Saturday, January 31, 2009

Petition!

If you haven't signed the petition to cure SMA, please do so. We need our government officials to start spending our tax money on things that REALLY matter! It is such a waste that so much is spent on elections, celebrations, kickbacks to family and big business. Our kids are dying from something that could be cured if enough money was directed towards research. I'll keep posting this because it is very important to my family. Let's help Bill and Victoria get the 100,000 signatures!

Friday, January 30, 2009

such a lonely place

Our house is lonely, I'm lonely. Jason went back to work yesterday. It is hard to be here without Eli. I'm staying in bed as late as I can so I don't have to look around the empty house. He was usually napping this time of morning after we had been up playing a little. We just miss him more and more every day. It was so hard to see Jason come home from work last night; I knew it would hit him hard and it did. He loved coming home and getting that beautiful smile. It made any bad days at work better. Things are just not the same...

I didn't sleep well last night. I kept waking up thinking about Baby Grace. For those of you not from our area, she was a beautiful 2 year old girl who was beaten and tortured by her mom and step-dad and then thrown into a bay in Galveston. The mom is currently on trial and it is constantly on the news. It just breaks my heart every time I see her picture. At one point last night when I was wake, near tears, I thought I heard the baby monitor... I turned it off already though, so of course it wasn't that, but it did sound like the first rustling of Eli waking up. I forgot for a minute that he was gone, but the red light on the monitor served as a quick reminder. Even though we are going through hell right now, I'm happy Eli had a life of love; he was given to a family that was good to him, didn't hurt him, just loved him. I just wish we had had more time.

Thursday, January 29, 2009

Memories

MEMORIES
If we could have a lifetime wish
A dream that would come true,
We'd pray to God with all our hearts
For yesterday and You.
A thousand words can't bring you back
We know because we've tried...
Neither will a thousand tears
We know because we've cried...
You left behind our broken hearts
And happy memories too...
But we never wanted memories
We only wanted You.
(Unknown)
I found this on a grief website I was looking at and it really sums up how we are feeling right now.

PSA: Peanut Butter Recall

I'm getting a little worried about this latest recall. Please be sure to check out the list below. I would recommend throwing out any peanut butter crackers or cookies just to be safe. I need to check our pantry too. (I know it's way off track, but I haven't been paying attention to this so I'm afraid some of our family may have missed it too).

http://www.accessdata.fda.gov/scripts/peanutbutterrecall/index.cfm#All

Thank You

One lesson this whole ordeal is teaching me is to be a receiver. I love giving....it is what makes me the happiest in life. I love doing little things for people I love to see them smile. Jason and I usually buy toys every year for needy kids around the holidays. We participate in holiday food drives. I love all of these. It makes me feel great to give to those in need. Receiving is not on my list of favorite things. I am not big on gifts TO me. Since Eli became sick, everyone has been amazing at helping and giving. A lot of it has been hard for me to accept, but I'm trying. Its not that I don't appreciate it, its just that I don't feel worthy of all the effort/time everyone is putting into helping out. I don't think I've ever done anything bad to deserve what happened to us, but I also don't feel like I deserve all the good that has happened either.

If you are one of the people giving donations, food, thoughts and prayers, thank you.

Wednesday, January 28, 2009

Small Update on Us

Not much new from our house today. We are both a little under the weather. Jason went to the doctor yesterday and is currently on antibiotics. I'm starting to get whatever it is, but feel a little better today than yesterday. Nights are usually my worst time, so that could change at any minute. The weather was beautiful yesterday, high 70s, but changed last night and was down in the 30s. I think we are supposed to have a few more cold days, but we seemed to have avoided the freezing rain that was discussed last night.

I think today is a numb day for us both. Jason will be returning to work tomorrow. I know he dreads it; not the work, but the constant "I'm sorry for your loss". I don't think we know what to say back to that really. I'm glad I can hide in the house for a while so I don't have to face it. I know I hate the sound of the phone ringing now. I usually just let the house phone ring and go to the answering machine. I always lose my cell phone so I never know when it rings anyway. I'm sorry if you are one of the family and friends trying to call. We just need a little space right now...

I don't know what should be normal for our house now. It just seems so lonely and quiet. I hate that. I know we are both struggling with what to do with our time. We end up watching TV or playing on the computer. Nothing productive, nothing together. We have a lot to work on, especially finding activities we can do together. Avoiding each other isn't a good thing; part of it may be that we are both not feeling well. I hope thats it anyway...

Tuesday, January 27, 2009

The Evil that is the Media

Sometimes the timing of things makes me wonder how much hell we are going to be put through in our healing process. One of the big stories around our area right now is a set of parents on trial for beating their 2 year old daughter to death. They torturned her for a whole day... A WHOLE DAY. The mom was pregnant with her 2nd child when she was arrested. Every single time the news has promos or comes on, the story is on there. It's in the papers....it's everywhere. I know it will always be hard to see these kind of stories, or to see parents mistreating their kids around us, but why this trial, why right now? It breaks my heart even more and fuels the anger and unfairness I already feel. It is a shame that such a beautiful little girl was given to such a cruel and heartless woman. I hope her new child will be given to someone who will love and cherish him/her. As for the parents...there is no punishment fitting for what they did... I wish all of us who have lost a small child through no fault of our own could stand before them for days on end telling our stories, letting them know that we would die for what they had...not kill it.

SMA Information

While I'm sure most of you have already done your homework on the disease, I feel the point of this blog, at least for right now, is to raise awareness. I want to share some facts about it so that you are more informed and can talk to others about it. For anyone in our family, you too could possibly be a carrier! We do not know what side of our family this gene is being inherited from, so please think about getting tested.

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.
**this was taken from the FSMA website**

Be sure you go sign the petition to cure SMA! We need to get our government to help fund research for this horrible disease! The petition was started by Bill and Victoria Strong, who have a daughter with Type I. To learn more about Gwendolyn, you can read her story on a blog they keep for her.

Monday, January 26, 2009

Time Heals all Wounds??


We went and looked at the headstones today to see which one we liked. It was hard to decide without seeing it in person, so we brought the drawings home to look over them a bit more. We then went out to the cemetery to see if they had any similar to what we were looking at. There were a few there that we liked, some similiar to what we'd already picked out, so we should be making a decision soon. They will be engraving the crab toy that Eli loved so much on it.... it always made him smile so I can't think of anything better to symbolize his life than that.

The funeral flowers had all died for the most part, so Jason and I cleaned off Eli's grave while we were there. I kept the bows and carnations that were still pretty and made a little bouquet with them. It was so hard to stand there knowing my little boy was deep in the ground, so far away from my arms. I would give my very soul just to hold him one more time, to see that beautiful smile just once. I miss him more and more every day.
We took time to clean off the graves of his grandparents too; we also brought fresh flowers to put in the vases on their headstone. I hope we can take flowers out at least every other weekend. One grave there had a pole with wind chimes hanging on it; I think I will do this for Eli too. I have always loved wind chimes; my grandparents always had them on their porch and I have some on mine right now. I just have to find one that is worthy of my little guy; he will then have music to listen to on those cold windy days.
The past 2 or 3 days have been tough. I could easily have stayed in bed and ignored the rest of the world. Jason has pulled me off the couch a few times already. I'm not sure why its getting harder to deal with, but it is.... I thought time was going to help us heal, but it seems to be making me hurt.
I think I am now entering the silent part of grieving. I don't really have much to say lately; the tears are still flowing but the words are not. Sometimes the silence in our house is deafening...the TV is almost always on to disguise the lack of baby cries and coos.

We miss you so much little man.

We will be going to the funeral home to look at the work-ups of the headstones today. I guess that is the last thing we get to do for Eli.

Sunday, January 25, 2009

3am, and yes, I am lonely

Most nights I still wake up at 3 am, just from habit I guess. Tonight I couldn't seem to go back to sleep. It has now been a bit over a week and a half since we lost Eli, but it seems like years already. Maybe the lack of truly living makes it seem like so long ago... I know we are just existing right now. Jason didn't leave the house at all yesterday; neither of us showered...we are just here.

I don't know how to go about the process of living again. When is the right time to decide if we want more kids, the method to try to have them, or look into adoption? 3 months from now, a year, never? When can we laugh again and not feel guilty because we aren't crying? When will we go to the store and remember that we don't need anything from the baby aisle? When will people stop calling to make sure we are okay? What kind of life/future do we have now?

I don't think I ever want to put myself into a position to go through this heartbreak again. It hurts too bad. I hope with all my heart that someone can find a way to help or cure children with SMA so that no more parents have to live through this hell.

Saturday, January 24, 2009

Get Up...

Yesterday was a bad day. Not that they all aren't bad, but it was one of the worst so far. I think Jason and I are both really struggling with what we are supposed to be doing... Our whole day was filled with taking care of Eli....now what? We seem to alternate; one day he wants to stay in bed all day, the next I do. That works out okay because the other person can pull the covers back and say GET UP. The days we are both in bed are the rough ones; there is nobody here to make us get up; we can only cling to each other and mourn.

I'm grateful to have such a wonderful husband; I just hope this loss doesn't cause us to lose each other. It is easy to push those that love you away in these times. It happens to many couples. I just know Jason, like Eli, is a big part of me and I can't make it without him. If nothing else is worth crawling out of bed for, he is. I have to remember that and get up. I didn't do that yesterday.

Friday, January 23, 2009

Amendment

Several days, or weeks...I honestly can't keep up with the passing of time right now....I wrote an entry about being uncomfortable with the number of people who have stopped in to read our story. I have now changed my mind; I'm starting to believe that this blog is part of Eli's legacy. It seems that many of you moms now appreciate your own kids more, even during those rough times. Perhaps that will prevent just ONE baby from being shaken in frustration? I would write 24 hours a day if that were the case. Or maybe its just to show you how precious your little one is; that getting up at 2 is not a chore, but a privilege. Maybe will you forget that there are dishes piled up in the sink and spend a few more minutes enjoying your daughter or son's smile. They grow up so fast; don't miss a moment of it. I wish I could go back knowing these things.... You don't know how much I wish that.... each and every moment would be treasured more...but I cannot.

I am at a loss right now; I have no idea where to go in the next 5 minutes, 5 days, 5 years. Breathing....it's a good thing sometimes, but right now it is tough.

Thursday, January 22, 2009

Sadness

video

For 32 years of my life I never wanted kids. I never did the babysitting thing, was never really around babies at all. I would be annoyed at stores and restaurants by the kids running all around being loud. When we found out we were going to be parents, I had mixed feelings. We had discussed having kids, but hadn't really decided that it was something we wanted to do. I knew I could never terminate a life, so we started down the journey...

I spent hours and hours researching... I read so many reviews of baby products that I became an expert of sorts. I only picked out products that I thought were safe. I read up on vaccines and got a little worried, so I made a plan to space them out. I did everything I could do to keep Eli safe...but in the end I was helpless to do so. It hurts to watch your little one suffer from something you can't take away or fix. I cried so many times wishing I could be the one hurting, the one who had to die. I wanted so much for him to grow up. I think he would have done great things in this world. He had so much personality for someone who was so new to this world. I fell in love more and more every single day. I would get cranky when he wouldn't eat or nap, but I gave up being upset and decided that if nothing else worked, we would play. I loved being a mom. It was the greatest job in the whole world.

Now that my job is over, I'm lost. I have no idea what I want to do with my life. I don't know where my focus should be right now. Jason and some friends had mentioned maybe I should look into nursing or teaching, but I'm just not sure. I had so many plans of things to do with my son that I find it impossible to get off that track. I still want to bake cookies, play with clay, and spend the day at the park learning about plants. It is just not right or fair that I don't get to do those things. Not fair at all.

I looked at an adoption website today just because I was a little curious. I found baby after baby with serious issues....issues due to them being shaken. That only helped to fuel my anger at the unfairness of this situation. I would have never hurt Eli. NEVER.

This pain and loss is almost more than I can deal with at times. I hope it will lessen over time, but for now it is only growing stronger. I am so thankful I have a wonderful husband to hold me when I cry; someone who feels the same pain and will stay in bed and be sad with me. We are both so lost and hurt right now; the only thing saving us is each other. I love you, Jason.

Portrait Sessions Available


Rachel of Portrait Playland has been kind enough to make March 7th Baby Eli day. She will be doing sessions in Eli's honor and donating the money to help out with his hospital and funeral expenses. If you are interested in signing up, her contact information is on her website. She did a beautiful session for us right before Eli went back to the hospital the last time. She is a true angel.

Dreaming?

Today has been rough. I have been thinking Eli was just a dream most of the day. I've had to go into his room to see that yes, we did have a baby, there's baby stuff there. I pulled up some of our home videos and sat crying, wishing I could make him laugh and see him smile again. We are both missing him so much today.

True Love

Sleep is eluding me yet again tonight.... I woke up about an hour ago in the middle of a dream. In that dream we were preparing to lose Eli. I am so glad that I woke up; I can't imagine surviving that loss again, even if it was just in a dream. You should only have to say those kind of goodbyes once; it would seem that any more than that would destroy the soul.

Today I realized how special the love between a parent and child really is. I have been honored to hold two other babies over the past few days. It was so nice to cuddle and love on them; they were both quite adorable. However, the emotions I felt while holding them were so pale in comparison to those I had when holding Eli. The contrast knocked me for a loop I guess. I always knew I loved my little man, just not the extent of that love. It is like nothing else in this world. Unless you have held your own child in your arms, you won't know what I'm talking about. That kind of love changes you. I watched myself change so much while Eli was in the hospital. Perceived threats brought out a primitive need to protect, much like that of a mama bear with her cub. I turned into a strong person, one willing to stand up and say No; not just one No, but no time and time again. It would have been a strange sight to many of those who know me; sometimes I did not know myself.

Yesterday was one of the numb days. I didn't cry much, didn't laugh much, was just here, breathing. Some days breathing is a big accomplishment, getting out of bed a chore, showering an impossibility. Each day brings a new set of challenges, new feelings to overcome and work through. A very special friend of mine spent hours upon hours putting together a video for us using our pictures and home videos. We watched it last night and it was beautiful. He managed to capture so many of the fun moments and happy times. It was bittersweet to watch it; we laughed and cried. It will be a special memory we can come back to on those tough days, on days we just need to see his smile, or on those days when we feel like his memory is starting to fade.

One thing the video brought to my attention is how the SMA was apparent even in the early beginning. Of course we had no idea at the time, but I noticed over and over how many signs he had long before we had any idea something might be wrong. Holding and watching other little ones was a shock to me too. I always knew he was way behind in development; I just never realized how far. It makes me sad even now that he was denied movement and strength; that he was never able to do all the things babies do, all because of a loss of a gene in his DNA. I can't even strike out against this killer; it is too microscopic for me to even see; yet so large that it was able to steal away part of my heart and soul, large enough that it robbed me of my son, plus any siblings he may have one day had. How can something so minute take away things so great?

I have lost much of the strength that has carried me through most of this journey. The resolve to do all the great things to keep his memory alive is a little weak right now, but still there waiting to come back out. I need time to grieve, but I can't let myself get stuck there for too long. We received more donation acknowledgements from the Ronald McDonald House yesterday. There was another one in there from someone I didn't know personally. I hope that means that Eli has touched some of you; that his memory and story compelled you to reach out and help those that helped us. Thank you for that. Thank you so much.

Wednesday, January 21, 2009

i turned the baby monitor off this morning. how final that seemed...

Tuesday, January 20, 2009

Jealousy and Anger

Two emotions that are really strong in my life right now...

I'm jealous of those who have healthy kids....kids that will grow up. I am happy for them too, but jealous all the same. Iknow how much joy Eli brought us in such a short time, so I'm glad other people get to experience that. However, I was looking forward to seeing Eli grow up, to see which one of us he was going to look like; to teach him to be a good man like his daddy; to share my love of giving and helping others. I could make a huge list of all that I had hoped and dreamed for my little guy. There's where part of the anger comes in. Why didn't I get to experience all this? Why did my son have to die? I see kids every day in situations where they are neglected or abused. Normal, healthy kids with parents who don't realize what they have been blessed with. That hurts. It makes me mad to see parents being mean or cruel. In the past I bit my tongue and walked away so I wouldn't cause a scene. I don't think I can do that anymore. I'm too angry to sit by and let it happen. The evil Rita from the hospital might emerge to take on yet another bully.

My heart broke even more tonight when I watched Jason play with our niece. He is such a natural with kids. He thinks he's not, but he is. I have never met a man so destined to be a dad. That makes it even harder to accept that we can't have kids together. I told him he could leave and find someone who was not a carrier of SMA, but he wasn't going for that. I just hate to see him not have a child to love. Maybe there is something in our future that will allow us to have a child....I don't know right now. I just know we have a huge empty void in our lives right now. We miss Eli so much. We don't have that beautiful smile to brighten our day so it is gloomy around here.

I'm having issues getting my feelings out tonight so I'll leave it at that until I process all that I have running through my head.

The Silence is Too Loud

For the first time in a while, I don't really have much to say... We went to look at headstones today. They will have quotes for us later this week.

Thank all of you for continuing to call even though we aren't really in the mood to talk. It lets us know you are thinking about us and are there if we need you. Just don't expect any lengthy conversations right now. Thanks to everyone bringing by food. We aren't eating on any regular schedule, but it is good to have something here when we get hungry. I know I wouldn't take time to make a big meal so you are saving us from eating sandwiches and cereal every day.

The comments all of you are leaving help. Whether you know it or not, they do. Thank you for sharing your thoughts with me.

Monday, January 19, 2009

I miss the smiles...


It is hard to believe that these pictures were taken less than two weeks ago. I didn't even realize they were on the camera until I hooked it up to transfer all the pictures onto the computer. I don't understand how he faded so fast. I'm glad he didn't have to suffer any more than he did, but it was just too fast. I begged him to hang in there. I wanted to take him to one Astros game, even if it was only for just one inning. My heart is really broken today, my strength gone. I have been on couch holding his teddy bear tight today, clinging to something that might remind me of him. I don't see how this gets easier. It is getting harder for me as the days pass. I think the shock of it all is starting to wear off and the pain seeping in.

Unfairness

Most nights I was always awake for several minutes before Eli ever made the first cry. I could hear him starting to stir, or maybe it was just a mom thing, but most nights I was up and ready. Many of those nights Jason would be the one to go and comfort him at 3am because I had been up with him several times already, but a lot of them both of us did. There was always a stirring sound, a rustling, that I think woke me up...

For the past two mornings, I've heard that. I know I need to unhook the baby monitor, but it seems so final, even more final than the burial. Jason said he woke up yesterday morning thinking he heard him too. Maybe we are hearing him; maybe he is letting us know that even though we aren't physically able to hold him, he's still here....and will always be.

Today is starting off as one of those bad days for me. I hate the days like this. But for today, it is the unfairness of it all that is on my mind. We would have been good parents, we WERE good parents.

Sunday, January 18, 2009

Strength...

I keep seeing/hearing everyone talking about my strength through all of this... I don't think I'm strong, just in denial. It hasn't become all real. When it does, I will not be strong. I had to turn off so many of my feelings in the hospital in order to fight the battles I fought. I'm having a very difficult time getting them turned back on. There are some days where I don't feel anything. I have no idea how one even begins to cope with this situation. I think blogging gives me an outlet to release a lot of what I feel, what's on my mind. I find it much easier to let it all flow through my fingers onto the keyboard rather than crying. I'm sure we will need counseling at some point, but what can anyone really say or do to help? There are no words or actions that will bring Eli back. None. I could talk all day, cry all night, but the reality of it is, he's gone. My only hope is that I can do something to keep his memory alive, to give back just part of what he gave to us. If it only makes YOU appreciate YOUR children more, give them more kisses and hugs, read a story to them tonight before they fall asleep, then this will not have all been in vain.

Crumbling....


Right now I am feeling like a failure as a wife. Jason is having a bad day. It is so hard to see the man who is always MY rock falling like he is. He was the most amazing daddy. If you were able to witness him and Eli together, you know what I'm talking about. They both would light up when they were together. I went through a rough spell with PPD right after giving birth, so Jason did so much almost by himself for a little while. They definitely had a very special bond that many men never have with their child no matter how much time they have with them. It made me fall more in love with both of them. Jason could make Eli giggle and smile... I couldn't wait for him to get home from work sometimes so that I could hear that little giggle. So many men I know leave the child-raising to the women, but not Jason. He was hands-on from the beginning, like being a daddy was what he was put here to do. I don't know any words that I can say to comfort him, but I know, I understand why he can't get out of bed. There are no words. Nothing can fill the void. Nothing can bring back the giggles and the smiles. It is just easier to avoid and sleep.

Sunday 1/18

I drove to meet my friend for lunch today. When I stopped at the first red light, I automatically looked back to comfort Eli. He loved riding in the truck, but did not like stopping. I guess the habit of comforting has become second nature now.... It's these little things that make this so hard to deal with. If you have kids, you know they take over every part of your life. My eating, showering, living were all dictated by Eli and his current needs. Now that I'm able to do things at will, I find it odd. I remember longing for some free time to make cards or scrapbook. Now that I have it, it doesn't seem that appealing. I would trade all the hours in my day for one minute, just one more minute to hold Eli.

I just can't get over how different our house and our lives seem now. Nothing ever feels complete....we can FEEL that something is missing. His death has created a strange void that I have no idea how to fill. What do we do with all this free time? What do I do with all his things? What do I do with my breaking heart? His favorite toy was a crab that I got over at MGR. He loved it and would smile it at when we played. When we knew he wasn't going to make it, I told him that through the crab, he would always be with us...that daddy and I would take it with us when we did something fun so that we could know he was with us. We plan on having it etched into his headstone if we can. I also want to buy a box of them and take back down to the hospital to give to the infants there. If they brought joy to Eli, hopefully they can do the same for others. I took it with me today when I went to lunch. It may seem like an odd thing to do, but for now, it works.

I wasn't trying to run everyone off with my last post, just trying to share what I was feeling. It does seem a little strange to expose yourself so much to others. From reading all the comments, it seems like it might be helping others become better people, better parents, so please don't leave. If anyone has anything that they would like either Jason or I to write about, feel free to mention it in your comments. I want our experiences to help others as much as they possibly can.

One thing I know came out of this is that it got some couples talking about what happens in case of death. Do you know what your husband or wife would want if they suddenly passed away today? We never know how much time we have been granted here, so don't assume it will be forever. Be sure your family knows your wishes. It is HARD to decide if you don't know. I have been to the funeral home to plan 3 funerals now and it is not a good time to try and make decisions. If you have no idea what the person wants, it's basically a guessing game. Burial or cremation? Open or closed casket? Music? Clothes? Keepsakes? What type of service? Let someone know so that it takes the stress off them if something does happen; it will makes things much easier. That's a morbid talk to have, I know, but I promise it will be helpful if something were to happen to one of you.

I hope Eli's service reflected all the love that surrounded him. Again, thanks to everyone who was kind enough to stand up and talk, or offer hugs, or just be there. I think Jenni did an amazing job; she is such a special person, one that I hope to keep in touch with for a long time.

Late night ramblings....

I'm struggling with the words to write now... When I started my blog it was to keep our distant family informed of what was happening in our lives. Once I found out I was pregnant, I used it to update our progress and our preparations. For the past few weeks, it has been more of a release for me; a way to reflect on the day's happenings, a way to sort through my feelings. I'm not sure what happened, but the number of people reading it has grown so much...it is freaking me out a little. I wasn't able to write yesterday and I'm feeling restrained again today. I would love for some of you that I may have not met personally, or even those that I have, to leave a comment and let me know what you've got out of reading and keeping up with what's going on. Maybe it will help inspire me to get back to reflecting and sharing more... I'll still try tonight because I need to write.

Today was a rough day, but not as bad as I thought. I'm sure people are questioning why we are holding up so well. It's not that we didn't love Eli; it's that it hasn't really sunk in that he's gone. If you come and look around my home, his stuff is still scattered all around. The baby monitor is still hooked up waiting on his cries. I feel like he's with a babysitter and will be back. Things happened too fast. I don't think I have even processed that he might have SMA; I am no where near dealing with the diagnosis and his death. I can feel the emptiness surrounding us; I feel like something is missing, but I still feel like none of this is real. I'm also not a public person, so I try to keep my grief in until I'm alone. I did great last night but at the end, we asked everyone to leave, I closed the doors, and finally broke down. Today I cried during the service, but didn't break down until we were walking towards the truck to leave the cemetery.
The distractions our friends are providing have been good at helping us to avoid a total breakdown, but Monday morning we will wake up to a quiet house and I fear the realization will hit then.

I thank everyone who stood with us over the past few days/weeks. Without you we could not be this strong. I was amazed at the number of people there last night and today. I also thank those of you who wore red and pink today in honor of Eli; I know some of you who weren't able to be here with us did it too and that's awesome!

I also want to thank those of you who have made donations in Eli's name; there were 4 cards in our mail today from the Ronald McDonald House about donations they had received. My friend is really encouraging me to think about starting a non-profit to raise money for SMA research. I'm thinking about it, but right now I don't have the mental capacity to do anything beyond eating and sleeping (and truthfully, I'm not doing those very well either). I know I want to do good deeds to keep Eli's spirit and story alive, but I'm not sure the path I want to take to do that yet.

I am hesitant to post this, but was told I needed to by a friend. I know many of my friends from the MSN August 08 message board and MGR worked hard to set this up, so I do it for them. A memorial fund was started in Eli's name to give people who wanted to send money a way to do it. Jason and I are in no financial trouble that I'm aware of, so I don't want anyone to send money for that reason. I have no idea what our medical bills will end up looking like, but I think we have pretty good insurance to cover most of it. Any money deposited will be used in ways to keep Eli's shining spirit alive for us; we want to help as many other children as we can through both research and support.

Checks made to Elias Beasley-Wright Memorial Fund
Mail to: Amegy Bank NA
P.O. Box 3016
Houston,TX 77253

Saturday, January 17, 2009

It's so hard to say goodbye...





God Saw You Getting Tired

God saw you getting tired
And a cure was not to be
So He put His arms around you
And whispered 'Come with Me.

'With tearful eyes
We watched you suffer
And saw you fade away
Although we loved you dearly
We could not make you stay.

A golden heart stopped beating
Hard working hands at rest
God broke our hearts to prove
He only takes the best.

It's lonesome here without you
We miss you more each day
Life doesn't seem the same
Since you've gone away.

When days are sad and lonely
And everything goes wrong
We seem to hear you whisper
'Cheer up and carry on.'

Each time we see your picture
You seem to smile and say
'Don't cry, I'm in God's keeping
We'll meet again someday.'

Friday, January 16, 2009

We miss you so much baby boy....
















....

We have three poems that we really want to have read during the service tomorrow. If anyone would like to honor Eli by reading one, please comment and let me know. I know I will not be able to do it myself, so I would love for a friend or family member to do this.... We also have room for anyone who would like to speak....just let me know....

Here are our three...
http://www.comfort-for-bereavement.com/death.html
http://www.ealaindraoi.com/grief_poetry_for_loss_of_a_child.html (TINY ANGELS)
http://www.geocities.com/griefweb/cancer_supp/verses_pass/god_saw.html
Just a note to those who will be saying goodbye with us tomorrow... Eli love both red and pink, so if you have a shirt in one of those colors, please wear it. If you have an Astros shirt, you can wear that. It does not have to be a formal day, just one that celebrates a wonderful child who left us too early.

Reflections...





As I lay down last night, I did some talking with Jason, but also some thinking to myself. I noticed a big difference in ways to grieve yesterday. My mom is saddened to a point that I worry about her. She has never seemed to be a very happy person, but it seems like this has really broken her. I was so worried about her on the night Eli left us....almost scared. It has been a struggle to talk her into going back home when my family returns to Kentucky, but I hope she does. I have so much support down here, but she really has none. I want her to be in a place where she has friends to lean on, to hold her close and share her pain. For me, I like to laugh right now when I can. It seems a bit manic at times to laugh, then cry, but laughter is what gets me through most days. I don't think Eli would want us to always be crying; he loved to laugh too, so I'm sure he would rather we laugh rather than cry.

I have always been the most pessimistic person I know. I have a rough time seeing the good in most situations. I'm trying SO hard to let this experience change that part of me. I don't know if that makes sense; how can I take the most terrible experience anyone could ever go through and turn it around? Well, in thinking last night, I figure I have two options... I can be bitter and angry for a long time, lay in bed and cry for all that I have lost... OR, I can try to let Eli's memory live on in a positive way, remember all the smiles and love he brought to me, and try to do good to honor him. I started this by asking for donations instead of flowers. I plan on doing a few things to give back that involves other babies in the hospital we were in... I miss Eli, more than I can even say....but I need to focus on the good moments and go forward from there.

I keep trying to work through what has happened and look for things, reasons why... I may never truly understand and maybe I'm not supposed to, but I like to hope that whatever the reasons were, we did what we were fated to do.

The next two days are going to be pure hell... I already feel so lost when I wake up. I made myself get out of bed today. I made myself eat. I'll keep going because I have things to do, things to honor my boy. He was just such a blessing that touched my life in ways I never thought possible and I hope and pray that I make him proud and help others so that his life and death were not in vain.

Thanks so much to Rachel at Portrait Playland for the amazing photos she took for us last week.... She was yet another special person who was brought into our lives through this tragedy.

Thursday, January 15, 2009

One day down....

There are some many things I thought I'd never do in my lifetime....bury my child would definitely be one of those things. It seemed like the longest ride of my life when we went to finalize things today; my arms were empty and aching, my heart broken. I hope the arrangements we made will honor our son. How sad that we have to make such decisions in the middle of our grief. I'm so happy that our chaplain from the hospital has agreed to do the service for Eli. I feel that someone who shed tears with us is the best person to do that for us and him.

Life has been very hectic for the past few weeks; we have had countless visitors, phone calls, emails... I know this will all end and when it does, we will find ourselves with too much time to think and cry....and remember all that we have lost. I know we are in shock and numb. I do cry but I feel like I must stay strong for now; I prefer to have my breakdowns in private anyway. Jason has very strong, comforting arms and I can't think of a safer place to be when I cry.

Jason said the house was so quiet; too quiet this morning....so quiet you could hear the coffee brewing. Eli had not really been able to cry or "talk" to us for the past week, so we had lost all the noisy joy he brought to our lives. I remember days when I longed for silence....now I yearn for it. I had days where I wanted nothing more than for Eli to stop crying; now that he has I'd give anything to have it back. We never know what little things we'll miss when we lose someone close to us. Everyone has those little things they do that we may not notice until we never see them again. Almost every night we'd wake up to Eli crying; he loved going to bed swaddled but would somehow manage to get one arm out and wake himself up. It brought us many smiles; we almost knew what to expect when we heard the cry. I miss that.

Jason and I went to meet with Eli's pediatrician tonight. He was hesitant to meet with us, not knowing why we wanted to talk to him. I'm sure he expected the worst; blame or anger. We merely wanted to thank him. He always showed so much concern for Eli, but also for me. I remember on the first visit he checked out Eli but before we left, he asked how I was and how I was feeling. I don't blame him for not figuring out what was wrong sooner. I'm glad that he's unfamiliar with SMA; if he knew about it, that would just mean more families would have been through this hell. I hope we conveyed our appreciation and that he went home and hugged his kids tight.

To our friends.....please don't feel like you have to keep your children away from us. We know the joy they bring to your lives and we do not begrudge you for that. I'm glad you've never been through this; I'd hate for anyone I love and care about to EVER have to deal with losing their child. It is like no other pain. Don't hide them from us. Seeing them smile helps us remember all the good times we had with Eli and forget some of the bad.

Sorry this is random tonight; I just had many thoughts today and they didn't want to come together in any form that made sense. My mind is just tired.

I was asked for an organization that helps fight SMA so that donations could be made in honor of Eli... Families of Spinal Muscular Atrophy does a lot to help with research, so if you want to help fight this horrible killer, please consider donating. We would be honored for anything donated in Eli's name, whether it be to SMA research or the Ronald McDonald House.

Arrangements...

I just wanted to let everyone know the arrangements we have made for our angel.

The visitation will be at Pace-Stancil Funeral Home in Dayton, TX tomorrow night at 6pm.

The services will be held there in the chapel at 2pm on Saturday, with burial to follow at Concord Cemetery in Rye, TX. The cemetery is out in the country, next to a 100 year-old church. It is beautiful out there and he will be surrounded by Jason's family that have passed before him.

Our loving and supportive chaplain from the hospital has been kind enough to perform the service. She cried many tears along with us and walked us out as we left the hospital yesterday. I feel very blessed that she will be speaking on behalf of us and our child.

Thanks again to everyone for you continued love and support.

Wednesday, January 14, 2009

Heavy Hearts

I'm sitting here, fighting sleep, trying to figure out what I will do with my empty arms. It seems like we are always holding or patting Eli....what now? I know tonight and tomorrow morning will be hard. I know I will wake up tonight worried that I haven't heard him cry. Tomorrow I will wake up and wonder what I'm supposed to do... Every day for the past few months has started off with a beautiful smile from my baby boy... I won't get that tomorrow or ever again. I don't know what will fill that void in my heart, my soul.

Tonight was hard, but it was peaceful. I held him as he took his last breaths. It was beautiful that he did not have to struggle any at all. I was so dreading the new few weeks....there was so much equipment in our home when we got here, as well as different drugs we could use to keep him comfortable. We did not have to sit and watch him be spaced out on drugs or hooked up all the time to machines. I can't be mad about that. I'm angry that my time with him was so short. I never got to share my love of baseball or animals with him...but I did share my love FOR him with him and in the end, that is all that really matters.

It was hard letting him go when the funeral home came to take him. He had been gone for a few hours at that point, but I never let him go. I knew when he was out of my arms, I'd never hold him again. I took all the time I had to keep him near. Jason was kind enough to get him and hand him over so that he wasn't taken away from me. I know that wasn't easy for him either.

I don't know what the next hour or day holds, but I know it is already so difficult. I have already went and laid down in his room, held his Christmas pjs, and cried. It was the last outfit I can remember him being truly happy and smiling in. There are reminders of him everywhere, but I will slowly move them all into his room until I figure out what to do with them.

I ask that everyone PLEASE honor our wishes and do not send flowers. I hate the smell of flowers during times like these.

Thank you everyone, wherever you may be, for all the love and support.
I just wanted to let everyone who has shown us so much love and support that Eli passed away in my arms tonight at little after 7.

Night Update... 1/14

We made it home....

The hospice nurse just told us things are not looking good right now. He will most likely become an angel tonight. I don't know how prepared we are, but Jason and I took turns rocking him all morning and he's been in grandma's loving arms since we arrived home. If he does leave tonight, he will leave knowing he is loved. He is very peaceful now; not stressed or struggling. I would rather it go this way than have to keep him drugged for weeks and watch him suffer and be in pain. I'm trying to stay strong and not fall apart yet. I have to be able to make decisions right now and I can't do that if I lose it.

For any of our family and friends reading this.... when Eli does leave us, we ask that flowers not be sent. I know the cost of flowers and rather than waste all of that money on something that will die, I am asking everyone to do something that will let Eli live on... We were very blessed at the hospital with the Ronald McDonald House and I know the one here in Houston suffered much damage during Hurricane Ike. We ask that you donate to this wonderful charity in Eli's name so that he can continue to help others and brighten the day of families who are going through similar situations. The website telling about the donations is here. Checks can be mailed to Ronald McDonald House Houston 1907 Holcombe Blvd Houston, TX 77030. They just ask that you put "In Honor" or "In Memory of Elias Beasley-Wright" in the memo line of your check. We would appreciate anyone kind enough to do this for Eli.

The Morning Update-1-14-2009

Well this morning I guess is going to be from the perspective of Jason. Rita is busy holding our little guy in these early hours. He had a pretty rough night last night. He started running a really high fever and his oxygen saturation levels kept dropping. He's on a pretty high rate of oxygen now to keep his levels kinda up. We are taking him home today. I guess that's a good thing in itself even if it's not under the circumstances we would like. There's nothing else the hospital can really do for his breathing issues and we would like to spend time just as a family together with the friends that we have in a comfortable setting. Everything has progressed so rapidly. He has not had the best morning. The child life people came by today and brought soothing music and put some things together so we would have some mementos of our little one. They made a hand mold, hand print and foot print, and took a lock of his hair and put those items in a nice keepsake box for us. The lady was really sweet. She was a little touched because she was actually giving Eli his first haircut. Other than that the ambulance to bring him home is scheduled to pick him up at 2pm.

We are just waiting to be at home and spend our time with our precious gift. It has only been a little short while but Eli has brought more joy to my life than any other thing. You just don't know how much you can really love something sometimes. He has shown me the true love I have for my wife and the more that it grows every day seeing her loving on him. The small things in life are really what's important and are really life itself. If nothing else he has taught me this. I thank all of you that read this and support us and maybe we'll have an update a little later on.

Tuesday, January 13, 2009

The Witching Hours....

This time of night, from about 10pm to 1am, are the absolute worst for me. If I try to sleep I just think about everything and end up crying until I make myself sick. I have found that it is easier to stay awake until I am so tired that I just collapse. I have a few friends who usually help me during these alone hours, but of course Facebook is blocked in the hospital so I can't chat with them like I normally do. (miss you Bill and Sara)

I did go talk to one of the nurses for a while but I hate to keep distracting her from her job. She was Eli's nurse one night during our first stay here. During that time she took Eli out and kept him at the nurses station for part of the night so we could rest. She was so loving and caring with him. She lives near us, so she gave me her number at home and even offered to come rock Eli if we needed a break. Things were so hectic at home that I didn't get a chance to unpack our bag and dig her number out, so I got in a bit of trouble tonight for not calling.... She's not Eli's nurse tonight, but she is down here on the same floor. I was so shocked when we heard a knock on the door and saw her. She made an effort to come and find us and love on our little guy. It is so wonderful to find people who truly care. We went back up to pICU tonight to see Becky in case we were discharged tomorrow. She gave me the address so we can send cards and pictures of Eli up there to them, as well as her email so we can keep in touch with her. She is another special person we have met here.

The neurologist who did the EMG test on Eli walked by us today while we were waiting for him to get out of surgery; he stopped and talked to us for just a few minutes, but he said more in that time to help than some hour long conversations I've had. He let us know that he understands things a little better because he has an autistic child; he's been on the other side of a bad diagnosis. His will require a lifetime of care, ours a shorter one. He told us that everyone has something to accomplish while here; some people take many years to do whatever it is, while others get here and do it in a short time.

I don't know what Eli was sent here for; I know he has taught me to love to a depth I never thought possible. He has taught me to be strong and stand for what I believe in; he has showed me that I can fight passionately for my beliefs. He allowed me to see a new side to my husband, an even kinder and more loving side, one that at times broke my heart. He taught me that a rough day of fussing is forgiven by the smallest of smiles. He has let me see how loved and supported we are by our family and friends. It will be hard to see him go, but I have to try to remember all the good things he brought to my life in just a short time. He has changed the way I think, love, live.... I just can't believe he won't be here to keep teaching me....

Few New Pics...from today 1/13







Things are looking up....

Eli had no problems in recovery and had the ventilator removed with no issues. The chaplin got us back there quickly and I was able to hold him and rock him. He has less tubes hanging off him now and seems some better.....I'm hoping its not just the good drugs they gave him before surgery. I hope recovery continues to be good and maybe we can go home very soon.

I have had so many negative experiences to share but I thought I'd also take time to share a VERY positive one... Our favorite nurse from the pICU, Becky, stopped by last night with a gift for Eli. She had personalized a burp cloth and bib with his name. I knew she was special but WOW. I hope we can find a way to let her know how much we appreciate the care she gave Eli...plus the care and support she gave to us, the family and friends. I'll post a picture of the gifts once we get home and I find my camera.

Morning Update 1/13




We FINALLY made it down to surgery today and everything went as hoped. Now we just have to see how he does getting back off the ventilator. He had some breathing issues again last night and they went back to using the oxygen mask. I'm a little worried we will have some issues with him waking up and getting back to "normal" breathing, but we have everything in place now that we shouldn't be forced to keep or do anything we are not comfortable with.
These are some older pictures, but I needed to share....we hope we get our little boy back soon. He is just struggling now and I hope we can take him home soon and get him back to smiling.

Monday, January 12, 2009

Night Update 1/12

Ugh. Today has been such a horrible day for me that I don't even know what to write. I have stood strong against everything and everyone in the two hospital stays we have had here... I can't do it anymore. Today has officially been my breaking point. Eli is gone; there is only a broken baby in his place right now. They have poked, prodded, and tormented him until he is only a shell of the cute smiling baby he was. I am so disheartened. I can't do anything but cry today. He did not get the surgery today. I'm not sure what happened but now it is SUPPOSED to be scheduled for 9 am tomorrow. They finally decided that they just had to have the labs done today so they ended up putting a line in his neck since it was the only place left. Jason and I were in talking with the Hospice nurse when it happened. I'm pretty upset that they didn't even bother making sure we were okay with that. Now they want to draw blood AGAIN in the morning before surgery; if it won't come out of the line in his neck they wanted to prick his heel yet again. That has been done so many times too. We told them we would refuse that. It is just getting to the point of being unethical to me.

I have asked for someone in the hospital to come talk to us about the treatment Eli has received and how dissatisfied we are with it. It is scary how little control you have once you enter the doors of a hospital. I will always think twice before I ever decide to call 911, go to the ER, or come to the hospital for any reason.

Morning Update 1/12

The upper GI has been done; now we are waiting on the surgery. It should be done today; we have seen so many of the surgery team that I can't imagine they wouldn't do it. We are at a little bit of a standstill right because of some blood work. They want to make sure his blood is clotting correctly before surgery; unfortunately he has been stuck so much that there is no place left to draw from. They have even called in the pedi transport team to look and there weren't able to find anything either.

The nurse from the Butterfly Network (children's hospice) should be by in an hour or so to meet with us and get that established. We should also meet the doctor from the CHOSEN clinic when he does rounds....unless Eli is in surgery. We will hopefully get an appointment soon to go to the clinic since we had to miss the one we had this morning. I'm pretty worried about Eli. He seems to be getting much worse and the SMA symptoms more and more pronounced. I want to get him home so we can take some time to enjoy him.

Sunday, January 11, 2009

1/11 Night Update

We are moving! Now that Eli is off the ventilator, our doctor feels that a private room would be of more benefit for him. It will reduce the amount of traffic in and out of his room, plus allow more of our family and friends to visit. We will be going down to the 8th floor, which is the awesome Roger Clemens floor! It is baseball themed and so cool! There was a lot of money donated to fix up that floor, that's for sure. It is so great to see that people don't always waste all their money on Hummers and big houses. I'm sure all the kids who stay on that floor love it; as parents we can really appreciate all that went into making it so amazing.

Eli had an okay day today, but I don't think he was in the bed EVER. Someone was rocking him all day long. He is super spoiled at this point, but I guess that's okay, right? His Auntie Crista said that just means he's loved. :) He is still on oxygen and boy does he hate that face mask! He is ready to go home and so are we. I HOPE his surgery doesn't get postponed tomorrow. Elective cases get bumped for any emergencies so that could create a problem. I am SOOOOO ready to get out of here!

The Ronald McDonald house here on our floor has been amazing for us. I would highly recommend that anyone who has anything extra to give think about supporting this wonderful cause. I know I will be doing my part to give back as much as I can. The volunteers keep it nice and don't get nearly the appreciation they deserve.

1/11 Update

They finally took the ventilator out last night. He had a rough night, but was safe in the arms of Auntie Crista. I finally managed to get some sleep but am still mentally worn out. He had been having some breathing issues this morning so they started giving him some oxygen. His blood gases came back normal so he is not on any type of machine to help him breathe right now. The doctor asked if he got worse today if we would want them to put the ventilator back on but I don't think we will. I know he would be better without the constant interruptions, so I'd ask them to stop drawing blood and taking vitals before I would consent to anything else. He had done great with his breathing until they decided to draw blood this morning.

The surgery for the g-tube is still scheduled for tomorrow, but we don't have a time right now. Our doctor is really amazing and I am so thankful for him. It has been such a different experience this time around.

My friends from MGR have put together a care calendar to help feed us for now. It will be great to not have to worry about dinner every day. They want us to be able to spend as much time with Eli as we can. I can't believe how sweet all of our friends and family have been. We had lunch and snacks brought up on Friday, coffee and oatmeal yesterday, and two bags of breakfast today. We are well fed if nothing else. The amount of calls, texts, and emails have been overwhelming too. I am so thankful so all the support and love.

Saturday, January 10, 2009

Life can be so cruel...

Today has been a rough day for me. I'm really struggling to deal with the reality of the SMA diagnosis. I have so much anger about the unfairness of it. It has been especially hard today because of the other baby in the room with Eli. He is a one year old and in really bad shape. He has many staples in his head, on a ventilator, and seems to have suffered brain damage. This was apparently done by his father. I can't help but be a little bitter and resentful of the fact that his life was wasted, taken away by a selfish act of anger. I would give anything to have more time with Eli; this man threw his son's life away. I hope I can get my emotions under control so I can sit in the room with my son.

The mom of the other little boy is here and she is having a very difficult time dealing with what has happened. She doesn't speak English, but I hope a hug was enough to show her that people do care. She is under protection and having to be careful of where she goes or what she does. It is very sad to see what's going on. I wish I could do more for her, but I don't know what she needs. I asked our nurse and she didn't know of anything she needed right now. Maybe I will have some ideas before we leave.

Update 1/10

I thought I'd write a little more about the last few days here at the hospital. We have been blessed with a wonderful team of doctors and nurses in the pICU. It is a totally different experience from our last hospital stay and ER time the other night. We were back in touch with one of the doctors we really liked last time, Dr. Northrup, the geneticist. She is working closely with our doctor to make sure things go as we wish. Our attending physician, Dr. Erikson is awesome! He made calls yesterday and was able to get the EMG test done within a matter of hours. It was hard to hear that he does have SMA, but in our hearts we knew it was. The test just snapped that one string of hope that we were clinging to. We are now able to go forward with getting to take him home and enjoying him for as long as he can be with us. I have already promised him a trip to the zoo and as many visits to Target as he wants. He is my little shopping buddy.

We should be able to go home on Thursday. They are thinking he will get off the ventilator today because he is doing better breathing on his own. We will probably stay in pICU over the weekend so we can stay close to our doctor. Monday will be an upper GI and a gastric button will be put in so we can continue to feed him at home without dealing with the NG tube. It will be more portable and easier to take him out and do as many fun things as we can fit in each day. We will have one night of them feeding him, another night of us doing the feeds, then we should get to go home.

While here at the hospital we have had so many friends and family by our side. We have been brought lunches, coffee, breakfast, and lots of love. While we are very sad, we are happy to know that we have so much support to help hold us up. It will be difficult as things progress, but with everyone's help, we just might make it.

Friday, January 9, 2009

1/9 Night Update

We now have a confirmed diagnosis of SMA. We have plans to get a different type of feeding tube installed early next week and will meet with the Hospice nurse on Monday. We are hoping all goes well and if it does, we should have him home by Wednesday or Thursday.

update 1/9

Eli was throwing up yesterday and his breathing became very labored. We decided to bring him back to the ER because of the brown in the vomit; we were afraid it was blood. He ended up being in respiratory distress and unable to get rid of the CO2 in his body. They wanted to put him on a ventilator to fix this, but we had already decided that we did not want to go that route. That decision was taken away from us though because he has no definite diagnosis as of yet. We were forced to either agree or they would have the state take over custody; either way, he was getting hooked up to that machine last night. It was a horrible experience....HORRIBLE.

We are now in the pICU and Eli is being sedated while hooked up to so many tubes. This was not our wishes, but because we brought him to the hospital, things are out of our hands for now. We will be pushing hard for them to do one of the other tests to confirm the SMA; we do not want him to be kept alive for no other reason that to be a pin cushion. I still can't believe we are in this situation. I feel like my life has fallen apart completely. I have no idea what to even do at this point. I lost my baby last night, but the doctors insist on keeping his body alive. I feel like a failure; we promised him we would not prolong things by hooking him up to machines. In trying to help him, we were forced to break this promise. We are not even allowed to file a DNR for him; NOTHING! We just have to sit on our hands and let them be in charge.

I will never, NEVER, enter a hospital again as long as I live.. We have had the worst experiences in the past 2 weeks, constantly being forced to fight doctors for what should be humane treatment. It has not be an acceptable experience. It hurts to think you are trying to help your child, yet those you trust to do that go against your wishes and do things you do not deem as helping. I know it will be a fight to get him fed again, but it will not be the 50 hours it was last time.

I'll try to update when I can.

Tuesday, January 6, 2009

1/6 Update




Well, things are still about the same here. Jason did put him on his play mat for a while today and he enjoyed that; he also had a REAL bath in his tub. The congestion is bad at times, but he's smiling and even starting to "talk" a little. His sleep is troubled because of all the problems he has with his secretions. Someone is with him on the couch almost all day and all night. We can barely get his grandma to go sleep; she ends up spending the night with him most nights.
I keep hoping to wake up and find that this has all been a dream. I was always one of those people who never wanted kids, didn't like other people's kids. I was quite happy with my life, married to Jason, mom to 3 cats. Eli was a big surprise and I had mixed feelings on being a mom. Once he was here, I was in love. He has become my life, my world. I can't even begin to imagine not waking up to see his smile. I'm not even sure how I would make it through a day without him. I now can't picture a life without children. If we get a SMA diagnosis, that will be the future that we are facing. There would always be a 25% chance that any children Jason and I had together would inherit the bad SMA genes; we are not willing to take that risk. I don't know what we would use to fill the void that a childless existence would leave; I just don't think anything could.

Please keep praying for us. I can't lose my little man; not this early. I have so many plans for his future. We have a shelf of books to read to him; toys to help him learn; clothes all the way up to 5T. I need a buddy to take to the Astros games with me. We just can't make it through life without him.

Saturday, January 3, 2009

1/3 Night Update

We were blessed with many smiles today. He had a pretty good day and really enjoyed getting a sponge bath tonight. He is getting more and more alert the longer we are home. He is still very congested and we have a vaporizer going to try to combat that, but improvments are slow to come.

Update 1/3


We had a rough day yesterday. I hope we made the right decision in bringing him home. He is smiling though, which is much more than he did in the hospital. Our friends and family are helping out SO much. My mom has barely slept the whole week; Charles and Kristin stayed until after 5 this morning taking care of him so we could all get some rest. It is so nice to have such great support.

Friday, January 2, 2009

Update 1/2

Things are slowly improving here at home. Eli is starting to talk and smile for us again. Feeding is going good and he seems to be tolerating the feeding tube. He is now getting 28 ounces of formula a day, which is a major improvement on what he was getting when we were fighting to feed him. He has been visited by many friends and family and we have had some really great support. My mom and dad are being extremely helpful and my brother will be here tonight. His aunts, uncle, and cousin have been by to see him and give him their love and support. Many of our friends came by the hospital and several have already been to our house. We need all the support we can get in this difficult time, so I thank everyone for helping us stand strong.

It looks like we will be taking him back to the doctor on Jan 12th. We will be going to the C.H.O.S.E.N. clinic here in Houston. They will help us coordinate all the specialist visits and make sure any recommended treatments are in line with our wishes for him. We are still praying hard that he overcomes this and the SMA test is negative.