The Long and Short of it.....

This week is a short week because Ryder, Rylee and Regan don't have school either Monday or Friday. I am having a garage sale tomorrow and Friday. It won't be big but I have a few things I want out!

Regan had a 45 minute seizure on Saturday evening. She had several that day so we decided to give her a special medicine we have for just these occasions. It is like Valium and we give it to her rectally. She can only take it a couple times a month because it is so strong and you can grow immune it if you use it to much. So, it worked and it knocked her out of the seizures and it also relaxed her chest so she is breathing easier now too. She has actually been off oxygen since Sunday. Praise God for that!

I've been thinking lately about how these days since Regan has been born have been long days. When you don't sleep much and you go hard when you are awake it makes the days seem long. Regan has had some long days ....the days must be long when you throw up all day,
cry all day because your shoulder sockets hurt because your shoulders sublux all the time,
your hip comes out of place for the tenth time,
you have fifteen seizures in one day,
your chest hurts from breathing so hard,
you pass your fourth kidney stone,
your muscles hurt, your head hurts,
my heart hurts watching all this happen. Regan has had some long days.....

Yet the years seem too short. It seems like only yesterday that we brought her to church for the first time (picture above) and dedicated her to God for His keeping all of her years. Little did we know how much help we would need. I must admit lately I just keep thinking I want more time...more years! Sometimes it makes me just plain mad at the few we may get. Six years just isn't enough. I. I am sure my mom would say it only seems like yesterday that I was six too! I think this is a feeling all mothers have about their children.


This morning Rylee and I were with Regan in her room while she had a seizure. Rylee of course made it there before me..she always hears them and response quickly. After a minute or so I said Rylee you should finish getting ready. She said, I just need to help her through this. Oh, how true that statement is...."we" just need to help her through. There is something about Regan that makes you need to be with her, need to help her, need to simply be....I'm glad we three girls have had each other these years. Though they are short they have been blessed
When the seizure was done...Regan looked up at Rylee and smiled. Rylee pretended to steal her nose, kissed her on her forehead and went on to brush her teeth.
................Long days and short years....blessed time.

Henri Nouwen said this "I see millions of lonely, starving faces all over the world, and large piles of dead bodies of people killed in cruel wars and ethnic conflict. Whose cup is this? It is our cup, the cup of human suffering. For each of us our sorrows are deeply personal. For all of us our sorrows, to are universal." (From "Can you drink this cup")


I wonder this..can I drink the cup of suffering...not just my own but the suffering of the world. I can not on my own. I can only bear it with the Holy Spirit power. I think it is one of the greatest paradoxes ...how suffering is so isolating but yet so universal. I wonder it if it is what the Evil one does with this our universal suffering..make us feel alone in it. It is his snare..the lie that no one else can understand. Our culture has bought it hook line and sinker. That only cancer patients relate to other cancer patients or mom's of kids with special needs relate to there mom's with kids with special needs. We need small groups of people just like us..in the same "demographic."
Is it that we think Jesus will understand us if we are around other people who are like us?

We have an even greater fear that if people really knew us they wouldn't like us. Often because we live in a society that doesn't know what to do with pain. We think that our response to our suffering and pain will be unacceptable to others because it is often times ugly. So in our response we will be unacceptable to others. So, we mask it, hide it or simply deny it is even there. What a waist. How lonely

Jesus at the last supper took the cup of redemption at the passover meal and said we should drink it and remember what he was about to do....that is Redeem us. So when we share in this cup with him we can not redeem but we make ourselves subjected to the process of redemption. We come in line with what He is doing. We, in our own pain and in bearing up with others in their pain, take the cup and we say "Jesus redeem this pain." We make it (the suffering) subjected to the work of the CROSS and it is made redeemable.

This morning I thank God for this. I thank him that every thing that man meant for evil He turns for good for those who trust Him. This is good because I am a man who has done evil and how has experienced it and seen it up close and watch it from afar. My hope is that HE is the REDEEMER and has a mighty plan of making it good. This turns my little isolated experience into part of a grand universal story of redemption. May we confess it and may we let our light reflect that to the world who is looking for it..even if they don't realize it. May we lean into it..and be embraced.

Picture of Rylee

Here is a picture of our sweet Rylee at the piano recital. We are just trucking through our week. Ryder and Rylee are so done with school. Regan is tired of coughing. Brian is teaching a class this week and I am just being a mom and wife.
God is good...all the time!

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.