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.
--------------------------------------------------------------

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.
-------------------------------------------------------
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?

video

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.

Wednesday, February 18, 2009

Great News!

I just talked to the director of the Child Life group at the hospital... He was very nice and is going to work with me in getting the crabs to the infants in the hospital. He is going to work on designing a card to put on them so that Eli will be recognized. I am so happy! I will be putting the order for them in next week and I'm hoping we can get up to 200 of them! He seemed pleased that I called to thank them for all that they did for us while we were there. We always forget to thank people for the little things they do to make our lives better... Please thank someone today. We are all quick to point out mistakes or bad service, but today, focus on the good! Smile!

Cooking for a Cure

Do you like that title? I have been working on a cookbook for years now and have never gotten motivated enough to actually finish it. I am thinking about doing it as a fundraiser for SMA research... What do you think? I'd appreciate some input on this one, especially from people who have done these type of fundraisers before. Also, I need recipes!! You can email your favorites: kyann22 @ yahoo.com (I put spaces in there to try to keep the spam messages down).

It will be a LONG process, so we'll see what happens. I'll probably use an online program to put it all together, so I need to see if I can let others have access.... I might need some typing help!

Stem Cell Research

For most of my life I was against most types of stem cell research. After going through the loss of my baby boy, I am starting to rethink that. It is a tricky ethical issue that will be much debated in the next few years. Some parents have decided to go around the current ban in our country and travel to get help for their children. Jason found this article last night and I looked over it this morning. It makes me sad that those parents tried to help their child through any means possible and ended up hurting him instead. I have a few regrets about how we handled things with Eli, but I know it's just my grief working on me. I wouldn't have wanted him to suffer any longer than he did; its just hard to know he's gone.

I just hope someone will care enough to fund the research. Our government wastes so much money on issues that are not nearly as important as dying children. If you haven't already, please sign the petition on the sidebar of this page. You can also call your representatives, senators, or just pray that we can one day have a way to help our kids. Nobody should have to feel the pain we are in right now. It is almost too much for anyone to bear.

Tuesday, February 17, 2009

An Angels Kiss

We go through life so often
Not stopping to enjoy the day,
And we take each one for granted
As we travel on our way.

We never stop to measure
Anything we just might miss,
But if the wind should blow by softly
You'll feel an ANGELS KISS.

A kiss that is sent from Heaven
A kiss from up above,
A kiss that is very special
From someone that you love.

For in your pain and sorrow
An ANGELS KISS will help you through,
This kiss is very private
For it is meant for only you.

So when your hearts are heavy
And filled with tears and pain,
And no one can console you
Remember once again.....

About the ones you grieve for
Because you sadly miss
And the gentle breeze you took for granted
Was just......... "AN ANGELS KISS"
By Peggie Bouse
I changed on mind on stopping my money saving blog, but I want to go a different direction with it.... watch for changes! :)
http://wrightwaytosave.blogspot.com/

Ready to Make Care Packages!

Jason and I went shopping for our soldier yesterday and we will be putting together our first care package today! I'm so excited about it. We bought enough stuff to make packages for the first 3 months or so; I'll just pick up some odds and ends as I find them on my shopping trips. I'll post a picture of our first one before I tape it up. I can't wait to pick out items from this stash! We got a little info when we signed up; he had requested coffee, a mug, baby wipes, western novels, DVDs, and candy. I think we covered all that and much much more! I need to sit down and make a card to send this week too.

Monday, February 16, 2009

Sometimes you just gotta treat yourselves....

OUR NEW LG WASHER

AND DRYER!

...and today we did! We usually take our tax return and buy something we've been wanting/needing but didn't want to go in debt for. This year we chose these and I am so excited. It will be nice to have more energy efficient appliances, but it will also free up a room in our house! The cats and their litter boxes took over my craft room when we made the nursery for Eli, so I haven't really had a place to work on my cards and scrapbooks. We are going to have the washer/dryer stacked, so the litter boxes will fit in the laundry room. I have wanted this for so long; it was the one thing that made me decide go to ahead with the purchase. It will be so nice to have all four bedrooms litter box free for a change.



Mommy I am in Heaven so please don't shed your tears
I can see you and I love you and I will through all the years
I know you are my mother and none other would I have chose
For even up here in Heaven true love continues to grow.

Daddy I see that sometimes when you are all alone
your eyes get kind of misty and your thoughts they kind of roam
You are thinking of how things would be if I was there with you
all the things you would have taught me and watched me as I grew.

But I still love you my dear parents as if I was there on earth
I remember how you longed for me and looked forward to my birth.
There was nothing you did wrong so please put your minds at rest,
God just wanted to keep me and you know He picks the best.

And one day we will all be together in our castle in the sky
true peace and love and happiness, things money cannot buy
And you can hold your angel and sing me a lullaby
for a parent's love for their children is a love that will never die.

Sunday, February 15, 2009

What Makes A Mother?

I thought of you and closed my eyes
And prayed to God today.
I asked what makes a mother;
And I know I heard him say:

A mother has a baby
This we know is true.
But God, can you be a mother
When your baby's not with you?

Yes, you can, He replied
With confidence in His voice.
I give many women babies;
When they leave is not their choice.

Some I send for a lifetime
And others for a day.
And some I send to feel your womb;
But there's no need to stay.

I just don't understand this, God
I want my baby here!
He took a breath and cleared His throat,
And then I saw a tear.

I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say...

"We go to earth to learn our lessons
Of love and life and fear
My Mommy loved me oh so much,
I got to come straight here.

"I feel so lucky to have a Mom
Who had so much love for me;
I learned my lesson very quickly,
My Mommy set me free.

"I miss my Mommy oh so much
But visit her each day.
When she goes to sleep,
On her pillow there I lay.

"I stroke her hair and kiss her cheek
And whisper in her ear;
"Mommy don't be sad today,
I'm your baby and I'm here."

So you see, my dear sweet one,
Your children are okay.
Your babies are here in My home,
And this is where they'll stay.

They'll wait for you, with Me
Until your lesson there is through,
And on the day that you come home
They'll be at the gates for you.

So now you see what makes a mother;
It's the feeling in your heart.
It's the love you had so much of
Right from the very start.

Though some on earth may not realize,
Until their time is done.
Remember all the love you have
And know that you are a SPECIAL MOM!

~Anonymous

Saturday, February 14, 2009

Randomness

This was my amazing Valentine's Day gift! Jason supports my Vera Bradley addiction, so he got me this new one which is both Vera AND purple!
Since it has been a month, I wanted to do something to make me feel a bit better and remember Eli at the same time. My favorite time of year is when the daffodils start blooming and I decided to plant some in our yard. Now when they come up every year, I can think about my little boy and smile.


We hear so much about the negative things the Internet can bring into our lives, but it can also bring some positive things. I have reconnected with one of my cousins on Facebook and got this awesome package of goodies in the mail from her this week. Thanks Kelly! Love ya!


One Month...

I'm not sure how to feel today. It is Valentine's Day, which should be a good, but it will also be a month since Eli left us. I can't believe it's been that long, but at the same time it feels like years already. I think each day seems longer than before, harder to enjoy. The past three days have been the worst I've had so far. I can't sleep, get up crying, and can't seem to be very productive when I am up. I am trying harder than I had been though. I had already checked out and wasn't doing much at all, but I know that only makes it worse, so I'm trying. I have been working on my chosen projects and trying to be a better wife. I don't want to hurt Jason and cause a rift between us, so I have to attempt to have a life. I think it is just surviving right now, but at least we can do that together.
__________________________________________________
Baby boy...

Daddy and I miss you more and more every single day. I have been clinging to your bear and blanket as I try to fall asleep at night. I wish with all my heart it could be you that I'm holding, but that can't happen now. It gets harder and harder to accept that you are really gone. I go into your room and all the things we so carefully picked out are still there... I found your Christmas vest on the dryer.... Your Bumbo is still in the corner of the living room. Everything is still here, just not you.

I got Daddy and I tickets to the Astros opening game. I cried and debated on it a long time, but Daddy wanted us to go. I already cry my eyes out thinking about it, but I'll go and think of you while I'm there. I had begged that you hang on long enough to go with me, but I am glad you didn't suffer to do that. It is hard to know you won't be there with me, but I know you'll be watching it with Grandpa Greg and Uncle Shawn.

I hope you like the wind chimes, red bird, and flowers we brought you last weekend. We all love and miss you so much.

Friday, February 13, 2009

Opening Day

I tried to buy tickets yesterday but of course most of the seats were up wayyy too high. I decided to wait until today to see if they would release some better seats. I checked a few minutes ago but still got the same type. I decided to try one more time and BAM! We got club seats in section 207! Those seats are so nice and I've only sat there one other time (when the tickets were free). I am so excited; I think Eli managed to free those up for us because there was nothing even close to that good available the many times I've checked. We will be attending, taking the crab with us. :o)

Coupon Class

Hey everyone...
I know the economy is getting pretty rough and several people have asked about saving money, so I am thinking about doing a little workshop type thing here at home one day. It could be on a Thursday or Friday night, or a Saturday morning. Would anyone be interested? I wouldn't charge for it, just ask that everyone bring an item for the Ronald McDonald House, the food pantry, or our soldier. You could also put a donation in the fund to buy Melissa and Doug crabs if you didn't want to go shopping for something.

If you are interested, leave me a comment, call me, or just send me an email. Let me know what day would be best for you too.


Did you sign yet?

The Petition to Cure SMA is almost at the original goal of 50,000 signatures.... If you haven't signed yet, please do, and then pass it on to everyone you know. There are millions of people in this country; surely none of them would want a young baby to die from a disease we may be able to cure if we just fund the research!

If you are new to my blog, here is some information about SMA....

Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.

WHO IS AFFECTED
SMA is one of the most prevalent genetic disorders.
One in every 6,000 babies is born with SMA.
SMA can strike anyone of any age, race or gender.
One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.
7.5 million Americans are carriers.


THE TYPES OF SMA
SMA Patients are classified into four types based on milestones achieved at onset of SMA. Type I and II are the most prevalent.

Type I, or Werdnig-Hoffmann Disease, is the most severe form of SMA. Type I SMA strikes infants between birth and six months old. Children affected with Type I cannot sit without support.

Type II affects infants between seven and 18 months old. Type II patients may be able to sit unaided or even stand with support. They are at increased risk for complications from respiratory infections.

Type III, also known as Kugelberg-Welander Disease, is the least deadly form of childhood-onset SMA. It strikes children as early as the age of 18 months, but can surface as late as adolescence. Type III patients are able to walk, but weakness is prevalent. Most patients eventually need to use a wheelchair.

Type IV is the adult form of the disease. Symptoms tend to begin after age 35.

SMA does not affect sensation and intellectual activity in patients. It commonly is observed that patients with SMA are unusually bright and sociable.

Thursday, February 12, 2009

Opening Day

Today is going to be a very difficult day for me.... Astros single game tickets go on presale in less than an hour.... I have debated about going to opening day, but Jason thinks we should. I cried last night just thinking about it and told him I would probably cry the whole game. Sharing my love of baseball was one thing I was looking forward to when we had Eli. I knew it would take some time for him to appreciate it, but I was willing to wait. For those of you who don't know, we did the nursery in Astros/baseball. When we found out he was sick, I begged him to please stay with us long enough to go to opening day. I just wanted one game... I'm already crying trying to write this, so forgive any mistakes... Its just a sad day for me. I'm not sure watching baseball will ever be the same for me.

Wednesday, February 11, 2009

Soldier's Angels

I found a really awesome website last night where we adopted a soldier. We will send him a card a week and a care package every few weeks. I'm excited about doing this and I made this card for him last night. We are doing to put the care package together and have a "shopping night" where we go out and get all the items for it. I hope it will help us bond and do something good at the same time. We adopted an Army Sargent and I hope he enjoys what we send him.

Tuesday, February 10, 2009

Donations, Donations, Donations!

I have been working on getting some donations going to take to the hospital, Ronald McDonald House, and our local food pantry. I managed to get in touch with the company who makes the crabs and they are going to make an exception for me and sell them to me at the same price they give retailers. I just have to let them know how many we want to order. If anyone else would like to purchase some for the hospital, let me know. They will be $4 each. I'm not sure how many we are going to get, but I want to get as many as we can since this will be my one opportunity to get them from the company. The lady I've been talking to there is SO nice and wanted to know all about Eli and what we were planning on doing with the ones we bought.

For Ronald McDonald House, I have started filling up a bag of their wanted items and saving the pull tabs from my soda cans. If you are coming by the house, feel free to bring an item from the list and I'll pass it on when I take mine there. If you are local and see us on a fairly regular basis, consider saving your soda can pull tabs and encourage those you work with, family, whoever to do the same. They recycle them to raise money for the House, so I'll be making a jar to save those and donate. Again, I'll be glad to add yours in and take them with mine.

Finally, we have a box here for food for the Humble Area Assistance Ministries. It is a rough time for many families and the food pantries really need donations. If you have any dry goods or canned items you can donate, bring them by when you stop in and visit!

I think doing some good deeds and helping others will help strengthen my spirit and help me cope with all the emotions and hurt I'm going through right now. I appreciate any help anyone offers to do these along with me. For those of you who do crafts, I want to put together a night to make cards for our troops overseas, so let me know if you would be interested in doing that and we can get a night set up.

Monday, February 9, 2009

Monday Musings

My Mom Is A Survivor
My Mom is a survivor, or so I've heard it said.
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach that never wash away...
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others...a smile of disguise.
But through Heaven's door I see tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.
But anyone who knows her knows it is her way to survive.
As I watch over my surviving mom...through Heaven's open door.
I try to tell her that angels protect me forever more.
But I know that doesn't help her or ease the burden she bears.
So if you get a chance, go visit her...And show her that you care.
For no matter what she says...no matter what she feels.
My surviving mom has a broken heart that time won't ever heal~!
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Another mom who had lost her little boy posted this on a website today. Her baby boy would have been 6 today so she was very sad. I think this poem probably sums up the way we feel when we lose our littles ones too soon.
I love you Eli.

Sunday, February 8, 2009

The Cemetery

This is the 100 year old Concord Baptist Church that is beside the cemetery.
The peaceful cemetery....
This picture came out blurry, but it is Eli's grave. We added some fresh flowers today, a red bird that Aunt Crista got him, and some lovely wind chimes that Aunt Mandy got for him. It was nice and peaceful out there today but the mosquitoes were horrible. That seems strange for Texas in February.... We left some flowers and birds for Jason's parents, grandparents, and brother too. I hope to find some Easter daffodils in the stores soon so we can take those out there. They are my favorite flower; they are blooming down here a little early this year. Colby and Mandy have some beautiful ones around a tree at their house. I need to plant some here at my house so I can enjoy them when I go in and out of the house.
Things have been pretty rough for me and Jason over the past few days. We have both been really down and not wanting to be near many people. We may go see the counselor from Hospice soon to try and get some ideas on how to go on with our lives. We have an appointment with the genetic counselor on March 5th to find out more information about Eli's SMA. We also need to have the funeral home rework the headstone to make it more like what we now want. Once we get Eli's ordered and paid for, we plan on saving up to get his parents one too. It has been several years now and it makes me sad to see their bare graves.
To our friends and family....bear with us......we need a little time to ourselves right now. Don't be upset if we don't call or make plans to visit. We just need a little space some days. Other days are good, but please understand that the bad ones are bad enough that we need some time alone...

Saturday, February 7, 2009

I still can't believe you are gone my little man. I miss you more and more every day. You were such a special baby. You took a big chunk of my heart with you when you left me that night. Most days I don't feel like I can go on without you, but I do. I have to be here for your daddy. We both miss you more than you know.

I <3 Vintage Stuff!

I had a nice morning out with my good friend/sister-by-choice Fran. We went to some of the local resale shops and browsed and then had a great breakfast at Humble City Cafe. I love vintage items and would have a house full of them if Jason didn't think they were old and ugly. I did buy this awesome cake keeper today though. I have wanted one for a long time and I finally found a complete one. It needs to be cleaned up, but I'm so excited about it. I love making Bundt cakes so this is perfect for me! It brought a smile to my face, so if nothing else, it was worth getting for that reason. If anyone has a good method/cleaner for aluminum, let me know! I don't want to mess up my amazing find! (I am in love with this cake pan too, so maybe I can get it and make it to put in my new holder)

Friday, February 6, 2009

Wishing and Hoping...

I wish it was my 4 year anniversary again so I could possibly ask for another appliance. I got my much longed for Kitchen-Aid mixer last year. I am a coffee nut these days and I want this Keurig coffeemaker so bad! I just keep hoping to run across a great deal one of these days.... If you see it cheap, LET ME KNOW!!

Ronald Donald House donations

I'm trying to work on collecting items to donate to Ronald McDonald House. If you are interested in helping out, watch for sales and pick up some of the following:
Batteries
Laundry Detergent (liquid)
Xerox Paper
Scotch Tape
Postage Stamps
Disposable Gloves
Ice Tea Makers
Paper Products - towels, napkins, plates, cups, utensils
Travel Size Toiletries- shampoo, conditioner, toothpaste, toothbrushes, razors, shaving cream, deodorant
Fruit - Fresh or individual servings
Popcorn (bag)
Pudding - Individual servings
Ramen noodles
Tuna/Salmon - Individual servings
Breakfast Items - Danishes, muffins, POP Tarts, granola/breakfast bars, oatmeal (individual wrapped)
Snacks - cheese/peanut butter crackers, cookies (individually wrapped)
Baking Mixes (cookies, muffins, brownies, cakes)
Gift Cards - H-E-B, Kroger, Target, Wal-Mart

SMA Testing

Press Release Jan 26, 2009
Athena Diagnostics Offers Genetic Test for Diagnosing Spinal Muscular Atrophy

SMA Now Second Leading Cause of Infant Death

WORCESTER, Mass. (January 26, 2009) — Athena Diagnostics, part of Thermo Fisher Scientific, offers a comprehensive test to identify carriers and diagnose prenatal cases of spinal muscular atrophy (SMA), a disease that causes the degeneration of lower motor neurons and is the second leading cause of death among infants. With this advanced testing and diagnostic capability, physicians can screen couples who are planning to start a family, or who are already pregnant, for mutation in the recessive SMN1 gene, a genetic variation that will ultimately determine if their infant will be born with SMA.

SMA ranks as the second most prevalent hereditary disease in the world, after cystic fibrosis, and the American College of Medical Genetics (ACMG) recommends that all couples should be offered testing for SMA mutations before starting a family. Currently, one in about every 50 adults, or approximately 7.5 million people, is a carrier of SMN1 abnormal mutations, and, as a result, one in 6,000 infants are born with the genetic disease every year.

Basic carrier and prenatal testing only allow physicians to screen for the presence of an abnormal SMN1 gene. Athena Diagnostics offers comprehensive SMA testing that enables physicians to
take patients through the initial carrier testing, which screens for the presence of SMN1mutations and SMN2 gene copy number count. This insight into the development and copy number of an SMN2 gene in the infant allows physicians to predict the progression of the disease and create a treatment plan before the infant is even born. “Infants who are tested for the SMN2 copy number present in their genetic makeup will allow physicians to be more knowledgeable about the prognosis of the disease,” said Dr. Thomas Prior, PhD, Ohio State University. “In the future, this may allow physicians time to develop a personalized patient plan and start implementing a preliminary treatment strategy. Early diagnosis is so critical, and the Athena Diagnostics test gives doctors that precious extra time to understand the early stages of a disease that affects more families than most Americans realize."

"My husband and I lost our daughter, Claire, to SMA at the age of nine months,” said Deborah Heine, executive director of the Claire Altman Heine Foundation, a nonprofit organization dedicated to the implementation of pan-ethnic SMA carrier screening. “We were never offered the SMA carrier screen despite the fact that a test has existed since 1997. No one should have to discover their carrier status by having their child diagnosed with this devastating disease. It is our desire that all individuals of childbearing age should be offered SMA carrier screening so that they can make informed reproductive decisions."

To learn more about the Athena Diagnostics SMA test, please visit:
www.athenadiagnostics.com/sma

For our more science-minded friends, here are a couple of other articles if you are interested:
The Genetics of SMA
Carrier Screening for SMA

Thursday, February 5, 2009

I miss you so much precious boy. The days just aren't the same without you. I don't really know what to do with my time... I would give anything and everything to have you back. You changed my life in so many ways that I never realized until you were gone. I'm glad you aren't here suffering but I wish we had been able to have a little more time with you. I didn't get all the smiles I needed in those 5 short months. I love you. I miss you.

Wednesday, February 4, 2009

Zoo Pics

Not the best picture, but we could only see him behind the glass. He was 110lbs and 5'10" when he was born 4 days ago!
One of my favorite parts of the zoo! They are usually in the water but I guess it was too cold for that yesterday.

We stayed and watched the leopard for quite a while yesterday. What an amazing animal!

One of the tigers was actually out! I love the big cats but they are usually hiding when we go.

Sleepy Elephants!

Here are a few of the other giraffes. They are so beautiful.
I could watch the meerkats all day.

Wednesday Rambling...

Today is kind of a blah day. I've been pretty lazy and not doing too much besides laundry and working on my coupons. Jason had to go to a meeting this morning at work and I wanted to get up and go, but I was just too tired to get up at 5. He's napping now so I guess he really was too. He was kind enough to bring me home coffee and breakfast from Starbucks, so that was a very nice surprise. We are going to go out to dinner together tonight. We have been struggling trying to find things to do together and figuring out what our lives should be now, but we are working on it....

Yesterday was a day filled with mixed emotions. I could have stayed in bed all day. Jason finally managed to get me up and we went to the Houston Zoo. I cried on the way there and a few times while we were walking around. It was the first place I wanted to take Eli when he got out of the hospital so I was sad to go there without him. It wasn't very crowded, but it seemed like everyone who was there had kids and strollers with them. I was upset to see so many kids running around looking at the animals while their parents lagged behind talking on their cell phones. What a wasted opportunity.... A new giraffe was the highlight of the trip; he was born on Friday and was just 4 days old. What a treat to get to see that!

We went to our friends to visit and have dinner after the zoo and it was such a nice evening. I love hanging out with other couples and don't do it nearly enough. They have two beautiful children and it was so great to be surrounded by all the love in their home. They are some of the most caring people I know so it is such a blessing to be able to call them our friends. We watched the movie Fireproof while we were there and I'm still thinking and processing it, so I'm sure I'll have a blog post on it soon.

Tuesday, February 3, 2009

Soapbox...

A few things have been bothering me lately, so I am going to jump on my soapbox and get them off my chest. Growing up we were always able to find TV shows to watch as a family. Saturday mornings were full of "nice" cartoons and weekday prime time had plenty of family shows such as Who's the Boss, Growing Pains, etc. While TV is not the best way to interact with your children, it can be a nice downtime before bed. We always watched sporting events and award shows together too, including the Super Bowl. Athletes used to be heroes, ones that we could be proud of....

I would have been so upset to have children watching the Super Bowl this year. First, the players did not represent good role models for any kids. There was too many unsportsmanlike plays and fights. After seeing that, we were then subjected to some of the worst commercials that were in no way appropriate for kids of any age. Godaddy.com has had ads for the past few years and none of them are even relevant to a company that sells domain names. This year things went even further here in Texas; we actually saw an ad promoting ashleymadison.com. For those of you not familiar with this website, it is a website for married people to find someone to have an affair with. So they air this but refuse to air a pro life ad...

While I realize morals and values are almost non-existent in our country these days, I always have hopes that that might change. Many people blame it on the religious right, but I do not put myself in that group and I think I have a pretty darn good set of values.

If you do have kids, skip a few of those extracurricular activities; the most important thing you can do for them is sit down and have dinner with them and discuss the day's happenings. One more soccer game is not going to make that much of a difference, but listening and talking...those are priceless. Watch what your kids are doing, watching, seeing. Most TV shows are so out of touch now days and the Internet can be both good and bad. You have to be the one setting the boundaries and protecting your kids. Don't let technology raise your kids; that's why we are raising a generation of selfish, rude kids who end up having babies in middle school.

I do know that there are more good people out there than I realized. While going through all that we have been through over the past month, I have felt so loved and supported. I had given up on most of the world, thinking nobody cared about anyone else anymore. I was wrong. There are still many of you out there and I thank you. Please pass this caring attitude on to your kids. Let them see you giving and loving; get them to help you out now so they develop a kind, loving spirit. Thank all of you who have reached out to us. I hope I haven't offended anyone, but things are just getting so out of hand in this country and I fear that it will only get worse from here....

Monday, February 2, 2009

6 months...

My Dearest Eli,

Today would have been your half birthday. I can't believe we didn't even get to have you with us for six months. I feel so cheated and your dad and I miss you so very much. I never realized how you had taken over every aspect of our lives in such a short time. Most days we aren't sure what do without you here to keep us busy. We can't seem to find things to fill our days and end up sad and missing you.

I miss so many of the little things... I miss how you woke up a little grumpy but quickly turned into such a morning baby. My favorite part of the day was putting you on the changing table and unswaddling you...you always streeeeeeetched those arms out, ready to start your day. I LOVED that and it always made me smile. I miss the smiles you gave us when we would have to change your diaper. If nothing else, we knew we would get some smiles during that time. You had the most beautiful smile; it would light up your whole face and shine through your eyes. I miss getting up and seeing you with your arm out of the swaddle, all upset and not sure what was going on. I wish more than anything I could hear you talk and laugh again; I would even settle for a cry.

I miss watching you and daddy play together. You made me fall more in love with your daddy. He was such an amazing father. I couldn't wait for him to get home and play with you so I could hear you giggle. You always saved those giggles for him. It breaks me heart to see daddy missing you so much. He sure did love you little man.

Even though we have been struggling, I will keep my promise to you. It is just a little tough getting used to life without you. You were such a special baby and you left a huge void in our lives and hearts. Momma still has you close in her heart and I love you so much.

Sunday, February 1, 2009

Superbowl Sunday

The last few days have been pretty hard for us, but we are trying to cope as best we can. We have friends and family coming over to watch the game with us today. Jason and I both love making snacks so we should have some good food too. I hope everyone enjoys the game. Eli loved football so we will be watching it in honor of him.

Update:
We were cheering for the Cardinals...as was everyone here. I didn't really have a love of either team, but picked them because my baby boy loved red. :) For those of you who didn't get to meet Eli, I thought I'd share a cute story with you.

One Sunday evening Jason and I were watching football and Eli was just hanging out in his bouncy seat. We started to notice that he would cry when the game went to commercial, but would quit when it came back on. He loved football. We really figured this out a few Sundays later. People were over trying to talk and play with him and he would cry if they blocked the TV. He wanted to watch the game! He was our little sports buddy already. We told him we would have a Super Bowl party, so we did... I hope he was here in spirit to enjoy it with us.