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.