One Year

Yesterday marks one year.  365 days from when my first symptoms began and changed my life forever.  It's very bittersweet.

These last 365 days have been some of the most terrifying, exhausting, heartbreaking days I've ever known.  They have also been some of the most beautiful, and I am humbled that God chose me to walk this journey as part of my story.  

I have been changed in a most extraordinary of ways, and have never felt Christ's presence more than I do now.

Today, as I watch the leaves begin to change, I will continue to fight.  To choose joy, even when I want to cry out in fear.  To choose love, because each day I have with my family truly is a gift.  

On the days when I am spent, when the toddler listens "with his nose" as we say and the baby won't settle, I will thank God for being healthy enough to be home with and caring for my babies.  I will remember all those nights in the hospital spent crying and wishing for the strength to hold my son...and I will choose joy.

At the end of the week when I have reached the end of my rope, I will greet my husband with a smile and a kiss, because there were so many nights I longed just to see his face, or receive a hug without flinching in pain.

When I don't want to go downstairs to get something because I just came from there, I will choose joy, and remember that only a few months ago I could not even roll in bed, let alone walk.

When I unload the dishwasher, or complete any other household task that I used to dread, I will praise God for healing and strength, because I celebrated the day I could lift a small plate.

I see now more than ever how blessed I am in this life, and I intend to cherish as much of it as I can.  There are still difficult days...days that leave me wondering if I am at the beginning of a relapse, or if I will someday lose the strength I have worked o hard for months to gain back.  But on those days I try very hard to remember just how far I have come this year...just how far God has brought me, and how He continues to show up in my life over and over again.  

Trusting Him with my life over and over again...I consider it nothing but joy.

"…And so we wait in joyful hope"

This summer has been one of such joy!  Simple days full of family and friends, both near and far.  New experiences and new appreciation for re-learned skills.  We're working on jumping (like an inch) in PT now!  Watch out, bounce houses…I'm coming for you! ;)

Our sweet girl is growing beautifully, smiling and cooing, and the little mister is going to be TWO in less than 10 days!  God is so, so good.  

After to many phone calls and a few backflips through red tape, I will be starting another round of IVIG tomorrow morning (yesterday, I started writing this a few nights ago).  As nervous as I am (why do I still get nervous?), I am also excited because this round of treatment will be done from the comfort of my own couch!  Praise God for home care!!  Instead of spending the week lonely, I will be having "coffee dates" with amazing friends who have offered to be my hands and feet this week while I'm attached to an IV.  I am so beyond humbled every time I sit and think about the angels God has placed in my life.  There are no words…you are each more of a blessing than I could ever possibly explain.  Thank you is simply inadequate.

Attending Mass with a newborn is a funny thing.  Just when I think we have prepared perfectly (the baby is fed, the toddler is in the nursery, we actually remembered the checkbook for the offering and our clothes are clean), little miss proves me wrong.  Between feedings, diaper changes, and where is that pacifier again, I'm not sure I have actually heard the homily in over a month.  As a result, I have been trying to really meditate on the phrases that I do hear.  

"…and so we await with joyful hope the coming of our savior Jesus Christ."

What a beautiful reminder.  Waiting with joyful hope…not anxiety or fear...sadness or doubt, but hope…joyfully.  

Living each day with hope, knowing that this world is not our home, that He has something more beautiful than we could ever realize waiting for us.  Even in the midst of suffering and pain, I take comfort this hope for a future with Him.  Consider this life nothing but joy, dear friends.  For God's desire is not a perfect life on this earth, but perfect peace resting in His will.

The Sacrifice of Family

- Today is my first time participating in the blog link-up with Blessed is She!  If you are looking for an amazing community of Catholic women and great devotionals, I really encourage you to check them out!  Today's #BISsisterhood topic is family. -

Nothing shows a person's heart faster than a crisis.  This is especially true if the crisis is a marathon, continuing for days or weeks with no end in sight.  God has placed people in my life with such a heart of sacrifice and service.  It is humbling, and inspires me daily.

My family.

They have made some of the biggest sacrifices in these last few months.  As difficult as this journey has been for me, it has been just as trying for them; the uncertainty, the fear, the exhaustion…they are warriors, too.  There are so many family members I could write about here, but today I will focus on my little unit; Thomas and Eli.

During my time away, my husband lost his wife.  The dirty dishes, the laundry, the moving boxes, the need for companionship and encouragement…they didn't end just because I was in the hospital.  So he sacrificed.  His time, his comfort (rest, home cooked meals, time for reflection), his needs, his sanity…he fought to keep our family going when our life as we knew it came to a screeching halt.  Watching the person you love become completely helpless in a matter of days is so frightening.  Carrying on and putting a smile on your face asks that you reach to the depths of who you are and who God is.  This fight begs for bravery you didn't know you had.  Thomas is my rock on this earth.  My lover, my best friend, my partner in this crazy life and the father of my children.  I would be lost without his amazing soul in my life.

Eli may only be 18 months old (HOW did that happen??), but he also had to sacrifice while I was away.  He lost his mama, and that breaks me.  I cried every day for him, and even when he came to visit, it was too painful to hold him.  He lost the mama that could lift him high and make him laugh, the mama who would sing the same set of songs each night before bed, and snuggle him just right.  He is a warrior too, and I will never forget that.  We are blessed abundantly, and Eli was cared for, played with and loved by family only a few minutes from the hospital.  My mother in law is a warrior, you guys.  She stepped in to love my little boy as her own without being asked.  She took him into their home (so Thomas could continue to work) for weeks, where he was close enough to come visit me easily.  There is no way to repay someone for that sacrifice.  I am blown away by her incredible heart of service and love.

There are so many others, family and "family" who have done SO MUCH for us in these last few months.  I wish I could take the time to acknowledge each of you here, but this post would become a book!  Please know with certainty that your amazing sacrifices have not gone unnoticed or without appreciation.  Someday soon, I will write a post about the amazing community of warriors I have found on this journey.  You all amaze me.

Thank you is not enough.  Those words will never be enough.  So I will choose joy, living each day like the gift that it is, and loving fiercely until He calls me home; which, God willing, will be many beautiful years from today.

"You have called me higher, you have called me deeper, and I'l go where you will lead me, Lord." - Called Me Higher, Sons & Daughters

There have been a lot of tears today. They are tears that I’m sure are exacerbated by pregnancy hormones, but tears just the same. Tears of loss.

I have lost so much of my identity in these last few months, but I am not without hope. I have lost my job, we have lost income, I have lost my independence and sense of adulthood. It is humiliating. It is humbling.

I have accepted the tears much more quickly than accepting help. But if I may have a moment of honesty, I am struggling. And so there are tears.

“You make beautiful things out of the dust. You make beautiful things out of us. You make me new, You are making me new.” -Gungor #CIDP #warrior #givemeJesus #awareness #spoonie #chronicillness

Pain. On of the many symptoms of #CIDP, and one that isn’t talked about. I am one of the fortunate ones who does not spend every moment of every day in pain, but there are still many things I cannot do without pain. I dread simple tasks like getting dressed, or getting in and out of bed. Still, I try to choose joy each day, and remember all the things I am able to do. I am blessed in this suffering; there is beauty that comes from it, goodness that comes from knowing that God sees me and has asked me to be a light in the dark. I pray every day that sharing my story helps just one person. This crazy life is a gift. “Consider it nothing but joy” #choosejoy #CIDP #chronicillness #awareness #spoonie

To the average person, this isn’t much to write about, but for someone with #CIDP its huge. This is the first time since September that I’ve been able to sit on the floor with my legs “crossed”. I won’t be able to get up without help, but being able to get my legs bent this far is such a huge milestone. Thank you to all the physical therapists and doctors that have made this moment possible, cheering me on and believing in me every step of the way. #choosejoy #chronicillness #ChronicInflammatoryDemyelinatingPolyneuropathy #spoonie #warrior

Everyone knows the best fashion accessory is a blood pressure cuff! #choosejoy #chronicillness #CIDP #spoonie

"Holy Spirit you are welcome here…"

The prayer on my heart today as I realize over and over my need for more of you, Jesus.  I fall to my knees, a weak and humble servant.  Use me, Lord…use me for your glory.

One of the things they tell you is that often with a life changing diagnosis, you will go through the five stages of grief. As prepared as I think I am for this reality, I never am. Having your body completely betray you day after day is so difficult. Making the decision to #choosejoy is never easy, and fighting for a normal life every hour is exhausting.

Holding onto my faith today knowing He is with me.

“You make beautiful things out of the dust.” - Gungor #chronicillness #CIDP #ChronicInflammatoryDemyelinatingPolyneuropathy #remarkablyrare #warrior

"Growing getting better you’re not the person they see
Can’t be mad at the things you been through cause they built your muscle
Now you’re stronger than you’ve ever been they can’t stop your hustle

Your faith ain’t never small that’s what brought you this far
See you got your dreams and you got your prayers and you got your God He gone take you there
See everybody has a season and I believe this one’s yours
Cause you been workin, waitin, this what you been prayin for

Go get it, go get it, Go get your blessing”

Happy mail today!! I fell in love with @remarkablyrare from the first moment I found them and read their story. Those of us with a rare disease and the friends and family who care for us are so beautiful and strong! We celebrate that we are fighters and #remarkablyrare!! #fighter #CIDP #chronicillness #choosejoy #ChronicInflammatoryDemyelinatingPolyneuropathy

Day 15/365 - today we are celebrating another small victory! Eli and I managed to go on a ten minute walk outside all by ourselves!! It does t seem like much, but after being unable to even roll over in bed, I realize I have come a long way. Today and every day, may God be praised. #choosejoy #CIDP #chronicillness #theeverydayproject #365daysoflight #mrbigcheeks

Not feeling so great today, but I still have #joy because I got to try out the “Hot Tator” that my mom got me! Cooks potatoes beautifully in the microwave, so I’m having a sweet potato and stuffing for lunch! #choosejoy #chronicillness #CIDP #projectblessed

One of the frightening things about CIDP is not knowing how I will feel on any given day. Some mornings, I wake up and wonder if I will have the energy to care for myself or Eli. But then I remind myself that God is in control, that I can do all things with Him, and that he’s told me time and time again not to worry. So today, I will drink my tea, meditate on His truth, and carry on. #CIDP #chronicillness #choosejoy #365daysoflight #theeverydayproject

Last year you were too young to care about the snow, but this year I was ready. We’ve been waiting all winter for snow to play in, and today it finally happened. I bundled you up in so many layers you look twice your size and could hardly walk, but I know you were warm. Watching you discover snow made my heart soar. You are my greatest adventure, little boy. I used most of my spoons to take us outside to play, but I’m so glad we have new memories together. #theeverydayproject #mrbigcheeks #spoonie #chronicillness #choosejoy #CIDP

New Year, New Normal

Being home from the hospital has been so wonderful in so many ways.  I am there when my son wakes up in the morning, and when my husband arrives home from work each day.  I am there to fix my family a real dinner (with two boys in the house that’s how we show love!), and to make sure they have clean clothes.  Thanks to my handy shower transfer bench, I’m able to shower and wear real clothes (no more hospital gowns for this girl!).  

Being home has also come with a whole new set of adjustments…I’m in a land of self discovery.  Before getting sick, I never thought twice about things like climbing the stairs, standing at the stove to cook a meal, or making the bed.  These were things I did as a housewife and mother to provide for my family.  

Now, they are things I need to chose between.  Do I make the bed or shower?  Do I cook a real lunch, or a real dinner?  Do I do the laundry, or clean the playroom?  I must choose, because my body will no longer let me do it all.  This is the life of a #spoonie.

The concept of counting spoons, or being a #spoonie was introduced to me as a hashtag on Instagram when I began following other people with CIDP.  I was of course confused, so I did a little research.  The basic idea of The Spoon Theory is this: each person with an autoimmune disease (or any illness really, but for simplicity’s sake…) starts the day holding a certain number of (imaginary) spoons.  Each task that they complete (getting dressed, showering, completing a morning routine like combing your hair and brushing your teeth, fixing a meal, walking up a flight of stairs, etc.) costs them one spoon.  Once their set of spoons is gone for the day, it’s gone.  If they attempt to use a spoon for something once they have spent today’s portion, it will come out of tomorrows set and they will begin tomorrow already short a spoon.  For the full story, read here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Now that I’m home and trying to live life the way I used to I can safely say that I too and now a Spoonie.  I now start each day with a set of spoons, and can only do that many things.  Once my spoons are gone, I have no choice but to rest, and have others do things for me.  This is particularly difficult when you have a toddler who doesn’t talk yet, and can’t understand why he has to walk himself to his room because Mommy just can’t carry him anymore.

It would be very easy for me to feel sorry for myself, and I do find a good therapeutic cry is sometimes necessary, but as often as I’m able, I choose joy.  I choose to be thankful for this new life, for this opportunity to let others serve me, and to find new ways to serve others.  I have a chance to find new ways to say thank you, new ways to say I love you, and new ways to be the hands and feet of Christ (usually from my bed, the couch, or my desk).

I do not have many resolutions this year…I would love to stay out of the hospital this year (except to welcome our baby girl later this spring), but other than that…

I have been doing a LOT of research about how to keep myself as health as possible, and will be beginning an elimination diet called AIP - it’s the autoimmune protocol for the Paleo diet.  Normally, I hate the idea of changing the way I eat…I love food, and most of the food I love isn’t the healthiest for me.  But when faced with making a lifestyle adjustment in exchange for potential good health…not much contest there.  If changing what I eat keeps me at home with my family, then it’s more than worth any cost or hardship on my part (though I’m pretty sure eating out just got really difficult).  If anyone reading this has heard of/done the AIP diet and has any recommendations, feel free to comment!

So my new normal includes accepting help even when I’m SURE I can do it myself (keep telling yourself that…), taking naps when my son does so I have the strength to make it to dinner time, having a MOUNTAIN of laundry (it’s not just a pile, trust me) when I can only do one load a day, needing to plan ahead when I go upstairs because I won’t have the energy/strength to go back down if I forget something, and having in home therapy (physical and occupational) four days a week.

My new goals include doing a one photo a day 365 project so my camera equipment doesn’t get dusty, learning how to hand-letter, learning how to make all kinds of yummy AIP recopies that 1) won’t put us in the poor house, and 2) can be done in the crockpot, and being OK with not being Supermom/Superwife anymore. Oh, and taking full advantage of using those cool electric carts in stores, and my spiffy handicapped parking sticker!

My body and mind are exhausted.  My heart has never been more full.

Welcome, 2015.

"Please take my life and use it, I’m ready." - The Rocket Summer

Making the bed (especially our California king beast) takes a lot out of me now thanks to my new buddy #cidp. Celebrating this #smallvictory by showing off our beautiful new setup! Feeling very #homegoodshappy with our Mr. & Mrs. Pillow! It used to live in my office, but I love the way it looks in our room with our awesome #IKEA pillows! Color makes my heart so happy. 😊 #choosejoy #chronicillness #awareness #invisibleillness

Words cannot adequately express how very humbled and grateful we are for the generosity of our friends today. You are truly the hands and feet of Christ and Thomas, Eli, and I are blessed to know you. Thank you from the bottom of our hearts for all of your amazing hard work; our house is finally a home (and we can finally see the floor)!! I will now return to the pregnant tradition of crying happy tears in awe of the amazing people in my life. Thank you all!!! #humbled #choosejoy #CIDP #chronicillness #theeverydayproject

"Awestruck we fall to our knees as we humbly proclaim, You are amazing, God!"

His JOY comes in the morning! 💕🙏 #choosejoy #chronicillness #CIDP

By @restorationhouse via @RepostWhiz app:
PROVERBS 31:25 | “…without fear of the future.” #choosejoy #chronicillness #CIDP #givemeJesus