Sunday, January 18, 2009

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 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


Natausha Miller said...

I am one of those that has made your viewer number rise. I sit here and try to write this comment through my tears after reading your latest updates. Reading your posts, and learning of your journey with your little guy has greatly touched me.
You do not know me, but I know some of the Wright family back here in Ky. My husband grew up with Terry(bub as my husband calls him- the younger Terry), in little ole Jonancy. Bulletins were posted for prayers for your sweet little guy, and I was eventually given your blog URL to read the road you guys have recently traveled down.
My heart shatters every time I read your newest updates- I know you've heard it more than once, but I just cannot even begin to imagine your pain right now.
I have twin girls- and they were born VERY prematurely (at 26 weeks- weighing 1 lb. 8 oz/1 lb. 10.5 oz.) and spent 84 days in the NICU. It was a roller coaster- for the first few weeks, we had no idea whether God would take them from us, or whether they would continue to fight as hard as their Daddy & I was fighting for them. That was the hardest few weeks of my life- and to see someone go through what you guys did...I can't even give it a thought without crying.
I just wanted you to know who I was- I seen where you were concerned about the number of people reviewing your blog. People thousands of miles away, that don't even know you personally, are praying for you and your husband daily.
I hope you are able to find comfort somehow, although I know that will be a while in waiting.
I will continue to read your blogs, as long as you continue to write. I created this count just to leave this message- so if you do write back, I'm not so sure how I would get it. But if you do feel the need to write back, you can email me at

thoughts and prayers,
Natausha Miller

LeAndra Conley said...

I wanted to stop in to let you know that our thoughts & prayers are with you. Natausha told me about your site earlier & I've cried ALL evening. My husband as well knows your husbands family, & though we don't know you personally, our hearts go out to you. I have 2 baby girls & to think about what you have went through has drove me crazy. I understand everything you are saying though I don't think I could ever be as strong as you have been. I commend you for that greatly. Nothing could ever ever fill the great pain & void you have but I pray that you find comfort in it all somehow. God has a reason for everything & he never gives us more than we can handle, he chose you guys as the parents for this precious Angel for a reason, even if for only a little while. If you ever need anything, post it because I will now be following your blog as well. I hate to run but I'm about to cry again so I'm gonna go hug my 2 Angels & pray for you & your family. If you have myspace would you please post it so we can add you?

Our Deepest Sympathy & Lots of Prayers, Randy & LeAndra Conley

Anonymous said...

My name is Stephanie Liby and I am Tonya's sister in law..I remember you from years ago when you lived with her in Morehead...My heart has been broken for yours and I am completely covering your family in prayers...What now is the most difficult pain you could feel, I am praying God will use for such an awesome purpose..I am praying for strength and peace for your family in knowing that you are never alone. There are no answers, there are no words that are sufficient. But I am following your blog because you are honoring your child in such an amazing way...By introducing him to strangers. May many people come to know the greatness of God through one terrific mom and dad and one strong little boy..Bless you both and you can reach me at anytime..

Anonymous said...

I, too, am one who made your numbers rise. I have posted a few times this week anonymously. You ask what we get out of reading your words. I don't know where to begin. Your words helped me remember how precious life is, how we should not take for granted our little ones and their health. You made me want to come home each night and give him that extra loving that I might not have otherwise. My son is only a month younger than Eli. I followed his story on both the August board and then the Eli board. I am hopeful_mommy_to_orrin. I want to say thank you for sharing your son with us. I am a stronger, better person for "knowing" his story.

Anonymous said...

I'm a fellow MSN'er that has cried along with you through your posts. I can't even begin to fathom the amount of pain that you are experiencing; whether that pain is visible for the world to see at a moments notice or whether that pain is hidden until you can share it with those closest to you matters not. I visit your blog daily, hoping to come up with some sort of post that might give you a sense of peace. However, every time, YOU are the one giving peace.
Although he was here such a short time, he brought a lifetime worth of love to so many people. Eli and your family were in my prayers from the moment I read the first post on the "Eli" thread. You, as well as all those that loved little Eli, will stay in my constant thoughts and prayers.

God Bless,
Caroline Mayes
TN Waltz

Anonymous said...

I have also made your viewer number rise. I followed your son's illness on MSN and my heart broke. I really do not have much that I can add, but your son's strength as he fought his illness really moved me. There are no words that I can express my condolences, but I will continue to read what you have to say, should you chose to share it. Your son's life may have been short, but the love you, your husband, and your families shared with him was greater than that.
- Kirsten Robbins, Secretsnow13-Mom2Leah

Jennifer Rose said...

I am yet another person added to the blogroll... I'm also from MSN (Jen_Mommy_to_Ben), I've never spoken with you before but I've heard so much of what has happened lately. I just wanted you to know that I am praying for you, your husband, and the rest of your friends and family.
Sending my love and support