Duchenne Muscular Dystropy

Trusting that I am Where I Should Be

~ Betty Vertin ~ Leave a comment

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

St. Catherine of Siena

.  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 liked 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 me 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. At that point, I quickly could have believed the bad because that was easier for most of my life. Unfortunately, it was easier to accept the bad than the good.

However, I had just finished a bible study repeatedly discussing being a beloved daughter of God. It was the first time 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 was a hard pull between believing that 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, laying my head on his shoulder, and finding comfort in him during those months. I had always heard that healing could occur before the Eucharist; this was the first time I had experienced it myself.

Adoration gave me the courage to reach out and start counseling with a profession. 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 before 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 grew. I have much work yet to do, but I 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 blogs, 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 significant because I received a message from a mom in Greece who read a column and it support her feelings of hope. There 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 watched two children experience hard things I could not fix. Sleep has been challenging because of the unease I experienced at not making it better. I can pray for them, and honestly, I can trust that they need to go through these things to become the person God is shaping them to be, but it still hurts my heart to watch them break.

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

Finding Trust in the Moments

~ Betty Vertin ~ 1 Comment

I’ve had these little, almost imperceptible moments over the last few months. Moments that I would take in, understanding they were valuable and just holding them.

These moments have been lessons in trust. There is an underlying sadness in my life. My boy’s diagnosis makes me sad. It’s not what any parent would want for their child. Except for a few difficult seasons, my family does its best to find the silver linings, live in the moment, find joy in our journey, and make every day count. Life is precious and short, and we will soak it up best.

I’ve found that prayer, quiet contemplation, and adoration have become part of my formula to live life this way. It’s often in the quiet that either these moments come to me, or I have time to take them out and think about them.

I was very emotional one Monday morning. My sons are doing well considering their diagnosis, but they have moments of intense suffering still. One was suffering, and I was hurting for my son. I was in the church praying the rosary and meditating on the glorious mysteries. The first of these two are the resurrection and the ascension.

I was thinking about Jesus’ mother. She had watched her son die a slow and painful death when he was crucified. She was there. I can only imagine that the resurrection was to her, as it is to all of us, a miracle. She could see her son again. I’m sure that every parent who has ever lost a child wants to see their child again, and Mary did. She did see her son again! I wonder how her heart must have been so happy at seeing him.

Then the ascension. He was gone again. I was at the church that day, hurting and emotional as a mother. I thought about Jesus’ mother again. She must have known he would go again; as faithful and devoted, she knew he would go to His Father. But, as a woman and mother, it hurt to watch him go again. To get him back and then say goodbye again. I know that she knew and believed she would see him again, and she did, but I wonder how she must have ached and yearned to see him all the rest of the years she was on Earth.

I had never thought about any of this before. I felt like Jesus was pointing me to his mother and needed me to learn from her. I didn’t know what he wanted me to understand. I made it an Advent goal to study his mother and try to grow in my relationship with her and to learn what he wanted me to learn, whatever that was. Honestly, he wants me to learn many things, and it will be a relationship I nurture for the rest of my life.

Another moment came the Wednesday before Thanksgiving. I stopped into the church to pray a rosary. I remember at one point looking up. To preface this next part of the story, St. Cecilia is a beautiful Catholic church over 100 years old. It has lovely stained glass windows and a gorgeous station of cross statues adorning the walls. I looked up from my prayer. I was sitting next to a wall about 10 rows behind a statue of Jesus falling under the weight of his cross. I looked into the face of Jesus, and my heart immediately felt a pang of sorrow. I looked away at the pain and then back into his face, and the same pain penetrated my heart. I was so sorry for his suffering. But he seemed to say to me at the moment that love is worth all the pain in the world.

These moments and thoughts have been with me. I think about them often and wonder how he wants them to change my heart.

We took our boys to the neuromuscular clinic last week. Many things were happening that day. It was a new clinic to us, and by the end of that 9-hour day, we would have met 10 or more new specialists, nurses, and other essential persons involved in the care of our sons. It also started very early, and my oldest was tired and stressed about the clinic change and the discussion we were in the midst of. He was hiding behind his mask and pretending not to listen but listening anyway. His behavior felt a little disrespectful to the doctor, but he was also a very teenage boy.

The boys endure some very strong and harsh medications to help them manage their disease. It is so strong that it suppresses some things the body should do independently. Needless to say, we have to manage those things through medicine. We were talking about a change in medication. He needed to have a say. The doctor looked at him and asked if he would rather do option A or option B? My son said, “Whatever my mom thinks is best.”

I’m crying now. My child’s absolute trust in me to make significant, life-changing decisions for him is one of the purest, most overwhelming feelings of love I have ever felt. That piece of my motherhood, the Duchenne mom piece that I never expected and can’t believe I am figuring out how to do, is something I take very seriously. I study, prepare myself to make decisions, take the doctor’s knowledge and experience, my knowledge and experience, the expertise and experience of other parents, my son’s needs and desires, guidance through prayer, and put that all together with my husband and we make the best decisions possible with the information we have. Considering all that, I can’t believe someone trusts me so deeply and naturally. He knows I would never do anything to harm him and that every decision is made to help him.

Trust is not natural to me. Life experiences took that away. I try to be independent and feel in control and safe if I do it alone. Except, that is not how or why we were made. I’m so thankful for the people God put in my life that make trusting easier, but my first tendency is to do it independently.

That’s what all the moments have been for. Jesus wants me to trust him. Jesus wants my trust like he had Mary’s. Jesus wants my trust like I have my sons’. Like Him, I love my children more than words can describe; I love them fiercely. Jesus is love. He wants my absolute trust that just as I do for my children, he is doing for me, only, of course, he does it perfectly.

Always and Forever: Our experience with marriage and Duchenne

~ Betty Vertin ~ 2 Comments

We were 19 when we met, 21 and 22 when we married. We were young and goofy. We habitually said “Always and Forever” sometimes instead of “I love you.”

I was a hot mess when I met Jason, but thankfully, God took things over, and a little divine intervention led me right down the aisle, and I married my best friend.

We will celebrate our 20th wedding anniversary in June. We’ve had more good years than bad, but I could argue that the bad ones are the ones that have shaped us into the couple we are today. Our most challenging years were the year following diagnosis, the year my sister and his dad died, and the year before our son Rowen stopped walking).

The boys were first diagnosed 10 years ago. At diagnosis, we were told how hard it would be on our marriage. It was an accurate statement. We’ve been through many ups and downs and will surely be through lots more. Sustaining a marriage through a rare disease has been like a dance. We move around or with each other, depending on the stage. Sometimes we’ve danced alone and didn’t want to be on the same dance floor.

The diagnosis broke me. I was filled with grief and pain and fog for the earlier months and first year. Our marriage suffered because I was so full of sadness and hurt that there was little room left for him. I suffered because I wanted him to be hurting as much as I was, I didn’t want to be alone in my pain, but I wanted his pain to look just like mine.

The first lesson I had to learn was that men and women react differently to grief and heartache. He felt broken, too. The little boys that numbered nearly enough to field a basketball team would never play, and that realization was minor when compared to the fact that he, like me, was scared they wouldn’t live long enough to experience a rich and blessed life.

He was hurting, too; it just looked different for him. I was not kind or filled with grace when I didn’t understand his feelings, and he stayed, and he kept us going when all I could do was actively mourn the life I thought we would have and inactively live the life we had right in front of us. He later told me that watching me hurt so badly killed him because he couldn’t fix it.

I came out of that mourning period convinced I would save our boys. I became a super mom. I did everything. I found the best doctors, I found a clinical trial, I started the stretches, I started advocating, I started raising awareness, I, I, I… I did everything I could possibly think of to save my boys. But, you know what? I left him out. I alienated him. It wasn’t good for us because I was taking out the “us.” I needed to know I did everything, afraid I wouldn’t be able to live with myself in the end if I didn’t. I didn’t leave much for him to do, and then I would get mad that he wasn’t doing what I was doing. Slowly, we found our way, but it wasn’t without growing pains.

Then another life hit; non-duchenne life. We both lost people close to us, and we learned that there is more than one kind of grief, and to balance both, we had to lean on each other. It wasn’t as easy as it reads. He was angry that his dad was gone, and I was shell-shocked that my sister was gone. Love and faith made it possible to learn to care for each other and our family when the other needed time to grieve.

During all of this, we were also fighting the FDA for approval of a drug therapy we believed was helping sustain our children’s health. While trying to come to terms with our losses and fight the biggest fight, we had People magazine, Newsweek, and every local media outlet interviewing us and recording our reactions as we tried to make our way. We never really had a minute to stop. We felt like we had to do it, to use our story to try to save our boys. It really does feel like life or death sometimes in rare diseases, and rather than let our boys down, we let parts of ourselves go. But I remember his self-sacrifice, and he was mine. I loved him more because of it.

We did well for years. We watched our children grow and learn and change, and we cheered our oldest through high school and into college.

Then, parts of Duchenne that we were not prepared for hit us like an anvil. Our oldest son started suffering from anxiety. He was afraid to sleep, and Jason and I did not sleep much for nearly a year. I was with our son because it was the only thing to help him sleep, and he was on the couch. My husband and I were never together, not even for sleep. It wasn’t healthy for us. We drifted.

This was also when our middle son was approaching the day he would no longer walk. I grieved that hard. I was mad, and it was easy to stay mad because I forgot the first lesson I learned and wanted Jason’s hurting to look like my hurting. We responded in different ways. We spoke only to talk about what we needed to do to get our kids through the day (what’s for supper, who needs to be here, what still needs to be done, etc.). There were lots of tears and arguments during those months.

Then, the day came when our son did stop walking. It was sudden, a broken leg, and overnight, we had to figure out how to bathe and shower him, dress him, and care for him because he could not do what he had done even the day before. I could not do it alone. I often wonder if my husband had waited almost a decade for me to realize that. And he was THERE, BIG TIME.

He became the one to bath him because he was the one strong enough to lift him. He became the one to dress him and help in the bathroom. The tenderness and compassion I see when he cares for our son is the most beautiful thing I’ve ever seen. A loving, caring father. I fall more in love with him every day by watching him.

It doesn’t get past me that Jason, a loving earthly father who patiently waited for me to let go of the reigns, did just as our heavenly father does when he waits for us.

My husband is so strong, but I wiped tears from his cheek at a breaking point a couple weeks ago. Vulnerability is changing us. That week a couple weeks ago was hard. It was full of sleepless nights, tears, and ungraceful moments. One night, at nearly 2AM, I fell back into bed, where he lay awake. I had been with one of the boys. Jason asked how he was. I answered and said, ” Our life will only get harder.” His response was “Yes.” Exhausted, we fell asleep without another word.

Our life is hard. I read it phrased this way recently, and it is true: we are watching our flesh and blood deteriorate in front of our eyes. It will always be hard.

We try hard to give our boys the best life, full of love, laughter, and memories. We see so many beautiful things. We’ve been on the receiving end of lovely gifts. We have met many other families living relentlessly brutal experiences but relishing in successes and joys. We know people celebrate every day. We have people celebrating our boys with us. (I attended noon Mass today, and it was offered to my son. I had no idea.) We have a home we love and doctors and providers that are amazing. We have a goofy dog. We have love. We are blessed by this hard life. We are blessed to share this life together.

Marriage is not two perfect people. It is two imperfect people loving each other through imperfect situations. We continue to grow and learn how to do this life. We honor the promise we made each other on our wedding day, always and forever.

A PIECE of ME was lost when my son stopped walking

~ Betty Vertin ~ Leave a comment

I lost it today.

That is the truth. But the more I think and mull it over, the more I know I didn’t lose it today. I simply lost another piece of me. I will never be the same after today. Nothing happened today but more a culmination of everything over the last several months.

It is all happening so fast. Over the past 8 months, my life, just like everyone else’s, has been flipped upside down. I’m so overwhelmed. I am genuinely an introvert in every aspect of the word. I can speak so many words a day before I hit exhaustion. I need time to myself. I draw my strength from the time I spend alone. I have not been alone since March.

I am running on fumes. I had the best respite before Covid. Now, it’s unsafe to let anyone into the house for fear they could expose one of the boys. Not only that, but the care needs of our boys have changed so much in the last year that there are very few, if any, people who could come in and care for them.

I’m grieving. I haven’t had time to do so. I am sad that my son is not walking anymore. It hit me hard today because he didn’t want to go out and play in the snow. It’s just not the same for him anymore. I love that he has his chair, and we are finally getting the house so he can move freely around without hitting anything. I am grateful because he seems happier. But I must admit that every time I look at the dining room table and see the one chair missing, it punches me in the stomach. We should not have removed one to make a space for his chair. He’s 11 years old, he should still be walking.

I’m so damn mad. My son is losing strength. He can’t bend over, he can’t pick anything up off the ground, he can’t go up steps, he gets tired more and more quickly, and I see him losing pieces of who he is, too. Anxiety has wreaked havoc on him for years now. His friends are gone. He is lonely and sad. I am mad that losing his muscles isn’t enough, but God has given him so much more than that to carry. I want to take it all for him. I can help him stop walking, I can be his legs, and I can bring his things, but I can’t take away this hurt he is experiencing. It’s worse than anything I’ve experienced in parenting so far.

Many of these challenging moments over the past few months have been met with no grace from me. I’m so cranky. I’m short. I don’t like me in the midst of all of this. Where are the showers of grace I’ve been praying for?

I feel very isolated and alone. I had a few refuges before, but now, because of the level of safety we need to maintain for our boy’s health, I don’t go anywhere where masks are not worn or social distancing can’t be observed. I also feel so mad at myself because I know I can’t feel that way when our community has given us a new van and showed up at every fundraiser. Our community of friends and family will pay for the ceiling lift we are working on.

My dear husband. He just holds me and says feeling this way is perfectly okay. The constant barrage of things stacking on each other is hitting me in the real feels. It is so true; there is a physical pain in my chest like it’s been beaten.

I spent the day stressed, then grateful, then heartbroken and sad. I cried, dried my eyes, went to appointments, and then I cried and made supper. Now, I’m in my room, letting my husband be a single parent and writing because it is one of the few things that gives me peace. I’m over the people judging me for sharing these vulnerable, messy, hurting parts of me. I’m not perfect; I’m just a mom who’s been given a tough ask, trying to do my best. I am so absolutely human and feel those human failings so intimately today. Today has changed me. I lost a piece of me today.

I will leave you with these quotes. These quotes won’t leave me in the midst of losing my peace today.

“Every time the anxiety builds, God whispers: I have a plan.” -Lauren Fortenberry

I can only hope that the little piece I lost today is his plan. That it is a piece I don’t need anymore, than He will replace it with something better, something more like him.

“Remain in me, as I remain in you. Just as a branch cannot bear fruit on its own unless it remains on the vine, so neither can you unless you remain in me.” John 15:4

Here I am, hurting and mad, but remaining.

~ Betty Vertin ~ 1 Comment

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

Image ~ ~ Betty Vertin ~ Leave a comment

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
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Charlie, 5, a joyful child