Wednesday, January 30, 2008

Brace Face

This morning Rylee got her braces on. She chose blue and yellow as her rubber band colors. Those are her school colors! Now that is School Spirit! She has a great attitude about the whole thing. I am proud of how she is just doing it without complaining. She has had an expander since November....so now chewy candy, soda, nuts or hard things....She does a great job. Anyway I knew the grandma's would want to see. Can you believe she is getting so old!!!!!Oh, Parian here is a picture of Moby our dog. He was so cute last night. The girls and I were snuggling on the sofa watching American Idol. He got jealous and jump in my lap. He laid his head down on my other shoulder. Until Ryder took the picture....I also got new glasses. My mom wants to see them.

Sunday, January 27, 2008

Shaking the Rug Out

Isn't it funny how we all have things we want to hide. Ryder played hide and seek on Saturday Night and we were saying that being found is half the fun. Yet many of us spend our whole lives hiding parts of ourselves from everyone. Isn't it funny how we do the same with God. We honestly think he doesn't know. I think we are afraid if He saw us maybe he would leave. I am blessed to have a closet that I can put things in that don't have a place. (Brian probably thinks it's his garage but it's not!) It is a closet that has our games, my scrapbooks, a couple file cabinets its, my craft supplies, wrapping paper and everything else that doesn't fit into a category. I don't like to look in because it frustrates me because I don't know what to do with all of it. I never want people to see in it...(even though I know some of you will now knock on my door as ask to look in.) I recently read a book that where the author described her basement as being her place of shame. I suppose most of us have some spot. All of us do internally I know.

One of the things I always want clean is my bathroom. I want the mirrors clean of toothpaste. I want the sink to be the same. I want to pee on the floor around the toilet from when Ryder is in too big of a hurry...or one of his friends. I want to rugs shook out and free from all the hair that falls on them. I want my bathroom to look like no one lives it in. Unfortunately my kids bathroom is also the "guest bath." And so the bath that our guest see is the one my kids use. They don't share the same issues as me so every morning I wipe it down and shake out the rugs into the tub and wash it down the drain...and there is sits pretty until they get home.

I have a few friends that I don't shake the rug out for. It is shear discipline that I don't shake the rug out. All of me wants to but I make myself be free of it for them. I won't want them to clean their bathrooms for me. As a matter of fact I have cleaned some of there bathrooms and enjoyed it. I know that they know I am not perfect so I don't have to pretend. I don't have to hide my imperfections. They aren't that impressed with me and it feels good.

I want to be this way all the time but I am not. I hide. I hide my sin in the closet. I make my life look more cleaned up than it really is. I "shake my rug out" too much. I am glad I have these friends I do have....they live all over the place. If I knew they were coming to visit I would clean up but only for the first day...then I would remember they know me. They have listened to me groan because I have to words to say. They have held me in hospital hallways...they listened to me when I was angry with myself because I sin...and because we live in a fallen world. They listen to my ideas, to my dreams, to my failures...and they still want to be my friend. They are my "Jesus with Skin On" as my friend Paula used to say.

So I was reminded this week you can't shake your rugs for everybody....thank you Jesus that you see my closet...you know my bathroom gets messy and you love me anyway and you give me people that love me anyway.

Monday, January 21, 2008

Monday's Muse

When you are constantly suctioning mucus out of the back of your daughter's throat it makes it very difficult to take time to cuddle with her. It is practically difficult because you need two hands to suction and two arms to hold; since hands are connected to arms you could see the difficulty.
The other issue is that she requires so much in these moments that every other moment I need to be doing something to keep the rest of the family afloat. Unfortunately, cuddling because low on my "to do list." I am a task person so this list is important to me...many times too important. There is also the issue of cuddling with someone who has oxygen tube on her face, feeding tube in her belly, drain tube in her belly, on top of the suction. It is cumbersome and annoying.

A side effect of all of this is it also interferes with my time with Ryder and Rylee. Really it is the same issues. Practically it is difficult because you are constantly jumping up to suction. You need two arms to cuddle a big kid too and it still takes two hands to suction. My to do list and task driven personality interfere with my deep desire to hold my kids (which they both still want everyday even though Ryder is 11! Yea!)

So last night I put it on my "to do list." Ryder and Brian went to St Louis for the afternoon and evening. It was Sunday...I try to do the least amount I can on Sunday because it honors God and reminds me He rested too! Rylee had her friend Danielle over to play for a few hours so I could spend time with Regan. So we sat. I unhooked her feeding tube...no oxygen...no need to suction...no time limit because she didn't need any breathing treatments. My arms and hands were free and my to do list was being checked off because I got to spend a great two hours holding my baby girl. We talked to Nana (my mom) on the phone. Regan likes to talk to her on the phone because she has a great voice...she is excited to hear her and almost always responds. When I hold Regan I remember how much I liked to cuddle. I still do.

At 9pm Rylee's friend left and then Rylee and I reset the house, got Regan in bed, got our jammies on and then snuggled in my bed. Rylee loves to snuggle in my bed. I understand because I am almost 35 but laying in bed with my mom is one of my favorite places. It sounds weird I know but it Shalom to me. She and I love to talk so we just go on and on. Rylee and I are the same. Last night we mostly read. She read "Honestly Malory!" and I read "Cold Tangerine's." We laughed when we turned pages at the exact same time. We had our legs all knotted up together. Regan was in her bed listening to Josh Groben. We read for an hour. Then she said, as she laid her book down, I want to rest. She snuggled in close and read my book with me. She said, "Is this book about her life." Yes I replied...."like a blog in print." She wished there were pictures. I read for another thirty minutes. Then I just looked at her. She is a beautiful girl. She is growing up. I love it and hate it all at the same time. I wondered if when she is 35 if she will still want moments like this. I know I will.

ps thanks for the prayers about the seizures...none all day yesterday!

Friday, January 18, 2008

100% to the Extreme

Just a quick update to let you know that Regan is doing much better. Today is is on nothing but room air and stating at 100%...Regan is an extreme girl.
(Regan is with her cousin Terren at Christmas!)

She has gotten significantly better in the last two day (since the last blog update) so I am thinking I need to ask you to pray about her seizures. She has been having a lot the last couple days. She had 7 yesterday and already four today...Regan is an extreme girl.

We serve an extreme God so if you could request a break from these nasty things we would appreciate it. But when you go to Him...thank if for this day 100% to the extreme.

I am extremely tired of running an ICU. Brian and I need a break. So we are going on a date! Lil will be with the kiddos. Ryder asked Regan this morning if she was excited to see Julie and Regan smiled. Then he asked her if she was excited about Lil coming over tonight while mom and dad go out and she smiled. (All kids love a babysitter because they are extreme fun!) Kyle, Lil's boyfriend (seen in photo to the right) is going to stop over to see them all. Ryder asked Regan if she was excited about Kyle coming over and Regan did nothing. So he asked her if Regan knew who Kyle was and Regan shook her head no...Ryder then asked her if it was sorta weird to think about Lil having a boyfriend and Regan smiled. Ryder told her it was weird for him too! Ryder called this intelligent conversation vs the spiritual conversations we usually have with our sweet girl. Regan is an extreme girl!
(note that in the picture Ryder and Rylee are in the center of Li's attention and Kyle is distracted by video games....This is the way my children like it...being in the center of attention while boyfriends are distracted by image on a screen.)

Tuesday, January 15, 2008

What a Walk

It is sorta a funny thing that the person who continues to teach me how to walk close to Christ doesn't walk...she rolls. In times when Regan is needing more care (like now) one of the upsides is that I get to spend more time with her. I learn a lot from being with her. The girls who help me take care of her call it "Regan Therapy." She sorta helps you sort out your stuff because she is a great listener and she never tells what you say. She never says things that are insensitive or that you should just get over it or that you are over reacting and she never asks you if you are getting ready to start your period. (Even though she may be thinking it!.) She just listens. Sometimes she smiles. Sometimes she sleeps....she lets you sit with it. Somehow knowing that she has walked a difficult journey you find comfort in her presence....She is so full of the Holy Spirit's power that he uses her to minister to me....

In her weakness I am reminded of mine. But because Christ is so strong in her you think...maybe he could be strong in me to? Am I able to accept that Christ has called me to give up everything in order to gain my life? Regan seems to have found that groove....
funny thing....the medicine that she is on that is keeping her secretions to a minimum...and in this lack keep her alive...this med was only given to her when she was told she wouldn't live another day. She had to almost literally lose her life to gain a better life back. So this makes me wonder what do I have to give up to get a better life in Christ? Thanks Reg's!

She is still needing lots of breathing treatments but no fever...today seemed a little better than yesterday.....please keep praying for us. Pray for strength...and clarity! Oh, and that Regan would get better. I praise God for you...I wish each of you could have some time with her....maybe someday when we are all Gathered together with Jesus she can tell us stories. I think that might be her theme in Glory. I know she will testify of His greatness in her. How He made her weak because He was strong....I think while she is telling us she will be walking and talking...talking and walking. (I hope we can all keep up!)

Thursday, January 10, 2008

Divine Prayer

I have been needing to set down and let everyone know that Regan is having some breathing issues over the past couple of weeks. It started on our trip through Kansas and Oklahoma. The Oklahoma climate was near tropical plus wind minus the beaches and tan muscular people in swimsuits. As you remember from previous entries Regan doesn't like mild weather. She is an en extreme girl in many ways. She likes it hot or freezing. So we are doing round the clock breathing treatments. She started on an antibiotic on Monday and we hope she will respond to all of this soon. In the meantime will you pray with us about it. We are beginning to feel tired so I know she is.

Some of you know that I love the "Divine Hours" which is book that is a companion for people who pray according to the Daily Offices of prayer (which is one of the oldest forms of Christian prayer taken from Judaism.) These prayers have saved me from myself many a day in the last few years. Many times I don't know what to pray, I have no energy to come up with words, I can even speak. God laid this tool in my lap...I have never owned my own copy. I continually check them out from the library. My mother in law Vera Lu generously purchased them for me for Christmas. It is one of the highlights of the season for me. Thanks again for my own Vera Lu! I wanted to share the Final Nightly Petition with you,
"Watch, O Lord with those who wake, or watch or weep tonight, and give Your angels and saints charge over those who sleep. Tend Your sick ones, O Lord Christ. Rest Your weary ones. Bless Your Dying ones, Soothe Your Suffering ones. Shield Your joyous ones, and all for Your loves' sake. Amen! (By St. Augustine)

Could we say it any better than this man who was inspired to write it somewhere in the late 300's-early 400's. Thank you sir...I look forward to meeting him someday when we are all gathered with Jesus. I hope he gets to tell us the story behind the prayer. I can think of no better prayer to pray to the One who never slumbers. I can think of no better request than to ask the One who made all to watch, to tend, bring rest, bless, soothe, and shield...all for His Love's sake. The great Love that brought the woman to wash His Son's feet with her tears and hair. The great love that drove the Father to give us redemption through His own Son. Surely there must be no end to His Love. No divorce ...no separation from us. This love so great that He would stoop to save us from our own weakness. Bless His Name that He is in charge of us wither we wake, watch or weep...I am so grateful that Augustine knew that during the night some are awake, some are watching out for others, some are weeping...and sometimes we are doing all three. God's love is great...His mercies are unending.

On a much lighter note .....We subscribe to Time magazine and I am very behind on reading them. I read magazines back to front usually so if an article is in the front it could take days before I would get to it. Last night I was reading the November issue in which the cover proclaimed "God Vs Man" they had a story on Mitochondrial Disorder called "When Cells Stop Working" (You can click on the Link to read the article.) It is a short article and easy to read and understand. I thought some of you might want to understand Regan's disorder better. Often article about it are to weighty but this one might bring clarity.

Sunday, January 06, 2008

Bitter Sweet

I love chocolate and I love coffee. As we were trucking across Kansas Rylee said that she thought I should live in "Coffeeville" (a town in Kansas.) Chocolate just tastes better with a little coffee. Something about the bitter with the sweet....what a great combination. As the kids and I were driving back from Oklahoma we had a great discussion about the sweet parts of life are just made better by the bitter ones. I have a few of those types of memories this year. Not sad memories the way you normally think of bitter sweet but....sweet made sweeter by bitter memories of the past.

First my Granny....who I love with all my heart and who was a very important part of my childhood. We also lived together for a while while I was in college. (We took care of each other!) As she gets closer to eternity with Jesus she has very few lucid moments these days. She thinks that she is 18...that her parents are coming to visit at anytime. She thinks her kids are her siblings. Last Christmas she did not know who I was ...I was okay with it but it makes me said. This year however on the day I was leaving I went to see her. When I walked in she said, "Oh, I am so glad to see you Chantell...I thought you went back home without coming to see me." She proceeded to ask me where Brian was, where my folks were, and how my aunt was how is in the hospital. Now that moment was made sweeter by last years bitter moment.

I also got one of the greatest compliments of my life from Brian's Grandmother Hesser. She is one of the most god fearing people I know. The night manager at her Assisted Living Center prints the blog for her. She said that when she reads the blog she feels like she has been to church. This is a big compliment because she and I come from a very different view of women's role in the church. I know that she hasn't always agreed with me or my interpretations of scripture....we have always respected each other but we are very different. So this compliment is very special or sweet to me because for her to say this is HUGE. I might say bitter sweet.
Lastly my brother and sister-in law have been trying to get pregnant for four years. We really thought that they might not be able to have more children. This was very bitter because we all wanted them to have more. But in God's great providence they are expecting and due in February. Rylee, Regan and I got to attend her baby shower on Saturday. This was a sweet moment for all of us. This pregnancy is a little more exciting and a little more fun than the others in our family because we feel like God's favor is shining on is. It is bitter sweet.