I’m living a life full of experiences that have left me on my knees asking why, crying for answers, just wanting to understand.

Answers don’t always come in pretty packages.  Sometimes there are no answers.   Every once in a while, they come just as you expected them to look.  More often for me, they are not at all what I thought, but exactly what I need.  They sometimes bring more questions.

When I was a little girl and I wanted to be loved and safe. I didn’t think my prayers were heard.  I never imagined He needed me endure so that some day I would be strong enough.

As a young woman, I wanted to be independent, do things all on my own because I didn’t know how to trust anyone else.  My answer was not an independent life.  My answer was a love that would teach me to trust.  God gave me a man to love and to be loved by, to laugh with, to cry with, and to share all of life’s ups and downs with.

After too few years of living without Duchenne, it entered my life with a big bang and turned it upside down.  

I thought I had already lived the hard part of my life. I thought I knew about pain and I wouldn’t have to hurt anymore.  I really thought I was living my happily every after.

I never expected something worse.  The pain that came when my boys were diagnosed was unlike any I had every known.  I understood then, the unanswered prayers of my past was God preparing me for my new present.

In the midst of the pain Duchenne brought to my life I prayed for healing, my answer came in a way that I had never intended. My boys were not healed.  They still have Duchenne.  My broken heart was healed though; with the gift of a beautiful baby girl.

I have joy and happiness, but I’m not living my happily ever after.  I’ve learned that it is something I may never experience in this life.  It will truly be in my after.

There is profound loss.  I’m convinced that as long as I walk my earthly journey, I will never know why.  Instead, I am left to find a way to live without and wait for a day I understand.  Perhaps then, that is my answer…wait.

Answers are sometimes full of pain. Why is someone sick, why is someone weak, why are they getting worse? For years, I have been searching for an answer to a question similar to those that is finally starting to surface.  I’ve sat and cried and let it break me a little.  I don’t know what I was expecting or how I thought it would come wrapped.  But what I got felt like being clothes-lined with barbed wire.  It hurts.

Sometimes we wish we never asked, but once you do you can’t give the answer back.

I am learning that answers are gifts.  These gifts are not always painless, they are not always what we expect, sometimes they create more and sometimes they take away. 

They allow us to know what we are dealing with though. They help us plan our next steps.  They give us understanding.  And eventually, even those that go unanswered, have the ability to give us peace.  The real challenge for me is to accept the gift, even if I would rather return it.  And I must work to remember to trust the teacher and His answers, even when it hurts.

 

 

Last week was not my strongest or my best.  But, it was.  As I waited for my anger to subside and my normal to come again I went to confession.  I was mad, but not at God. Still, I was pulling away.  In the confessional I admitted this.  I was reminded that there was no way to move forward without going to my Father.  I was encouraged to pause and go to Him.

By the weekend I was feeling better.  Although I had not hit the pause button yet, life was getting ‘normal’ again.

This morning was Psalm Sunday of the Passion of the Lord.  My pause came to me.

It was during the Responsorial Psalm, “My God, my God, why have you abandoned me.” I was singing, “My God, my God, why have you abandoned me,” while staring at the crucifix covered in a purple cloth, I couldn’t see Jesus, but I felt him.

My heart started moving.  Moved at the sacrifice made because of my sin.  I could hear and feel.  Jesus carried the weight of all the sins in the world on his cross.  The whole world.

My cross, as heavy as it seems, as many moments that pass when I feel it crushing me beneath its weight…it is nothing compared to the weight of the whole world.

Mass went on and kids were restless, Rowen and Charlie shoved each other all the way down the isle after communion.  We debated where to eat after Mass.

The way my heart had moved though…all day I found myself reflecting, not on the weight of my cross, but on the many blessings that came because a sinless man, the son of God, died for the things I’ve done wrong.

I went grocery shopping today and Rowen went with me.  I’ve been feeling racked with guilt.  He takes daily corticosteriods for his Duchenne Muscular Dystrophy. The steroid effects are so harsh and they are so hard on him.  I’ve been torturing myself wondering if it is the right thing for him, wondering if he would be better off without them, wondering if he would be worse or better without them, wondering if he is miserable because of them.

Rowen is a soul I can sit next to without a word passing between the two of us and know exactly what he’s saying.  Life moves too fast too often. I paused today getting groceries.  It was just the two of us and I could hear him.  He is a happy soul.  My boy is a happy soul.  The time I spent with him today calmed the anxiety I’ve been wrestling with.

First thing this morning, before Mass, one of our cats was missing.  It turns out he had jumped down into the sewer and could get back up.  My husband had to lift the manhole and I had to hang half way into the sewer to get him out.  As I thought about our rescue effort later in the day, I had to laugh.  One, because I was hanging through the sewer manhole in my pajamas. Two, because in November I went to a rescue and adopted two 12 year old cats.  It wasn’t my husband’s favorite thing I’ve ever done, but now he teases me and says I’m running a cat hospice.

He is so funny and when I do something crazy he finds a way to love me anyways.  I thought of the August I finally quit all forms of gainful employment to be the mom I wanted to be.  He might have stressed about the money, but instead of voicing it to me, he sent me flowers with a card that said, “Happy Retirement.” I’m a lucky woman.  I never doubt his love or that he was meant for me.

After this, I started to look.  I started looking for my blessings.  It is funny what you notice when you look.  There was a man behind me in the checkout line.  I overheard him talking to someone.  He has two grown sons that were coming over for dinner.  You could hear pride and happiness in his voice.

He noticed how full my cart was…it take a lot to feed a family of 8 for an entire a week!  He teased that he could put his food in my cart and I wouldn’t even notice.  He was jovial.   My attention turned to Rowen and tasks at hand.  I noticed him watching us, Rowen and I.  I could feel him wishing time would rewind.  He would love to have his boy in the front of the cart again.  At that moment I felt very blessed to have my son so little and to be sharing the moment with him.

Later in the day I heard myself laughing.  It is my mom’s laugh.  My relationship with my mother has been a stressed one during my lifetime.  My childhood was one that left me recovering.  But, I can remember my mom laughing.  She had a great laugh.  When she was happy, the whole world was happy.  I feel lucky to have that piece of her and hope the same for my children…that when their mom is happy their whole world is happy.

I can fault myself for not getting the laundry done or the the floor swept or not getting the most healthy dinner on the table.  I can question ever decision I make as a parent. My kids don’t.  They want me to laugh and I want them to remember me laughing.  I want us to be happy.  Our happy is never going to look like anyone else’s happy though.

Happiness does not come in a mold.  Happiness is authentic.  We find it in the blessings that come from the journey God gives us to get to Heaven.  Those blessings and the journeys are authentic.  God gives each of us our own.

The Lord knows the sorrows in my heart.  There are times when the sorrows take front seat.  There are times when I forget the blessings and I fall into despair or anger or jealousy.

But when I pause.  When I take a minute and I let the quiet set in.  When I take a minute so I can hear.  When I take a minute and turn to Him.  That is when I see the blessings, remember the joys, find my peace.  When I pause and I turn to Him I find the strength to go on, to be happy, to the be the wife and mom I was meant to be.  When I pause and turn to Him, I can find the right again even when the wrong is loud.  His voice his stronger.  When I pause and go to Him, I am stronger.

 

 

They say that with a chonic illness or disease that grief can be in a constant cycle.  I think it is true for Duchenne.  And today I am stuck in the “angry” part of the cycle.  I’ve shared my heart with you when I’ve been so sad I thought it could stop beating.  I’ve shared with you the many blessings and joys of my heart.  Today’s post will not be one of graciousness or beautiful prose…that is my disclaimer.

We were at the hospital all of last week for our sons’ appointments.  There were no emergencies, they were all scheduled as part of routine care.  We do this every 6 months.  Despite some changes that will come from our visit, the final results were that the boys are, for the most part, stable.

Stable is a good report.  Stable allowed me to take a deep breath.  Stable means they are not worse and for the time being we have held off the inevitable.  We have held off progression of the disease that will try it’s damedness to take my boys.

We’ve spread the word.  We have spread the ‘stable’ world. We spread it because it is in fact better than more decline or progression and in the last year we have had 2 of those visits, 2 visits where we didn’t even get stable.  Those reports are hell.  After those reports there are no deep breaths.  There are tears and a new layer of pain over the scar tissue that remains from the last time we got bad news.

We’ve been home for almost 4 full days.  I feel horrible.  I feel exhausted and every movement seems to take all the energy I have.  I don’t feel like smiling or talking and do not expect any form of ‘socialble’ to come from me.  I had a hard time following a conversation I was having this morning.  I walked around the house looking for my phone as I talked on it to my husband.

I made myself go for a run today and stay on the treadmill for an hour searching for some clarity and peace.  Finally, it clicked.  I am pissed.

I am pissed because they are stable.  I am pissed because we have been forced to live a life that has us celebrate stable.  I try really hard to be bigger than this.  I focus on the positive, on the next steps, on the good.  It is good that they are stable.  But because I am a mom of kids with a chronic and fatal disease I have to settle for less.  I don’t want to settle for less.

I want improvement.  I want to leave the hospital just once having heard the words, “He has improved.” I want to hear, “It looks like he is going to beat this thing.” I want to celebrate that report, not stable.  I want more than stable.

I’m crying right now.  But these tears are hot with anger and they sting. I feel trapped in a reality that no one should have to live in.  I feel like screaming.

I break down in tears when I don’t expect them.  I want to scream at the world.  I want to drink too much wine.  I want to run until it doesn’t hurt anymore.  I don’t want to be nice.  I want to use vulgar language.  I want to drop an f-bomb.  I want to park behind the next person I see parked illegally in a handicapp spot and honk at them.  I really want to scream at the next person that tries to sell me a natural supplement or herbal vitamin.  I never say anything because it might offend someone. But damn it. I’m offended.  If there was a vitamin out there that could save them, we would have it! I’m tired of being offended by well meaning comments that feel like a stab in the heart.  Im tired of being offended and never saying anything back because I try to see the good in what they are doing; even when they can’t see the hurt they cause.

It feels better to write it down.  I will probably never do most of things I feel like doing, but I can write it down.  And if you catch me acting in a way I describe, you’ll know why.  I’m human and going through something most humans will never experience.

I’ve been here before. It won’t last.  But it is an important part of how I do this.  People ask me all the time.  How do I do this?  I don’t know.  I can’t really work the steps, but when the cycle of grief comes to me, I let it.  I have to feel it. Allow myself to feel it. I have to validate these feelings because they mean something and very often they become the fuel that drives me to do everything I can for my kids.

In a couple of days the new therapies will have begun, all the new prescriptions will be filled.  All the new will gradually become part of our normal and the feelings of anger will subside.  The reality is that I have to hope I’ll be here again in 6 months, because I won’t hear the things I long to hear, but I hope I can hear ‘stable’ again.

There are always little bites of anger and sorrow and I can ignore those little bites and focus on the blessings and joys.  Today they are less of a bite and more like Jaws hanging off my shoulder and that can not be ignored.  I can’t let the beast take another bite, but for today and for the how many ever other days it takes, I’m going to be jaded.