~Joy in the Journey: A Work in Progress

The first eight months of this year have been hard.  Lots of challenging news, too much loss, and the healing aftermath.

I have not shared it all.  I’ve often been told I have a gift for words, but in this instance it just seems that I don’t have the words. And I’m scared to put it all out there.

It’s been weighing on me.  I think I’m supposed to share, like some of my heartache and suffering has a purpose and by putting them out there, they might achieve their purpose.

My birthday is in January.  The week of my birthday I realized I was pregnant with baby #7.  I was in shock and I was full of fear knowing the baby might have Duchenne.  I was scared to tell anyone because I didn’t want people to say mean things about being a known carrier and still following my faith. I heard so much of that when I was pregnant with Mary.  

I was a mess and it took me time to come to terms with it.  Eight weeks into the pregancy I went in for our first ultrasound and things were not right.  We lost the baby.  There is so much more I could say right now, but can’t. 

I never knew a loss like this.  I never knew the emptiness it could leave behind.  I never knew you could love someone you have never met so much. I feel guilty for not being excited right away.

 I think about the baby everyday. We would have welcomed baby #7 in September.  As we approach September, I have new aches when I see little babies and little baby outfits.  

After we lost the baby, I found out about my heart.  I’ve written about it previously so I won’t go into much detail.  The medicine I’m on makes it harder for me to keep up, I get tired more easily and if I over do it, I feel it.  It has affected the way I approach my days because I have to hold back to make it through the day.  I have to slow down.

During all of this we had started seeing a behavioral therapist for Rowen.  He sometimes has a hard time making friends.  He was easily upset by things our other children did not even seem to notice.  

I didn’t know if it was him having a hard time with his disease or if it was a side affect of one of the several meds he takes daily.  After months of assessments and therapy sessions, Rowen was diagnosed with High Functioning Autism Spectrum Disorder.  

Rowen has always had quirks and knowing that a small but significant percent of children with Duchenne have dual diagnosises I had suspected maybe something was up when he was younger. Although, until this therapist, most people did not see what I saw and I assumed I was just being an overzealous mom.  

The diagnosis was hard to hear.  I hurt for my kid because it was, is one more thing for him.  I just wanted something to be easy for him.  He has so much to deal with, I didn’t  want one more thing.

Late in April, my father-in-law started hospice and we lost him in May.  This is something no one can ever prepare for.  Things have improved, but my husband is overwhelmed with grief. He has to go through this process and I want him to find healing in his own time.  Grief is consuming and he has endured a busier than usual traveling schedule for work. My already full plate is more full.  I’m tired.

This all left me kind of scattered.  I spent the summer trying to pull everything back together.  I felt like I didn’t know how.  I was struggling to understand why.  I felt battered and like I’d been left alone to weather the storm.

But then the kids started school.  In preparation for school I was reading articles.  I came across the title of a homily, not the homily, just the title.  It was a homily by Archbishop Chaput and it said, “If you want to change the world, start with joy.”
I thought about it for days.  Then, I read a verse in Thessalonians that said, “Be Joyful always.”

Joy. The word joy keeps showing up in my life. At a time when I was focusing on my pain and my sorrow.  I read a quote from Mother Theresa that said something similar to this: sorrow is like a kiss from Jesus.  In sorrow we are close to Christ.

All of these signs.  All these things I was reading. The words that were standing out to me.

  I feel like Christ is reshaping me, transforming me. I feel like I was a living statue and God is chiseling away at the stone to make me something more.  He is breaking up the hard cement I held myself together with for years, to make me softer, more fluid, something capable of holding more love.

I’ve often looked at life as something I needed to survive.  Having been through some tough things as a child, I built a lot of walls to protect myself, to protect my heart.  Other than my children, most people have had to work pretty hard to break down the walls and be close to me.  

I liked it that way. The ones that might hurt me, wouldn’t bother with the walls.  I know it is not right, but I’ve been caught it survivor mode for so much of my life, I just stayed in survivor mode.

I’m not supposed to merely survive. I am supposed to live.  And to really live, love needs to abound.  God is chiseling away at the walls so that others won’t have to work so hard.  

I know life is going to be hard and more sorrow will follow.  But He’s telling me to seek Joy, to suffer with a joyful heart and he wants me to understand that sorrow brings me closer to him and that brings me joy.   

I’ve mentioned Mother Theresa before.  She has been in my life lately.  He wants me to follow her example, as she suffered joyfully.  And just yesterday I read this quote of hers, 

” If I ever become a Saint–I will surely be one of ‘darkness.’ I will continually be absent from Heaven–to light the light of those in darkness on earth.” 

I think she found me in my dark place and is lighting my light.

 I know I may lose my boys to Duchenne.  The thought of them being anywhere without me peirces my heart.  I kow that my baby, part of me, is in heaven and if any of my other children get there before me, a part of me will be there already.

Rowen.  I understand him so much better.  I can talk to him more easily.  I have answers and that makes me more patient with him. I can help him now. With just a couple months of therapy, he doing so much better.  He’s happier!

My husband will heal. When we get to the other side of this we will be stronger than ever before.  And his Dad will live on through our family.  He loved to say, “He’s not heavy, he’s my brother.’  I think he could see something in my children that reminded him of his sibling relationships.  That is a blog for another day.

My heart, my loneliness.  I’m getting softer.  The top of the walls are starting to fall.  I know I need more help, I have to accept it. I’m saying yes much more often to those willing to help me.  I’m opening up to people.  I have along way to go, and being joyful  always is a tall order.  But I’m committed to seeing this through and I will work hard to find joy in the journey.