Trusting that I am Where I Should Be

“Be Who God meant you to be and you will set the world of Fire”

St. Catherine of Siena

In the past few weeks, I have seen this quote and other quotes with similar messages.  The number of times I’ve seen this message and the reflection stirred up has made an indelible mark on my heart.

For nearly my entire life, I have been my harshest critic. It was a defense mechanism learned during childhood. If I were harder on myself than anyone else, then the hard things and criticisms I often heard would not hurt me as much.

The critic in me started to change when I met my husband. My married life has been one of my biggest blessings. First, his love changed me, and I could be kinder to myself when I could see myself through his eyes. Then our love grew and grew each time we welcomed a child. After the boys were diagnosed with Duchenne, I continued to grow. The walls I had built around my heart to protect it and my defense mechanisms weakened as people started to embrace and love and support us.

I had grown as a person. I was liking the person I was becoming. Then as my son Rowen started to lose his ability to walk, I grieved and grieved. My heart was hurting so badly. It affected more than I can share.

During this period, I experienced harsh criticism for how I was grieving, and I was unprepared for it. I sometimes think as a mother, you can hurt so badly for your children that all else leaves you, and I was not trying to protect myself.

It knocked me to my knees. I internalized what was said to me, and it hurt. I quickly, at that point, could have believed the bad because for most of my life that was easier. Unfortunately, it was easier to accept the bad than it was good.

However, I had just finished a bible study that repeatedly talked about being a beloved daughter of God. It was the first time in my life I realized I did not have to earn God’s love. I recognized he gave his love freely, no matter what we did or how we messed up. That message had taken root in my heart.

I wrestled with the hurt. It was an internal struggle. It has a hard pull between believing what a bad person I was, unworthy of love, or knowing that I was God’s beloved daughter. I felt like the evil one was fighting very hard to win. Yet, I didn’t give in. God loved me. The roots in my heart were planted so deep they could not be pulled up.

It was not easy. I started attending my Eucharistic adorations with a different intention and desire. All pretenses were dropped, and I just went to my father. I had intense feelings of sitting next to him and laying my head on his shoulder, and finding comfort in him during those months. I had always heard that healing could take place before the Eucharist, and this was the first time I had experienced it myself.

Adoration gave me the courage to reach out and start counseling with a profession as well. I needed help processing all the big feelings I was feeling. Unfortunately, it was cut short because of the pandemic. Still, we had time for the necessary work, and healing continued in front of the Eucharist. I also know that the door to the counseling office is still open for any time in the future that I need help during any part of my journey.

I came out of that hard place feeling not necessarily stronger but softer. I felt malleable to God’s plans in my life. Parts of my faith that had laid dormant woke up and continue to grow. I have lots of work yet to do, but I feel like what Catherine of Siena describes. Become who God meant you to be! I think of where I am now—an expecting mother. I am meant to be a mother.

I am also writing professionally for the first time at age 41. I had a teacher in high school that had encouraged me to major in creative writing in college. However, I did not even consider it. I couldn’t see myself as a writer, and I could not believe anyone would want to read what I had to write. I thought it was better if I was just quiet. However, once the boys were diagnosed with DMD, I leaned on writing to cope with the complicated feelings the diagnosis had exposed. The more I wrote on social media and in my blog, the more I wanted to write.

I think about being an expectant mother for the seventh time, and a writer and I can’t help but feel St. Catherine of Siena. Those pieces are part of who I am meant to be. I trusted God and let Him lead my life, and I find myself in a place where I can feel the warmth from the fire St. Catherine of Siena takes about. Today was especially meaningful because I received a message from a mom in Greece who read a column and it support her feelings of hope. I feel like their is no limit to how far God’s reach can be. When St. Catherine of Siena said the world, she meant it.

Being in a place of trust does not mean my life is more straightforward. This past weekend alone, I had to watch as two of my children experienced hard things that I could not fix. Sleep has been hard to come because of the unease I experienced at not making it better. I can pray for them, and honestly, I can trust that these are things they needed to go through to become the person God is shaping them to be, but it still hurts my heart to watch them hurt.

Being a place of trust does mean that I can rest knowing that I am where I am supposed to be. I can relax knowing that God has me in the palm of his hands.

I took the dog to the vet today. She needed an allergy shot. For just a quick minute I thought, “if this is biggest thing I have to worry about today, I lead a pretty charmed life.”

Then I laughed thinking about how other people might react if they heard me say that out loud. I laughed as I remember the stress level I’ve maintained this week.

Duchenne is heavy and hard.

Results of what I consider to be a scientific breakthrough in the treatment of Duchenne Muscular Dystrophy were released this week. A promising new therapy is on the horizon! It is truly an answer to prayers. It makes me so happy and yet I’m grieving.

It has the potential to save Duchenne lives. I want my kids on that therapy.

My kids are already on another therapy. One that 10 years ago was a scientific breakthrough of its own. One I feel blessed to have access to and have fought hard for. It is helping; but it is not doing what this other therapy appears to be doing.

I feel panicked. I’m worried that because we already have access to the first, we may have put our boys in jeopardy of having to wait years to have access to the new therapy.

I know nothing for sure. I’m playing a game of life or death chess in my own head with limited amounts of information.

Next week I will spend several days in Arizona at a conference with the most influential people in Duchenne. There will be the leading scientists and doctors, industry representatives, and hundred of advocates and parents attending this conference.

This will be the place I will absorb enormous amounts of information, ask my questions, and form new ideas about the best way to care for my boys as they get older and as more therapies become available.

I’m scared.

I’m scared I will not be brave enough.

I’m scared I will not be brave enough to make a decision.

Do we stay on the course we are on and risk losing access to new and better therapies? Do we stop what we are doing and try something new and risk losing all the benefit we are currently experiencing? Is there an in between? What if we choose wrong?

Will I be brave enough to make a decision and live with the consequences?

And I realize there are parents whom have lost their beloved children to Duchenne and never had access to any of it. To them, I must sound so damn spoiled. They would have done anything to be in my situation.

I haven’t slept. I think I feel an ulcer, or at least a huge knot in my stomach that is making eating very difficult.

So today, when the worst thing I was worrying about for a few moments was the dog’s allergy shot, life felt pretty charming.

But as I thought a little harder, scratched a little deeper…

the fact that I can forget for a few minutes,

the fact that I can celebrate a mundane task,

the fact that I have decisions to make about a disease that had no options 15 years ago…

There was magic in those few minutes. There was something very simple in that task. Magic and simplicity for a few minutes in a life too full of complicated and stress was really quite charming while it lasted.

Meaningful Differences

Recently my family has been advocating for a drug called Ataluren (Translarna), a treatment for Duchenne Muscular Dystrophy.  All three of my sons with DMD have had access to this drug though a clinical trial.  And now the drug company that makes Ataluren is fighting for FDA approval.

There have been articles about our family and our desire to have Ataluren FDA approved in Parent Herald, Exceptional Parent, and we are working on one that will run in Momaha (Omaha World Herald’s women’s interest and parent blog).  I have been happy for the press and awareness the articles are helping to generate.  But truth be told; they are just scraping the surface.  What this drug means to me runs much deeper.

There was a time that my naive youthful self would never have known about something like this.  If I had only known then that 3 of my children would be diagnosed with this cruel and unrelenting disease, I would have paid so much more attention in biology and chemistry because I would have known how much this would truly mean to me. I would have known it would affect the life of my children.  Affect their life, but directly impact their quality of life and my amount of time with them on this earth.

I want to share with you how Ataluren impacts my sons’ lives. Some of these things may not sound like much at all, but to a parent of a child with Duchenne, they are huge things.

I’ll start with my oldest son, Max.  Max is quite a character. Max is 10, he will be 11 in November.  I can’t help but compare him to other boys I know that are his age, who have Duchenne, and are not on Ataluren, or any other trial drug. This is how I know Ataluren is working; other boys his age with Duchenne cannot do these things.

Max loves performing in the theater.  Two summers ago he was the clock in Beauty and the Beast and this past summer he was Michael Darling in Peter Pan and Wendy.  He was really awesome in both productions, and I am trying very hard not to be biased with that description.

That may not sound like something that Ataluren would  have an effect on; but here is how I know it was helping.  Max went to 2 hour rehearsals every day for several weeks.  There were 6-7 steps that led to the stage.  He was able to maneuver up and down those steps several times each rehearsal and performance.  At the end of the night, when he was at home, he was not exhausted.  Prior to being on Ataluren that would have exhausted him. But on Ataluren he could do the rehearsals, the performances, and still come home and have energy to spend time with his siblings, his dad, and me.

The second example I want to share with you is that this past summer Max was finally tall enough to go on the water slides at the water park in our home town.  He was so excited that first day; I felt sick to my stomach trying to imagine my almost 11-year-old son with Duchenne climbing the two stories of stairs it would take to go down the slide.  But I was so pleasantly surprised that I found myself in tears.  Max went up those stairs and down those slides 4 times that day.  His brother without Duchenne could have done that 10 or 20 times and it would not have been a celebration; but for Max it was like winning the lottery! He did it 4-6 times every time we went to the waterpark this summer.  I know in my heart of hearts that other boys his age with Duchenne could not do that.

That brings me to my middle son Rowen.  Rowen is a 2nd grader and bit quieter and a more serious little guy.  Rowen is my weakest, confirmed by his neurologist. His Duchenne is more severe than that of my other sons.  It is like he just started out weaker and now the disease is progressing much more quickly through is body.  It is hard to watch.  He is never going to be able to do the stairs at the water park.  He doesn’t have the stamina to do a play.

But, again, I can compare him to other boys close to his age that I know.  When I do that I can see Rowen has a more stable gait.  Some boys walk with more of an extended leg, more up on their toes, and more curvature in their back. Rowen as weak as he is has a more stable gait. Some of the other boys seem to thrust their chests forward more and swing their hips from side to side more.  Rowen does not do that, even as weak as he is, his gait is stable. I believe that Ataluren helps you where you are at, even the weakest of Duchenne patients.

And finally, I want to talk a little about my youngest son Charlie. He is a joy, truly and honestly, you have not met a more joyful child than this boy.  Charlie is doing better than either of my other sons were doing at age 5.  I believe that having access to Ataluren since the age of 4 plays a large role in that.

Charlie started kindergarten last week. And instead of falling asleep or being crabby because of the demand of the full school day he has never experienced; he played outside with his neighborhood friends and even rode his bike (with training wheels) until it was time to come in to eat.  Ataluren is the only explanation for the fact that he was able to do that.  Neither of his brothers could do that during the first weeks of kindergarten.

That same week as I was looking out the window and saw one of our little neighbor boys running in the grass I noticed another little boy running after him.  It took me a minute, but then I realized it was Charlie running with very limited  Duchenne characteristics that are easy to see when you see a boy with Duchenne; especially to my trained eye.  To someone who didn’t know he had Duchenne, I’m not sure they would have noticed.

I want so badly for this drug to be approved so that my boys continue to benefit as well as all boys with the same mutation. I know Ataluren is not a cure, but it is making meaningful differences in the lives of the boys who take it.

boys 2
Rowen, 7, a more serious little guy
boys 1
Max, 10, at the water slides
Charlie, 5, a joyful child