Tuesday, February 9, 2010

Not Knowing

Well, God is clearly trying to keep us dependent on Him and we're thankful that He is the omniscient (all-knowing) One! When we think we've become comfortable with Tanner's future, God reminds us that ultimately, we don't need to know what the future brings, because He does!

Today we went for a follow-up appointment with Dr. Matalon (the geneticist) in Texas City. We went expecting very little and assumed that we would leave with no new information. We explained to him some of the changes we've seen in Tanner over the last 6-12 months. Changes that include worsening balance, worsening fine mother skills, tremors, cognitive decline, increased headaches/migraines, increased weakness and intermittent blurriness in one eye. After discussing our concerns, he has decided to refer Tanner for some additional evaluations. He'd like some new bloodwork to be done that may identify additional genetic abnormalities. He's also recommending a neurosurgery and cardiology evaluation. To our surprise, he's not completely convinced that Tanner has leukodystrophy. But, if it's not, then the challenge becomes determining what is the cause of all of these problems.

So, as usual, we left with a lot more questions than answers but, we are hopeful that the neurosurgeon can help find some solutions for the headaches.

So, how do we feel about all of this? Confused, sad, hopeful and peaceful. A better description comes from the song "I will Rise" by Chris Tomlin. "There's a peace I've come to know, though my heart and flesh may fail. There's an anchor for my soul, I can say, it is well. Jesus has overcome, and the grave is overwhelmed, the victory is won, He is risen from the dead."

With tears, we can continue to praise God for bringing Tanner into our lives and allowing us to glorify Him through these struggles.

We would appreciate your prayers as we make these new appointments, for wisdom in making decisions and sorting through this new information. Also, for us to be accepting of whatever comes as well as for us to be patient and comforting to Tanner as he struggles daily with pain and headaches. Thank you for your continued love and support for our family.

Wednesday, February 3, 2010

5 years ago....

Last week Jon and I enjoyed Clearwater Beach, Florida. Jon had a conference and I was able to go along and enjoy the beach! We had fun spending time together, eating good seafood, walking on the beach, snorkeling with manatees and scuba diving! Tanner stayed home and enjoyed a fun week with the Walsh family. We are so grateful for their willingness to take care of him so that we could enjoy some time away.
While away, 2 anniversaries occurred. Our 17th wedding anniversary, and the 5th year anniversary of Tanner and Alexis' arrival! When I told Tanner that our wedding anniversary was coming up, he was excited and said that he wanted to walk ahead of us down the aisle and throw flowers - he was so sincere, I did everything I could not to laugh!

The other anniversary, January 28, 2005, was the day we met Tanner!! How our lives have changed in 5 years!

I spent an afternoon reading through the first few months of notes of daily activities that are required by the state for foster parents. I had forgotten so many things! Such as how much he hated to get dressed! There were daily notes for many months about how he would tantrum every morning when he had to get dressed, and then how he would love to see the bus when it arrived. It's great to look back and see the progression of his language, how he was learning please and thank you, learning to share and always excited to learn new signs. There were also daily notes of the many tantrums, 5-6 every morning before school and multiple times in the afternoons/evenings (one day it was noted there were a lot less tantrums that day, only about 20-25 total). There were also many descriptions of his difficult time going to sleep, learning to go to the bathroom, and even notes about headaches.

Who knew then that those headaches would still persist today, and that they would mean more than just headaches! Thankfully, the depakote is still working and his migraines have continued to be less and without vomiting! He's still having them occasionally (about once a month), but, not entailing ER visits.

We've both been struggling more lately, with seeing more regression, looking back and seeing things he used to be able to do and can do no longer. But, it's truly amazing the blessing of God's peace, there are still many emotions and much sadness, but, it's truly a peace that transcends all understanding.
I love how God often speaks through music! Yesterday, when Tanner was home from school with a migraine, I was really sad for him and that I could do nothing for his pain, and then I heard the following song and loved the reassurance it brought.
"Safe" by Phil Wickham
To the one who's dreams are falling all apart,
And all you're left with is a tired and broken heart
I can tell by your eyes you think you're on your own but you're not all alone
Have you heard of the One who can calm the raging seas
Give sight to the blind, pull the lame up to their feet
With a love so strong and never let you go oh you're not alone
You will be safe in His arms, You will be safe in His arms
'Cause the hands that hold the world are holding your heart
This is the promise He made, He will be with you always
When everything is falling apart, You will be safe in His arms.
Did you know that the voice that brings the dead to life
Is the very same voice that calls you to rise, So hear Him now He's calling you home
You will never be alone
These are the hands that built the mountains, the hands that calm the seas
These are the arms that hold the heavens, they are holding you and me
These are the hands that healed the leper, Pulled the lame up to their feet
These are the arms that were nailed to a cross, to break our chains and set us free.