Tuesday, April 22, 2008

Neurology visit

Thank you for your prayers for our doctor visit today.

We are happy to report that the doctor did not see any significant change in Tanner's 2 MRI's that he compared. We didn't get as many answers as we were hoping for, and more questions have been raised (of course). We will be going back to see him in 3 months for a follow-up. I'm a little frustrated, despite expecting we wouldn't get many answers, I was still hoping for more.

I am really excited to be taking a trip this weekend (a gift from my husband) to go visit our friend Charity in Indianapolis. I am looking forward to a fun and relaxing time away!

Thank you for your continued thoughts and prayers for our family.


Monday, April 21, 2008


This picture of Tanner and his student teacher was on the Bryan ISD website when their class released Painted Lady butterflies that they had watched change from caterpillars.

As I added this picture it reminded me of what our life feels like right now. It kind of feels like we're in the cocoon at this time. It's a dark place, our future is unknown, yet we are held tightly and securely as we wait. Eventually, we will become a beautiful butterfly, and the end result of what our Father has created us to be. I think that for Jon and myself, it will be a very long process, but, for Tanner, he's becoming that butterfly much sooner. His beauty will shine much earlier than ours and hopefully through that, Tanner will teach others about his Creator. He will be complete in God's perfect timing, and it will be both beautiful and painful at the same time.

Thank you so much for your continued thoughts, offers of support, love and prayers. We are both overwhelmed and supported by them. We feel that your love and prayers help us to not feel hopeless. Despite the hopelessness of the diagnosis itself, we truly do not feel that way because of the reassurance that our life is in His complete control.

I just wanted to write a quick update and let you know that we will be going to see Tanner's neurologist in Temple tomorrow (Tues. April 22). It is actually a follow-up appointment for his headaches (that seem to be under control with the Topamax). We have asked the doctor to compare Tanner's MRI from 2 years ago to a recent MRI to see what kind of changes have taken place in his brain. This would hopefully help us to know how fast or slow the degeneration could take place. It could also not show anything at this time.

We would appreciate your prayers tomorrow. We are both nervous about what we may find out, or what we won't find out. We would also like to be able to remember all of our questions and to feel comfort and peace regardless of what we hear tomorrow, specifically if we don't hear anything new!

We will keep you posted with what we find out, it just may not be much of anything.

Thanks again for all your love,
Jon & Shelly

Wednesday, April 16, 2008

Tanner's New Treehouse

Well, first things first! Below are pictures of the treehouse that Jon and my Dad built during my parents visit from Michigan this past weekend! Yes, it has windows and shingles! This will be the new guest house for any future visitors :). Jon is still working on some finishing touches (door, paint, etc.) but, Tanner absolutely loves it.

We had a great visit with my parents and enjoyed beautiful weather, fishing, and a relaxing time together.

We also told them about Tanner's diagnosis. Thank you so much for your prayers, they have continued to give us great peace, and they were definitely felt on Friday when I told my parents about Tanner.

Before my parents left today, I started becoming concerned. I considered that now after the anticipation of their visit, the busy week last week, and then the conclusion of their visit, I would have too much time to worry. I've had a lot to stay busy with the last couple of weeks and despite plenty to do, there's more time to think and worry about the our future and what it may bring.

I was talking to a friend tonight and said that I do not want to know what Tanner's future brings, because it scares me, but, I'd still like to know what may come, because I don't like the unknown! My thoughts, dreams, and prayers for Tanner's future have begun to change. I've started thinking more about what he'll be like in the 3rd grade and how he'll socialize with the others instead of what his wife will be like. I'm praying that he'll still be able to see me signing to him and be able to communicate with me in 10 years instead of whether he'll be able to read my journal of letters to him when he goes away to college.

Thank you again for your many prayers. It truly allows us to feel a peace that passes all understanding. I cannot imagine not having our Creator to depend on during this time. It obviously does not take away the pain or fear, but His grace gets us through each day, sometimes each minute.

Many of you have asked what specifically you can be praying about right now. We will try to keep this site updated with those things. For now, here are a few things:

1) For Jon and myself to continue having close and open communication and to struggle through this together instead of separately.
2) For my fears to be dampened and God's peace and sovereignty to replace them.
3) For our family to continue reflecting Him and giving Him the glory through this time.

Thank you again for your love and prayers,

Monday, April 7, 2008

Proclaiming His Excellencies

We had a great sermon yesterday that really made me think about what's happening in our life right now. (If you're interested, you can listen to it here). Our pastor, Brian Fisher, is talking about our sacrifices, and do we really worship God sacrificially? It was different in the OT when they had animals and sacrifices to make, today, it's easier to act like we're giving sacrificially, when maybe we're not (how are we really spending our time, money, etc.?) Well, this is where I realized that our son and our time left with him can be used as a sacrifice! I can choose to sit back and become angry and bitter about the situation, or, I can choose to worship the One who gave us Tanner in the first place!

I like this definition for sacrifice: the surrender or destruction of something prized or desirable for the sake of something considered as having a higher or more pressing claim. I don't like thinking about the idea of sacrificing Tanner, but, we're definitely not the only ones ever asked to do that! Abraham was ready to sacrifice Isaac, and of course, God sent His own son to die for us, and many other parents are doing the same thing right now! God has given us everything and given us His best, so how do I not give my best in return? How can I not give back to Him fully? I think that God is asking us to worship Him through this struggle and pain, and to give up our dreams and hopes for Tanner, to fulfill His hopes and dreams for Tanner.

That's one of the harder things to think about - our hopes and dreams for him never being realized. But, I try to remember that they ARE! Maybe not in the way that we have planned, but, his life will still be just as complete as any of us!

As I think about sacrifice, I often think of things that would be hard for me to give up, my comfortable lifestyle, my car, my home, etc. Tanner is such a great example of how God wants us to give to Him. Whatever Tanner has, he does not hold tightly to; probably his most prized possession to date is this glass blown horse that was given to him when we were visiting Niagara Falls last September. Here he is enjoying the horse at the glass making factory.
This precious glass horse was so special to him. Within the next few days he tried to give this horse to many different people, just because he knew it would make them happy! WOW! I hold onto my things (a little too tightly sometimes, ok, most of the time), and here is such an amazing example in my own son!

Last night I had a harder time thinking about this and the reality of what it means - tears and frustration came easily, along with fear for the future, but thankfully, He can take that too!

Well, this post has become much longer than I expected it to be. But, I wanted to share the verse where the title came from. This is what I want to do through this struggle and hurt, to proclaim HIS excellencies because of what HE has done for us!

But you are a chosen race, a royal priesthood, a holy nation, a people for God’s own possession, so that you may proclaim the excellencies of Him who has called you out of darkness into His marvelous light. 1 Peter 2:9


Wednesday, April 2, 2008

The healing sounds of music

Listening to music has been very healing to both of us the last couple of weeks. I have added a music playlist to this site with some of the songs that have become meaningful to us.

There are times when there aren't words or ways to express our feelings, but listening to music somehow is able to bring it out. Sometimes it brings the tears that are right there ready to fall, but haven't come yet. Sometimes when we can't find the words to pray, the music says what our hearts are feeling.

Here is a song I couldn't get on the playlist, but is another song that has touched my heart.

I Will Lift My Eyes

Written by Bebo Norman and Jason Ingram

God, my God, I cry out
Your beloved needs You now
God, be near, calm my fear
And take my doubt

Your kindness is what pulls me up
Your love is all that draws me in

I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You

God, my God, let Mercy sing
Her melody over me
God, right here all I bring
Is all of me

‘Cause You are and You were and You will be forever
The Lover I need to save me
‘Cause You fashioned the earth and You hold it together, God
So hold me now

© 2006 Appstreet Music (ASCAP) / New Spring (ASCAP). All rights for the world on behalf of Appstreet Music (ASCAP) administered by New Spring (ASCAP). / Peertunes, Ltd./GrangeHill Music/J Ingram (SESAC)