Anchor my heart in you, Lord.

I read that in a prayer during adoration last night.  They were the words I needed.  I was trying to ask God to come and fix me.  For weeks now, I’ve felt lost, and this is the thought that had been fumbling around in my heart and I could not express.  Anchor my heart in you, Lord!

I have been so tired and overwhelmed.  Everything is hard some days.  Some days I can fool myself into a state of normal, but lately something has been amiss.

I have always been a religious person.  I have early memories of my mom dressing all of us girls up every Easter and taking us to church.  I remember my first foster home, they went to a Presbyterian church every Sunday.  I received my first bible from that church.  

When I moved to Hastings to live with my mom again, I walked myself to a small brick church I had spotted a few blocks from my house.  There I received confirmation and was baptized with all of my sisters. When I went to live in another foster home I started to attend church with them.

Faith and belief were a constant in a not so constant way of life. The churches changed and the deominations changed but the feeling I had when I allowed myself to be open to the Lord did not.  As a child my life was a bumpy ride and Jesus was my life jacket. He kept me safe.

When I met my husband in college, I believe the holy spirit was working though him to bring me to the fullness of my faith. It was in the early years of our marriage I began to love the Catholic faith and after my sons were diagnosed with DMD I began to cling to it like a life preserver.

These past few weeks I have not been myself.  For Lent this year I decided to go to confession once a week.  I was going through the motions of Lent.  I did not put a lot of effort into my first confession of Lent but found myself to the brink of tears when I heard myself say I was having a pity party instead of trusting the Lord.  The Holy Spirit working through the priest encouraged me to tell this to the Lord.

I didn’t not go to adoration that week and I found myself dreading Mass that weekend.  I didn’t want quiet.  I prepared even less for my second confession and kind of winged it when I got in there. I was rendered speechless when the Holy Spirit working through the priest told me I was down in the dumps and needed to ask the Lord what was going on with me.

I went to adoration.  Although afraid of the quiet, I wanted to be there; but for the first 45 minutes I could not hear. Finally, I looked up at the crucifix and said, “I am broken, please fix me.” That is when the words, “Anchor my heart in you, Lord,” started to make sense.

I opened my bible to 1 Peter and everything I didn’t want to hear was there in front of me.  I had been pushing God way because I didn’t want to hear him.  I wanted to feel sorry for myself.  I wanted a break; but I didn’t  want to have to need help.  I didn’t want to wait to feel better. But pushing him away was making me feel worse.

This is what I read.  

1 Peter 5:2 “Tend the flock of God in your midst, not by constraint but willingly, as God would have it, not for shameful profit but eagerly.”

1 Peter 5:6 “So humble yourselves under the mighty hand of God. 7Cast all your worries upon him because he cares for you.”

1 Peter 5:10 “The God of all grace who called you to his eternal glory through Christ Jesus will himself restore, comfirm, strengthen, and establish you after you have suffered a little.”

I’ve read and re-read the passage.  It really speaks to me and gives me guidance and assurance.  I will keep working fat it and keep praying: Anchor my heart in you, Lord.”

I just have a few minutes to blog this week. Literally! I need to leave to pick the kids up from school in 15 minutes! But, I really want to try to post something at least once a week.  

All week I’ve been writing a couple of blogs in my head about how special needs dads are sexy because of the way they love, especially my husband and another about the value of moms..I’ll post them once I actually write them but today it all seems irrelevant.

Today, actually, all week long I feel like I’ve been swimming upstream through waves of impossible decisions and no right answers.  Maybe all moms can relate, but today I am writing as a mom of children with a rare disease. A rare disease that has no cure.  A rare disease that has no cure and is slowly progressing through my child’s entire body.  A rare disease that has no cure and is slowly progressing through my child’s entire body and effecting every single thing they do every single day.

Do you feel overwhelmed reading that last paragraph?

Man, it feels very overwhelming to write it because behind every word is something I’m worried about, or battling, or fearing will happen to my babies.  It is a hard way to live.  

Everyday is not like that.  I try hard, I’m sure all of us are trying hard to take care of ourselves, to get away for a little bit here and there.  And I say trying ‘hard’ because it is actually a very hard thing to do when you are caring for someone with a rare disease, a chronic illness, a progressive debilitating disorder.

On the days we can’t do that…get away, take care of ourselves…it is usually because something has hit like a tidal wave.  It seems like just one thing never happens…it seems like it is always 10 things that happen all at the same time.

The only point to this blog is to say I hear you out there moms.  I feel you.  It is one of those weeks.  But we will make it through, we always do.  We will be able to decide on a medicine that will help our little one…we will find one with the least side effects.  We will resolve that issue with the IEP, we will shove the fears about the future out of the way. We will find time to spend quality time with our other children.  We will laugh with our kids.  We will get our snuggles in at bedtime.

We will have that day at the spa someday. For now, take a deep breath.  Find a quiet minute and then keep on.  Because you are a good mom and you are doing the best you can.

Trust me, that last line is intended for me as much as anyone else.  Sometimes we just have to remind ourselves that we have a hard job and we are doing it well.

As I sat down to eat lunch today I logged into Facebook.  I clicked on the link that shows me what I posted years prior.  Five years ago today I posted that we learned Rowen also had Duchenne Muscular Dystrophy.

Max had been diagnosed six months earlier when I was pregnant with Charlie.  We waited until Charlie was born to have Rowen tested.  I was scared that if Rowen was tested and diagnosed during my pregnancy, my grief could put my pregnancy at risk so we waited.

I don’t remember the phone call or who I talked to. I do not remember very much about that day.

I remember July 10, 2010.  That was the day Max was diagnosed and I remember every horrible detail.  But when I realized that today was the anniversary of Rowen’s diagnosis I can only remember one thing.

I remember sitting in the hospital cafe and watching my 2 year old son with the biggest brown eyes eating a bowl of ice cream.  Rowen had screamed during the blood draw and I wanted to make his day better, so we had ice cream.

I know the reason I don’t remember the phone call or much at all about that day was because I did not need a test to tell me what I already knew.  The minute we learned that Duchenne was genetic and that our other sons could be at risk if I was a carrier, I knew in my heart the 18 month old baby sitting at home with his grandparents also had Duchenne.

The six months between the the two diagnosises I was in mourning and I was in denial.  I was a crying, begging mess.  I was desperate for it not to be true.  I remember rubbing Rowen’s calves each night until he fell asleep stubbornly praying that I could heal him. Large calf muscles are a symptom of Duchenne and Rowen’s were as big as his brother Max’s.  I desperately wanted to pull the Duchenne out of his body.  I cried many of those nights begging God to take it away.   Many of those nights I begged God that the baby I was carrying would be saved from Duchenne as well.

I spent a lot of time begging and bargaining with God in the 18 months it took for all three boys to be diagnosed.  I desperately wanted God to be wrong.  I wanted to wake up from the nightmare my life was becoming.

By waiting six months to have Rowen tested and another six months to have Charlie tested the only thing I prolonged was having to accept the truth.

That was five years ago.  Our family has come a long way since, we have accepted the truth and we are living our lives the best and happiest way we know how.  We survive the hard days, we celebrate the good days, and we hope for lots of days.

I don’t want today to be a bad day.  The only thing I remember about this day 5 years ago is ice cream.  So I’m going to the store and I’m going to buy a bunch of ice cream and as many toppings as I can find and we are going to have the biggest bowls of ice cream for dessert.

 

Life has a way of beating you down sometimes.  I think all of you could feel the weight of what I was feeling last week in my blog post.  I was feeling pretty beaten up or down I guess is better way of saying it.  The way I was feeling was draining me and the last thing I wanted to do was wake up on Friday at 3:45 am to catch a flight to Dallas to attend an advisory council meeting for PTC Therapeutics and return home around midnight on Saturday.

PTC Therapeutics is the company that makes the trial drug Ataluren/Translarna that my sons take as part of a clinical drug trial.  PTC invited a small group of parents to a meeting to better understand the impact Duchenne and the trial drug have on the lives of children, young adults, and families and how they could help.

As I mentioned, I was wanting to stay home. Thursday of last week, it felt like Duchenne broke me a little and the last thing I wanted to do was leave my home and my family.  My home is my safe haven and that is where I felt like a needed to be. But I had committed to the meeting I was going.

Once I made it to airport and survived the early morning drive in the dark and cold, I felt better about going.  It had been years since I had flown without kids and that alone made it a more relaxing experience.  When I arrived in Dallas a car was waiting to take me to the hotel.  I felt spoiled when the driver had a little sign with my name on it, carried my bag for me, and had little water bottles and a newspaper waiting in the back seat for me.

I know it may not seem like much, but it meant a lot to me and as I look back at it now, a reminder that it is necessary that I quit sacrificing all of me for the ones I love.  Part of the reason I have felt so defeated lately is because I am running on fumes. It took 6 hours away from home and I was able to figure that out; already the trip was helping.

I felt pampered the rest of the trip.  I had a quiet lunch alone on a balcony, I took a nap before my meeting, and was able to take a long shower a long time getting ready.  A dinner had been planned for those attending the meeting.  Nobody spilled food on me, I didn’t have to remind anyone about table manners, the waiters never let our wine glasses empty, and I enjoyed great conversation.  The next morning the group had a beautiful breakfast and as we worked through the agenda of our meeting, we discussed important things  in our lives and the lives of our children and we were productive.

We were treated very well; but the best part was being with people who live a version of my life when they are home.  It was very good for me to be with the parents I was with; because we all share something. It is something unspoken, but very well known. It is something that is felt, not anything that is said or written.  It is a safe place to be happy, to grieve, to laugh and to cry.  If there is a silver lining to Duchenne and I believe there to be more than one, it is the community of parents, advocates, scientists, and doctors that I became part of at diagnosis.

I end this post with a grateful heart for those parents living and thriving and fighting for their children in spite of the challenges. They make me better.