Saturday, December 3, 2011

Defeat Is Not An Option

Happy December from us! I feel like the Lord has put it on my heart to write a bit tonight. Maybe someone out there needs to hear something of this rambling that I have to give :)  Today marked our Team Eli / Thirty-One Drop-in fundraiser at our home. I'm blessed to have family and friends who have donated to Eli's memorial and also who have given to this Thirty-One fundraiser to help us raise the funds to make his memorial complete. I have even received word that 2 ladies have ordered whom I don't know personally. Assuming that one is a blog reader and the other was one that just heard Eli's story I'm told, I want to thank you- that just melted my heart that you don't have to be connected by location to be impacted by a life.
I had some raw feeling come up since yesterday about a few things Eli. Days like these are never good and are usually a result of lack of sleep. I don't do this often but have found myself able to tear up at a drop of a hat when things don't go how I think they are supposed to go regarding him or anything related to him. I suppose I can blame it on me being a protective mother. And yes, even though your child has passed on, you can still be protective of them. But the holidays have never ceased to amaze me at how each one has made emotions come back. We all get lost in our own family planning and present buying that we don't realize that someone is hurting. I used to be the worlds worse at this. But since Eli, I get it.

Its supposed to be about family. But what do you do when yours is incomplete?

Incomplete:
  • Cannot bare a child
  • miscarried a child
  • lost a parent
  • lost a spouse
  • lost a child
These are the people who wake up each day and hurt, but December makes it worse. So.much.worse. You see everyone around you having a good time, enjoying their family with food and laughs when all you want is to have your family. Speaking for Jesse and I, we don't want to go through this alone.

We  I am afraid to go through this alone.

So when a friend brings us something for "E" at Christmas, or on his birthday, or sometimes 'just because', what it says to me is -I am thinking about you-. And those are treasures to us. We keep them all. Some have even brought things back from vacation because they know we like to take it out to Eli's house.

The past 28 months have been humbling and hell. Most days have been good. But Satan really knows where to attack you on your weakest days. Its a struggle because hopelessness is a real emotion with waking up each morning without your child. And for us, it a pot full of mixture between hopelessness and guilt, unfortunately. We are blessed to have a support system - of close friends, friends of friends, and of course some family who try to be with us during these events for Eli. I must tell you- if it weren't for them, I think I would have fallen apart a long time ago. When you show up, when you support, when you lend your shoulder, when you listen to me ramble on about him or the garden or the I Can! Arts & Resource Center, when you purchase my Pink Llama Shop stuff, when you send cards, when you send a text, when you bring things for E, and when you simply remember him when you see that random dandelion- you are saving me from Satan's wrath. YOU are what is keeping me afloat.

I receive comments sometimes about how 'strong' I am and how well I handle it. Well, now you know my truth. Its these people in our lives who hurt with me because I'm afraid of hurting alone.

These 2 babies we have with us have given Jesse and I a reason to push forward. I cannot begin to tell you how blessed we are.




Strangers in life are also a blessing. Julie told me tonight that a teenage boy approached her this morning after she spoke at a church breakfast. He asked to see the memorial brick that she spoke about (Brick Sponsorship for Eli's memorial garden & I Can! Arts & Resource Center) . She said he picked it up, paused, and said "I know this name. I sit at his grave at the cemetery." Intrigued, she found him a few minutes later and asked him if he knew Eli's family. He told her no, but that sometimes he goes out there. Why? He said he just likes to go out there and talk.

I do the same thing, too, buddy.

What a blessing that was to my ears as Julie told me, as I realized that someone knew my Eli without knowing him. They spend time in prayer with him. They remember him. My friend Tina has gone out there to see him too, also without knowing him. I have a lot to learn from others. I am a very selfish individual who doesn't want anyone to forget about my son. But what God wants to assure me is that he's not forgotten. He's mine forever. We can and will celebrate with him soon- just not now.

My prayers are that we are able to positively continue our work within the special needs community for both obvious reasons (the need) and for selfish reasons I suppose- And I pray that I can be a friend to others with rememberance for the rest of my life as well as they have been to me. You know who you are!

At the drop-in today, we wanted to show everyone what we've been looking at for his memorial. This is one of the few that we have picked out. Now you get a sneak peak:

Please know that you can order Thirty-One gear for Team Eli until December 11th here:
www.mythirtyone.com/cbokker

Carly Bokker, THANK YOU! Thank you for giving your time and heart into this fundraiser for our special little boy and the angels who are with him in Heaven. You have impacted my life forever by your giving spirit. I hope someday I am able to repay you for your generosity! Thank you Thirty-One!

And for our family and friends who supported this fundraiser with prayers or with orders- THANK YOU!!!

1 comment:

Courtney Beyer said...

Hi Jodie,


I stumbled upon your blog, and reading a few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.

Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.

I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at CBeyer@vpgenetics.com and visit www.sbgenetics.org. This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.

Warmest regards and happy holidays,

Courtney

 

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