Friday, October 23, 2009

How can we help?

Over the last few months, you’ve all been so very supportive. It would be impossible to count up all the offers for help you’ve given. And you all know how poorly we’ve been able to receive help. The problem is that we usually just don’t know what would help us. Or, more recently, our needs for quarantine have isolated us from being able to receive help. This week, we’ve discovered an area where we could use your help.

The further we make our way through this journey, we become more drained and lose sight of any goal. It feels a bit like a fog of war. We can’t see what’s ahead of us, and we’re forgetting why we’re out here. We are only able to put our heads down and continue marching., watching only our feet as they put down one step at a time. We trust, with all our heart, that God has a master plan at work. We also feel that’s such an abused cliché, often used to blanket all sorts of confusions, but it’s something we’ve latched onto for a year now. It’s been a year since we learned about what was to come with Eli.

We’d like to call on you to help remind us of the victories that have come through Eli’s story. Victories on any level from causing a smile or tear, to changing a life, to anything in between. Quick thoughts to full stories, we need them all. We still remember some of them. Stories of faiths renewed, stories of parents re-evaluating how they’ve taken their own children for granted, stories of families and children praying together for Eli. All these sorts of things give us strength to continue fighting.

In the Bible, there is a story about Moses, and his role in the battle of the Amalekites (Exodus 17). His job was to hold up his hands. When his hands were up, the Isrealites would be victorious. As he lowered them, they’d suffer loss. When he could no longer lift them, Aaron and Hur came along side him and held his hands up for him. We need your help holding up our hands.

We know there are many more following this blog than have ever written. We know there are some of you we’ve never met, who are following us faithfully. It would mean so much to us for you to communicate any encouragement to us. We’ve tried to share our lives as best we can, could you share yours? We’d love for you to share your stories here, so others can also be encouraged, but we recognize there are many reasons you may prefer not to do this. Lots of us don’t like speaking publicly. Many of us don’t want to spend the time to deal with the technology issues related to posting here. For whatever reason, we offer the alternative of emailing us directly at

Thank you for continuing to walk with us. We eagerly await for your stories, and appreciate you taking them time to write them.


mariah said...

Hey guys, what an amazing post Jason.. . I didn't know that story from the bible, I'm def. going to go read it now, thank you!
I dont really have a story pre say.. I will say though from the moment I 'met' little Eli, God has reminded me many times throughout each day to pray for him & for you guys... I will be driving to the grocery store or wake from sleep and he will be on my heart and mind very distinctly, and I pray fervently for him/you in those times.. it happens quite regularly, also and I hope this is not too strange, but every time I take a shower, I use that scrub from Tonya and I say a little prayer then too ;) ... it's been such a joy in my life to have gotten to know you again, and to be getting to know your sweet wife & family. I hope you know what a dear friend you are to me... your life means a lot to me and impacts me greatly. Thank you for all the good talks & for sharing your lives so sincerely here with us. Warmly, Mariah

Regina Konda said...

Stopped by the church today and spoke with Pastor Jerry. We talked about little Eli and this terrible flu season. I realized I needed to catch up on your blog page and let you two know how much we have been thinking about your family and praying for you. I loved the autumn pictures. Paige is a "doll" and I can't believe how much Eli has grown! I knew through our prayer time at Awanas that you guys were quarantined and have thought about you each day and pray for your ability to keep Eli healthy through the winter. I don't have a really great story to tell, but I can share with you that reading about your life, the difficulties, the concerns, the bits of good news has been very encouraging to me. As a mom, I can only imagine what each day must be like for Tonya. A few years ago our son Joshua had an illness that could have potentially been serious and could have led to a kidney transplant. It was a difficult time and very worrisome as a parent. Everything turned out fine and Joshua is a healthy boy. Every time I read about Eli I think back to those feelings of having a sick child and I am reminded that Joshua's illness wasn't even in the same ballpark as Eli's. They aren't even comparable. It makes me realize the enormity of what your family must be going through. Kind of like taking my feelings during that time and multiplying them by the thousands. I can't even imagine. I am so encouraged by your strength and appreciate you sharing your story. It helps me to keep a better perspective on the blessings in my life and how much I have to be thankful for. It has changed the way I look at some of the events in my life that I used to think of as major but are really very minor. After reading about Paige and having to keep her home I decided I am also going to begin praying specifically for little Paige. I'm sure going through this has made her wise beyond her years. May God's presence continually surround you throughout this winter. You are an inspiration to us all and we will keep you in our prayers. Love, Regina Konda

Anonymous said...

Reading the amazing writings by you, Jason, on this blog has reminded me every time of the powerful role God plays in our lives - in the small things and in the BIG things. You and Tanya have shown all of us that through faith and prayer, you can stand strong. Your committement to your family is an example to us all and Eli and the family is in my daily prayers. - Lesley Gates

Anonymous said...

i've been praying and will continue praying. i LOVE their costumes! i hope the best for you.

love through christ,

Korey Dodson

Anonymous said...

Jason and Tonya, sorry we couldn't talk much when I was out there recently, but I understand. My son is 31 now and never gave us any concerns when he was growing up, and I look back and realize how lucky we were, and what we take for granted in life. I feel sincerely that Eli will come through all of this, and maybe I'll get to see him next time I'm out. Uncle John in Indiana.

Susan Rademaker said...

I have a HLHS baby boy who is just a few weeks younger than Eli. My son, Chance, was born 3/4/09 and has a healthy twin sister. Chance just came home from the hospital for the first time, mid October. He had his Glenn in August. Like Eli, Chance has a lot of respiratory problems. He has a tricuspid vavle leak that is categorized as "severe". They tried to repair it during the Glenn but no success. Chance can go a couple of hours or so without oxygen but generally stays between .2 to .4 liters. He cannot eat by mouth at all. He has a lot of feeding issues and is currently fed via g-tube. He starts his new therapy next week for the first time since his discharge so hoping for improvements.
Eli is beautiful and of course, so is Paige. I read through your blog and I know so much of what you have been through because we've been going through it too.
I wanted to reach out and say hello. Maybe we can swap HLHS

God Bless.

Susan Rademaker