The boys and I spent a wonderful time in Texas visiting family this past week. It is so nice to be home though! There's something special about sleeping in your own bed. It was also nice to see Patrick again. He went to Florida on a mission trip with some wonderful college students of ours. They had a great time and did some awesome work! I'm so proud of them, especially my wonderful husband. The boys sure did miss their Daddy and their train table! We hope in that order, but it was iffy last night as to which came first.
Did you know that you shouldn't leave an MP3 player out in the van when the temperature is likely to drop below freezing? Well, take it from me, it's not a great idea. I got a new MP3 player today! Yay! I've been missing my music. I'm currently listening to a new Christian band named "Emberlasting" They are awesome and their lead singer has two gorgeous daughters that my boys are quite fond of playing with! Check them out here: http://www.myspace.com/emberlasting
The week before leaving for Texas we took Aiden to the eye doctor. He will be getting new glasses this week. He is extremely far-sighted.
Now for the "serious" stuff. Our son, Aiden, has been diagnosed with TRAPS. I know, you're thinking, what? That's what our pediatrician said! It's very rare. TRAPS is an auto inflammatory disorder resulting from mutations in TNFRSF1A, the gene that encodes the 55 kDa receptor for TNF. Clinically, patients present with recurring inflammatory attacks consisting of fever, rash, conjunctivitis, abdominal pain, and myalgia that are often severely disabling. In layman's terms, Aiden has been suffering from a fever every 21 days that lasts 7 days since July of 07. His fevers get up in the 106 range. We have another appointment at St Louis Children's Hospital on Monday. We will go over our treatment options and determine the best course of action for him. More than likely we will opt for injections, once or twice a week, of Enbrel, a drug used to fight rheumatoid arthritis.
So, lots of changes for my little red head. I'm sad for these changes. It hurts so badly when, as a mother, you find out your child isn't perfect. My heart aches for him and all of the changes he's about to face at such a young age. No three year old should be facing the prospect of weekly shots for the rest of his life. I feel like I've somehow failed him as a mother. I should be able to protect him. I know that I didn't do anything wrong and that God is in total control of this entire situation. I know that God has something wonderful to teach all of us, especially Aiden, through this life changing syndrome. But, I still want to protect him from pain.
Do you think that's how God felt? When He watched His son on the cross? Many people think that Father God turned His back on Jesus as He was on the cross out of disgust for our sin. I see it differently. I turn my head every time Aiden gets an injection. This whole month, as we've had twice a week blood draws, I've chickened out and sent him to the hospital lab with His Daddy. Watching my child in pain is near unbearable. I think God felt a similar need to turn His head from the pain and the sin. But, I made sure Aiden had the blood work done, to make sure we were doing everything we could to help him. Sometimes, we have to allow our children to experience pain for their "greater good". In Jesus' sake, the pain was for my greater good, not His, but the Father allowed it. Yet, the minute Christ called for His Daddy, I believe, He was there. God the Father RAN to His son and scooped Him up. As Easter approaches this Sunday, I reflect on the amazing sacrifice of the cross. Of Christ, for His life for me. Of the Father, for giving His only Son. I'm awe struck that our Father and Jesus chose the greater good, me, over the pain. It doesn't make sense to me. I just know it is truth. He is Risen! He is Risen Indeed!!!