Thursday, December 14, 2006

I love December

This is my favorite time of the year because I love most things associated with December. Many places are decorated festively and Christmas music can be heard almost anywhere you go. Last Sunday Wayne and I had a date night. We had some gracious friends keep Micah while we went to a fun Christmas program at a close friend's church in San Francisco, then headed down to Union Square in downtown SF for the annual Christmas Rock which was a time of singing Christmas carols led by a conglomeration of very talented musicians from churches across the bay area. It was a beautiful thing to walk down the sidewalk (on the way to the Rock) with my coffee in hand and hear "O Holy Night" echoing in downtown San Francisco. I love the music and love the fact that we are celebrating our Saviour's birth. I also love December because it means we get to spend time with our families who we have only seen twice a year since we have lived out here. So, we head off to Oklahoma to be with Wayne's side of the fam on Sunday. We'll be there for a week and then travel down to TX to be with my side. We are looking forward to a restful, peaceful, joyful time.
Some of you know that we are moving 3 days after we return from the holidays. I won't go into a lot of detail about the situation, but I will say that the last 5 months have been quite frustrating and stressful as our downstairs neighbors have not liked us since the day we moved in. So, for our peace of mind and so that Micah can be free to move as much as he wants, we are moving to the next building over on the bottom floor. I have felt much frustration as we have dealt with this. Even in this situation, God has taught me some things. I am almost finished reading "The Hiding Place" by Corrie ten Boom. When she and her sister are in prison, Corrie makes reference to one of the stiff-faced, hateful guards. Her sister tells her that people who have been taught to hate can also be taught to love. Corrie says "I saw a gray uniform and visored hat; Betsie saw a wounded human being." We haven't had a great deal of face to face contact with our neighbors, but I feel like they are wounded and have probably only known hate and anger. So, if you think of it, you can pray for our future dealings with them and pray for their hearts to soften.

Sunday, December 03, 2006

Our appointment went well last Monday about the Ketogenic diet. We went with the idea that it was a consultation, but soon realized they thought we were ready to start it immediately. They mentioned two dates for early this month and so we quickly told them we want to wait until January. We were quite pleased with the Drs., nurse, and dietician we met with. There wasn't anything new to learn since we have been doing research on this for several months, but we did come to the conclusion that it is something worth pursuing with Micah.

So, the projected start date it January 22 which will include Micah being hospitalized for 4-5 days so that the medical staff can monitor how his body is accepting the diet. We will let you know more details as the time draws nearer.
Thanks for your responses to last week’s blog either through comments here, via email, or in person. I appreciate your affirmation and as always, we all appreciate your continued prayers. We welcome any comments, challenges,etc.
I don’t know that I’ll give a book quote every time I write, but I will this time, again. I do read a lot (one of my friends this week said “How do you have time to read?”); I enjoy it a lot at night (after Micah‘s in bed), and choose it most nights over TV. Anyway, so one of the books I’m reading right now is ‘Uprising’ by Erwin McManus, who happens to be one of my favorite authors. He’s talking about Jesus saying you need to have the faith of a mustard seed and how it’s often interpreted to mean we don’t have enough faith when what he’s actually saying is to have at least a bit of faith. So this is going to be long, but I’m quoting it because it’s good and is right at the heart of our struggle in the last 15 months since Micah’s diagnosis.
“He’s not saying we need to have more faith; He’s actually telling us we just need to have some. It’s not about making your faith bigger. All you need is mustard-seed sized faith. The implication is any less is none at all. Jesus was not calling us to work up our faith. He was calling us to simply put faith in God. It is not our faith in an event that is critical, but our faith in God Himself. It is not about believing in a miracle or believing for a miracle; it is about an unshakable confidence in the character of God.”
When I read that, it was an affirmation to me. Since August of ‘05, we have had many people tell any one of these things “You need to have more faith, God doesn’t want Micah to have Tuberous Sclerosis, he wants him to be healed, you need to pray more, start quoting those scriptures and claim healing for him, etc...” We had people send us material about people who were healed, etc. and that’s fine. We’re still open to hearing those stories and we do pray for his healing. He has been anointed with oil and prayed over during a church service. Yet, I believe God allowed him to have TS for some reason. I believe he is sovereign and has Micah’s life in his hands. While we struggle and question at times, we trust in God’s love and faithfulness daily.

Too bad for the Huskers

This is Micah's Husker hat which he isn't crazy about keeping on, especially since they lost to OK last night. Just kidding, he just doesn't like hats on his head.

Daddy's birthday

These pics were taken on Wayne's birthday. Aren't they so cute?!

Sunday, November 26, 2006

We decided to have this blog to keep people updated about what's going on with Micah, and us, but mainly Micah. I have been sending email updates about every 3 or 4 months and will continue to do that for folks that forget about this. I'll try to post on this every couple of weeks or so.

Not a lot has changed for Micah in terms of seizures. They have actually gotten a little worse over the last few months. By worse, I mean greater in frequency and intensity. He has been on 3 times the amount of Vigabatrin than when he started and it hasn't seemed to make much of a difference. He hasn't been sleeping well in the last 2 months, often waking in the night for 2-3 hours. We haven't known why, whether it's teething, medicine, or otherwise. Thankfully the last week has been better. He has slept 5 nights without waking! So, much better for him and for our sanity!

Tomorrow we are going for a consultation about pursuing the ketogenic diet with him. It is something we have been praying about for several months. While it will be quite rigid and change a lot about how we do things, we feel it's worth a try if it will reduce his seizures and help him to develop at a somewhat faster rate. We will be meeting with a neurologist, dieticians, and nurses to see if they and we think Micah is a good candidate. We covet your prayers for discernment about this.

Micah is crawling a lot and getting into things he isn't supposed to! He's kneeling and grabbing onto the couch, which the PT says is the step before standing. And of course, he's still smiling a lot and laughing which is all more than he was doing a year ago! Last year at this time it was rare to see a smile once a week!

People have asked how I'm doing and I appreciate it. Honestly, the last 2 months have been difficult. I have struggled with being angry a lot and have cried a lot. Angry that Micah has Tuberous Sclerosis, angry that it keeps him from doing so much, angry that it has changed the course of our lives, etc. Yet, I'm learning that it's ok. I keep a journal and will often go back to see what I have written in past months. A few weeks ago I noted some things from a passage in a book I had read called 'Lessons I Learned in the Dark.' The author's talking about grief and she says "Releasing our sorrow to God doesn't lead to weakness; it generates supernatural strength. Crying never washes away hope into an ocean of despair; it helps cleanse the eyes of our souls so we can more clearly see the source of our hope."
The same day I had read Psalm 126:5 "Those who sow in tears will reap with songs of joy." Another version says "shouts of joy." It made me think of how I sometimes cry and weep over Micah and that one day I will reap shouts of joy because he is healed, either in this life or the one to come.
This is much longer than I anticipated. Most posts won't be this long...don't be scared!
Thanks for reading! Kelly