A Not-So-Black Friday

Fitting very well into the Thanksgiving season, this Friday in our house was radiant with color.  No blackness here!  Today, for so much more than just quick moments and with very bearable pain, I was able to walk.  I was able to hold my babies.  I was able to write and paint and create.  I was able to love and serve in ways that come so naturally to me but have been outside of my reach ever since I developed CRPS.  And I could feel God's power and the prayers of His people giving me strength.  As I write, the more intense pain and fatigue have returned, but I'm still focused on what a glorious ray of hope this day has been!

While my condition has seemed to be moving rapidly on a downward spiral, my pain level earlier today was half of what it has been for the last six weeks.  The grace and power of Jesus have been so evident to us throughout my journey of wearing this life-altering disease, and today has been a beautiful and tangible example.

"..thanks be to God, Who always puts us on display in Christ and through us spreads the aroma of the knowledge of Him in every place," (2 Corinthians 2:14 HCSB).

CRPS is tricky when it comes to "good pain days."  Physicians advise surrendering to a moderate lifestyle, rather than pushing extra hard on the easier days, because the pushing can cause excruciating days afterwards.  This has been the first day that I have even been remotely capable of moving the way I did, and I'm going to have to learn, through trial-and-error, what "moderate" will mean for me.  I'm so thankful to have Sean by my side to figure it out with me (he would say that I tend to lean more towards the "error" than the "trial" side of things when it comes to doing anything in a moderate way).  We don't know what tomorrow looks like, but we won't waste time worrying about it.   Today, I got to use my legs.  I got to use my hands.  I am thanking God.  He is faithful no matter what the day carries.

If tomorrow comes with more physical strength, I will love and I will serve--whatever that looks like.  I will choose joy.  If tomorrow, I am in more pain and have less mobility, I will love and I will serve--whatever that looks like. I will choose joy.

To all of you who have been faithfully praying for me and for my family, thank you.  It's most certainly not in vain.  God is so good.  

"But He said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong," (2 Corinthians 12:9-10 NIV, emphasis mine).

I am thankful.

I am thankful.  

The CRPS is spreading.  Now, it is in my right hand.  In my dominant hand.  In my artfully-practiced-flipping-Sean's-eggs-in-the-pan hand.  In my painting hand, my drawing hand, my writing hand.  In my hand that holds the spoon when I feed my baby.  In my hand that writes ABC's on the Magnadoodle with my little girls.  In my hand that had just figured out how to make a little bit of life keep moving when my leg couldn't help me stand.  And it really, really hurts.  

I never knew the depth of what I took for granted until I started to lose so much.  

But I'm thankful.  Because God will be glorified.  Because of Who He is.  And I am humbled and honored that He chose me to carry this.  I long for Him to heal me on this side of heaven.  And if He doesn't, I truly believe that it's because He can do greater, more beautiful things, because of it.  "He says, 'Be still and know that I am God; I will be exalted among the nations, I will be exalted in the earth" (Psalm 46:10 NIV).  

Thankfulness does not say, "only if the path is easy."  Thankfulness does not say, "only if I am well."  Thankfulness does not say, "only if I understand."

Thankfulness relies on the God who is light to the path--He pushes back the darkness.  Thankfulness trusts in the mercy and the all-wise decisions of the Healer--He is able to do far more than anything I can ask or imagine, and He makes me well able to accomplish whatever plans He has for me. Thankfulness rests in the truth that God is worthy--that He deserves all glory and honor and praise--just because He is God.  

He doesn't change when my circumstances change.  Thankfulness acknowledges that the God Who brought Israel out of slavery in Eqypt thousands of years ago is the same God Who freed me from the chains of my sin and selfishness.  Thankfulness believes that the God Who called Mary to mother His Son and gave her the strength she needed to endure immense suffering is the same God who called me to mother my little ones and will give me everything I need to endure all of this.  Thankfulness knows that the God Who inspired the hands of the many writers who penned the Bible is the same God who speaks and breathes through it to guide me through each day.  

In the mundane and in the miraculous, in the minute and in the magnificent, He is the same God.  And He is my God.  


Without my God, I was dead; now I am alive.  No death can bring me down.  "Since, then, you have been raised with Christ, set your hearts on things above, where Christ is, seated at the right hand of God. Set your minds on things above, not on earthly things. For you died, and your life is now hidden with Christ in God. When Christ, who is your life, appears, then you also will appear with Him in glory," (Colossians 3:1-4).

Before my God, I was broken; now I am whole.  No brokenness now can break me.  "Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed," (1 Peter 4:12-13).

Apart from my God, I was lost; now I am found.  No wilderness can hide me or hold me or hurt me.  "Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword?...No, in all these things we are more than conquerors through him who loved us," (Romans 8:35, 37).

More than conquerors.  Thankfulness hears the voice of the faithful ones who have gone before me, who are now in eternity, worshipping God in all of His glory, wearing new bodies that will never feel pain or experience sorrow again, saying, "It's so short--this walk on earth.  You can do it.  Stand firm."

Getting this leg moving!

It's funny that I've been such a mover for the past twenty-nine years, and now I'm re-learning how to just walk.  It's amazing how quickly life can change.  Maybe my nine-month-old baby and I can have a race to see who gets on their feet first!  I've actually been able to take a few (very awkward) steps on my own this week!  I'm determined--and my therapist at Agape Physical Therapy has been incredible.

Here's a glimpse of my PT routine...

I spend most of my sessions in the underwater treadmill.  

The water is so helpful. There are jets around my legs that desensitize the muscles so that I can move with less pain, and the pressure and warmth of the water compresses my legs so that I can actually mobilize them.  I have rails all around me that I use to hold my weight in my arms as much as I need to.  The water is soothing and helps me, more than anything, to mimic the pattern of walking and do other exercises that keep my muscle memory active. 

Other times, I use the anti-gravity treadmill.

I wear a neoprene harness and get zipped into this treadmill.  Then, the machine inflates around me, weighs me, and zeroes the gravity beneath me.  There is a screen in front of me that shows what my legs are doing on the treadmill.  My physical therapist can adjust the percentage of gravity that's holding me down, from 0% to 100%.  This machine is more difficult for me than the underwater treadmill, because my leg doesn't have as much of that compression support around it that the water gives, but its still pretty amazing!

And, it wouldn't be a great physical therapy post without me giving you a little glance at the before-and-after... 

Here's before a session (cold and reddish skin from my knee down, with one or more toes being white and others purple):

And here is what it looks like after a session (splotchy, slightly swollen, and gray):

And after a different session (extra splotchy, extra swollen, and all the colors!):

This all takes a lot out of me, and I'm basically toast for the rest of the day after each session.  I know it's working, though, because I'm regaining flexibility and range of motion, and it's helping to reduce some of the skin sensitivity.  The pain has started to spread into my hips and up around my waist, and we will just add new PT exercises with each new angle that the CRPS throws at me. 

I'm so thankful that we have incredible medical advances like these. I'm also thankful for the process, because I know that God is carrying me through every step of this journey--comforting me, strengthening me, and shaping my heart as we go.  

AND, a huge blessing from this week is that one day, was able to hold Jack long enough for him to fall asleep in my arms. I haven't been able to hold him for more than a few minutes at a time so far, because of the pressure it puts on my leg.  It was SO beautiful to get to snuggle my baby!! 

So, here's to lots of physical therapy.   Here's to God's amazing love and power and plan.  Here's to my weakness constantly and so beautifully reminding me of how much I need Jesus.  And here's to choosing joy through the process!!

"But He said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me," (2 Corinthians 12:9 NIV).

Pruning hurts.

A lesson I've learned from gardening...

The most fruitful plants are the ones that I pay the most attention to.  They are the seedlings that I dig up from the dirt they have settled in and then I move them to wider spaces where they can spread out their roots. They are the vines with the leaves that I trim back carefully, making room for new branches to sprout.  They are the stalks from which I pull the fruit just as soon as it is ripened, clearing space for more fruit to grow.  They are the bushes that I allow to get buried in blankets of snow in the winter, because I know that they will come back to life in the warmth of late spring.

Cultivation.

What a terrifying thing to be uprooted and moved to an entirely new territory. How painful to be cut and trimmed.  What a shock to have good fruit pulled away from the arms that carried it.  How very cold and lonely and unpredictable the long season of winter can be.

Oh, my life.  I am that garden.  

When Jesus talks about being the Vine from which we grow, He explains the Father's cultivation process.  "He cuts off every branch in Me that bears no fruit, while every branch that does bear fruit He prunes so that it will be even more fruitful," (John 15:2 NIV).  

For years, I read that verse but never paid much attention to the word, "prunes." It seemed so safe. 

Then, last year, we had the craziest tomato plants in our vegetable garden.  From a $0.30 packet of seeds, these vibrant plants grew to be taller than me (I know--I'm not particularly lofty in stature--but they were taller, still!), and they went on to produce so many pounds of fruit that we had to remove perfectly good branches again and again, just to keep the stalks from collapsing!  In a matter of weeks, we collected well over 300 pounds of tomatoes from only a handful of plants.  It was incredible.  

We had to do a great deal of pruning.  Cutting off branches and leaves--even flourishing ones--to make room for more fruit to grow. For the good of the plants.  For the good of the harvest.

As it turns out, pruning hurts. The cost is high, but the gain is exponentially higher.

Jesus says, "I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from Me you can do nothing," (John 15:5).  He invites us into a life that produces beautiful fruit.  When we remain in Him. When we rest in His love. When we listen to His Words.  When we hope in His promises. When we trust Him for our very breath and for every step we take.  When He prunes us.  Because He knows so much more than we can see.  

Following Jesus costs our very life, but the life we gain is so much greater.  "I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord," (Philippians 3:8).

A beautiful friend sent me this message while I was in the hospital a few weeks ago:

"I was looking at my rose bush that I pruned back--cut back to almost nothing back in June--and praying for you--and seeing this afternoon how it blooms on tall, healthy, green stalks.  Jesus has cut things out of my life, but He has brought beauty.  He has taken away, but He has given.  He has sustained me as He will sustain you.  And there will be so much beauty.  I know it."

And here is what she brought to me, from that very bush:

Pruning hurts.  But the result is more beautiful than I ever could have imagined.  

So, in the arms of the wise and faithful and ever-so-loving Gardener, I will remain.  And I choose joy.

Before I Said a Word...

God awed me, yesterday, with the sweetest glimpse of His nearness and His care and His attention to detail.

I was on my way into physical therapy, with a Topsider on my left foot and just a sock on my right.  (We've been wondering if some great store will give me half-price on my next shoe purchase since I really only need the left one...)  It's fall in western New York, and the thermometer outside isn't going to be rising any time soon, so I was thinking that I needed to add "warm socks and soft booties" to my list of things to get.  It probably wouldn't be wise to risk adding frostbite to my purple toes!!

It was a passing thought. I worked through my physical therapy and forgot all about it.  

I forgot, that is, until the mail arrived, just as we got back home.  Inside an envelope addressed to me from a dear relative was a cheery card covered in sunflowers, along with a check.  The note said: "I hope you can buy some new fuzzy warm socks..."

It was mailed several days before.  Unbelievable.  Well, actually, it's totally believable: "your Father knows what you need before you ask Him," (Matthew 6:8 NIV).  What is this love, so richly poured out on me?! That He is so present, that He hears my heart and my thoughts and my voice, and He knows what I need before I even utter a word about it.  Gracious God--You are beyond amazing. 

Every moment.  He's right there in every moment.  Before every moment, even.  "Before a word is on my tongue, You know all about it, Lord," (Psalm 139:4 HCSB).

So, I got some fuzzy warm socks...

...and some soft, warm shoes that I can wear on BOTH feet when I go outside.  I hadn't even asked for them, and God provided. 

"And my God will meet every need of yours according to His riches in glory in Christ Jesus," (Philippians 4:19 NIV).

The Diagnosis, Part II

Two weeks ago, we left the hospital with two very different diagnoses: Complex Regional Pain Syndrome (CRPS), and an AVM in my upper leg. The problem with these two diagnoses was they were seemingly unrelated, which didn't make sense in conjunction with my "injury" (for anyone who needs a reminder: I rolled my ankle walking on flat ground. Yes, I'm that graceful).

To add insult to injury (pun intended), the treatments for each one can aggravate the other.

This morning, we saw a new and very highly recommended vascular surgeon to get a second opinion on the state of my arteries and veins. This doctor was wonderful, and it was such a gift to get to be seen by him.

After multiple ultrasounds by this doctor and his team, they found no vascular abnormalities in my leg.  He said that the CT scan from the hospital that had shown the AVM was incorrect due to a timing error in the dye that they injected into my bloodstream.  

So, no AVM.  No artery problems.

However...


He also re-confirmed that I have CRPS and explained that the discoloration in my leg is coming from spasms in the nerves that cause the blood vessels in my leg to get angry. This is just one of the many strange symptoms of CRPS/RSD.  It is why sometimes my leg is a bluish-purple color, sometimes it is an orange-red, sometimes it is bone white, and other times it's a blend of all three, which makes it look almost gray (I do dream in color!).

It's definitely comforting to have one firm diagnosis, instead of two diagnoses with no explanation of their connection to one another, so for that, PRAISE GOD!  And with all of the many people who have been praying for us, all of the credit goes to God for giving me whole and healthy arteries!!

To be honest, I was kind of hoping that we would go in this morning and find out that I would be able to have some sort of vascular surgery that would take six weeks to heal and then I would be pain-free and walking again.  It would been so insignificant.  So short.  So...medically fixable. wouldn't have been life-long pain, likely to spread through my body, often resulting in permanent loss of function, having no cure...

But, insignificant, short, and medically fixable wasn't what God had in mind.  And I trust Him.  I will praise Him in it.  He will be glorified.

Without the presence of vascular issues, I was cleared to use the coolest machine ever at physical therapy...the UNDERWATER treadmill!! It's amazing--it's like being in a bathtub with water jets and being on a treadmill at the same time! This is going to be a HUGE aid in helping me work through the pain to keep the muscles and bones in my leg alive so that if and WHEN I go into remission, I will be able to use my leg.

So, where so we go from this point?  

They will continue to increase pain medications, to help manage the pain from the CRPS, as my body adjusts to them. I will continue in rigorous physical therapy to keep my muscles and bones from atrophying while I can't use them.  I will be getting a nerve block (kind of like an epidural, through an injection directly into the nerves in your spine, except that it lasts for 6-12 months) within the next two weeks, to help me work through the pain. 

And we will keep on "running the race" (insert my adorable husband making a joke about how I'm not actually running so that I can keep laughing through it all...), and trusting God, and praising God, and surrendering each moment to Him.

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." (Ephesians 3:20-21 NIV)

Why I'm Not Asking "Why?"

I wonder what I would have thought, when I was studying dance in college, if someone told me there would be a day when I wouldn't be able to walk.  A day when I would have to process the possibility that I might not regain the function of one of my legs.

I wonder what I would have thought when I walked down the aisle with Sean, if you told me that there would be a day when we wouldn't be able to walk around Jordan Pond in Maine or hike up Rocky Mountain in the Adirondacks or dance in our kitchen while we made dinner together.

I wonder what I would have thought, in September, as we effortlessly piled our adorable little ones into baby carriers, if you had told me I wouldn't even be able to pick them up in my arms and hold them in October.  I love to hold them.

I grieve the loss, whether it ends up being temporary or permanent, of my ability to move freely and without pain.  I grieve the loss of what was, so very recently, our beautiful normal.  I grieve the loss of what was consistent.  I grieve what this means for so many of our dreams.  I grieve being able to drive and think clearly and multitask.  I grieve being able to do daily tasks like clean the house or shop for groceries or organize the playroom or make a meal.  I grieve being able to dance and teach at the studio.  I grieve when I could run out the front door to jump into Sean's arms when he got home from work.  I grieve when I could nurse my baby and pick him up and just hold him.  I grieve when I could give the girls double-piggy-backs during the day and when I could lay in their beds and curl up and snuggle with them at night.

And it's hard.

A lot of people have asked me how I could possibly be choosing joy through all of this.  Well, here's the thing:  disappointment in my life does not give me reason to doubt God or to be so bold as to be angry with Him.  Disappointment gives me a desperate need to trust Him all the more and to cling all the more tightly to His loving arms.  So, while it could be tempting to dwell on what I've lost, I'm not asking, "Why?"


I'm not asking why--because God is constant.

"Jesus Christ is the same yesterday and today and forever," (Hebrews 13:8).

I'm not asking why--because God is good.

"The Lord is good to all," (Psalm 145:9).  "The Lord is good and His love endures forever," (Psalm 100:5).  "You are good and what You do is good," (Psalm 119:68).

I'm not asking why--because God is Sovereign.

"He says, 'Be still and know that I am God; I will be exalted in the nations; I will be exalted in the earth,'" (Psalm 46:10).  "In their hearts humans plan their course, but the Lord establishes their steps," (Proverbs 16:9).


I'm not asking why--because God will never forsake me.

"The Lord Himself goes before you and will be with you;  He will never leave you nor forsake you; Do not be afraid; do not be discouraged," (Deuteronomy 31:8).


No, I'm not looking down. I'm not asking, "Why?"  Instead, I'm looking up.  Instead, I'm asking, "Who?" God, show me more of You.  God, show me Your glory.  God, show me Your heart.  God is compassionate. And kind. And slow to anger.  He is full of mercy and grace and tenderness and love.  He is wise, and none of this is a surprise to Him.  He is in control, and He is good.  And...He's not just good.  He is good to you.  He is good to me.

My circumstances can change.  My plans can change.  My dreams can change.  My relationships can change. My health can change. My life can drastically, radically, painfully change.  But the reason I am living this life is for the glory of my God, and no matter what else changes, He will never, ever change.  He is always consistent.  My hope is in Him.  My peace is in Him.  My joy is because of Him.



I love this song that we sing at church called, "Not for a Moment," by Meredith Andrews.  You can listen to it here: 

https://www.youtube.com/watch?v=qoh26pC2RT8  

It's Easy to Feel Helpless

Have you ever felt helpless? 

As I lay here, my mind reels through some of the things I love to do that always made life move from day to day.

It's easy to feel helpless. 

I'm the wife. To that handsome man who dances with me in the kitchen and wraps his arms around me while I daydream with my hands in a soapy dish-filled sink. I love folding his laundry just the right way. I love pouring his coffee and baking him the biscotti that he loves to have with it. I love hearing him pull in the driveway after work and running to push the button to open the garage door for him and timing dinner with the moment I know he'll be walking through the door. I love seeing his face later on, when I walk in the door after a long night of teaching dance, when he is so excited to tell me about the great story he told the kids when he put them to bed. I love getting out for dates and walking on the pier with him and holding his hand. And I love serving him--it brings such joy to my heart.

I'm the mom. To these three beautiful little children. I love to carry them and snuggle them and lay on the floor with them and dance around the living room with them. I love making them sandwiches shaped like the boats that take us off on crazy adventures in the fantasies we create when we dress like princesses and pirates. I love taking them outside and burying them in leaves and helping them cover the driveway with beautiful chalk murals about the Bible verses we're memorizing together.

I'm the friend.  The daughter.  The sister.  The aunt.  I love hugging.  I love putting my feet on the coffee table and sharing time together to talk and listen and study and plan. I love making meals for people and surprising them with little things that might make them smile. I love hiking with a baby on my back and making sandcastles and snowmen and teaching people how to perfect a grande jete. I love standing and singing songs to praise my Savior. I love serving and giving and playing. 

And here I am.  Faced with finding a new normal.  It's easy to feel helpless.  

I catch myself saying to almost everyone who comes through the door, "Can I get you a cup of coffee? I mean...can I...direct you to where you'll find a cup of coffee?" So I laugh. Because I really can't get them a cup of coffee. And because the whole reason these beautiful, big-hearted people are here right now is to serve me and my family.  They're here to love on us and to help us navigate this new normal.

It's easy to feel helpless.  Two weeks ago, I could do all of those things with ease. Two weeks ago, something in me thought people depended on me to make life move from day to day.  Something in me thought I could make life move from day to day.

I want to give back.  I want to pour that cup of coffee. I want to cuddle that baby and run around with those little girls. I want to make that dinner and fold that laundry and teach that dance class. I want to serve at the church and drive to the playdate and dance with the handsome man who now has to carry me into the chair that helps carry me.

So, how do I keep the smile? How do I choose joy when, all of a sudden, I can't love people in the ways I know how to love them well? How do I choose joy when I can't serve in the ways I love to serve?

I'm filled with joy because I know that I was helpless, but I am not anymore.  I was helpless before Jesus rescued me.  He is my help, my heart, my hope, my stability, the very ground beneath me, whether these legs can walk on it or not. "Because you are my help, I sing in the shadow of your wings," (Psalm 63:7 NIV).

I hear His voice--the voice of the One I love--the voice of the One who loves me with the highest, deepest, longest, widest love. He reminds me that I am not the one who makes life move. He is. I am just an instrument.  "For in Him we live and move and have our being," (Acts 17:28, NIV).

Any love with which I can love--it is His love. Any gift with which I can serve--it is His gift.  "I became a servant of this gospel by the gift of God’s grace given me through the working of his power," (Ephesians 3:7 NIV).

Jesus is love, and nothing can separate me from His love (Romans 8:39). So, there is NO way that any disease or trial or lack can keep me from loving. He will love through me if I let Him teach me new ways to love. He is the servant of all. He will serve through me if I let Him teach me new ways to serve.  And at the same time, I get the beautiful privilege of being a part of something so much bigger than me--something in which so many other people get to use their gifts to love and to serve!!

It will look different, but it will be glorious.  Because no matter how my circumstances change, my God does not change.  If I fix my eyes on Jesus, I can find joy through the pain.  He helps me to choose joy when this breath-of-a-life is heavy and hard. He truly is my joy, and He always will be. If I set my heart on what lasts forever, I never forget that today is just a moment--just a tiny piece of something so much greater.  And I have the greatest Helper.

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal," (2 Corinthians 4:16-18 NIV).

Patience with Joy

"And so, from the day we heard, we have not ceased to pray for you, asking that you may be filled with the knowledge of His will in all spiritual wisdom and understanding, so as to walk in a manner worthy of the Lord, fully pleasing to Him, bearing fruit in every good work and increasing in the knowledge of God. May you be strengthened with all power, according to His glorious might, for all endurance and patience with joy..." 

(Colossians 1:9-11 ESV)

The Love Surrounding Us

We are unbelievably humbled and in awe of the love and blessing that has surrounded us in this time of trial. There are so many people to thank.  So many people who have loved on us, cared for us, sacrificed for us, given to us, stayed with us, prayed with us, and prayed for us.

My husband is amazing.  I can't even begin to describe how much he has done and is still doing to make life continue happening--sleepless nights, hours of phone calls coordinating meals and rides to the doctor and visits and care for our children while he's at work, not to mention everything he does to take care of me and the kids. He is so thoughtful and attentive.  He is kind and caring. He has worked incredibly hard to convert the house into a place that works for me to get around in and be present with the kids--he even moved our bed down to the living room since I can't climb stairs. He is a constant source of love and joy and laughter and prayer and help and strength and trust. And he is so incredibly encouraging to me.  I am so thankful for him.

My parents and family have been a huge source of strength, constantly praying for us, encouraging us, sending beautiful flowers and practical help and fun projects to do with the kids, and planning trips to come from Maine as soon as they are able.  

To both of our parents and siblings and extended families and church and community group, for all of your love and thoughts and prayers and care--we love you and we thank you.  

One incredible friend has spent many nights here with our kids during our hospital stay and have up time with her own family to love on ours in such a tangible way. She has also been sacrificing incredible amounts of time coordinating a meal train for us, and working with Sean and another amazing friend to keep a schedule where people can sign up for time slots to come here during the day to help with the kids and with keeping up the house.  Thank you.

Loving friends and family have blessed us with financial gifts that are helping so very much since I am unable to work. Thank you.

One amazing friend spent hours and hours with me in the hospital immediately after already having worked two night shifts in a row. She even gave me a much needed sponge bath. Now, THAT is friendship! Thank you.

Another friend packed care bags for us, spent many late, late hours with us again and again in the hospital, and took our kids on fantastic adventures. Thank you.

Wonderful family and friends have sent the most beautiful flowers--they so brighten up the house and I love thinking of you when I look at them. Thank you. 

Another friend is giving up so much time to drive Ava to and from school--and Ava loves it!! Thank you.

Dozens of people have made delicious meals for us and even more have signed up on the Meal Train to make future meals. Thank you for going out of your way to bring them all the way out to us and for the wonderful gift it is to not have to worry about dinner at the end of the day (or even lunches with all of the great leftovers!!). Thank you.

So many people have sacrificed time and energy to come to our house during the day while Sean is gone, to help with the kids and with keeping the house.  The same goes for all of the people who have been bringing me to all of my appointments with doctors.  Thank you.

So many have offered prayers and have called and have sent encouraging letters and messages and cards and books and Bible verses. Thank you for sharing your hearts.

Numerous people have purchased groceries for us.  So many thanks. 

Some of our friends knew that the dairy and soy allergy-friendly formula that Jack would need, since I could no longer nurse him, was very expensive, and they offered to buy his formula for us. What a beautiful blessing! Thank you.

We're feeling God's strength in undeniable ways. We grieve a life that felt so much easier before, and we trust the One who will carry us through what lies ahead. He makes beauty from ashes.

And I am thanking God for everything that He has prepared for us in the days ahead, because He doesn't say to just give thanks when everything goes well, or when we are healthy, or when life makes sense, or when we feel like we have control over our feet as we trek through this life; He says, "Rejoice always. Pray continually. Be thankful in all circumstances, for this is the will of God in Christ Jesus for you," (1 Thessalonians 5:16-18). And that is what we are determined to do. Thank you all for walking this road beside us.

Prepared in Advance

I am fascinated by the ways that God works, and by how beautifully He prepares us for what is coming. Seven days before the beginning of my diagnosis, before I had any pain at all or any idea about the radical turn our life was about to take, here's what I wrote in my prayer journal:

"Love The Lord with all that you are and remember how much He loves you. Do not be afraid of suffering--remain faithful and overcome. . . 

'You are worthy, our Lord and God, to receive glory and honor and power, for You created all things, and by Your will they were created and have their being,' (Revelation 4:11)

. . . Jesus, keep me faithful. Protect me and my family. Make us overcomers for You. Help us to love You, to patiently endure, to remain faithful! I will follow You wherever You go!"

And here we are today. With a painful disease that has no known earthly cure, and a diagnosis of a very different life than we ever could have imagined. Here we are, held in the arms of our Savior, Who remains faithful, Who endured the ultimate pain for us, Who loves us with an everlasting love. Here we are, determined to remain faithful, to patiently endure, to love with all that we are. Thank You, Jesus, for preparing our hearts ahead of time. You want us to be overcomers, and You equip us with everything we need.

"And my God will supply every need of yours according to His riches in glory in Christ Jesus," (Philippians 4:19).

The Diagnosis

My husband always says that dancers are the most graceful people on stage and the clumsiest people on the ground.  

Not one to try to prove him wrong and shatter his confidence, I rolled my ankle two Sundays ago. Walking. On flat ground.

As a dancer and dance teacher, I am quite familiar with my feet and legs.  When I couldn't bear any weight on my right foot, but there was no swelling, I assumed that I had just injured a ligament or tendon, and I limped on until Tuesday morning.  I paid a visit to my primary care physician to play it safe (I need these feet for my job, and balancing three little munchkins on my hip while hopping on one foot was quickly exhausting my good leg).  The doctor said that it looked like I had torn a tendon and ordered x-rays to rule out a minor fracture, but while I was in the office, my leg began to turn uniformly purple from hip to toe.  I began to feel (and haven't stopped feeling, since) as though ice was being poured through the veins in my leg.  The doctor affirmed that the exterior of my leg matched what I felt on the inside: as cold as ice (can anyone else hear Kristoff from Disney's Frozen echoing his words?).  Strange.  So, he made me a follow-up appointment two days out.

We call this zombie-leg.  And this photo was only the beginning.  You're welcome.

By Thursday evening, the pain in my leg had increased exponentially, and the odd color and temperature remained.  My bones ached, my skin was chilled and felt like pins and needles, my tendons and muscles felt like they were being twisted, and my knee felt like it was on backwards.  Sean helped me hop painfully into my follow up appointment, and when my PA looked at my leg, she told me that we were going to need to head straight to the Emergency Department.  This had the makings of something much worse than a minor ankle injury.

The idea of leaving our four-year-old, two-year-old, and 9-month old baby at home with a sitter overnight was the most difficult thought on my mind as we headed towards the hospital.  I had only been away from the older two once at night, and I had never left the baby, who was still nursing.

At the ED, I was seen by two nurses and one of the residents, none of whom could locate a pulse in my right foot.  I had a venous ultrasound, an arterial ultrasound, and a CT scan.  The tests found an abnormal wave running through one of the arteries in my right leg, and what they suspected to be an AVM (arteriovenous malformation) in my upper thigh.  The attending physician said that this was beyond what he deals with in the ED, and we were discharged at 7:00am on Friday, with instructions to "come to the Emergency Department immediately if your leg turns purple in color or begins to feel cold."  These were odd instructions, considering that my leg was purple and cold the entire time we were there, but we were at least excited to get home to our kids.

At home, my pain worsened and my toes turned from purple to snow white.  Worried that I might lose my leg altogether, we called a good friend to watch the kids again and then we headed back to the ED, this time in an ambulance. 

Within a few hours of arriving, I was admitted to the observation floor.  I remained in the same bed there for the next three days and nights.  I was seen by vascular surgeons, neurological surgeons, orthopedic surgeons, and physical therapists.  I had a second CT Scan, more x-Rays, an MRI, and lots of bloodwork. 

Finally, my diagnosis was confirmed.

First of all, I have an AVM somewhere in my upper thigh.  It's a connection between the artery and the vein that's not supposed to be there.  The artery spills oxygenated blood into the vein, and it causes congestion of blood to the area beyond it and can cut off circulation. They do not believe that this AVM is life threatening at this time, but should that change, I will need a very invasive surgery with, according to the vascular surgeon, "lots of cutting and muscle damage" because of its location.  The prayer is that the AVM will seal on its own, which is not unusual for an AVM to do.  We found out last week in a final report from Vascular that one of the three arteries in my leg is not functioning at all.  We will know more about that after an appointment this coming week where they will do a full ultrasound of all of the veins and arteries in my body.

Secondly, apparently unrelated to the AVM, and on a much more life-changing scale, I was diagnosed with Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD).  It is an extremely painful neurological disease, and it has no cure.  On a medical pain scale of 1-50, CRPS patients experience a constant 42.  Here is an image to give some perspective:

CRPS is typically is set off by a minor injury or trauma (like rolling your ankle).  It starts in one area of the body such as a limb, and can spread throughout the entire body.  CRPS is expected to worsen with time.   If treated early enough, it can into remissions, or possibly in cycles of remission (i.e. three months on, three months off). The brain tells the body to stop using whatever part of the body is in pain, and, as a result, the bones and muscles begin to atrophy, often resulting in permanent damage and loss of functionality.  The effects of the disease can be potentially lessened by constant physical therapy and pain medication to work through the pain and keep the body moving so that if the disease goes into a remission, that part of the body can still function.

I currently can't walk, and can only sit upright for an hour or two at a time.  I am unable to drive, and we don't know if I will ever be able to drive with my right foot again.  I cannot be in a standing position for more than a few minutes at a time, because of the immediate congestion of blood to the leg.  My physical therapist has me taking approximately ten steps an hour with crutches, putting less than 10% of my weight onto the right leg.  I have to spend most of the day right now laying down and elevating my leg, and I have a wheelchair for the rest of the time.  I can't lift up my kids, or play with them on the floor.  I had to stop nursing Jack because of the necessary medications.  (After six days, he began taking a bottle and formula like a champ, praise God!). Sean is absolutely amazing, and has been working incredibly hard to take care of all of us.  We've been surrounded by love and blessing and help from family and friends and the church in unbelievably beautiful ways (more to come on all of this in another post).

Because we caught the CRPS early, we will hopefully be able to minimize permanent bone loss and muscle damage through therapy.  And God is good.  I trust Him, and I will choose joy.  Because He is joy.  I know that He loves me, no matter what is happening.  I love how Job puts it when he is suffering, "Shall we accept good from God, and not trouble?" (Job 2:10b, NIV).  I know that I can do all things through Christ, my strength, and that my husband and kids can, too.  I know that God knows, and will supply, exactly what I need (Philippians 4:19), and what my husband and kids need, so I don't have to worry about how this is completely changing my ability to take care of them and do life with them.  He loves them so much more than I ever could.  Life is going to look different, and my God will be glorified!  We will pray for healing, and we will still praise Him if His desire is that we walk through this, instead of out of it, for His glory and our good.  He will be our strength.  Our hope is in Him.

"And we know in all things that God works for the good of those who love Him, who have been called according to His purpose" (Romans 8:28).