Blogging is one way to raise awareness of SMA and to support those who try to help fight against it. I feel it's important to pass along websites like these to help out parents who have kids with this horrible disease.

It's always the little things...

One of my favorite holidays is Easter. I LOVE making Easter baskets. Last year when I thought about how I would be spending my next Easter, I pictured myself buying lots of little toys and cute things for my little guy. I never thought they would not go into a basket, but on a grave instead. I cried walking through all the Easter aisles at Target today. I found some baseballs eggs that I might glue on sticks and put out for him. I wish I could plant daffodils out there, but they ask that all flowers be in a vase on the headstone.

I was looking forward to seeing all the holidays through a child's eyes. Now I just seem them through the eyes of a broken mom. Some days all of this still doesn't seem real. It's like a nightmare that never ends.

I never thought I'd miss stinky baby feet. or smelly baby hands. or getting up several times a night. I do though. We both do. I miss the early morning stretch he would do as soon as we broke the swaddle. I miss the big smiles we would get when it was diaper change time. He loved the changing table and always gave us these huge, happy smiles. That made diaper changing not so big of a deal. How could we hate doing it when we were rewarded with such a happy little man? I miss holding and rocking him to sleep at night. I think I even miss all the things we never even got to do.

Leaving a mom or dad with empty arms is such a cruel thing to do. SMA is such an evil disease. If you haven't signed the petition, please do it. Do it for those parents who still have HOPE that they might to see their little one grow up.

Miss you little guy....

....so much more than anyone knows.

Frustration

I love talk radio, but I was so frustrated with one of the hosts that was on earlier today here in Houston. I am a very conservative Republican. I believe I have high moral standards and try to do as much good in the world as I can. I am NOT a Christian. At this point in my life, I even question the existence of a higher power. The host today repeatedly talked about how you must be a Christian to be moral. That is not true. There are many good conservative people out there who are not Christians; there are also many Christians out there who do not have very high moral standards. The two are not mutually exclusive.

I'm just so sick of all the judgement in the the world. If you are a religious person, aren't you supposed to love your fellow man, not judge him? Why do you think people are turning away from religion? It is because they see you judging something they did, but then turning around and doing something equally as bad? Maybe if you would stop lashing out in hate against these so-called sinners, those "bad" people would be more willing to hear your message. Remember the GOLDEN RULE? Isn't that the key to Christianity? I don't see many people practicing that these days, that's for sure. I will have to say that one of my greatest friends here in Houston IS an example of what I think a true Christian person should be like. I have never met anyone as giving and caring, who tries to live like Jesus, and I hope others get to know and love her as much as I have over the years. I just hope she isn't too sad when reading my post today. If there were more Christians like her in this world, everyone would probably attend church!

I really think people practicing random acts of kindness or following a pay-it-forward type of system could bring major improvements in our country. We have lost our love for our fellow Americans. We step over the downtrodden instead of leaning down to pick them up; we walk around oblivious to anyone in need around us. Wake up, open your eyes, and maybe look for one person you can help today. Sometimes it doesn't take much to make someone have a better day; or go for big and try to change a life.

Okay...that's my rant for the day. The call-in show ended before I could call and argue, so I have to blog away my frustration. I'll probably regret this post in the morning, as I usually do when I get on my soapbox, but for now, there it is.

Two Months...

The 2nd and 14th of every month will be hard for me...probably for the rest of my life. It is always a day to reflect on the death of Eli and how things have changed since he left us. I still find things that we bought for him every week. I keep thinking I have put it all in his room, but then I start cleaning and find something else. Last week it was his medicine and bottle cleaner, this week it was the baby food making kit I had bought. I still cry when I walk by the baby department the stores. I hate getting emails to tell him how old he should be. I hate thinking about what could have been...

It is amazing how much he changed our lives in the short time he was here. It was much too short of a time though.

The Story of Us

Today is our 5 year anniversary. It has been a very rough 5 years, filled with lots of joy and sadness, but we have made it through. I don't think many of you know the story of Jason and I, so I thought it would be a nice day to share it.

Back in college (late 90s), I finally got my own apartment! I was very excited to move out of the dorms, but at night, it did get a bit lonely. I had saved up enough money (working almost full-time and going to school) to buy a cheap computer, so I got one and finally had the Internet at home. I love games, especially card games, so I quickly found my way to Yahoo Games. I had learned how to play Spades at a summer program I had attended, so I played a lot of that. I don't know if you all are familiar with that, but you basically go into a room and play with other people online. It can be frustrating because you can end up with a bad partner or people who leave in the middle of a game. One night Jason ended up being my partner. We played very well together and had a nice time chatting while we were playing. We agreed to meet up and play together again. We did that for a while, then moved on to staying up all night just chatting on ICQ (an old instant messaging program). I don't know how many times I went to class with little or no sleep after staying up all night talking with him.

We sent gifts and cards back and forth from Texas to Kentucky for a while, but we would lose touch and then reconnect quite a bit as we both moved around, changed schools, jobs, etc. We still managed to keep in touch, but it did get spotty at times. I remember one Valentine's Day I came home to find the most beautiful flower arrangement on my doorstep. I had always hated that holiday, but that was one of the best holidays. He knew I loved purple, so the vase was purple. He had also sent me some chocolates in a beautiful Disney Mickey Mouse gift basket (I LOVED Mickey).

Anyway.... I moved to West Virginia for graduate school and we still kept in touch a little when we could. When I couldn't reach him, I'd call and talk to his wonderful Nana. She eventually persuaded him to fly up to meet me. This was probably in 2001 maybe? I am bad with dates right now. My friends Brandi and Dustin went to the airport with me to get him. I think we were so comfortable with each other from the beginning. I know I had already fallen for him way before then and I think he felt the same way. We had a great visit and he continued to come visit me when he could. I even came down to Texas to spend a Thanksgiving and meet his family.

When it was time for me to graduate, I looked for jobs in Texas. He was in school and couldn't move, so I was going to make the big jump and be the one to move. I got a job offer in Houston, took it, and he came up with his cousin and moved my stuff down a few days after graduation. We found a tiny apartment and the rest is history! I never planned on getting married; I thought I was destined to be the crazy cat lady. It took an amazing man to change my mind. I have never met anyone I feel so comfortable around, that I smile just thinking about, that can comfort me with just a few words. He is the best man and husband I know. I love him more and more each year. Happy Anniversary Sweetie!

Since being married Jason has lost both of his parents, I lost my papaw, and we lost Eli. It has been a tough road, but we are surviving it all together.

A few updates....

If you look at the picture above, you'll see a gold crown with Eli's name on it. It was purchased by a lovely lady named Pam who found my blog from a post I made on a scrapbook message board. She has been in contact with me several times and is such a sweetheart. She is saving pop tabs for us to help with our support of Ronald McDonald House. I have never met her, but she was touched enough by Eli's story to get involved. That is the kind of effort it will take to not only make the world a better place, but to fight against the horrible disease that is taking our innocent babies away from us. She shared a quote from Mother Teresa in her last email to me, and it is very fitting with what we are all doing... "We cannot all do great things, but we can do small things with great love."

Along those same lines, the crabs arrived today! I left a message for the Director of Child Life at the hospital and I hope we can work with him to take those up next week! Thanks again to EVERYONE who donated to help this happen. It means a lot to share Eli's favorite toy with other babies! (and as much as Bandit is annoying me lately, we will keep him here at home I guess.) :o

Sometimes I wonder if we did the right thing. Other times I know we did. Then I wonder if it would have even mattered. I know it wouldn't. Eli had many signs of SMA from birth, but of course we didn't know. By the time we did, it was pretty much too late. The DNA testing didn't even come back until after it was too late.

The last week of his life was not good for him. He was unable to stay off the oxygen towards the end, but even on the highest setting, it wasn't enough. We would have been in the hospital for a long time, which he hated. It didn't seem like most of the doctors had any clear ideas on what to do with an SMA baby. I never really thought they had it together enough to trust them to treat my son. He hated the sight of white coats and scrubs. I know we did the right thing. I only start to doubt myself on the days I long to hold him so much that I lose my ability to think straight. I know each of us has to decide what we think is best for our children and we did.

It was all so fast and furious; I never even got to fully comprehend what we were dealing with until a month or so AFTER he was gone. We did make the choice to work with Hospice, but were only under their care for 4 hours. My big plan was to bring Eli home so we could go enjoy the days he had left. I never knew it was going to be hours, not days. I thought I would have more time to investigate clinical trials or other options. When we woke up that day, I didn't know it would be THE day.

Even now it is all too much to take in. I look at his pictures from Christmas and he looks so beautiful and HEALTHY. How did it all go so bad so fast?

I miss you so much little man. It breaks my heart that you aren't here...that I have to watch your daddy cry when he watches our home videos of you and him. It wasn't supposed to be like this. It just wasn't supposed to be like this at all.

I'm sick! There is not much going on here at the moment besides that. We are having family night on Wednesday night; I am going to try to duplicate a dish that was made for us by a friend in January. I am still very thankful to our friends down here in Texas who made sure we were fed during those crazy weeks after we lost Eli.

I sometimes think back to all the people who came by the funeral home to show us support. It was astounding how many of you were there. I knew we were were loved by many people, but that was beyond my expectations. The food, cards, calls, all that you did was so helpful and I am still thankful to everyone who took a minute out of their day to think of us.

I love my guys.

Today I changed my music. Jason is such an amazing husband. This week he has went out of his way to make my week better and make me laugh. I am so blessed to have him and I dedicate today to both my boys.

Don't forget today is Baby Eli Day!

Ways to Help

Many of you have went and signed the petition to cure SMA. If you want to do something else, please check out Victoria's post on other things can you do. If you have a place you can post a flyer, please consider doing that. (you can download it on #2 of her list) I almost hate the days that the number of signatures goes up a lot; it usually means another child has died. Let's work together to get the number up without another child having to die to do it.

I think the most difficult part of SMA is the helplessness that comes along with it. We all know that research is needed...and funding is needed to make the research happen. Unfortunately, most of us don't have millions of dollars tucked away that we can pull out and donate. It hurts to know that something as simple as money might the the big obstacle standing in the way of a cure. Money... so unimportant to those who have been diagnosed or lost kids, but so important to helping wipe out this horrible killer. I cry on the days I see people wasting millions on houses, cars, etc. It breaks my heart that those who could make a difference are not interested. It hasn't affected them, so there is no reason for them to care.

The "good" thing is that most of us SMA moms are very determined... Even though it hurts us to talk about and go through SMA every day, we do it. We do it in hopes that the awareness will help others, that the word with get out to people that DO care and maybe the funding will increase. If we give up our hope and hide from SMA, who will spread the word and raise money? Nobody. So we go on and work against it, fighting through our pain and sorrow, in hopes that we can make a difference. In hopes that we can stop other moms from having to feel the same pain we feel. Right now, hope is all we do have....

Today has been an odd day full of odd people. We had to be at the clinic to see our geneticist at 9 this morning. It was nice to see her again, but it was a sad visit. We did get Eli's test results back and of course he had no copies of the SMN1 gene and only 2 copies of SMN2. I think that is pretty typical for babies who die so young from SMA. They wanted us to do carrier testing on us just to make sure we were both carriers; it is possible that Eli might have had a mutation that caused one chromosome to be bad, but that only happens in about 2% of cases, so it is unlikely. Dr Northrup did say she could try push for our insurance company covering PGD/IVF if we chose that route. In the end, it would be cheaper for them to spend $25,000 to help us have a non-affected baby, rather than take a chance on spending another $150,000 on a baby affected with SMA. I doubt we would take any chances having another baby without some assurance that he/she wouldn't have SMA, so PGD/IVF is the option we would most likely choose. It is all too much to really think about right now, but it is good to get some ideas and get paperwork started so we can do it if we get to a point where we think we can. I figured we would be thinking about a brother/sister for Eli at this point, but not in this kind of situation. He should have been here with us.

I think people are really starting to pick up on the fake happiness we are projecting. The genetic counselor kept talking to us today until she finally broke my guard down. I hate crying in front of people so that wasn't fun for me. It is easier for most people to think we are okay; crying is hard for them to deal with. I know a few people have mentioned my avoidance of everything, how I'm using all my projects to block out my grief. I know that's what I'm doing, but I'm not strong enough to cope with too much right now so it works for me. I do take a day here and there to cry and lay in bed, but I can't do it every day or I'll just stop getting up. I don't know if I will be able to take a class and show up every day, but I have to try something... Anything is better than staying home crying all day.

Musings...

Well, I took the first step... I went to the teacher certification information session last night. I have the application and all the information now. I'm a little afraid to go back to school, but I want to be one of those people who loves their job. I think I would like to teach. I would want to teach K-4, nothing above that, so I have a few regular college classes I would need to go back and take (getting out of taking history wasn't such a good idea now...). I think I might take one class to see if I can do this. I need to find something fulfilling to do with my life and maybe this is finally it.

I had a little better day yesterday. The weekend and Monday were some of the worst I've had. It is hard for me to really accept that he's gone. No more laughs, no more smiles. I go in his room and everything is still there, ready for him to come back...but he's not. I keep wondering what he'd be doing now, if he would have learned more sounds, if he'd have a new favorite toy.

I've made some amazing friends through all of this, so that helps. The SMA community is larger than I'd like for it to be, but there are so many nice people involved in it. At times I want to run away from it and pretend I'm not a part of it, that it didn't happen to my son, but I stay. I stay and try to help out if I can. I have a few projects going on to try to raise money to help with the research. These little things are all I can do to fight against my son's killer. I thank all of my friends and family who are standing strong with me in this fight. If more and more of us spread awareness and help raise money, maybe we can beat this thing.

Cooking for a Cure

I now have the cookbook kit and have the software ready to go. If you want to include your favorite recipes, email them to me! I would love to include everyone who has touched us during our time of tragedy.

If you would like to be on the cookbook committee, please let me know.

I hope everyone will participate by contributing a recipe and buying a book once we get them printed!

Hey Baby Boy...

I got several emails reminding me that you would be 7 months old today. You know your crazy momma had signed up for every kind of newsletter and baby information website she could find... I wanted to make sure I knew what to expect and what to do. In the past they served as reminders of how behind you were in movement; now they serve as a reminder that you're not here. It takes so long to make all the emails and magazines stop coming and each one that comes makes me a littler sadder.

You were a cute baby but I was waiting patiently on the days you were old enough to do crafts and make cookies. I had already started collecting cookie cutters for us; that's how much I was looking forward to doing that with you. I had so many plans and it is HARD to give them up. We never even got a chance to get started. SMA robbed us both of so much. I hate it. I hate it with all my heart. Daddy and I decided to buy a lottery ticket tomorrow night; I promise you that if we win, we will give as much as we can to stop other familes from going through this. I hate to know that there are other moms going through this same hell. I hate not being able to help them; I already know there's nothing to say or do that will make this any easier.

Just know that we will never forget you; you took a huge chunk of our hearts with you, but you still have a big place there. I'll always love you and always wonder what might have been...

xoxoxo
Mom

Eli's Tribute Video

I hope this link will work... My very good friend Davian made us an amazing video using our pictures and home videos of Eli. I am so grateful to have it; it helps so much on those days we feel like we are starting to forget him a little.

(if the link doesn't work, go to Google Video and search for Just Eli. You should be able to find it that way) If it appears blurry, click on the Google video button in the bottom right hand corner and set to original size!

New Bedding!

I finally broke down and bought some bedding for our room. I can't wait for it to get here. I am trying to do a little more work on decorating the house. Too many of the rooms still have the builder's paint color and no curtains.

RMH

Yesterday I went with Crista to the Ronald McDonald House; she was interviewing to volunteer. I was so glad we took a tour of the stand-alone house down in the Medical Center; it is a truly amazing place. It made me feel great that we were able to use our tragedy to help them; THANK all of YOU for being willing to donate to them in honor of Eli. They have a huge kitchen that each family can use to prepare meals, a play area both inside and outside, laundry facilities, an awesome game/movie room for older kids, and a classroom for those kids who need to keep up with their education. While we were there, a church group came in and made breakfast for all the families and some of the families were shuttled to the rodeo to get a break away. It was nice to see people bringing in donations and willing to give up their time to help out these families in need. It gave me back a little faith in humanity.

Crista and I have decided that instead of just getting together for dinner, we will do a family night and go make ice cream sundaes with the families down there. We will need friends to come help out too, so be on the lookout for that so you can swing by and scoop some ice cream! We did pick up some little houses to put the soda pull tabs in, so please let one of us know if you need one to put around your work or house to save them for us.

On a different note, overall, yesterday was a bad day for me. It was an angry day and for me, those are the hardest. I hate being around people and just want to break things. Jason and I talked a minute last night about getting a punching bag and I believe that's a great idea (help me watch for a good deal on one). I think that's the hard part of SMA; there is nothing you can be really be mad at or physically fight against... I guess the next best thing is something to hit. Sad, huh?