Silly little Rabbit

So a couple of years ago when we moved in this house I decided I wanted to learn about gardening and I wanted to have flower beds in my back yard. I love to be outside and I love to work so gardening is great fun for me. I even love pulling weeds. (We have them bad this year in my grass!) One of my favorite flower are "Black-eyed Susan's." They are about the size of a daisy but they are yellow with a dark center. They remind me of my mom. She loves yellow. She also loves to be outside and work so I probably get this from her. I miss her a lot so they make me smile.

Anyway, this silly little rabbit is slowly eating them. I thought I had lost from anyway from the late freeze but they are coming up and looking great. He has slowly but schematically eaten them. Everyone keeps telling me to shoot him with Ryder's bebe gun. But our paths never cross. ARRRRR...he makes me frustrated. Silly little Rabbit....go eat some weeds!

He won't eat the weeds. There are plenty of those. I would be happy if he would..he could have a feast..but no he wants my pretty flowers. Weeds are interesting to me..I heard someone say one time.."A weed is anything growing that you don't want in your flowerbeds." Very true. I love those tall orange day lilies I think they are called "Tiger Lilies" they remind me of Regan. They always bloom around her birthday. I had some in front of my house in Texas and they are all down the side of my house here. But many people don't like them...they think they are like weeds. My neighbors have been getting trying to kill of their "Snow on the Mountain" since I've known them. I have even planted some of their's in my garden. I love it...they are getting rid of it like a weed.
Jesus told a story about weeds once. In Matthew 13. He said "The weeds are the sons of the evil one, and the enemy who sows them is the devil." See weeds are from the EVIL ONE!

There are seasons in my life wither internally or externally Christ make me deal more heavily with the weeds in my life. I deal daily with the weeds that pop up (my temper flare, pride, or contentment). I want to deal with them before they take over. Then there are somethings that I realize "I don't like that anymore." It is like the my Day Lilies some think are weeds or my neighbor's beautiful vine I simply don't want them there. No one else my even notice but I KNOW it needs to go! It is hard work to keep all the weeds out and keeping my guard up against the work of the Evil One. It seems the Evil One won't destroy the weeds in my life he only goes after the parts of me that are most valuable. This process of of becoming the woman God wants me to be is done by the Holy Spirit, Me and in community....while working daily on this Journey with Jesus I am comforted to know this truth from the mouth of Jesus in Matthew 13....
"As the weeds are pulled up and burned in the fire, so it will be at the end of the age. The Son of Man will send out his angels, and they will weed out of his kingdom everything that causes sin and all who do evil. They will throw them into the fiery furnace, where there will be weeping and gnashing of teeth. Then the righteous will shine like the sun in the kingdom of their Father. He who has ears, let him hear.

One day our job will will done. We won't have to pick our weeds because JESUS will have wrapped all that work up himself. Then we will shine! We hear you Jesus we hear you! Thank you for the HOPE! So, today I say go pick a weed and enjoy some flowers and remember watch out for those little Rabbits!

ps Regan continues to be on a steady flow of breathing treatments and oxygen. Her seizures were up on Friday but good on Saturday. So keep up the prayers. They are like a fragrant offering to God...and we see the fruit (or flowers) of them popping up all over!
pss Rylee has her Piano Recital today! I would say I would post pictures later but I STILL HAVE NO CAMERA!

Recovery

I have been thinking this week about the the process of recovery. It is a peculiar thing. We want it with a strong desire.
We want to recover from the flu.
We want to recover from alcohol abuse.
We want to recover our youth.
We want to recover from being made fun on in first grade.
We want to recover from a loss of sleep.
We want to recover money that was waisted.
We simply want to recover.

Yet it seems to me we really don't recover. How can you really get over hurt, fatigue, pain...yet we simply want life to get better. We want to make what happened to us better....we want redemption or something. We want it all to mean something.

Regan did so well when we first came home. Now it is not so good. It is all very difficult to manage sometimes. My heart longs for recovery. I can hear it in people's questions. They want her to recover too..Even Regan's friend Kate who is also six said to me yesterday as we walked hand in hand down a sidewalk. "My heart just aches for little Regan." Me too, Kate, Me too! It is our nature to want recovery.

So I wonder if we simply let go of recovery and learned to rest in renewal. It seems to be what Christ offers us. Job 14:14 says "I will wait for my renewal to come." Renewal is total a forward motion. To be renewed is to be made new. It seems different than recovery. It is moving forward and less about the past. Not that we shouldn't try to heal our past but we do it by the work of renewal currently......currently the Holy Spirit is renewing us. Giving us the power to live. Giving us the power to cope. Reminding us that it may not recover but there is still hope...the hope of renewal.

To great women

I read this great quote recently.
To great women.. "To being one, knowing some, and raising them." I keep thinking of this all weekend. I had the great honor of watching six women who had been in my Spiritual Formation Group graduate on Saturday. My heart beamed with pride as each of them crossed the stage. Three of them are going foreign missions (Africa, New Zealand and a Destination Unknown). Two of them our business majors and one will be a school teacher in a public school. I got to talk to my mother and my mentor on the phone this weekend. I spend time with friends this weekend who are great women. I got some good time in with my girls! All great women at various places on their journey...they have all helped me become who I am today. I think about all the women in my life that are great mothers and the list goes on and on. They are married, single, divorced but all of them strive to be the woman God made them to be...they work hard at it. They inspire me in big and small ways to become a great woman and to not grow weary at doing what is good. These women have spoken into me throughout my life and God has used them to change me and make me who I am today. I was raised by one of the finest..so there is hope for me yet! Thanks to you....We need more great woman. So, today the day after mother's day....
To great women.. "To being one, knowing some, and raising them."

Ps Regan continues to struggle with her breathing...there is lots of suction going on around here. It is round the clock vigilance to keep her stats us. Praise God for all oxygen tanks, breathing treatments, and meds that help her do all that she needs to do.

Ponderings....

Today Regan's seizures have been really bad. I hate them. I look forward to the day when she doesn't have to deal with them. It is painful to watch someone have one so I can not image how hard it is to actually go through them. I think of sin every time that she has one. I always have and I image I always will. I think...this is because of sin. No matter how glamorous sin looks it ultimately looks like this...after six years they still make my stomach hurt EVERY time...they don't get easier.
When Regan has one her breathing changes, she makes a different sound and her body contorts in unusually different and unnatural ways. They wake me from sleep, from eating, from laughing. If you spend time with Regan you begin to know the sound to...she almost always has a couple in the morning. when it starts the four of all yell..."Seizure!" at almost the same time. Then some or all us run TO her to comfort her through it. We can't make it stop but we are there. We know when she is in trouble and we respond in forward motion to her. She can't tell us..."hum I think a seizures is coming..it is going to happen in two minutes and last five..if you could plan on helping me out through it I would appreciate it." They come from no where....they last for different periods of time and they are at varying strengths. I hate them BUT I love her more!

Today I keep thinking how all this fits together with who Jesus calls us to be at the Family of God. What if we were so in tune with each other that we could yell..."Seizure!" for each other. I am glad I have people in my life who know me and respond to me. People who recognize when my breathing changes, when I start to say weird things, and when my actions contort in unusually ways that are unnatural to me. I am glad I have sisters and brothers in Christ that see I am in trouble and respond; their hearts to not grow cold to me when they happen a lot..they are with me in it. Sometimes sin comes from no where, last for different periods of time and are at varying strengths....some more palatable than others...all equally in need of grace.

Aren't we glad Jesus was a friend to the sinner (Matthew 11:19). He wasn't afraid of sin..or all the ugly things that come with it as it's side effects. He moved in forward motion TO it....not in retreat of it. Oh, I want to be more like that. Jesus make me more like you!

ps these pictures have nothing to do with this entry just a fun picture from this weekend at the pirate party.....arrrrrgggggg!

The Value of Family

We had another full weekend as this time of year usually is. We have been helping the Maupin's get their house ready. Rylee had her Spring Concert at church. We celebrated a upcoming wedding with a Shower for our Abby. Brian did lots of house projects for me. This marks two weeks for no oxygen for Regan. What a blessing! What a miracle!

I wish I could give you some pictures to look at but Ryder knocked my camera out of my hand today and Brian ran it over with the van. In this moment I was very mad. Ryder says I gave him that "You are going to die boy" look. I was speechless! I was shocked! I was mad! My camera was crushed. Those of you who know me well and know my home is covered in snap shots. I am a picture junky.....

Ryder is a sweet boy..a typical first born who hates to have anyone upset at him. He immediately apologized but honestly there is nothing that an "I sorry" can do in this situation. I know he is sorry and that he didn't mean to do it. But it doesn't change anything. My camera is crushed. When he apologized he said, "I know it doesn't help but I am sorry and if I were you I would still be mad at me too." It was a hard moment. I had to decide. Would I stay mad. When I am honest I wanted to. But it was just a camera. I told him I needed a few minutes to cool down. Then he and I talked about the value of a strong family. We have always taught our kids that people are more valuable than anything material. So, always share and make sure your heart is for the human not the thing. Boy that is easier said than done. I told him, "This is one of those moments Ryder when you learn that even though I am really mad at you I still love you and I think you are great; we are okay even though I am not okay."

I am often reminded at how difficult not coming from a stable home lives. So many of our students at LCC come from homes where their parents were horrible to them. It it those students who pop in my mind in moments like this. When I want to let my flesh win because I want to feel better. When I want to say something that will make him understand just how upset I am. I remember those students faces and I remember, I never want to say or do anything that will make my children think I don't love them.

It is a good reminder that it is in the home that we learn to love people, forgive people and learn to move on when we make mistakes. Inside our family is where we will fail, where we learn to cope, and then where we learn to build strategies for change. I know many of you who read this blog are mom's...What a great thing to be reminded of this week of Mother's Day. Our families are where are children learn how to live in the world, in their local communities, in their own families some day and ultimately within the body of Christ. Our families should inspire our children to want to find that kind of love in a mate and eventually make another family that creates this environment. This is the value of family.... not something dress up, be our little accessory, or build up for our own little ego or power struggles....the Family is Kingdom work.

Familiar.....in an whole new way.

I thought I would type a quick update...Regan continues to be breathing on her own. It is pretty amazing to see. I finally feel like this week I can leave her and not be continually worrying about her. It feels good to be able to be with her and not be wondering. Ryder has a crazy week so Regan is just coming along to be apart of her brother's big adventures. We are his biggest fans! (We might even be groupies?)

I just got back all the pictures we took a month ago...the picture that we thought would be our last family of five picture. It was a pose we have made a million times. We all knew exactly where to go...it was so familiar at such an unfamiliar moment. I think that is what we are trying to do now. Go about life in a familiar pose even though this is an unfamiliar time. We find ourselves experience great joy during these weeks. I have an expectation of them all summer long. I picture all of us swimming, camping, setting out on our back deck in the early morning listening to the birds and reading. Celebrating Regan's birthday on June 21. I see us doing all the things that are familiar to us. Yet enjoying them in a unfamiliar way. Be blessed today.

A few pics from Camping

Regan and Chantell warm their feet by the toasty fire...cool tent in the background. FUN~!
Ryder tells his Mama all about his overnighter....we are enjoying our new camping chairs. ~Fun!
Regan comes with her own chair. Rylee was silly (she had Dr Pepper!) Brian' cooking his dog.~

A Simple Song

The spiritual life is hard work. It is not easy to pray, to meditate, to listen. There is very little to show for it. You can spend hours doing these things and there will be nothing to "show" for it. I must admit there have been times in my life when I have gone months without really praying, meditating or listening to God. Don't get me wrong I am always in relationship with God or at least He is always in relationship with me.

I admit it; I am a crier. I cried last week at American Idol Gives Back. I cry about something everyday..I have for years. My mother in law says I cry less than I did when I first married Brian. Maybe so...I think my cries are just deeper now. I think it because I live on the edge of brokenness. When I say broken. I don't mean in a bad state. I am referring to the right state of life. The state where one has been taken by the Savior, blessed by Him, broken by Him, and given by Him to be a blessing. Because of this blessed brokenness I have many heart cries; some joyful, painful, remorseful, regretful, fearful, hurtful. This full heart overflows.

I realize more and more that the work of the spiritual life belongs in the place when times are good. In the days of the "light" as I call it. When the darkness comes you don't have time to do the hard work of the spiritual life. It is in that place you reap the life of the hard work. It is like storing up for the time of drought. This is when you will need the fruit of your labor. This seems difficult to do in our culture. We want the flash in the pan spirituality. We want to let someone else have the relationship with God and just tell us about it so we can feel the feelings but not do the work. We must lead others to Him by the overflow of our heart.

My house is quite this morning except for a simple song, from a simple girl, she sings her song whenever it comes to her heart. It may be in the middle of church, her school, a restaurant, on the back deck, in the middle of the night or on a day she was diagnosed brain dead. Once she even let it out during a woman's beautiful solo while visiting a church in KC. She doesn't know that there "inappropriate" places to sing your heart's song. Some people think that is because she has handicap and doesn't know any better. Really it is they who don't know any better. They don't know is that it is her heart's song. I wish you could hear it. It is the best sound I know...the sound of her overflow......ps Her Oxygen flow is all on her own since last Sunday!

About that Sunset...

Regan is still holding her own w/out oxygen support (4 days now). That's totally amazing, considering three weeks ago today we met with the Hospice doctor at St. John's. The consensus among her doctors was that it would only be a few days or weeks.

On that day their best advice was that we should come home and keep her comfortable while she rode off into the sunset.

But Today--she's made a nearly full recovery. She's happier and more alert than she's been in months. She's singing and chattering most of the day.

Wow.

I guess that sunset will have to wait, huh?

Brian

pro re nata

Sunny Saturday and Sunday

We had a great weekend.
Yesterday Rylee and I went and planted corn in the community garden we are apart of. It will be so great to have fresh veggies this summer. Ryder spent the night with his best buddy the night before so he needed a two hour nap on Saturday. Brian and Rylee went on an afternoon bicycling date to Subway and to watch a Softball game at LCC. Regan and I sent the afternoon hanging out outside. She sat under the umbrella while I worked on my skin cancer. She had a singing competition with a bird. She would choo and the bird would chirp. Finally after about 15 minutes the bird gave out. He must of not heard how bull headed she is. To top the night off Brian and I went on a double date with our friends Rob and Shannon. We went to Peoria and ate dinner at Joe's Crab Shack on the river walk . We laughed and laughed. We need it. Two LCC students watch our four big kids and Julie watch Regan.

Today (Sunday) Regan has been off her Oxygen today. What a wonderful blessing to let her nose have a break and to see her handling it on her own. Ryder is on his mini choir tour. Rylee is nursing a sun burn from too much time in the sun yesterday. Our family loves Sunshine. It renews our hope...it reminds of of goodness and the glory of a good God. Be blessed and may you be renewed as well.

A new view of M &M

My heart has a new love for Mary and Martha. I've always considered myself a healthy hybrid of the two. I love nothing more than to set at the feet of Jesus and fix meals for others who long to do the same. My husband preaches the best sermon I've ever heard over these two women. So much theology packed in their story. Over the past few weeks I have learned to be comforted by their love and passion for Jesus even more. In John Chapter 11 Mary and Martha have a death in their family. They believe in Jesus. They have watched Him heal the blind, the lame and the deaf. They believe He is the Sun. I encourage you to set down with this familiar story and read it. I can't stop. I keep looking at it, pouring over it, listen to the Father as he pulses truth as a soak it in. Jesus says, "Lazarus died. And I am glad for your sakes that I wasn't there. You're about to be given new grounds for believing. Now let's go to him." (Message)....Here Jesus also says "I am, right now, Resurrection and Life."

As I replay the scene and the turn of events I wonder why he let her lay there for days...struggling so hard. We knew he could heal her. We believe he is the Son of God. But he didn't...He waited. He seemed Regan's time here...her struggle here was done. I remember how frustrated I was that what was robbing her of life was not the lungs but some other neurological breakdown. I remember asking "Why this?" "Why now?" But it was evident to all caring for her Regan was dying. Brian, Ryder, Rylee and I buried her there in that tomb of a bed. You remember ...you read the blog entry...your heart stopped too. Why couldn't Jesus have come before all that pain. I think if Jesus were actually here he might say....

"Regan is dying. And I am glad for your sakes that I haven't fixed it before now. You're about to be given new grounds for believing."

I am going to be really honest here. Some of you may think I've gone off the deep end but I say this with as clear a mind as I have ever had. I wonder why God didn't let Regan die two weeks ago. I wonder why now we have to wait for it to happen again. It happened again for Lazarus. He eventually died. He didn't live forever. I wonder how Mary and Martha felt. By that point they had seen him and Jesus raised from the dead. They must understand death and resurrection in a way no one else can. I wonder if this understanding made it any easier to let their loved ones go the second time. Lazarus to his second death and Jesus' assention into the heavens.
Right before Jesus raised Lazarus from the dead scriptures say Martha reminds Jesus that the situation is to far God..it's simply too late. Then "Jesus looked her in the eye. "Didn't I tell you that if you believed you would see the glory of God.""

I keep thinking that I must be in one of those moments. Wondering what all this will turn out to look like. Rethinking every situation. Not wanting to ever go their gain. So happy he did it but tired from all that means. Wishing I could see all the story unfolded. Yet here I am in the thick of it all..so every day I look into Regan's eyes and listen to hear the Savior whisper to me ..."didn't I tell you that if you believed you would see the glory of God." I want the eyes to see...the ears to hear..oh let it be so sweet Savior. I cry out..I believe but help my unbelief.

I think of those two so much. I hope when we get to feast at the table I can get a table for four some night Mary, Martha, Me and Regs....(Maybe Martha and I could cook!). But I want to hear what Jesus taught them through their experience.

Doing things Regan loves....

The sun is finally out here. Praise God for sunshine! (Sorry Miko)...Regan hates the rain and wind. It always takes her by surprise. She is glad to be able to go outside without getting blown away. We just went for an evening walk. We like to do that in the Spring, Summer and Fall. It is an even greater workout for me know because Regan's chair weighs so much now. (Just another way God uses things that are evil for good! Rom 8:28) The sun gives me hope. Spring is such a reminder of God's redemptive process. I feel blessed by it.

Regan had a great day...we love days like that. Church was her only outing all week. It is so good to fellowship with the body each Sunday. It brings strength. We also went to Bloomington and ate a Panera which is our favorite restaurant. Then we went to stroll around the mall. Regan loves the mall (even with all the rubber-neckers!). I am so glad we get good days with her. I am so glad we were chosen to love and care for her. What an honor it is to love these children God has given me.

Brian and I can't quit talking about how God is continually teaching us about the resurrected life through this current time. Even though we know that Regan's time is limited we feel like this is an experience to what Romans 8 calls us to as believers..to live with death behind us because we died to self and been brought to life in Christ.

As a mother I faced my greatest fear two weeks ago today (the lose of a child). Since in my heart and mind Regan was gone. That day I had to let go of her and give her over to God. As Ryder said in those tender moments that day, "It is Jesus' turn; He can take His time with her." Even now the pain and the spirituality of those moments is so strong in my mind. Yet I also feel empowered by it..that's the resurrected life, a life of freedom...the fear of death has no hold on me.... " mindset of the Spirit is life and peace" (Rom. 8:6). I want to walk in the mindset of the Spirit...to rest in The Life and Peace.

I am also comforted to knowing that these days we are in the perfect plan and will of God. This was his plan. He is in control. Most days I have no words to describe how I feel. How do you explain pain, joy, confusion, ..it is like my mind and body have whiplash....yet my soul is comforted by the work of the Trinity. The Spirit is moaning, Jesus himself searches our hearts and intercedes for us, and the Father works out His will. What a team that is on our side. Praise God that He is not limited to my words in prayer. That is one of Regan's lessons to me. He searches...He pursuits me...though the pain seems relentless SO much more relentless he HE.

"And in the same way the Spirit also helps our weakness; for we do not know who to pray as we should, but the Spirit Himself intercedes for us with groaning too deep for works and He who searches the hearts knows what the mind of the Spirit is because He intercedes for the saints (that's us who believe) according to the will of God." (Romans 8:26-27)

I've taken a couple weeks off from teaching. I better get back to doing it because your going to get tired of reading all my ramblings. I just need to get them out. I need to write them down. Thanks for reading.

Holding On Tight

The days are filled with many ups and downs. We are all just holding on tight as Regan rolls along. Brian and I find it difficult to find words to describe what the past few weeks have been like. We have are sure we have no words to describe how we feel about forest we are currently traveling in. We praise God that we have each other. More than ever I feel our relationship is a gift of grace. We did nothing to deserve it but reap great rewards and want to take precious care of it. Two is truly better than one.

We seem to be living in a paradox. Which is a strange place to be. It is somewhat like visiting another country where you don't speak the language....you find yourself looking for people who speak your language. Those moments when you make a connection and you can see it in their eyes that they get it renews my hope.

Regan continues to have great moments and moments when her weakness is so evident. Julie and Lil are back to their normal hours. We are trying to get back into a new normal. We took another step forward in the new normal by getting our dog, Moby, back today. It is has been nice to know he was well taken care of by our friends the Johnson's. Again another way God takes care of us.

I hope people really listen to what God has to say through Regan. Most of the time people don't take the time to get past her curly hair and cute bows to see the power of God's spirit in her. To really engage her silence and rest in it with her. I think people are engaged more than ever before. I hope we all hear what God has to say through her. My prayer is that as people move on with their lives that God will contiune to use Regan...I am glad people are noticing her strength....and not feeling sorry for her. All of this of course is not for her own glory but for God's glory in her.

Ruthless

So I;ve been wanting to write this cool story that happened on Easter. I had to go to Walmart to pick up some supplies for our "Easter Dog" party. A person standing behind me in line ask me where the kids and Brian were. I said, "Brian is at home..he and Regan are taking a nap. She has been in the hospital." The check-out lady said, "Regan Mills"...She then proceeded to tell me how she heard about Regan at her church today (this was on Sunday). She was moved I could tell by the tears in her eyes. She wanted me to know that she was praying for us. She said she was inspired. We have heard since that other ministered encouraged their churches through her story.
...weird to have someone that knows your story but you don't know.
...great because it was one of those "I am the mother of Regan Mills" moments that I love.
...moving to see the impact of her on people who have never seen her.
...encouraging to see that some churches connected it to the resurrection power.

We contiune to adjust. The nurse has come a couple of times. The social worker came today. He is great. I think he will be a great resource for us. I have been ministered to so much by reading your emails and blog responses. I feel the tender care of father by meals brought in, errands that are run, our lawn being mowed and in all the tender care. I feel frail. Regan's weakness drives me to my knees it is a mirror to my own. The pain is relentless. Watching her resting in his care moves me to find that place myself. It reminds me of one of my favorite books by Brennan Manning "Ruthless Trust." That seems to be the place I find my self. Trying to believe that John 11:26 is true. "I am the resurrection, If anyone believes in me, even though he or she dies will live, and whoever lives and believes in me will never die" That takes ruthless trust. Manning goes on to says "we stare down death without nervousness and anticipate resurrection soley because Jesus has said, You have my word on it."

Time to go snuggle and watch some IDOL! A normal Tuesday night for the Mills family. We haven't had one of those in a while.

not home yet....

This is Chantell...

I guess you can probably the difference between when Brian writes and when I do. My spelling is horrible. I spent my life embarrassed that reality until a few months ago when I realized there are editors who are brilliant at sentence structure but have nothing important to say. At least most of the time I have something to say that at least I think is important. So I am glad to be on this side of that coin.

We are adjusting to home. Brian has made a flow chart for the oxygen tanks. We have rearranged Regan's room. I haven't stopped doing laundry. We dyed some awesome Easter eggs with the Maupin's until 11pm on Saturday, worshiped with our church family on Sunday, ate a great Easter dinner with the Plummiers, and even hosted a Easter Cookout with the D'Andrea's and Maupin's. What a great celebration of the risen ONE!

Regan is doing okay. She is still really tired. She is in constant need of oxygen sometimes more than others. The home health care nurse has come twice. She is very nice and gifted for what God has called her to. Julie and Lil will come tomorrow to give me a small break. We are all on a learning curve. Rylee sleep walks and ended up in bed with Regan last night. So the reality is none of us are sleeping very sound and she is always on our minds.

Yet we still are living with constant fatigue and with wonder of what Regan is going to do. I feel blessed by the opportunity to love her longer and more deeply and with a deeper appreciation for each other. I feel moved to tears many times throughout the day when I think about everything that has happened and will happen. I am a destination girl; I like to get where I am going with no lolly-gagging around. This place of in between is a hard place for me.

So the Holy Spirit keeps reminding me that we are all living the "in-between" life. This is not our home. We are always "in-between" sometimes this home is just more comfortable than other times. I have promised myself that I will listen closely to God as He teaches me more through this situation. I don't want to miss any lesson he has for me in all of this.

Home!

We came home last night! What a journey!

It will take us a few days to organize our new normal w/ Home Health Care, new medical supplies & protocols for Regan. But we're glad to have the chance to do it. Thanks for your incredible support over the last 13 days. It's been amazing & very helpful.

Now it's time to see if we can pull off this pro re nata business.

For clarification, it doesn't mean to sacrifice your ambition. And it doesn't mean to make no preparations or plans. Like Jesus told the disciples in Luke 12:35, "Be dressed, ready for service..." This requires planning, foresight & anticipation. But it does not include worry, anxiety, control, or execution of those plans until the "situation arises."

We definitely have a number of game plans. We've had the last five years and 13 days to develop them for multiple situations. We have supplies & networks for support. Somehow, we just have to relax into a new normal and wait to see what situations arise. And that's the human life. We've promised Regan to help her deal with whatever we encounter in this new territory. But we're trying not to get overly anxious about what big rocks, rivers, valleys or mountains we might encounter. But our bags are packed, shoes are fit, and tires are ready. We're going to keep rolling along together. We're going to enjoy every minute we get to enjoy and push through the hard times we're bound to encounter. Because we know we're not alone. Emmanuel and Ekklesia.

There will be a day when Regan is not at home with us anymore. But that day is not today.

Thanks for rolling with us.

Ready, Set...Roll

Reality Check.

Regan rallied yesterday. She was awake & alert all day. We were able to decrease her oxygen support steadily to where she was almost breathing regular air. While we waited for the evidence that she's tolerating her feeding well, we began to catch up to where Regan has run since Monday's events. Not only has she been resurrected from her clinically brain dead status, but she is just a slightly weaker version of herself before we came in here 13 days ago. We don't think she's ready to ride off into the Hospice sunset just yet. She still has life to live.

Then last night she had a 3-hour critical respiratory episode where she required 3 nebulizer treatments and increased oxygen. But this morning she's stablized again and doing very well.

So here's our new reality: Regan is definitely beyond the help of the medical community. There's no need for us to bring her into the hospital anymore for respiratory issues or labs, etc. But she's also not as near death as we have been so ready to assume. She's like Nancy Pelosi in the Middle East right now...she's just getting acquainted with death...she's not engaging in diplomatic relations yet.

I've decided that we all feel too sorry for the life Regan has to live. We're anticipating her death too much. We're too ready for the relief that will come from knowing the whens & the hows of her last days. We're all looking forward to being through with the grieving process and getting on with life. But wait a minute...Regan doesn't feel sorry for herself. She seems to enjoy life quite a bit. She doesn't spend all day upset because of her pain. She's not psychologically spent because of her fatigue. And she's not sad because of her limitations. She just enjoys the blessings of life, breath, company and fellowship with the Spirit of God.

So we've decided not to put her under the Hospice label. Instead, we're going to do Home Health Palliative Care, which provides the support she needs without signing her death certificate yet. And we may have the chance to get started as early as tomorrow. We hope we can worship w/ our church family Sunday morning if she's up to it.

Please don't worry about this...we're not living in a fantasy land...we're not grasping at straws to keep her as long as we can...we're not projecting our parental desires onto her weak body...and we're not throwing our coins into the wishing pool. We're simply trying to listen to Regan & live in the moment w/ her the horizon in view. I think we all got a little ahead of her this week. She may be closer to her Day, but so are we all. We're not burying her yet if there's more God wants to say through her life.

"Pro re nata" is our new reality. God has been trying to get me to live this way for years, but I'm just too much of a control freak. I have tried to arrange my life & future the way I thought it should look based on some prescriptive notion of truth & faithfulness with a little subjective desire thrown in. Well, guess what......I finally get it. Pro re nata means "as the situation arises." Hospitals use the phrase "PRN" when they're trying to prescribe medications or treatments. It means take this medicine "as needed." It is the opposite of the "twice per day for the next 10 days regardless of your symptoms" approach. God, I give up prescribing my future to you. And I give up prescribing Regan's, too.

I've said all along that we'll run w/ Regan as long as she wants to run. But that is a poor metaphor. 1) Regan can't run, 2) it's a relentless, repetitive, jarring of major joints, and 3) you're in control. Regan rolls. It's a smoother motion, it makes you dependent on others. Regan may not roll much longer. But we don't have to decide that today. Again, as long as she wants to roll we're going to roll w/ her. We're ready to go home. We're set to support her care there. We're just waiting to roll. Pro re nata.

Good Theology

This is Chantell...
Today we met with a 75 year old doctor who started the ER here at St John's and was also the chief of the medical staff at one time. His name is Dr Holland. He is now the doctor in charge of the St John's hospice care. He is definitely a man who has spent his life doing what God made him to do. We believe he gave us a pastoral care visit just as much as a medical visit. He agreed to accept Regan into their program. He still makes house calls and also works with hospice here at the hospital. He answered our questions and believes that we are making the right decision to work towards taking her home. He believes that she will be most comfortable at home and we can comfort her there much easier than here. I feel a little overwhelmed because I have never cared for someone who is so near to passing. I keep remembering that I have felt overwhelmed other times when we were discharged from the hospital. There is always a time of adjusting to the new normal. I have been there other times I think the most difficult part of this last leg will be to let certain things go.....(I don't do that well, I am much better at working hard to fix it.)

For the last few years Brian and I have both realized the power of a strong theology. A strong theology has saved my life, taught me how to parent, and schools me on what a good friend should look like. I don't look at solid Christian theology as an option. It simply is the truth, the way and the life. There is no option. I have not option but to believe that those who mourn will be comforted, that the last breathe is not the end but when true life begins, that in our weakness some how He makes us strong, that what God calls us to he equips us for......all of this has nothing to do with our own personlized faith...it is simply THE Truth.

No one knows what Regan will do. We expect that in the next few weeks she will grow weaker and weaker. We are even now beginning to back off of some of the treatments and meds and simply deal with what she presents to comfort her. We imagine if Regan holds on we will be home sometime this weekend. Meanwhile we will bask in the warmth of her smile and be comforted by her sweet presence. We will testify that our God is good...all the time...our God is good.

On the Way, Off the Path

I wrote a few days ago about looking for the path through this new territory. After talking w/ the doctors & a few tests this morning, they're telling us that there is no path. There is only forest through which Regan is carving out the path she wants to take rather than walking in others' footsteps.

The Update:
Her CT Scan was normal and her "numbers" all look good today. Apparently, there was no evidence of a stroke-like event or swelling in her brain. She has been very tired, but she has been interacting w/ us when awake & has also been a little feisty about the back of her scalp itching. She is breathing better now than w/ all of the treatments she had over the last week. She is only receiving supportive care right now--we're not assertively trying to keep her with us. She just refuses to give up. Her neurologist calls her a "fighter."

They can't explain what happened--she was obviously leaving us. They also can't tell us what to expect...at all. So, we have to treat her clinically based on what she presents. Which (strangely) is what we've been doing the last five years anyway. We're going to begin the process of downgrading from ICU to InterMediate Care as we begin a transition plan to go home. This will take several days of clearing a few hurdles first. But if she (& we) make(s) all the hurdles it means we'll eventually be home caring for Regan as long as God grants us the grace of her presence.

The Musings: (Please give me a break...I'm a preacher stuck in a hospital with a little girl who sleeps during my sermons...There are a lot of words inside looking for an audience.)
And so it strikes me that we're living in the same place you are...none of us knows when we or our kids will no longer be measured by time. We don't get to pick our Day. So as Christians we live the Resurrection every day in God's grace. The writer of Hebrews says it this way when talking about God's people who did not enter the Promised Land: "Therefore God again set a certain day, calling it Today...if you hear his voice do not harden your hearts...there remains a Sabbath-rest for the people of God...Let us, therefore, make every effort to enter that rest." (Heb 4.7-11) The Rest for Today is not on a piece of dirt, a certain day of the week, a certain political situation, a certain lineage, or a certain life circumstance--the Rest for Today is a life lived in Christ Today, regardless of circumstances--A Resurrection Life.

The Resurrection Life is a life according to the promises of God. Abraham is our model--"When called to go to a place he would later receive as his inheritance, he obeyed and went, even though he did not know where he was going. He made his home in the Promised Land and lived in tents because he was looking forward to the city with foundations whose architect & builder is God." (Heb 11.8-10)

And that's where we live...with you. She put us on this path 5 years ago--Easter Week. And Today, Easter Week five years later she's still carving this journey out of the forest. But she's not alone. I'm convinced she's following Jesus into the trees. I pray that Regan's continuing journey will be an inspiration to you about living with Resurrection Life, no matter how long she or you have left to walk it.

(The Altar Call will be Sunday at your local church.)

Mama's Rambles

I'm laying in bed with Regan. I have been for a while now. You mothers know how sweet it is to lay and rest by your children. I love the smell of her hair. Brian and I bathed her yesterday evening so she smells so good. Her hair is so beautiful. She has a purple bow in that Kate Maupin gave her for Valentines day (since she can't have candy). It is nice to have all the big tubes and masks off so that we can get closer. She is resting. Breathing easy. I wonder what she is dreaming of. I know the last hour will be one of my most treasured memories.
I thank God that he gives us moments of peace and comfort.

Daddy was watching us. Now he is milling around "nesting." He has always enjoyed keeping things organized and tidy for us while we stay in the hospital. After yesterday this room looks like a tornado hit it.

Regan has always been amazing. She has always done what no one expects. I think the Savior leads her. He always did things no one expected. Yesterday our lung specialist was here with four other doctors. He asked us how many people knew we were taking off the mask and knew it was Regan's time. I told him not many but people all over the world are praying for her around the clock. He smiled a big smile and said, "That's it." None of them have ever seen this before. The on call ICU specalist even apologize and said he doesn't understand what happened. Our nurse was just in a few minutes ago and she said, "I've never seen an eyes dilate like Regan's and be so fixed and now respond to light."

I'm not sure but I think God has more to say through the life of this little girl. I'm glad. I know we may only have a few more hours, or maybe a couple of days but I just like being with her. I like watching what God does through her. I think God is teaching us all something through all of this. Brian was saying last night as we were laying down for bed that it is so humbling to be going through all of this in community with all of you. It is a great comfort....I have no words to express the feeling I have about the email, blog responses, e cards, voice mails, cookies, notes, flowers.....

I'll stop now...I could just go on and on

What Next?

We just finished 3 hours of painful crying.

Around 7:30am--after having a really peaceful and good night--Regan had a pretty big seizure. She was pretty "out-of-it" afterward, which happens quite often. But her heart rate dropped suddenly seven times over the next 3 hours or so. I noticed her pupils unusually dilated, and they were unresponsive to light. Around 11am, I noticed that one was completely dilated & the other was completely constricted. She was also relatively unconscious. When the doctors looked at it, they said she probably had a stroke or severe brain swelling. A CAT Scan or EEG would not yield enough helpful information to direct treatment, so they said she was clinically brain dead: feeling no pain & hearing nothing. The prognosis was not good, so we had to make a difficult decision.

We gathered the kids around the bed and said good-bye for 90 minutes or so. Through many tears we told Regan how proud we are of her, how much we love her, how much she has blessed us, and that it was OK for her to rest. At the same time we had to be honest that we're not ready to be a family of four. We don't want to get in the van without her. And we can't imagine our house without her singing. Rylee even worried for Moby (our dog), who she said would miss Regan terribly. Then we said a prayer, thanking God for the blessing Regan has been and giving her back to him.

Next, we asked the doctors to disconnect all of the IV's & breathing machine. We held her in our laps, took pictures, told stories, molded hand-prints, ate some lunch & gathered our energy for whatever would be next.....

And then, she woke up.

Her "numbers" haven't looked better all week! The doctors don't understand why or what is going on. There is no good reason for her to be awake. They thought it would only take a couple of hours after disconnecting the machines for her to be at peace. But instead, she's still with us. And they're scratching their heads, laughing and giving Regan credit for being one tough cookie. In our favorite doctor's words, "Regan typically ignores the medical books."

What next???

I can't explain the fatigue from the emotional roller coaster. Chantell & I are both pretty "hands-on" when it comes to life & decisions........but we're completely out of control here. We're completely stripped of power & wisdom. We're utterly at the mercy of God and the will of Regan. And that's OK. We don't know if this will last a few hours or a few days. But we said last Monday night that we would run w/ Regan through this as long as she wanted to run...apparently it's not time to hang up the running shoes just yet. Thank you so much for running w/ us. We really couldn't do it w/out your support.

This brings up a whole set of questions and potential situations we're not prepared to deal with yet. Would you please pray for wisdom & endurance? We have no clue what is next. And so, again...Psalm 33... "We wait in hope for the Lord; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you."

Palm Sunday

This is Chantell again.

We are trying to find the balance of how much to update you on. She is about the same today. All our parents left for OK< class="blsp-spelling-corrected" id="SPELLING_ERROR_1">because The King has come. I know so many of you today worshiped together and in that time prayed for us. So, here are some cool thoughts that I had
My cousin Rick lives in Louisiana he and his family are camping with 100 people from their church and he called this morning to say they were praying too!

My friend Becca is in Mexico on vacation...she and her friends are praying for Regan.

Our local church here in Lincoln has little kids and teenagers and mom's and dad's and really old people praying for Regan and wishing she was there to sing a song during communion time.

Shannon and Rob are in Amarillo with their family and they are praying for Regan.

All of our families live in different states and have churches and small groups that are praying for Regan.

Many of our friends from Texas from Houston, to Dallas, to Lubbock are praying together.

The list could go on and on and on....so many people praying that we don't even know. So today I rest in this thought
One day we will all feast at The Table. Jesus will take the cup and the bread again. All the worshipers of God will be there. And we will all feast together. Regan will not longer be in a wheelchair so she will get to square up and dig in....no more tubes...no more IV's....no more suction...no more weakness...no more wondering what she is thinking....only good sweet fellowship with the Father and with each other as the united body of Christ. I can hardly wait. Ryder told me a couple days ago that that picture gives him hope. I say it helps me cope. I look forward to seeing you there.

Leading us to Prayer,,,

This is Chantell....

Regan has had a stable day today. She is currently laying in bed with her daddy standing over her saying, "Donut I'm so proud of you." Regan replied with a coo and a big smile from behind her bipap mask.

Ryder and Rylee are at a movie with Grandma Vera (Brian's mom) and Nana (my mom). We are really glad they are getting get out and having some fun. All of this is very hard of them and they needed a break. My dad and Brian's step dad Ray are watching basketball. Grandad (Brian's dad) and Granny (Brian's step mom) are MIA but we think they are having dinner somewhere.

Brian and I have just ordered Thai. It is pouring rain outside. Brian's not to happy about having to go pick up our food in it.

Today we moved to room 8 in the ICU. This room has a bathroom and shower in it. That helps a lot and it is closer to the family room. One of the nurses here just brought me a warm seven layer cookie. (Now that is above the call of duty). Regan is steady today. It feels good to not have to think we took another step back today.

This morning I was visiting around a table with the some dear friends of ours from our family here at LCC. I was telling them that we let Regan lead us in prayer at home when we eat. We know that her communion with God is so strong so we love when she prays for us. Some people might think that is weird but we know that Regan talks to God. Her body may have a disorder but her her spirit does not. Now it is amazing to watch Regan who has never spoken lead people all over the world to prayer. And these prayers are not silly prayers. These are sincere prayers that touch the heart of God...thank you!

The Image

Headline Update for the caring but busy:

Today was a rather boring, status-quo day until around 1pm. I moved Regan to her wheelchair for a posture that would support her back a little more than the bed she's been in all week. As I drank coffee & read next to her she had some difficulty w/ her oxygen levels. Within an hour, her system started to crash quickly. We put her back on the bed, increased her oxygen and began the external ventilation we were doing on Monday. She responded well and has settled down. But we have taken a few steps back today. We're praying that this non-invasive support will give her a chance to gain some strength so she can breathe on her own soon.

We'll probably be staying in Springfield for a few days until we know how she'll do.


Reflections for the Musers:

We received another load of cards today. The girl from the shop downstairs handed them to me w/ an inquisitve look in her eyes. As I watched them pan around the room, size me up & finally land on Regan I could tell she was trying to figure out what was so special to so many people.

Chantell, the kids & I know that look well. We see it in peoples' faces all the time. People tell us far too often that Regan is "special." Being the cynic I am, the word usually drips of sentimentality and sticks to me in an unpleasant, messy sort of way. (Sorry! It's my problem, not yours I'm sure.) I think the most special part of Regan is not really any different from you and me...it is the basic image of God in her soul.

That image is powerful no matter where you see it. It is captivating, endearing and impressive. It is stimulating and catalytic. It is affirming and challenging. And it's in all of us. The problem is that our fallenness hides it, abuses it, perverts it and uses it for evil. What God has given us we usually think is ours for our own purposes. What makes Regan special is not the image itself, but that she's better than the rest of us at revealing it. Her Godliness is apparent in her perfect humble submission to his will. Her Christ-likeness is understood in the way she bears suffering. Her fellowship with the Holy Spirit is felt in her gracious fortitude as she depends on his strength rather than her own.

Please remember more than this sweet little girl...remember the powerful image of God revealed in her weak human vessel. And don't miss the lessons she teaches. You have the same responsibility & opportunity to redeem & reflect.

We are completely disoriented.

Wednesday: seemed both comforting & productive. We all really believed she turned a corner.

Today: cards...visit (http://www.st-johns.org/visitor_info/cheercards_home.aspx) to send cards to Regan. Apparently they are printed out in a little gift shop here in the hospital & delivered by a little-old-man-volunteer. After he had made multiple trips to our nurse's station, Chantell overheard him ask, "Who is this girl?" After the nurse explained, he said, "We've never had this many messages for one patient...we barely get this many for the entire hospital!"

It's amazing to think how many people are impacted by this little girl...who has never spoken a word. You may not realize it, but this blog is read by people all over the world (it would be encouraging to read your responses/prayers)...now that is some community...and it gets the attention of the hospital workers & doctors around us. They all wonder, "Who is this girl? Who is this strange community that supports her family?"

We hope that they eventually ask, "Who is their God?" Because we all know that as much as we really do love Regan, this is also about God. We're watching & supporting Regan for His name's sake. We really want to see God's power in the weakest places, to experience it and to praise him for it....don't we? Don't you? Isn't that what you're looking for here? We all desperately need to see God's presence in Regan's life. Our faith may depend on it.

4pm: I arrived @ the hospital w/ the older two kids. Regan looked about the same as yesterday...disappointing, since I was hoping for more obvious progress. But she was alert, singing & laughing again.

6-10pm: she sent every monitor alarm into a fit and bounced her numbers around like basketballs. I've never seen her chest heave like that for so long. She seemed somewhere between panicked & excited. And I was scared.

6:30pm: Doctors have talked to us for years about DNR (do not resuscitate) orders, encouraging us to consider the limits of medical treatment we were willing to use. But this week is the first time they have asked us for an answer. They did it on Monday and again just now. We requested some changes to her treatment, hoping to settle down her system. (Do we even know what we're talking about?)

8:45pm: Chantell and I had to decide whether she should go home w/ the kids as planned or stay w/ me just in case. Should we have the kids camp-out in the family room? How are you supposed to make those decisions? And how are you supposed to live with their consequences?

We tried to watch the numbers on the monitors & find some trends. Finally, we just had to go w/ our gut...we decided that they all needed rest, and that Regan would probably pull through the night.

9pm: I'm divining every blinking light in the room for some sign that we made the right decision.

11:30pm: Right now she seems as peaceful as she's been in awhile. Her numbers look better. She sounds better. She's breathing a little easier. The changes we made 5 hours ago are paying off...so I'm going to bed.

Tomorrow?: I honestly have no idea what tomorrow holds. I don't know whether to anticipate progress or pain. So I have to rest in Psalm 33...read the whole thing when you get a chance. But take this w/ you for now: "We wait in hope for the Lord; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you."

Laughter is Good Medicine

Today has been a good day...Regan is very alert & happy. I got to lay next to her for nearly an hour while she talked, sang & laughed w/ me.

But she's in the same place clinically...she's still struggling much too hard for every breath. It's like she's been running marathons around the clock since Sunday. I'd be dead or angry...maybe both. But Regan seems to have a sweet fellowship with the Holy Spirit that helps her to maintain a good attitude, pleasant disposition, and a strong enduring hope. We pray that her body finds the same strength to endure this marathon. While we still wait for progress, we are at least grateful that her condition isn't getting worse.

Wait Control?

Five years ago today--when life changed forever--I remember well how hard it was to wait. We were disoriented. We didn't know what we were dealing w/ in Regan. We didn't know how our lives would change. And our lives had been relatively easy up to that point--so we weren't sure how to handle personal crisis of this magnitude.

I was impatient for test results. I was impatient for Regan's progress. I was impatient to interpret it all w/ doctors & try to peak around the corner. But we constantly had to wait. We were in the hospital for nearly a week....we spent most of that time waiting for the next test, result, event or consultation. And when we got home the waiting got worse. Now our doctors had to schedule weeks ahead just to see us 45 minutes. You'd think after 5 years of that, we'd be used to waiting for answers. But I'm not.

I know God is teaching me to wait on him...to trust him. But that's hard for someone who is independent in the name of "responsibility" and a control-freak in the name of "stewardship."

Chantell, Ryder, Rylee & I have been here w/ Regan all day...we spent the night up here last night after some warning from the doctors that Regan could get much worse. But the good news is that she hasn't. There's been no relative change. She's still working much too hard for every breath. And we're still holding ours to see how she'll do.

The bottom line is this: Regan is receiving the most aggressive & supportive therapy she can get right now--and she's not improving. The doctors try to calm us by saying it will just take time--for some kids it can take days to see real improvement. But they admit their concern for Regan's energy resources. How long can she endure labored breathing? It seems we have to wait and see...thanks for waiting w/ us.

A Little Inspiration, Please?

Chantell is a lot better at hope than I am. Oh, don't get me wrong...I have it & hold on to it. I even like to pass it around whenever I can. But sometimes I just need to get the cynic out of the way first...Would I disappoint you?

My calendar is a little different than Chantell's, too...on my calendar, Regan was admitted to the hospital for the first time on March 27, 2002. (Remember it was a Wednesday, Dear...) That means tomorrow will be the irony of ironies as we remember the day our life changed forever 5 years ago...and we'll celebrate the day in typical Regan fashion--in the hospital.

The older two kids were off for the weekend w/ Grandma. I had come home a little early from work so Chantell & I could go out for the evening. And I noticed Regan was unusually hot. Turns out she sustained a 102-105 temperature all night. We treated it until it broke mid-morning on Saturday. Then we ran some tests during the day to determine what was going on. All were negative. But the fever returned Saturday night. Sunday morning we took her to the ER first thing. They found a mild pneumonia & began treating it w/ a quick 24-hour therapy schedule. We thought we'd be out soon. But by 5pm they increased her status to ICU and put her on an external ventilator to deliver 40% oxygen, multiple nebulized meds continually and forced air. The goal was to support her system as she struggled to get enough oxygen into her blood. She was working really hard to breathe.

Turns out 24 hours later she has more medications in her body than she's ever had at one time before (somewhere over 15...I'm losing count). She has more medical technical support than she's ever had at one time (5 different pumps putting things into her body, 3 different machine removing thing from her body, and 8 things monitoring different vital functions). And she's more vulnerable than ever. I'm sure I could be pretty dramatic right now...and it would feel therapeutic for a little while to let it all out. But I'm more interested in Regan's therapy than mine...

To be "inspired" is literally "to have breath." It also means "to be spirited." Would you please pray for Regan to be inspired w/ breath tonight? And would you pray for Chantell & I to be inspired w/ Holy Spirit wisdom and strength. Many kids like Regan go through this all the time. But this is new territory for us. And we're trying to find the path that leads through it.

From comfort to comfort to comfort.....

Five years ago this week Regan began having seizures. It is strange to think back to all that has changed in those years. Like most anniversaries it seems like only yesterday but in so many ways also feels like a life time ago. Five years is not really that long but I feel like I have aged twenty years. It was on the 22nd of March that Regan had her first seizure. It was on the 28th of March that we were in the ER for the first time. On March 31st this picture was taken it was Easter morning we were celebrating the resurrection from the hospital. (I told you we have aged 25 years!) On that day in the ER God have me this scripture that brought me comfort that day, and today and many many days in between. May it bring you comfort as well.

2 Corinthians 1:3-11
"Praise be the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comforts, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed it for your comfort and salvation; if we are comforted , it is for your comfort , which produces in you patient endurance of the same sufferings we suffer. And our hope is firm, because we know that just as you share in our suffering, so also you share in our comfort. We do not want you to be uniformed brothers about the hardships we suffered in the province of Asia, We are under great pressure far beyond our abilities to endure, so that we despaired even of life. Indeed in our hears we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril , and he will deliver us. ON him we have set our hope that he will contiune to deliver us.. as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."

...a life on hold!

So today is just one of those days were I have to keep on laughing in order not to lose my mind. My mama told me there would be days like these....I am sure your mama told you the same.

We do not have a land line which is great because I don't have to come home and find out who's call I missed or how many phone calls I have to return. I never want a land line again. I love my cell phone. Except when I have to make doctors or insurance calls. I have been either on hold or on the phone with an insurance company since noon and it is now 1:33p. That is a lot of minutes. I am not not done yet. As I type I am interrupted every few seconds with "Please hold for the next available operator." Even funnier is that I have been on hold for 15 minutes and they gave me an estimated time of only 1! I think their estimator needs a trip to the emergency room because something is wrong with it. When they go to the emergency room I hope it is in network or else they may find themselves on phone trying to get it all straightened out.

I also love this line just given to me by the billing company that I was dealing with before this phone call. I was on the phone with her for twenty minutes and she said at least five different times that this bill looked strange and that it didn't make sense that Regan's secondary insurance had not payed the the difference..BUT their was nothing she could do. NOTHING THAT YOU CAN DO! So, I said, "Well there is nothing that I can do either; if you get to use that as an excuse then I do to." She said, "No Mrs Mills you have to pay it." So I said, "Then we better figure out what you can do because I am not paying a bill that in your words 'looks strange and doesn't make sense.' So why don't you let me talk to someone who can do something." She put me on hold. Then she hung up on me. But at least as they electronic system was hanging up on me it said, "Good-bye and thank you for calling."

So I decided to write on the blog.....and say that I am thankful that God gives us people in our lives that will not...
Put you on hold
Tell you there is nothing they can do
Ask you if you could hold while they pick up the other line.
Ask you to please hold for the next available operator.

And even if your friends (me included) sometimes will God never does...

to an endless measure.....

Ryder took ISAT's this week. He didn't mind it too much because that meant no homework and because it has been so beautiful here this week he could really play outside a lot. On Wednesday he had to write an essay on "Who is Your Role Model."

He chose his Dad. I am sure this is no surprise to anyone except Brian. In Ryder's essay he said that he could show his dad was his role model because he 1) Loves our family 2) Works really hard and 3) Always wants to spend time with me. It was a really great essay. It was interesting for me to see why he thinks his dad is great. In the paragraph regarding his dad's work he said wrote about how my dad has devoted his life to giving God glory and how his dad works harder than anyone he knows and never complains about it. What a great lesson! Since God loves work shouldn't our children see that our work is fulfilling and enjoyable. He also said that his dad is always willing to spend time with him. Just last weekend Ryder and I were having a talk about how some of the kids in his class either don't know their dad's or have been taken way from their parents because their parents were abusive. What a gift it is to have a parent who wants to spend time with you. Lastly (and my favorite part) he said in the first sentence to prove how much his dad loves our family that "My dad loves my mom to endless measures." I can think of no greater gift that I could give my children than to love their dad and for their dad to love me. It builds them up because they are a reflection of both of us. When I am loving their dad in a since I am loving them. I have had a theory that part of the way you help your children find good mates is to inspire them by your own relationship. Ultimately marriage is suppose to be a reflection of unconditional love of God. I know Ryder is only ten but I am encouraged to see that at least he see's an earthly example to "endless love." Maybe sometime when he feels like God's love might run out he will remember that God's love never ends either just like David did in Ps 100:5 when he said "The Lord is good and His love continues forever; His faithfulness never ends." Now that that would make a great mission statement of every Christian marriage.

Lights, Camera, Action!

Today a small crew (2 people) came to interview Brian, Regan and I for the Children's Miracle Network telethon. They came over and filmed for about a hour and a half. They will also accompany Regan to a couple doctor appointments so get some shots of her with some of her doctors. Regan did great. She was really awake for all of it and even sang a couple little songs. Pretty cool for everybody but Moby who had to stay in his crate in the van so we couldn't hear his yelping!
Regan had a seizure on Saturday and one today. So that is very good so far. We are enjoying the great weather here. And we all sing "Let the sunshine, Let the sunshine in, the Sun shine in!" Brian thinks it is cold because he was in 80 degrees all week in Vegas...poor guy! Ryder is taking ISAT's this week so he would appreciate the prayers. We did home church yesterday. Rylee lead the worship. She always does a great job. Ryder preached our sermon entitled "Will you?" He asked the provoking question will we drop our nets and go follow Jesus. He has also renamed the trinity the "trio" which is a very modern spin. And to all the grandma's no it was not on video.

Got Lemonde?

My sister sent me the funniest card...
"Hang in there...Sometimes life hands you lemons but then you make lemonade.
Of course, sometimes life pulls down your pants, runs a power sander across your naked butt, then pours lemon juice on your raw abraded buttocks. In that case a cool citrus drink wouldn't really help but darn it you've got to hang in there anyway!"

Too true. I have always thought it is funny how people think that if they had a child with heath problem they just don't know what they would do. I always say, you would just do what we do because there is no other option. Life goes on...drink more lemonade!

Regan has not had any more seizures but the meds are making her kinda zoned out. We will take that for now. (A lemonade moment!) Ryder is good. He has a week of testing next week so they are really prepping for that. This week he has really been working hard on the book he is writing entitled "The Seventh King". Rylee is great. Yesterday she put on a pair of pants that she thought were her cropped pants that she wears with her boots. She came out and they were way to small. The button was four inches from coming together. She had this shocked look on her face and said, "Mama have I really gained this much weight!" I asked her to turn around and I said, "Rylee those are Regan's jeans, I've been wondering where they were." We laughed so hard. Since they were Regan's they were short so the cropped leg was right but their size is about 5 sizes different. I told Rylee, "Every woman you know will understand how shocking a moment like that is.....normally we don't have a little sister's jeans to blame it on ..we did just gain that much weight!" Again..drink lemonade (maybe the sugar-free version!)

Seizure Free Day.

Well, today we had no seizures. Thank God! When I spoke the the neurologist yesterday he told me to up her evening dose of medicine. It helped but I am not sure how long this will last. For now it is good. She is happy and content. Julie is back with Regan in the morning. So, that will help. If she goes all night with no more seizures I will send her to school in the morning.
I took this picture this afternoon. My Dad's restaurant just got new T shirts so all four of us wore ours today. So we wanted dad to know we sported them with pride...Thanks!

Yesterday was a hard day...my girlfriends were working over time. Shelley's organizing meals, Mandy came for lunch, Marci came for tea, Shannon called several times to check, Jen brought dinner, and Tesha came and hung out from nine to midnight. I am truly blessed. Please contiune to pray for our strength. Thanks for all your emails and prayers. I can not express how much strength I feel from it.

they're back......

I don't have much to say but the seizures are back. She had two this morning before 8am. I have called the doctor to see what they want to do.

1. Please pray for Regan. Pray the seizures will stop.
   
2. Please pray for Ryder and Rylee they were both discouraged when they left for school. It is hard for them to leave her all day and not know what is going on.
   
3. Please pray for Brian since he is not here and that makes his heart sad.
4. Please pray for me. I must admit I had some hope this medicine might work. I had hope that they honeymoon period for this medication might last longer than six days. I am frustrated with the fact I can not help her.....
   

...thoughts from the mama

It is my turn to blog. Brian graciously handled everything while I was with Regan in the hospital. I was so glad to come home. As you remember two weeks ago I asked you to please pray a little more focused for the relief of the seizures. She had a couple days of relief. I believe that those days of respite were to hold us off from taking her in until this past week so our new neurologist would be on call. Last Tuesday was very surreal for me. I could tell by the way the doctor and nurses were treating me that Regan was in bad shape. It felt much like the first trip to the ER we ever made in March of 2002...only this time the world of blood draws, monitors, EEG's, and all thing neurology and pulmanology are in my realm of understanding. It is amazing what comfort familiarity can be. When all the nurses left and the doctors were seeing other patients Regan and I sat by ourselves. My cell phone didn't work so no one to call. I sat in a fairly dark rook watched her body strain to take a each breath. I stroked her hair and stared at her sweet face between the bed rails and rested my head there. I decided to pull my bible from my purse and I read....

"I love the LORD because he has heard my appeal for mercy. Because He as turned His ear to me, I will call you to him as long as I live. The ropes of death were wrapped around me and torments of Sheol overcame me; I encountered trouble and sorrow. Then I called on the name of the LORD; "Lord save me!" The LORD is gracious and righteous and God is compassionate. The LORD guards the inexperienced; I was helpless and He saved me. Return to your rest my soul, for the LORD has been good to you, for You LORD rescued me from death my eyes from tears my feet from stumbling, I will walk before the LORD in the land of the living." Ps116:1-9

I cried....I had not idea what the next few days would hold...It was good to remember truth. The truth that no matter what happened the Lord is compassionate, he guards the inexperienced, and he returns rest. He has done all of this for Regan (the innocent and helpless) before and no doubt he will do it again. He has done that for me (the not so innocent and helpless) before no doubt he will do it again.

Regan is doing great. She is resting well, breathing well and seems to be handling the new meds well. Brian's flight went well...even in Vegas he gets us at 4:30a. He called me at 6:00am Vegas time and was driving around drinking coffee...that is the man I love! Ryder and Rylee enjoyed a pajama day yesterday. I scrapbooked most of the day 14 pages! I think think this is called the land of the living....

Home & Hope

Regan spent much of Wednesday on oxygen and went through another EEG. But she improved steadily throughout the day and had a great night. Tonight we have some great news...

Regan is home and our hope has been renewed. She has been breathing well w/out oxygen since 2pm yesterday. Her lungs are clear (for her). And she still hasn't had more seizures. That would be worth a party all by itself. But there's more...

There are about four places in the country we'd love to take Regan for specialized Mitochondrial care...San Diego, Seattle, Atlanta & Cleveland. In each city is a special clinic with some of the world's leading Mitochondrial experts. At the Cleveland Clinic is Dr. Bruce Cohen, who has had a major hand in leading the United Mitochondrial Disease Foundation. I have been very impressed with his leadership, patient care and writings as I've learned more about him. But he's in Cleveland...and we're in the corn...484 miles according to Google...sorry Drew Carey, but that's just too far away. We can't bridge that distance...but now we don't have to.

We have met a new doctor in Springfield. He just happens to be a pediatric neurologist who worked & studied with Dr. Cohen in Cleveland. He has extensive experience with mitochondrial issues. And he has moved from Cleveland to Springfield--we're convinced JUST FOR REGAN! For us, meeting new doctors is often like meeting the Wizard of Oz behind the curtain...they turn levers, make a lot of noise & blow smoke but don't have a clue about how to help Regan's mito issues. But Dr. AbdelSalam may just be the real thing. He's already made some significant suggestions and changes to her care. He's been able to explain some things to us that we didn't understand about the way her body works. And he has a get-it-done kind of attitude. He's all about trying new things. His grasp of her metabolism encourages us. And his optimism is refreshing.

We're not sure what's going to come of all this. But we're home & filled with hope tonight!