Oh How I Need You

I have been singing/praying this song all week.  Jesus let this be my testimony, may I find you in my seeking and doubt.  Please shine through me, may my life truly be for Your glory…oh how I need you.

Oh How I Need You - All Sons & Daughters
"Lord I find You in the seekingLord I find You in the doubtAnd to know You is to love YouAnd to know so little elseI need YouOh how I need YouOh how I need YouOh how I need You

Lord I find You in the morningLord I seek You everydayLet my life be for Your gloryWoven in Your threads of graceI need YouOh how I need YouOh how I need YouOh how I need You

Light, glorious lightI will go where You shineBreak the dawn, crack the skiesMake the way bright before meIn Your light I will findAll I need, all I need is You

Oh how I need you"

The Journey So Far

It took MUCH longer than I anticipated, but I am happy to report that my About Me page is no longer blank!  Want to read the whole story (so far) about my CIDP journey (with never before seen totally honest pictures)?  Look no further!

http://relentlessjoycidp.blogspot.com/p/about.html

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

Using Our Gifts

Sometimes I feel like Jonnah in VeggieTales.  God's calling him to go to a place he isn't comfortable, so Jonnah tries to travel the other way, while (of course) singing "LA LA LA…I CAN'T HEAR YOU!".

Yep.  Been there.

But when you do finally choose to answer God's call, whatever it is, something wonderful happens.  Souls are saved.  People are brought to Christ.  And the world is just an all around better place for you having followed His plan.  Kinda makes me wonder why we don't just do it His way the first time…but we are human.

So in the weeks prior to my long hospitalization, I felt God calling me to community with other moms.  I am part of a few moms groups, either through the hospital where I delivered, or just through good friends.  They are each lovely and I'm SO grateful for them, but my heart was longing for something more.  I wanted to join a Catholic moms group.  I searched and searched, and couldn't find much of anything for young Catholic moms out there.  How can that be?  There were at least 15 other couples in our baptism prep class, who all (prayerfully) have children the same age as my son.  Where are they?  Are they lonely, too?

As I stood in the back of mass each week with a toddler that wouldn't keep still, sharing knowing glances and smiles with other moms, God made something very clear.  If I wanted an amazing group of Catholic mamas to share in this journey of motherhood with me, I would have to step outside myself.  I would need to "take chances, make mistakes, and get messy" as Ms. Frizzle would say…God was calling me, and I was afraid.

"But, God…" I would think to myself, "surely someone else has already created an amazing network with a fantastic website and tons of activities that I can just show up to…you don't really want me to start something myself, do you?"

The short answer? Yes, yes I do.

Gulp. (Cue the shaking and sweaty palms that accompany being picked last for teams in gym class)

But what if no one joins?  What if I set everything up and end up sitting alone in Starbucks staring at my phone pretending to have a really funny conversation with someone via text? (anyone been there? no? just me?)

"But what if you're NOT alone? What if there's a whole community of moms out there just dying for someone to stand up and say 'let's be friends', 'let's walk this journey together'?"

"As each has received a gift, use it to serve one another, as good stewards of God's varied grace." - 1 Peter 4:10

Here I am, Lord.  I will go.

It is with awesome excitement (and severe anxiety) that I share with you the first steps in answering God's call to fill this longing in my heart: Catholic Moms of Montgomery County!!

I am teaming up with an amazing mom at St. Rose of Lima who had the same dream I did (I see what you did there, Lord) and working to expand the small play group at our home parish.  Catholic Moms of Montgomery County is a group for Catholic moms with little ones who are looking to fellowship and connect with other moms raising their little ones in the church.  With a combination of play dates, prayerful events, moms night out, and online support, it is my hope that the group will grow and be used to give God glory through this vocation and sisterhood of motherhood.  The group is open to moms from any parish in Montgomery County, Maryland.  I can't wait to see what God does with this ministry!!

Here are the two groups to join if you want to get involved:

Our Big Tent site with our calendar of events (you must create an account to RSVP):
http://www.bigtent.com/group/catholicmoco

Our closed (private) Facebook group/Online community:
https://www.facebook.com/groups/1583762851866652

I would LOVE to have you join us! You are not alone; whether you need a listening ear, a shoulder to cry on, someone to encourage you, or someone to celebrate with you…welcome.

Here's to taking the plunge, and using our gifts.  May God be praised.

Grateful for Your love

Yesterday we got almost a foot of snow. Today it was 45 degrees (beach weather!) so this happened...

The first time it snowed this year, I was laying in a hospital bed unable to move. I could barely see the snow from my position in bed, and I remember crying thinking that all I wanted was to play with my son and watch him discover the beauty of winter; a season I cherished when I was young.  It has snowed a few times since that day, but I was still not strong enough to bundle us up and head outside.  Each time I wondered if that was the last snow of the season, if I had missed my chance to make memories with my boy.  But God is so faithful, and hears our cries, no matter how small.  He blessed us with this beautiful day, warm enough that we didn't need hats, but cold enough for a big blanket of soft white snow.

Today, I was strong enough.  It was warm enough.  We are all healthy enough.  Memories were made.

Thank you, God, for the gift of today.

My body is tired, but my heart is so full.

Today…I cried tears of joy.  May God be praised.

"You chase us into the dark and Lord we're grateful, oh we're grateful
You captured our hearts with Your love, oh Lord You're faithful, you are faithful
We're grateful for Your love" - Ellie Holcomb

An Update and Fresh Look!

Hi, friends!  A lot has changed since my last big update, including this blog!  Welcome to the new home of Relentless Joy!  I am SO excited about this beautiful new template, and to be set up with my good friend Blogger, whom I'm much more familiar with.  One big logistical change I'm loving is now readers can comment on what I write!  I am super excited to be able to interact with all of you wonderful people out there on the internet. :)  I'm hoping that this change will make my blog slightly more accessible to everyone, and give people a way to reach out even if we've never met.

So, about that life update…

Things continue to go relatively well; I am reminded each day of my limitations, which continues to be humbling.  Many have asked how I'm feeling, and it's actually slightly difficult to answer.  My usual response is something similar to "today is a good day" since my condition can change literally overnight.  I am certainly much stronger than when I was in the hospital, but am still struggling with muscle weakness.  I feel it most when climbing stairs or moving from standing to sitting/vice versa, but any "big" movement is a reminder that I cannot physically do what I once could.  And most days, that's ok.  I've accepted it as much as I'm able today.  I've been dealing with a pins and needles feeling on one side of my back, which tests my patience, but I know it's part of the neuropathy with CIDP.  My blood pressure continues to remain an issue (it's too low, too often), but I have medication that helps bring it up which allows me to function without blacking out - a great thing when chasing a toddler.  Praise God for helpful doctors!

I still get tired easily, but it's getting better.  I was able to go to the mall and walk around for a bit (under an hour) for the first time since September…it was a great day!  Doing little things like that help me feel normal again.  I try to do one "new" thing a week; it helps keep me joyful and appreciative of the everyday.

I finally had my first followup with my neurologist since being hospitalized, and it went well!  She was pleased with my progress, and listened as I explained my current symptoms.  Dr. L wants to redo the EMG/Nerve Conduction Study to compare it with the one from December.  I'm interested to see the comparison, but not so excited about the test.  It's not as bad asa spinal tap, but it's still fairly uncomfortable.  Still, I know how important having up-to-date data is, so I'm happy to undergo the test. We have also decided since I am still having symptoms to do another round of IVIG- this time as an outpatient!  I'm excited to see if this treatment combined with my continued PT will get me closer to 100%, at least for a little while.  Dr. L is also hopeful that if we do another IVIG treatment that I might not relapse after baby #2 is born (relapse of CIDP is common in the weeks postpartum)…but I won't hold her to that. :)  It will be the same 5 day treatment I received in November/December, and will take about 6 hours each day.  I expect there will be lots of blogging and reading that week!  Dr. L also gave me an order for outpatient physical therapy…I'm hoping to start that ASAP once I can figure out what to do with Mr. Big Cheeks.

All of this coupled with my chiropractor appointments (thank you, pregnancy - 3x a week initially), and OB appointments (both with my regular OB and a high risk OB) means I go to a LOT of doctors appointments.  I'm becoming an expert! MBC was feeling a bit left out, so he decided to get an upper respiratory infection and a double ear infection back to back.  The pediatrician's office is much more cheerful!

But the good (ok, great) news is that I was finally cleared to drive!!  YAY!!!  One more step towards independence…God is so good.

Lent could not have come at a better time. It's so cold outside that we have been homebound for too long, leaving room for loneliness and depression to set in.  Lent is the perfect time to really dive into God's word and renew my spirit.  I am thankful for this season of reflection, longing, and prayerfully - change.

Speak, Lord, your servant is listening.

"In the silence of the heart, You speak." - @audreyassad #ashwednesday #catholic #projectblessed

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

Our car has been temporarily replaced with a lime. In other news, guess who’s finally been cleared to drive?? #choosejoy

Honest Moment

Can I be honest?  I do not think in sunshine and roses and rainbows all day long.

I still have nightmares about being in the hospital.  The care was wonderful (for the most part), it wasn’t that.  I can recall, in too vivid detail, every moment of my signal tap.  Every moment in the hours that followed.  The pain that wouldn’t stop, and doctors could do nothing about.  The devastation of lack of conclusive results from that test.  The tears from fear over an MRI, the panic attacks in the machine, being told that a second MRI will be needed.

If I’m being honest, I still have nightmares and wake up in tears.

And that’s ok.

It’s ok to be honest, to admit to your human-ness…to be broken.  

To let Him be your strength.  To let God carry you.  To say, “please take this from me”

But not my will…let Yours be done.