Life in the desert

I’ve been struggling lately.

Writing takes effort to connect with what God is doing in our lives. Sometimes, I don’t see His hand, and that is discouraging to me.

In an effort to find God, I started reading the book, A Praying Life, by Paul E. Miller. It’s been a while since a book has so deeply impacted me. This is mainly because Paul uses vignettes from his own family to illustrate his points, and he has a special needs daughter.

He’s put words to my longings. I now know I’m living in the desert. According to Miller, the desert is a place where there is a great divide between hope and reality. In my case, there is a great divide between my hope for Anne’s healing and the reality of Anne’s disability. And to add to the suffering, you have no idea how long you will be in the desert.

I’ve also learned that God can be close and intimate in the desert. I have experienced this. But typically, God remains on the edge, distant and elusive…  Paul Miller says God stays on the edge in order to increase your faith. I get that. God has definitely been on the edge of my life lately, and it has been difficult to persevere in pursuing God. In other words, my faith needs a lot of increasing ;-)

When God seems silent and our prayers go unanswered, the over-whelming temptation is to leave the story – to walk out of the desert and attempt to create a normal life. But when we persist in a spiritual vacuum, when we hang in there during ambiguity, we get to know God (Miller, pg 192).

When we suffer, we long for God to speak clearly, to tell us the end of the story and, most of all, to show himself. But if he showed himself fully and immediately, if he answered all the questions, we’d never grow… No one works like Him. He is such a lover of souls (Miller, pg 193-194).

I am tempted to leave the story every day. Because frankly, Jesus’ demands on my life are painful. So I am left with a choice, the same choice that Jesus gave his disciples in John 6…

…many of his disciples turned back and no longer walked with him. So Jesus said to the Twelve, “Do you want to go away as well?” Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life, and we have believed, and have come to know, that you are the Holy One of God” (John 6:66-69).

Everyday, when I am tempted to live life apart from God, I echo the words of Peter… Lord, to whom shall I go? You have the words of eternal life, and I have believed, and I know that you are the Holy One of God.

But it doesn’t make the journey any easier…

Moment by moment

I have friends who have had to leave their homes due to the fires in Colorado. This picture was taken over Garden of the Gods in Colorado Springs. God’s promises endure …even in the fire.  What a poignant picture of life outside the garden.

From Jesus Calling, June 27

Rest with me awhile. You have journeyed up a steep, rugged path in recent days. The way ahead is shrouded with uncertainty. Look neither behind you nor before you. Instead, focus your attention on Me, your constant Companion. Trust that I will equip you fully for whatever awaits you on your journey.

There’s a first for everything!

For the first time in my adult life… every towel hanging, every sheet lying, every pillow case covering, and every item of clothing (except the clothes on our backs) are perfectly clean. and folded. and put away. Everything is clean. Everything.

Now, I think it’s time for a vacation :-)

Day 15 of Therasuit therapy

We are finished!!

I am very impressed with this program. Anne made significant progress in the three weeks. It really is amazing. She is VERY proud of herself.

Here are a few videos…

This is one of her walking with a cane. The therapist is moving the cane for Anne and lightly touching her left side. Anne is supporting all of  her weight – the therapist is only giving her cues to help her balance.

This second video is a sample of some of the exercises she performed. Her left foot is attached to a pully with weight on the end. She started this exercise on day one with .5lbs of weight. Her left leg was extremely weak, but it has gotten stronger… she is pulling 4lbs in this video! It’s the last day, so we celebrated by letting her eat potato chips… her favorite food :-)

What I’ve learned during Therasuit therapy…

Five things…

1. Anne CAN put forth effort. I’ve seen her grit her teeth and wrinkle her forehead as she strains to move her left arm. Seeing that effort has to be one of the most encouraging aspects of these last three weeks.

2. Anne has a fierce temper. Anne is soooo stubborn and gets angry when she feels unstable – which is most of the time. Today, while she was doing squats, she got especially mad and started to yell something ugly (which she knows she is not allowed to say). The therapist asked her to do 10 squats. Each time she would say the “forbidden” phrase, we would have to start back at 1. She got to 5 – and then she yelled it: “I’ll bite your butt!” So we started over. She got to 2 – and yelled again: “I’ll bite your bu-!” She thought if she left off the ending “t,” it wouldn’t count. But we started over. We got to 3 and Anne started to yell, and then thought better and said, “I’m MAD!” Victory. Anne exhibited reason and self control. Amen and Amen.

3. Anne has many obstacles to overcome. The greatest of which is fear. Anne has the physical ability to walk with the least amount of assistance. But she can’t overcome her feelings of  fear each time she feels the slightest bit off-balance. If Anne walks independently one day, it will come after years of “persevering -never-giving-up-hard-work.”

Which leads me to the fourth thing I’ve learned…

4. I can’t believe I’m writing this, but… I wouldn’t trade Anne’s broken body for her former healthy self – simply because of the character she will develop in overcoming her disabilities. Special needs children have amazingly strong spirits because of the amazingly large obstacles they have to overcome. Anne has put forth an inspiring effort over the last three weeks!

I confess that I’ve spent way too much time focusing on my “seen” circumstances instead of the “unseen” promises in God’s word. I’ve been overwhelmed thinking of how much work it will be for Anne and our family to continue her recovery. But just as I take pleasure in seeing Anne’s effort and perseverance so does God take pleasure in me – even in my weakest efforts. The key is leaning on Him for strength for the moment – and not worrying about where the strength for tomorrow will come from.

So the fifth thing I’ve learned…

5. Living in my own strength leads to exhaustion and burn-out. God has given me circumstances that force me to lean on Him. Even though I hate it, and get so angry… and stubborn…  and I feel like yelling, “I’ll bite your butt!” – I’m thankful that God would care enough for me to give me such an honorable task as to care for a special needs child. And for this, I am grateful :-)

Day 5 of Therasuit therapy

We’ve finished our first week. Anne has done amazingly well.

Specifically, she is less frightened and has more confidence; therefore, she is putting forth EFFORT! She turned to me several times today and asked, “How hard would you say I’m working? Just regular hard, or SUPER hard?” She is taking pride in her work ethic – this is something I haven’t seen before.

Here is a video taken while Anne is walking on the treadmill. There are no tears on day 5. She trusts that she will not fall, and she is having fun experimenting with the bungees. She is moving her right foot on her own. The therapist is just helping Anne with foot placement. Anne needs help with her left leg, but she is moving it much more than she did on Day 1. We are all proud of Anne (even Anne is proud of Anne – which is the best news yet!)

Day 1 of Therasuit therapy

Anne had her first Therasuit session today. (She will have 15, four hour sessions over the next three weeks.) It was intense. I think she cried for over half the time… not because she was in pain – just because she was MAD. This therapy is hard work, and Anne does not like to work hard. That’s actually one of her biggest obstacles. She puts forth little effort, and when therapists demand more, Anne gets mad.

My prayer is that one day she will channel that stubbornness into getting better. In the interim, we’ll just have to listen to her cry. It’s sooooooooo good for her!

Here’s a rough video of Anne walking on the treadmill. She walked a total of 15 minutes with two short breaks. You can hear her crying :-) Don’t worry, she’s not in pain. It’s just her way of complaining!

14 more days to go…

Long Way Home

My new favorite song:

Sometimes messages of hope can seem trite to a heavy heart. But this song manages to hold hope in the midst of sorrow. Steven Curtis Chapman knows grief, and it shows in this song. Hope is the rope that pulls the grief-stricken out of the dark well. It is what I have been lacking. This song helps.

Kate is six.

Today is Kate’s sixth birthday. To be frank, I’ve been very sad in the weeks leading up to this day. The old Anne never reached this milestone. On her sixth birthday, she was struggling to write the letter “A.” Kate has perfect, beautiful handwriting and can read 2nd-grade-level-chapter-books.

Oh, I know that comparing is futile. But I wonder if Anne will ever get to where Kate is right now – at the ripe old age of 6. After many tears, I’ve come to the conclusion that Anne is on her own track… Her “progress” can’t be measured by the typical standardized tests. She is measured using a different standard – a “Kingdom of God” standard. She might not be able to read and write as well as Kate, but she’s good at encouraging others. She can’t walk on her own, but she is tender-hearted and kind (well, most of the time ;-)

And because of Anne’s disability, Kate has the opportunity to advance in “Kingdom” lessons too…. like sacrifice and patience.

We celebrated the stuffins’ out of Kate’s birthday today. We did and ate all of her favorite things – surrounded by all of her favorite people. Ironically, we celebrated Anne’s sixth birthday with the same people. This is what Eric wrote about that day:

This morning Anne was surrounded by the Bratcher and McKinney girls – they all loved on her and cuddled with her and talked to her. God had a good plan before the foundations of the earth and in that plan included a morning such as this – all for little Anne – just to bless her and show me that HE cares about even the little things, and especially Anne.

I could write the same thing about Kate today! Though Kate and Anne share different skills and strengths, they have one vital thing in common – they both have been bought by the precious blood of Jesus, and He has a good plan for each of them. They are both good… just different :-)

An unfair exchange

We’re all called to something. Something odious. At least it’s odious for me. Sacrifice. Let me make one thing clear at the beginning. At my core, I despise sacrifice. I try to avoid it at all costs. Who really wants to sacrifice their wants, desires and pleasures? Even for a good cause… Seriously, even if we do “sacrifice” our time for a good cause, at the heart of it… Isn’t it just something we do to make us feel better about ourselves? True Sacrifice – gut wrenching, painful sacrifice is impossible – at least it is for me.

Yet, Jesus demands it. If you study the gospel of Mark, you might notice an event in the 8th chapter that sort of splits Mark’s gospel into two sections. The first section is Jesus showing his disciples and followers that He, indeed, is the long-awaited for Messiah. He heals and teaches and heals, and performs miracles and heals and teaches some more. The crowds are amazed.

At the end of Mark 8, Jesus turns to his disciples and asks them who the crowds say that He is. And after they answer, Jesus says, “Yes, but who do YOU say that I am?” Peter says, “You are the Christ.” And this is a turning point in Mark’s gospel.

It’s a subtle split, but Jesus turns his focus more on training the twelve in that dreaded topic: sacrifice. Check it out…

Mark 8:34 And calling the crowd to him with his disciples, he said to them, “If anyone would come after me, let him deny himself and take up his cross and follow me.”

Mark 8:35-36 For whoever would save his life will lose it, but whoever loses his life for my sake and the gospel’s will save it. For what does it profit a man to gain the whole world and forfeit his soul?

Mark 9:35 If anyone would be first, he must be last of all and servant of all.

Mark 10:43-44 But whoever would be great among you must be your servant, and whoever would be first among you must be slave of all.

Mark even illustrates this principle of sacrifice in story form… Remember the rich, young ruler? He wants to follow Jesus, but Jesus asks him to sacrifice the one thing he loves most – his possessions. The man can’t and leaves broken-hearted. His disciples are incredulous. “Who can be saved?” they ask. Jesus gives the good news. “With man this is impossible, but not with God. All things are possible with God” (Mark 10:27).

I cannot muster the ability to sacrifice from within myself.

I have dreams you know… And they aren’t selfish desires – they are good desires, but for now, I can’t pursue them because of the time it requires to care for Anne. I have it easy actually. God has given me an easy choice.

  1. Pursue your own desires and let someone else care for Anne. OR
  2. Sacrifice and care for Anne.

Like I’m going to choose not to care for my own daughter.

But here’s where the mystery is revealed. Here is the paradox that I could have never uncovered on my own. You know what you find when you sacrifice your own desires and wants and dreams? And I don’t mean the “sacrifices” that make us feel better about ourselves. No, I mean the gut wrenching, I HATE THIS kind of sacrifice. Because that’s how I feel most of the time. I HATE THIS.

You know what I’ve found. Do you know what’s at the bottom of the deep well of sacrifice? What’s waiting when you really let Jesus be the King and surrender to that horrible thing he’s asked you to do – the thing you could never do by yourself? Do you know what’s waiting for you? Satisfaction.

As gut wrenching as the sacrifice is, the satisfaction on the other side is… well, it’s other-worldly. Jesus doesn’t ask us to sacrifice because He wants to make our lives miserable. He does it because He knows that it is the only way to find true, soul-filling satisfaction in this world. He asks us to sacrifice because He loves us.

And Jesus, looking at [the rich young ruler], loved him, and said to him, “You lack one thing: go, sell all that you have and give to the poor, and you will have treasure in heaven; and come, follow me.”

And the rich, young ruler couldn’t. And neither can I. Yet, somehow in the letting go and asking for help, Jesus does the impossible and sacrifices through me – and I get to experience that joy that surpasses all understanding. It’s not fair actually. I definitely don’t deserve it. But I’ll take it :-)