Tuesday, January 20, 2009

Get some hot cocoa and settle in...this is going to be a long one.

A friend that I am very blessed to have took a hard look at me the other day. She looked at me, as I was rambling on and on about how overwhelmed I am with doctors and therapies and appointments and how it just all seems a bit much and that maybe I'm being punished for something. She looked at me, and she said "When it all gets to be too much, you just have to remember the basics."

I looked at her, my face totally blank, no idea where she was heading with that.

"The Basics?" I asked her.

She smiled and signed "Jesus Loves You." to me. (She's my good friend and my sign language teacher, by the way).

"Ellyn," She said, "The bottom line is that Jesus loves you. If you believed that, you'd understand that God isn't punishing you for anything. God loves you. He knows you better than anyone and he loves you and he is using you for a great purpose. We just don't know what it is yet."

Throughout our conversation, we kept circling back around to that. The basics. She will never know what a blessing she was to me that day...I have been in bad shape lately. Sometimes, I don't want to be refined. I don't want to be used for anyone's purposes but my own. I want Eli to be alive, and I want Seth to hear, and I want to have lots of money and get to go shopping every day.

But if each of those things were true, I would not be who I am. If Eli had not died, John and I would not have realized how ridiculously blessed our lives were. I would not have realized what an amazing church family we have. I would not take the time to be silly and laugh and play with the kids I have even if it means the house stays a mess because I know that this time with them is fleeting.

If Seth could hear, I would never have learned to take every single second to hold him and love on him and show him I love him in every tangible, tactile way. I would not have had the chance to meet all the wonderful people who have come into my life since Seth's diagnosis, the women who have become my go to gals for what to talk to and what to do, to call so that I can laugh or cry over what's happening. I have never before felt so instantly bonded to people like Andrea and Courtney, Sarah and Erin and many others who are on Team Seth, who have emailed or called just to tell me that Seth mattered to them.

If we had lots of money, I would never have learned what it feels like for groceries to show up on our doorstep, or, on a bad month, someone offering to cover Ava's tuition. It has taught me what a church family should be. A few years ago, we were on the other end, we helped and gave and I love being on that side. But being on that side does not humble you, and I know now, after all of this humbling, I will be able to be a truly selfless giver when it is our turn again.


Man, look at me spin that stuff! Believe me, I don't always see the bright side.
On Sunday night, we had an all church worship night. The idea is that everyone comes...babies, kids, parents, teens, everyone. That means there's no childcare. John was working. I decided to go anyway, and I am so glad I did. The older kids immediately ran off with the neighbor kids, and Seth and I settled in for some worship, which is my absolute favorite thing ever. More than sermons, more than anything. Singing songs to praise God is when I feel the closest to him.

Since Eli died, I have been craving worship but pretty much unable to participate in it. Every week for months I would to to church, step into service, the band would start to play, I would start to sing...and I would completely break down and run out of church. It felt so hard to be praising God, telling him he could fix ANYTHING, when he didn't fix Eli and I didn't feel like he was fixing me.

After that had happened enough times, I stopped going into service. I volunteered instead, I was all over the place and always there but never in the service during worhsip. It was painful...I wanted to be able to sing praises more than anything, but they would not come out of my mouth. It was not until John started playing with the youth praise band that I started to enjoy worship again, and to be able to get through a few songs without completely losing it. Wednesday nights, in our youth room, I felt like I could finally sing.

It's gotten better for me. I can go to service, I can sing the praise songs. But all church worship is my favorite. People really let go and get into praising God, and I wanted that and needed it this week. Bad.

We sang tons of amazing songs, but the one that is still in my head is called "Healer" The lyrics are below. In the song, the lyrics praise God for walking through fire, healing disease, and being everything we need.

On the surface, the words annoy me. I mean, Eli wasn't healed, and I feel like I need him.

But in the song, it's different. There is a section that says that "Nothing is impossible for you...you hold my world in my hands."

I kind of lost it at that point. Through God, everything is possible. He holds each and every one of our little, tiny worlds in his hands. They are his to bless, his to bring pain or trial or joy. Nothing is impossible through God, and yet when I begged him to save my son, for some reason, his answer was No.

I don't get that. I still struggle with it, every day. But there is no doubt in my mind that even though he said no, it was still in his power to say yes. It is not my job to know or understand why. It's my job to remember the basics. He loves me. He does not cause me pain lightly. I am being fitted for a purpose, and although he said no, he never left me to deal with it alone.

He walked with me through fire these past two years. Losing my son, stepping out in faith and getting pregnant again even though all the doctors said that there was a good chance we could go through it all again, seeing Seth born alive and then watching yet again as they took him away, too. Watching him fight to live, then sitting, listening to the audiologist tell me that "He's not hearing."

Sometimes I feel like it's too much to live through. On the bad days, I am still in danger of being sucked under the surface and never coming up. But I keep coming back to the basics. Jesus loves me.

He proves it in the moments of pure, unadulterated joy when I am holding Seth and singing and he laughs joyfully, or when my kids tell me they love me unprompted. Seeing them growing and reaching for their own personal relationship with Christ. It makes it all worth it. I don't know what is going to happen in our family, I don't know if I'll ever be over losing Eli. I don't know if Seth will ever hear the way I want him to. But what I do know is that God is working in me, working in him, and hopefully working in everyone who reads this post.

This is my hundredth post, and I wanted it to be important, to touch someone who maybe has been craving God like I have, who needs that extra push. Take it. He is there, waiting for you. He never left. Just reach out.

The lyrics and the video of the song Healer are below...it has literally been in my head since Sunday night.


You hold my every moment
You calm my raging seas
You walk with me through fire
And heal all my disease

I trust in You
I trust in You

I believe You're my Healer
I believe You are All I need
I believe You're my Portion
I believe You're more than enough for me
Jesus You're All I need
(More than enough for me)

Nothing is impossible for You
Nothing is impossible
Nothing is impossible for You
You hold my world in Your Hands

Jesus You're all I need
More then enough for me


Liz {Learning To Juggle} said...

Please pray that I take this push, that I so desparately need. Pray that I take this message that you have delivered and do something with it, something real this time, not just words. Please know that you have spoken to me - that God has spoken to me through you. Please pray that I don't just continue to sit here...

Thank you so much for sharing so deeply and honestly with us. I can't imagine it is easy to type so openly, and be so vunerable.

Anonymous said...

I love you, Ellyn. Am glad God put you in my life, am proud of you for posting this, and am in awe of Him for tapping me on the shoulder tonight like He did. What breathtaking timing.

Amanda said...


All I can say tonight is thank you. You will never know how very much I needed to hear this tonight.

Forever missing Gavin

Jason and Vanessa said...

Hi my name is Vanessa Delgado my husband and I delivered conjoined twin girls on November 11, 2008 they only lived for an hour. Besides the Bible the two books that really helped my husband and I were Suffering and the Sovereignty of God by John Piper and Safe in the Arms of God by John McArthur. We ordered a lot of the books to send to other people going through infant loss and just trials. We would love to send the books to you. Just email me your address if you want them at vkdelgado@hotmail.com. Also feel free to email me if you ever just want to talk. I will be praying for you and your family.
Vanessa Delgado

Jason and Vanessa said...

I just got reading your post a little backstory and I was wondering what was the therapy that your doctor recommend that could help with pre term labor. I was on bed rest for almost 13 weeks with the twins for fear of going into pre term labor and I did end up delivering at 32 weeks. I was just wondering I understand though if you are too busy to reply.

Vanessa Delgado

Elyse said...

Ellyn-I needed to read this tonight. No I have never lost a child, but I have lost many already in the last 6 months. Your words put things into perspective. Btw-JESUS does love all and GOD will PREVAIL over all :)
Hang in there!!!

Mandy Hornbuckle said...

Wow. I can't say anything except "thank you" for sharing that.

Anonymous said...

Hi Ellyn~
I happened upon your blog tonight and had to comment. I, too have a son who is profoundly deaf. His name is Caleb. (he has a brother named Seth! :) He was implanted bi-laterally in August2008 and activated in September2008. I also lost a baby as you did. She died about 3 days before she was born. She would also be 2 now. It is such a difficult road to navigate on. My e mail address is dvhathaway@gmail.com if you would like to talk to someone who has "been there". Your post really touched me. I am praying God's blessings of peace upon you.
Take Care, Diane Hathaway

PS Deafness runs in our family. I have a deaf sister so I was blessed to already know sign language. (I was an interpreter before I taught elem. school) Now I teach my husband and our older son sign language for Caleb :)

karina said...

Thank you for sharing tonight. Our family, specifically my niece and her fiance, are just beginning a new journey of grief. My great nephew was born with trisomy 18, lived 5 miraculous days, then flew to the arms of Jesus. I've lost 3 babies in early miscarriage, but this is profounded different. This loss I can't fathom.

You words are comforting. And the basics are just what we need to hold on to. Jesus loves us. Amen.

blessings, Karina

diber said...


I have a 3 1/2 yo profoundly deaf son. He has one implant and we sign--he's bilingual! Deafness has been a huge blessing in our life! God brings himself glory in the most unsuspecting ways. I know it's hard to be faced with such an unusual challenge, but it is not a tragedy. Your son will know Jesus and nothing can be a tragedy in light of that. He is a precious child exactly who God made him to be...not that he can't be healed. But celebrating his deafness is okay, too.
(this is our "deaf blog" http://ellis-island.partialflow.com/ if our journey can be of any comfort to you.)

We also found that talking Deaf adults was a wealth of encouragement.

best to you and your family,

Kaylan said...

Ellyn~ I got on this morning, and something just led me directly to your blog the second I signed in, and I now know why. Your words are exactly what I was needed right now- that spiritual push forward. Thank you for being an unexpected blessing this morning!
I turned on the video and just Prayed for you & John and for everyone being touched by your faith in Christ.
I don't know if there's anything I can do to help out you & your family, but be sure I'm keeping my ears and heart open!
Hope you have a wonderful day today,

Julie said...

Beautiful post. I'm really proud of you. You are an amazing woman. You are SO strong. I'm really not good words, so I don't have anything profound I can write.

All I know is that you seem to have an amazing support system at church and focusing on that will help. I'm glad that you were able to get back to worship. That has always been the part of church that I "feel" the most too.

I'm sure you are overwhelmed and I cannot possibly understand what it is like for you. You & your precious family are always in my prayers.

E @ Scottsville said...

Maybe this post was straight from God for ME today. I am "that down" and I can't feel the basics right now. I know them, but I can't feel them.


Jesus loves me, Jesus loves me, Jesus loves me. It shall be my mantra today!

Thank you for sharing...

Kelli W said...

Thank you so much for this post. Thank you for reminding my that NOTHING is impossible with God, from the smallest to biggest things of life! Also, thank you for reminding me that sometimes God does say no, and that it's not our job to know why but to accept it and trust that God is in control!

Melissa said...

I have just read through many of your posts (found your link on MckMama's site) and will continue to read your older entries as well. But before I do, I wanted to comment. You are a sweet, amazing Mommy and I have been touched by your faith. I too have a darling 6 month old boy with some health "issues." They are different than Seth and his hearing, but I can certainly empathize with you and felt a certain kinship with you already. I have bookmarked your blog and will continue to read. Thanks!

Melissa :)

Anonymous said...

I am here via Mckmama's blog. I have a 3 yr old with some special needs, different than yours, but yesterday had some uncomfortable news. Last night and today just praying for peace to see the blessing from GOd, and most importantly to receive His divine gift. Your post hits home. I will pray for you and those three beautiful children of yours. I have 3 as well (6,4,1). I will also pray we both find the strength to walk each day in His blessings and trials (especially therapy days!). God bless you and your family

Christina Taylor
houston tx

Megan said...

I found you via MckMama's blog and I just wanted to say that this post is exactly what I've needed to hear for so long. Thank you so much!

Bethany said...

Hi Ellyn!

This is the first time I've read your blog--it's really amazing...and I only read one post so far!!!
I am a nationally certified Interpreter for the Deaf and I'm a Christian mom with 3 boys and 4 stepkids (I know...it's insane!). I just wanted to say 'HI' and let you know that I will be praying with you during this time...I can't imagine how tough it must be for you and your husband to make all these decisions!
If it helps at all, I know many, many individuals (mostly children) with cochlear implants that do very well!
If you need anything from me at all...feel free to use me as a resource! My email is MrsForeststomper@yahoo.com :)
Leaning on Him,
Bethany in Michigan

Anonymous said...

ok...can I love you and your family without even knowing you? Your heart pours out through your words and definately encourages me on this day! Thank you for your honesty! My prayers are with your family!!!! I was delivered a blow recently (which we all are from time to time) and I still don't understand why it all happens. A good friend finally gave me the words that convinced me I do not have to know...I just have to believe that it is all for my good in the end. What a hard lesson it is to soak that up..so easy to say, so hard to live by! But, one day at a time, we do it because we know this life is not the one that will be glorious for us! Prayers are with you! Thank you for your encouragement! TRULY!

Windy said...

This entry is incredible Ellyn. Thank you so much for sharing. It makes all the planning and time spent in preparing a worship set so worth it to know that God uses it to touch people on this kind of personal level. I'm so glad you came that night. Love ya- Windy

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