Friday, February 27, 2009

Baby Eli Day: March 7th


I was looking at the ants in my yard yesterday and seeing the huge mounds they manage to create by working together. Why can't we do that too?

On March 7th, please consider making a small donation to SMA research by sacrificing something in your life that day. Maybe instead of grabbing a coffee at Starbucks, you brew it at home and send the $5; or maybe you and your family stay home for dinner and donate the $50 you would have spent. It could even be something as small as not picking up that pack of gum at the checkout counter and donating that $1 you would have spent. Many people doing small things can make a difference!

Please consider doing this for Eli and all the other kids who are no longer with us because the research has not been funded enough to find a cure.

Thank you.
Rita & Jason

Here is the link of different ways to donate:
http://www.fightsma.org/index.php?make_a_contribution

If you would like to make a contribution by check, please make it payable to "FightSMA" and mail it to: FightSMA, 1807 Libbie Avenue,Suite 104, Richmond, Virginia 23226.
On a separate sheet of paper, please include:
Your Full Name
Mailing Address
Email Address
Phone Number
How you learned about FightSMA
If the gift is in honor or memory of anyone and if so, the contact information of the person who should be notified of the gift

Another option is a donation the wonderful organization set up by my new friend Laurie who also lost her little man to SMA. She has been such a help for me during all of this, so I would love for some of the donations to go to Marshall's Miles.

http://www.marshallpotter.com/donations.php

Marshall's Miles
c/o Southbridge Savings Bank
82 Worcester Road
Webster, MA 01570

Please pass this on to as many people as you can... Send it to your friends on FB, put up a flyer, or just send an email. This is so important to me and I appreciate anyone willing to help out.

You can also go sign the petition to cure SMA if you just want to do something simple...
http://www.petitiontocuresma.com/

Spinal Muscular Atrophy is an inherited genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves.
SMA is the #1 genetic killer of children under the age of 2.
SMA is estimated to occur in nearly 1 out of every 6,000 births.
The gene mutation that causes SMA is carried by 1 in every 40 people or nearly 7.5 million Americans.
There is currently no treatment and no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS)have selected SMA as the disease closest to treatment of more than 600 neurological disorders.
Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.

http://www.facebook.com/event.php?eid=75496011507

Thursday, February 26, 2009

The Club

The Club
by Karen Grover
Feb 1989

In January, 1987, my husband and I became members of a very exclusive club. We had been only vaguely aware of its existence, and we thought that surely a chapter in a city the size of ours wouldn't have many members.

We had seen a few people who belonged to the club, but we didn't seem to have anything in common with them, so we didn't really get to know them. Occasionally, we read stories in the newspaper about new members being initiated into the club, but it didn't seem likely that we would ever be eligible to join, so we paid no attention.

The price of membership is so dear that we couldn't imagine being a part of the club. We must have realized in the backs of our minds that people didn't choose to join and pay the dues--it was done for them somehow. In fact, no one really has any idea of how members are selected. There are a lot of theories; but much of the time, the theories come from non-members who don't understand much about the situation.

The "club" we are now in (although it is not an organized group), is known as "bereaved parents." The cost of our membership was the life of our son; and we, like all other members, have no idea why we were selected for membership.

No one wants to be in this club. Even now, months afterward, inside our hearts and minds we continue to fight membership, but there is no resigning from it. It is an automatic lifetime membership. There was no way to avoid it--we did the best we could to keep our son safe. For fourteen years, we guided him through dangers, only to have him die in a seemingly minor auto accident. Though we lay awake night after night, and think of it day after day, there is no answer as to why we have been thrust into this select group. We hate it and we cry out in protest, but there is no way to change it.

We have learned a lot since our membership began. We now understand much about the other members. In fact, we seek to be with them, to have regular get-togethers, to discuss our membership, and try to understand its value.

Sometimes, those outside the club are afraid of us, fearing that if they come near us or talk with us, they will be selected to become members too! Acquaintances often try to ignore the membership, pretending that it doesn't exist. They seem to think that will make things easier, and then the members won't feel "different," but it really only makes things much worse.

So many times, I have wanted someone to say hello or to tell me she has been thinking of me or to mention something about the absent child who still lives inside me and overshadows all my thoughts. I have heard people say, "I don't want to upset her, or remind her of her son, or say something that will make her cry."

I want to tell them: "The only way you can make me feel worse than I already do is to pretend that it doesn't exist or that it isn't as deep and painful as you surely know it is.

Have you ever experienced the feeling of having one terrible incident go through your mind, day after day, week after week, month after month, wondering why it happened and how you could have prevented it? Well, don't worry about reminding me of my son. I am thinking about him nearly twenty-four hours a day.

"Sure, sometimes my mind is temporarily distracted--it would have to be to function at all. But if you think there is even one day that goes by without my child's death tearing up my heart, then you have no idea what this club is all about."

I appreciate your talking about my child, or at least letting me talk about him. He was a very large part of my life, and ignoring him now will really hurt me. It makes me think that you feel he's no longer important because he's gone. It hurts to think that people don't want to think about him or remember good things about him, just because he has died.

"I understand that you don't want to say anything that will make me cry. That sounds kind, and I used to feel that way too, but now I know better. I'd rather the tears didn't come when you talk to me because I know they may scare you away, or at least make you very uncomfortable. But I've learned how useful and necessary they are. If I go too long without tears, my body builds up a terrible pressure from the pain of the grief. If you will allow me to cry in your presence, perhaps I won't have to cry alone, wondering if anyone else remembers, or even cares, about my loss.

"You can't know what will make me cry--sometimes I don't know, myself. Some days I stay dry-eyed through nearly everything. Other days, the slightest thing will start the tears--things you could not possibly imagine or anticipate. Not all the tears are tears of sorrow. Even in the midst of my anguish, I sometimes cry tears of joy and relief because you have reached out; because you have confirmed that my son was special; perhaps because you have shared with me some precious memory about him which I had not known before.

"Please don't run away from me. Don't pretend his death never occurred, or even worse, that he never lived! I still love him, think of him, need to remember. Please share with me and we will both feel better.

"I am learning that God is not punishing me. He did not cause the death of my son. But, He can help me to grow through this experience--to become stronger and wiser and more caring, if I have some help. Initially, when I was told by a church member that I would change and grow stronger through this experience, I wanted to scream that if it meant giving up my son, I didn't want to change or get stronger. But I know I have no choice about that now--he is gone. Now my choices are to either let God, and friends, help me to become better; or I can choose to allow this grief to destroy me.

"I have to experience the grief. I can't pretend it doesn't hurt, or hurry it along. That's what membership in this club is teaching me. I am choosing to allow God to take an unspeakable experience and use it to start life again...in a new and better way.
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I found this on one of the grief websites I visit and it really touched my heart. It says what I'm feeling better than I can...

Donations Update

I've turned the extra space in the dining room into a storage area for all the groups we are collecting items for right now. I got a good deal on these bins and it makes it so much easier to keep everything seperated and organized. The bin on the left is the food pantry bin. I still need to go through my pantry and finish filling it up so I can take it to HAAM next week. The bin on the right is the Ronald McDonald House donations. My awesome friends Heather and Adam brought 3 or 4 bags of goodies to help fill up this bin. I will be taking it when I go up there on Saturday.
The bin on the left here is the women's shelter bin. I've managed to find some great deals on shampoo and toothpaste, so this bin is filling up a little faster than I figured it would. I still have a few items in the closet to add in before I go donate it all next week. The bin on the right is the stash we have to send to our soldier. I'll start getting another package together soon and hopefully find some Easter items to include in there too.
Things are going great with all of this and I hope we can keep it up for a while. I'm getting better at find deals and using coupons, so I am able to get quite a bit of stuff for my chosen charities. I'm going to do a challenge in March for each of them... I will be spending $20 for each group, getting as much as I can for that amount. I get a lot of stuff free or really discounted, so it will be fun to see how much I end up with!
Every day I get an email that alerts me to any news or blog posts about SMA... Today I got one that made me cry and broke my heart even more. It was so hard to lose Eli, but this family lost a set of twins one day apart. I can't imagine having to feel the pain I'm feeling times two. My heart breaks for them so much. I wish I knew something that would make it easier, but I know nothing can.

It is so strange how nobody has even heard of SMA until someone they know has a child diagnosed with it. It doesn't seem to be a "rare" disorder at all. I meet new people online almost every day now who have either lost a child, had a child diagnosed, or have a milder form themselves. It is so sad that a disease that can kill our children before they even get that first birthday cake to play in is so unknown.

If you haven't signed the petition yet, please do so. You are already online...just go do it. PLEASE.

Wednesday, February 25, 2009

Soldier's Angels Update

I mailed this card to him on Saturday... It was from our cats. They all "signed" it and wrote a nice message introducing themselves. They even included a picture so he could see who they were. :o)
We managed to get all of this stuff in a large flat rate box and it is now on it's way to him. I hope he enjoys all that we sent him. I still have a bin full of other stuff to send and I'm looking forward to making up the next box.
We had to go buy a new lawn mower today. Our old one broke on Monday so we picked out a new one today. It has bigger wheels on the back than our old one did, so I hope it will be a little easier to push through the crazy Texas grass. We also went to Hobby Lobby and picked out quite a few silk flowers. I'm going to make 6 arrangements to go out on the cemetery. I hope they turn out okay! We picked out some beautiful red roses for Eli... I will probably go and buy a red rose bush to plant here at home for him too. I wanted to do it every year on his birthday, but I don't think August is the best time to plant those so we will do it near our anniversary instead.
We started trying to get back into eating healthy and exercising, so I'll be updating some of those efforts soon.
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I totally forgot to mention the paint we got today! I get my craft room back now that we got the new washer/dryer and put the litter boxes in the laundry room. I went to pick out paint colors and picked up a few of those little cards... I looked at the names on one of my favorites and the one I liked was called Guardian Angel! We now have a gallon of it waiting to go on the walls of my room. I thought that was kind of special...

Tuesday, February 24, 2009

I'll Lend You a Child

I'll Lend You A Child
author unknown

"I'll lend you for a little time a child of mine,"
He said. For you to love - while he lives
And mourn for when he's dead.
It may be six or seven years
Or twenty-two or three,
But will you, till I call him back,
Take care or him for Me?

He'll bring his smiles to gladden you,
And should this stay be brief
You'll have his lovely memories
as solace for your grief.

I cannot promise he will stay,
Since all from earth return,
But there are lessons taught down there
I want this child to learn.

I've looked this world over
In search for teachers true,
And from the throngs that crowd
Life's lanes, I have selected you.
Now will you give him all your love,
Nor count the labor vain,
Nor hate Me when I come to call to
Take him back again?"

I fancied that I heard them say,
"Dear Lord, Thy will be done,
For all the joy Thy child shall bring,

The risk of grief we'll run.
We'll shelter him with tenderness,
We'll love him while we may,
And for the happiness we've known
Forever grateful stay.
But should the angels call for him
Much sooner than we've planned,
We'll brave the bitter grief that come
And try to understand."
I must say that my faith has not always been strong, but losing Eli has taken it all away. I know there are many of you still praying for us and while I thank you, I am a little doubtful of it's power since it failed to save my little boy. I hope these feelings will go away soon, but I know I'm not the first or last person to be mad at God.

Monday, February 23, 2009

Starbucks and donating!

To all of our local friends...
I went to the Starbucks inside the West Lake Houston Kroger and they are currently taking donations for muscular dystrophy. If you donate, you get a cute clover to write on and a 1.00 coupon for Borden milk. I donated $5 because that's what cash I had with me and the cashier told me I get a free coffee for that donation! SMA is included in the muscular dystrophy category, so hopefully those donations will help some other kids like Eli.

So...go donate and get your free coffee!!! I let the baristas know why I was donating and the lady behind me heard my story and she donated and put Eli's name on her clover. I was really touched by that; it is nice to see the good in others.

April 3rd: Relay for Life

I know some of you read Crista's blog and know about the Relay for Life that is coming up. I decided to go walk with them and I know we all still need sponsors. If anyone would like to sponsor me or anyone else on our team, please let me know. It's for a good cause! I am going to try to make up a basket for a raffle, so if you would be interested in that let me know too!

Projects and Donations

The crabs have been ordered! I was able to get 200 of them thanks to all of you who have donated money to help us with this project. I think there will still be some money coming in, so we will probably just go buy more from a local store and take them with the ones we are getting from the company. I'll update the final total when we take them up to the hospital. I hope they ship them in time for them to arrive by March 5th. We meet with Dr. Northrup, the geneticist, that day so I'd like to just take care of everything in one trip. We are getting quite a pile of things to take to Ronald McDonald House too! I'll post a picture of that before we take it up to the House next week.

My projects are all going well. We are almost finished with the first round of the crab project. I have sent 2 letters to our soldier so far and will be mailing out the first package to him tomorrow. My box for the food pantry is almost full so I will be delivering that soon. I also found a local women's shelter to donate the extra diapers and formula we have, as well as items I pick up free or cheap with my coupons. I have a bag with medicines, make-up, and assorted toiletries to include with the baby supplies.

I'm happy to be doing all of these things, but they still don't dull most of the pain we are feeling right now. I just hope we can keep up our good deeds....it does help me get out of bed, so I am thankful for that if nothing else.

Thanks again for all of the support! We love helping others and I love getting some new people involved!

Sunday, February 22, 2009

Bad Cat?

One of the last really amazing days I had with Eli we sat by the Christmas tree and talked and played for a long time. I was not able to upload the best video because it is too long, but this one was pretty cute too. I miss him so much; I'm glad we bought a video camera so we can see still and hear him.

Saturday, February 21, 2009


I’ll always see your face,
The corner of your smile,
And all the little things that no one will ever know.
Like it was yesterday, won’t ever fade away,
Goodbye is just a word that I will never say.

You will never be forgotten.
A million days could pass us by,
But what is time but just a dream?
Oh, I still feel you here with me.
You’re more than just a memory.
Oh, you will never be forgotten.

I can‘t hold your hand
Or look into your eyes,
And when I talk to you,
It just echoes in my mind;
But If hearts are made of dust
And if we fell from the stars,
I would look up tonight
and know just where you are.

You will never be forgotten.
A million days could pass us by,
But what is time but just a dream?
Oh I still feel you here with me.
You’re more than just a memory.
Oh, you will never be forgotten.

And the world just keeps on going;
It has no way of knowing
That you’re gone.

You will never be forgotten.
A million days could pass us by,
But what is time but just a dream?
Oh, I still feel you here with me.
You’re more than just a memory.
Oh, you will never be forgotten.

by: Jessica Andrews

Thursday, February 19, 2009

I think the hardest part now is trying to maintain functionality. I feel like someone ripped my heart out, stabbed it, stomped it, and then put it back in and expected it to function the same. That just doesn't happen... I try to make myself get out of the house everyday, but for the past few days when I did, it was SOOO hard. I had to call Jason yesterday in the middle of Kroger to help me not have a complete breakdown. There was a beautiful little girl there with amazing curly hair...she was so upset and crying. Her parents totally ignored her, then mocked her. I was shaking because I was so upset. I finally went to a different aisle and was on the verge of sitting in the middle of it and crying. Luckily Jason's calming abilities work via phone so he talked me through it and I was okay. Tonight I went to Wal-Mart and walked around crying for about 2 hours. I went by the little boy department and they had the most adorable baseball pjs and they trigged a flood of tears that just wouldn't go away.

I don't know how to live in the "normal" world right now. I can't remember anything, I can't sleep. Nothing seems to be working right. I try to keep up the facade of being okay when we are around other people because I know everyone worries about us, but my ability to maintain it for long periods of time is declining rapidly. I miss Eli so much; I am so angry that I don't get to see him grow up. I always wonder what he would be doing right now. Not having him with us is absolute hell on earth.

Crab Fund Donations

We have had a few people ask about sending money for the crabs...

You can just mail checks to our house so we know what money goes to the crab fund. Just please put a note on there that it is for crabs. We are trying to make sure what money we get goes to the place the sender wishes to donate to, so the memo line comes in handy for that.
Our address is
18131 Pagemill Point Ln
Humble, TX 77346

To those who donated to the memorial fund... We are not able to find out who sent money as they set it up to be anonymous, so if you did send money, Thank You. I don't know how else to thank those of you who did, but please know that we appreciate it so much. The hospital bills are slowly starting to trickle in so that money will be used to help out with those.
I recently found a few other websites that have information on other children who have been diagnosed with SMA. One that really made me sad was a musician who had a son diagnosed and they were having trouble with all the medical bills that come along with the diagnosis. Here is some information about him, as well as a link to purchase the CD he made to raise money.

It is really amazing at the number of families out there who have been affected by SMA. It is very surprising how little is known about it and how most of us have never heard of it until it hits home. I hope those of us who blog can continue to spread the awareness and let others know of this horrible disease that steals away our children.

Again, if you haven't signed the petition, PLEASE do.