When Holidays are Tinted with Grief

It has been a long time since I posted here. I’ve been writing regularly for MuscularDystrophyNews.com and CatholicMom.com. Both are a dream come true. For those that have been here from the beginning know I never believed I could be a writer. But now I am paid to submit columns and can see name in a byline. I will never, not be thankful for that.

This is an article I wrote to submit but holiday articles can’t be submitted after the holidays. However, I think this is something worth getting out there because I don’t think I am the only mother/parent/caregiver that feels this sentiment during and after the holidays. I hope you enjoy, and I hope to write here more often. Thank you for sticking with me.

Small victories are my favorite thing to celebrate. But I also like to celebrate my children, my husband, our home, and our life. The holidays are a wonderful reason to celebrate too.

This time of year, outside our house, is strung with dozens of strands of colored lights. You’ll find a blow mold of Santa and Frosty, too. Once through the front door decorated with a swag of fresh pine, the walls are decorated with natural greenery and twinkly white lights. Several Christmas trees of all shapes and sizes are placed in every room, the biggest and best trimmed in the living room. Collections of old Santas and Mrs. Clauses can be found at every turn.

Food enough to feed ten or more people is almost always in a constant state of preparation. The smells of baked cookies and pumpkin pies linger long enough for another batch to go in the oven. Prime rib and soups are served on Christmas and Christmas Eve and reheated for days as leftovers.

This year gifts were put under the tree Christmas Eve to save them from being unwrapped and tossed around our youngest, an 11-month-old girl named Callie.

We had a wonderful Christmas. All seven of our children, ages 11 months to 21 years old, were home together for an entire week. We had the kids’ boyfriends and girlfriends here, too, and even an extra dog for a couple of days. We had an ugly sweater party with cousins, made gingerbread houses, and celebrated a family friend’s wedding.

I have no reason to feel sad, yet a piece of me is hurting. I think this way every holiday season. I watch my children, taking snapshots of them in my memory, wishing I could freeze the beautiful moments in time so I never forget.

My three sons with Duchenne Muscular Dystrophy (DMD), especially so, because time with them is a thief. Their rare disease doesn’t take a Christmas break. Instead, as they happily eat a cookie or laugh at their baby sister, DMD is at work, progressing through bodies where the disease has already wreaked havoc.

In the last several weeks, many young men and boys with DMD, some of whom I know and others I am familiar with because of social media, have been very sick. Some fought for their lives for weeks and made it back home, while others fought and didn’t make it home. Last Christmas was their last Christmas.

My heart must have holidays confused because that last line haunts me. And although I try very hard not to think about it and focus on the joys of here and now, it never goes away, like a ghost living in the closet of my heart. So I anticipate grief but don’t know how not to either.

I feel it in little waves of anxiety, a stirring in my stomach that sometimes leaves me nauseous. A voice says, “this could be their last Christmas. They could get sick.” My oldest son with Duchenne, 17-year-old Max, is home today with the symptoms of Influenza. We are managing it for now, but what if he gets worse? What if there are complications? It’s hard to so often be in a state of balancing logic, reality, and fear.

And I ignored it and continued with our holiday as planned. But because I can’t tell the voice that it’s not true, because I don’t know that it isn’t, can’t prove it wrong, I can’t forget the voice either.

And so it remains like an uninvited guest. Instead, it becomes part of the celebration, creating a holiday tinted with grief.

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.

Looking Back and Ahead: Reflecting on My Words for 2020 and 2021

Resilience was the word God put on my heart for the year 2020. When I chose the word I thought the year would be about healing some past hurts. It did, but in ways I did not expect, but even more unexpected was the worldwide pandemic that literally changed almost everything. My life, the world, my family…none of them look the same. Resilience was what I experienced, what my kids experienced, what I think the world experienced.

At home learning for the kids. Isolation and social distancing beyond what most of their peers were and are experiencing. My oldest had her freshman year of college and life in the dorms cut short and never experienced an entire freshman season of husker track. She had to move home early. A very sick and hospitalized mom and tayta (grandma). A broken bone for Rowen and our first major set back with any of the boys with DMD.

Periods of pure stir crazy from being shut in and away from everything we knew up until this year. Grief for what we were losing and how the world was changing. Two periods of quarantine, an intensive home remodel that we lived in. My full-time employed husband suddenly acting head coach for a varsity football team he had played for decades before. An election unlike any before. Rioting and tension and unrest.

Before that my husband’s short journey with skin cancer, a season ending injury for Chance and our first hospitalization because of Duchenne for Rowen.

We made it through all of that and regardless if 2021 will resemble that in some way, we were resilient in 2020. I learned so much about my own heart, the broken hidden little areas that needed access to the light. Visiting those areas, acknowledging those areas and finally giving them up was resilience.

I’ve spent several years chronically my joy in this journey of life. In 2019 I fell behind. I was so sad about the changes in Rowen’s disease progression that I forgot to look for the joy. In 2020, in the midst of pandemic, God helped me find my way back. Overall, our year has been joyful. I am counting the joys and blessings again.

Jason is home now; for a long time before the pandemic he was dreaming of a home office and now he has one permanently. He is happier. He is here for everything. When I need extra help with the boys he can come out of his office and help. He knows the kids better and he and I know each other better. I can honestly say we are more in love now that we have ever been. As we prepare to celebrate our 20th year of marriage in 2021, it feels like a pretty good place to be.

When everything else in the world shut down and things stopped my family experienced kindness that did not. In the middle of a pandemic we were given $70,000 to buy an new handicap accessible van that will hold 3 power chairs. Another $10,000 to purchase and install a ceiling lift system. Our boys are so loved. It is a humbling and beautiful and tear-producing and amazing gift to experience a love like that.

Rowen did fall and break his leg and he does walk less; but he does so much more!!!! His quality of life has improved.

I was brave enough to listen to an answer to a prayer I wasn’t sure was right. It was and my son is happier than he has been in years! I also learned that if you are going to ask God to help you where you are, you better be ready to say yes to what he asks! The thing he has planned is so much better than you can imagine will go wrong. Perhaps the best lesson I learned for 2020!

Lexi moved out permanently and I was so sad about that. But, as much as I thought she would not be here enough, she has come for several visits and stays and humbly shares the bunk bed with a 6 year old. Even more though, she has grown into such an adult. She balances school, work, and the demands of being a college athlete and pays her own rent. As parents, we could not ask for more. We are so proud of her and love seeing the woman she is going to be start to take bloom!

The kids have been fighting since Thanksgiving. The colder weather has basically forced them to live on top of each other as we avoid going out and crowds during the pandemic. It’s not been the most joyous part of the year; but they are happy and healthy!

Another positive thing this year brought was a pool! With everything closed last summer we finally did what we’ve dreamed of for years and the kids benefited so much from it! And finally, after years of talking about finding a neuromuscular clinic closer to home, the pandemic forced us to take that step and we could not be happier about the change. We are even going to be able to switch our clinical trial site to Denver so that we don’t have to take separate trips to Kansas City in the future. It could not have worked out better.

That’s 2020 for you. The word God gave me was perfect and so I’m trusting God. My word of the year 2021 is trust.

It’s not the word I wanted. I wanted love. If someone were to ask me what I want people to remember about me once I’m gone I would tell them that I want to leave a legacy of love behind. That is my goal, that is what I want out of this life.

God said the word this year is trust. I knew it was the right word the moment it landed on my heart. I heard someone say recently that if you think you are not loving Jesus enough, it is not a love problem, it is a trust problem. When the word trust fell I knew it was exactly right. I need to learn to trust Jesus more with my life, with my family, with my future. If I want to love better, I need to trust better and so I pray that 2021 is a fruitful year for trust in my life and I pray that sooner than later I can love like he does. I’ll be back to share my journey with this word. I know already that his first challenge to me has been issued and I will work to love me like he loves me and trust myself with what he trusts me with.

Happy New Year friends! I’m sending my love and prayers for all of you.

Finding Trust in the Moments

I’ve been having these little, almost imperceptible moments over the last couple of months. Moments that I would take in, understanding they were valuable and just hold them.

These moments have been lessons in trust. There in an underlying sadness in my life. My boys diagnosis makes me sad. It’s not what any parent would want for their child. With the exception of 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 everyday count. Life is precious and short and we are going to soak it up the best we can.

I’ve found that prayer, quiet contemplation, and adoration have become part of the formula for me to live life this way. It’s often in the quiet that either these moments come to me or that 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 in the midst of 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. The resurrection, I can only imagine was to her as it is to all of us, a miracle. She could see her son again. I’m sure that every parent that has every 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 full of happiness 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, as a mother, it had to 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 and 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, that he needed me to learn from her. I didn’t know what he wanted me to learn. 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, there are many things he wants me to learn and it will be a relationship I nurture 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 that is over 100 years old. It has beautiful stained glass windows and gorgeous station of the 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 what he seemed to say to me at the moment was love is worth all the pain in the world.

These moments and thoughts have been with me. I think about them often and I 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 important persons involved in the care of our sons. It was 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 anyways. His behavior felt a little disrespectful to the doctor, but very teenage boy as well.

The boys endure some very strong and harsh medications to help them manage their disease. It is so strong that it suppresses some of the things their body should do on its own. 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. That absolute trust my child has in me to make important, 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 knowledge and experience of other parents,my sons 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 of that, I cant believe someone trusts me so deeply and naturally. That 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 am doing it on my own. 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 still to do it on my own.

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’s 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

We were 19 when we met, 21 and 22 when we married. We were young and goofy. We had the habit of saying “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 toughest years were the year following diagnosis, the year my sister and his dad died, and the year prior to Rowen going off his feet (duchenne speak for the when he 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 alot of ups and downs and are certain to be through lots more. Sustaining a marriage through rare disease has been like a dance. We move around or with each other depending on the stage. There are times we’ve danced alone and times we didn’t want to be on the same dance floor.

Diagnosis broke me. I was filled with a 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. It 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 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 now 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 a lot 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 other 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 did make it possible to learn to take care of each other and our family when the other needed time to grieve.

During all of this we were also fighting the FDA for drug approval of a drug we believed was helping sustain our children’s health. While we were trying to come to terms with our losses and fight the biggest fight of our life, we had People magazine and Newsweek and every local media outlet interviewing us and recording our reactions as we were trying 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 disease and rather than let our boys down, we let parts of ourselves go. But, I remember his self sacrifice and he mine. I loved him more because of it.

We did good for years. We watched our children grow and learn and change, 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 very much for nearly a year. I was with our son because it was the only thing that would 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 over night we had to figure out how to bath and shower him, dress him, 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 been waiting 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 to 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 everyday watching him.

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

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

Our life is our 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 and laughter and memories. We see so many beautiful things. We’ve been on the receiving end of beautiful gifts. We have met so many other families living relentlessly hard experiences but relishing in successes and joys. We know people celebrating everyday. We have people celebrating our boys with us. (I went to noon Mass today and it was being offered for 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.


I lost it today.

That is the truth. But, the more I sit and 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. The thing is, it is nothing that happened today, but more a culmination of everything over the last several months.

It is all happening so fast. The past 8 months, my life, just like everyone else’s has been flipped upside down. I’m so overwhelmed. I am truly an introvert. In every aspect of the word. I only have so many words a day I can speak 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, its not safe 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 that 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 that he can move freely around without hitting anything. I am grateful because he seems happier. But I have to admit that everytime I look at the dining room table and see the one chair missing it punches me in the stomach. We should not have had to remove 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 easily 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 so damn 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 carry 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 hard 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. The ceiling lift we are working on will be paid in complete by our community of friends and family.

My dear husband. He just holds me and says it’s perfectly okay to feel this way. That the constant barrage of things stacking on top of each other are just 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’ve cried and then dried my eyes and went to appointments and then 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 that’s been given a tough ask trying to do my best. I am so absolutely human and I am feeling 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 that in the midst of losing my piece today, won’t leave me.

“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.


My word of the year for 2020 is resilient.  I picked this word long before I was concerned about a worldwide pandemic, before we isolated ourselves for months, before there was a health recommendation to distance yourself.

2020 is proving resilient was a great word.  It keeps popping up, too. In fact, tonight I am a panelist at a virtual conference.  The topic: resiliency. I’ll maybe share more about that later, but today I wanted to talk about distance.

I’m was reading about charisms the other day.  God given gifts or strengths, if you may.  Writing is my gift.  I was reading about using charisms as intended.  Thinking about my strengths got me started thinking about my weaknesses.  I’ve always faulted myself for being distant.  Outside of my immediate family of husband and children, I find closeness is not a natural feeling for me, sometimes it is even uncomfortable.

I’ve always wanted to me more social, more like my husband and my children. I wanted social interactions to be as natural as breathing to me. I wanted conversation to come easy.  I wanted to be able to small talk, that for sure is not my gift.  I’m sure others must feel awkward with my awkwardness, but that is me.

Then I started to think about it differently.  Perhaps my distance is necessary.  If I wasn’t quiet, if I didn’t take that step back and observe, if I didn’t respond to my inner need for quiet I’m not sure I could write.

I do not think distance is my fault, not anymore.  I think distance helps me observe my world and that same distance gives me a space to write and a space to share.

I have started praying that God use my distance, meet me in my distance, and most importantly, fill up the distance.

Running the Race in Front of Me

I went for a run this morning. At one point in my life I was an enthusiastic 1/2 marathon runner. I would run 5-6 miles daily. For various reasons, I haven’t run regularly for 3 years.

Maybe, this will be a positive I chalk up to the Covid-19 pandemic. We are still practicing strict social distancing. The world is starting to open back up again. I see friends on Facebook doing things like fast food drive through. I’m jealous.

We just finished week 11 of strict social distancing, As the US starts to open up again, Jason and I have decided it’s a risk we are not ready to take yet. Max, Rowen, and Charlie take a medicine that suppresses their immune system. We don’t know how their bodies would react to an illness like this. Maybe they would tolerate it well, maybe it would kill them. The last time Rowen had Influenza, he also developed pneumonia and was hospitalized. We are not willing to risk it. I’m hopeful that summer will go well and we can return to normal activities in the fall. Until then, we will play it safe.

This makes me sad. I miss baseball games, pool days, the library, the movie theatre. I miss not being worried about exposure to a disease the boys may not be able to fight.

We spent two weeks in quarantine in April. We had been exposed, even when being very careful. We were tested and had to report our temperatures daily to the health department. We lived in fear that the boys would get sick. It was awful. We did not have Covid-19, but that fear will not leave me.

The days we go to a store or to drop off something at the kids’ school, I find it difficult to sleep, wondering if we did everything right or did we just put ourselves at risk. I constantly think we are not doing enough, but I have a college daughter that reminds me how much we are doing.

It’s hard for her to be here. We are practicing at a level not right for her. She wants to go back to her college town and move into a house with teammates. It’s the right thing for her and for us; but that is excruciating to me. I will miss her and I’m not sure I would ever have been ready to know she was moving out for (most likely) the last time. It also means we may not see her for a couple months while the pandemic settles down, that hurts a mama’s heart.

We’ve been making the most of this. We’ve had more s’mores, more family dinners, movie nights family walks, and game nights. The boys have had more energy, not exerting so much at school. Sleep has improved for a child that struggles with anxiety. Jason and I are as close as ever.

Then two days ago Rowen fell and broke his leg. His bones are weak because of daily steroids (the same reason his immune system is suppressed). We have lived in fear of a moment like that since diagnosis. We know it could mean he may never walk again. He was slowly losing the ability anyway, but to lose it because of a break doesn’t seem fair.

Moments after the break, I was holding him. Tears were falling down his face, he started to shake out of fear and shock, and he cried a question, “will this make me stop waking?” I didn’t cry, but I didn’t answer either. I just told him I was going to be there no matter what.

He hasn’t been able to bare weight since it happened. I’m thanking God it happened while Jason is working from home. We are lifting him in and out of his chair, bed, the toilet. We are using a urinal because our bathroom is not accessible.

I was able to do all of that before the break, but he was helping during transitions. Now, I’ve done it 3 times and I know I can’t do it much more. He is heavy for me. Jason has had to do almost all of it. We whispered to each other that we need to find out about a hospital bed and hoyer lift. We will call the contractor for the bathroom Monday and figure out how to protect the boys’ immune system while also having a bathroom they have to have, built.

We are very hopeful that he will walk again. This however, has been an eye opener. As much as we thought we knew, you simply don’t know until you do.

Sleep has been restless. The first night after his break, I laid awake with my hands on him, praying that God would protect him from FES, a terrible, fatal reaction to bone breaks known to happen in DMD. Each time he moved, I would startle awake and start to pray again.

That same night, I told myself, “you need to run; wake up tomorrow and you go run that mile loop you take the dogs on.” I woke up that morning exhausted and stressed and that run never happened.

This morning I was more rested, but I wasn’t in a great mood, I snapped at the same child two times. I just looked at Jason and said, “I’m going for a run.”

It felt great. I smiled most of the rest of the day. A lot was going on inside my head. There was fear and stress and sadness. It was bubbling and the only way I knew how to relieve all that was running. It’s why I started running after the boys’ diagnosis.

It gives me a bit of control in a time when I have so little, in a time when there is so much uncertainty. I choose how fast to run, how far to run, where to run, when to stop, what to listen to during the run. The pounding of my heart, the heavy breathing, the sweat dripping…all of it was stress and fear leaving. It isn’t magic, it doesn’t last forever, but if I can string together 4-5 a week, it will sure make me feel better.

My One Thing

This lent I have been using an idea I learned from my favorite podcast, Abiding Together. At the end of every episode the three women will all give their one thing, sometimes something spiritual and sometimes not. The one thing is something that has helped them grow in faith or in some other way.

Last year was one of the hard ones for me and I needed to focus on all the positives in my life and find my joy in the journey again. Basically, I am using my one things as a gratitude journal. I’m using this lenten season to grow in my ability to live out 1 Thessalonians 5:18, “In Everything Give Thanks.” I want this. I want this heart. I want, even in times of sorrow and suffering to say, “thank you Lord, for allowing this so that I may grow closer to you.” blog 1 (2)

I have been using social media each day to post my one thing, on instagram and facebook, both accounts are under my name if you are interested in following the rest of my days this Lent. Today, my one thing is being mom to my three sons with Duchenne Muscular Dystrophy. I’ve been writing this one in my head for the last several days. It is long and deserving of a blog.

We were on a family walk. We’ve been going two miles everyday of quarantine to get out of the house and for change of scenery. My two children that were walking turned to take a different route home. My three children on wheels were ahead of us, driving too fast for my husband and I to keep up. I watched them for awhile. They were driving side by side by side. They were laughing and joking and being brothers. The beauty of it struck me. I tried to verbalize it to my husband, but I failed to use the right words to truly get across the inflated feeling I had in my heart. It was so full I thought it might burst. I felt special, blessed, in on a secret.blog

I’ve thought about the moment over and over the past few days. How do I express what it means to me to be their mother?

I love all of my children with every fiber of my being. I remember the first moment of motherhood. Extremely young and honestly, unprepared for the amount of love that would rush my body when I felt the weight of her little body in my arms.

Those that know me well have heard me say and many of you may have read me write that I was scared to be a mother. I really didn’t even know what the word meant. I was convinced all the months of my pregnancy that I wouldn’t know what to do. Having been removed from my own mother several times, it was a real fear for me that I might also have my child removed from me.

Was I experiencing extreme anxiety? Yes. I didn’t know it then. I didn’t know how unrealistic it was that I was assuming that was part of motherhood I would inherit.

The moment I held her, everything in my world felt right. It felt as though I had found the thing I was meant to be. The fears left me as fast as my love for her rushed through my body.

I was very fortunate that my first job after college and as a young, inexperienced mother was as director of an Early Head Start program. A program designed for mothers, many of them just like me, young and inexperienced. A program that included parenting classes, home visits, vast amounts of information on how to help your child learn, lessons on how to become your child’s first teacher. I guarantee I learned as much from that program as director as any mother enrolled in the program. I worked with mothers from all over the world, Mexico, the United States, Sudan, Guatemala, Cuba, etc. I was teaching a class about child care in Grand Island to a group of Sudanese refugees when I learned the art of the bounce-and-rock-and-pat-the-baby-to-sleep secret, watching a woman from Sudan magically put her very screaming baby down for a nap in record time. I used that method on my next five children; dare I say, conquered it.

I was also very fortunate to marry a man that brought me into the Catholic church. A church that believes motherhood is a vocation. A faith that sees Mary, Jesus’ mother, as our mother. A mother Jesus shared with all of us to help us grow closer to her son.

It was as a young Catholic mom that I first learned about the sorrows that pierced Mary’s heart. It was from Mary I learned that you can know a sorrow before you experience it. Mary knew sorrow before she ever watched her son crucify. It never stopped her from being the mother that her son needed, or the mother that the whole world needed. Little did I know then, that I would someday share with her the feeling of sorrow before it was experienced.

I watched other moms, gleaning from their already established abilities. I read every parenting book and listened intently to my daughter’s childcare providers that would give me suggestions. I would, like everything else in my life up to that point, study how to do it. I would study how to be a mom.

I learned how to be a mom. When we were blessed with each of our other five children, I felt as ready as you can ever feel about adding children to your family. Then, our second child was diagnosed with Duchenne Muscular Dystrophy. A disease I learned in just a matter of minutes would take my son from me, would kill him. As the first two years of diagnosis passed, another two sons were diagnosed.

There was not a book to study to tell me how I was supposed to be the mom they needed me to be, there is still no book with all of that information in it. Instead, I had to rely on the things I had already learned and I had to learn to trust my instinct. I found an amazing group of mothers that were already rocking motherhood in this world of motherhood that didn’t have a book. I watched them and I learned from them.

I leaned heavier on my faith and started to learn the stories of the saints, so many of whom owned stories that seemed impossible but who left lessons and directions on how to do it. Lessons as important as how to die.

An example. I saw this just yesterday on twitter. Someone retweeted a tweet. I can’t take credit for it, but apologize for not being able to give it to the right person either. It was a lesson from one of the newest saints, Pope Saint John Paul II.

At the end of his life, suffering greatly from the affects of Parkinson’s disease, he still addressed massive audiences. He didn’t want people to look away, he wanted them to see him. He wanted the world that he taught how to live, to also know how to die. He wanted us to know that the saints were there for us and brought us hope, not because they conquered the world, but because they allowed Christ to conquer them. There is no one like a saint, that will teach you how to live with joy, how to suffer with thanksgiving, or how to die with hope. These are the lessons I need to study and learn to be the mother my sons will need me to be.blog3

It’s been 10 years since diagnosis. I cared for each of my sons as newborns and infants and toddlers. I changed them and cleaned them. I took care of them just as all the mothers reading this cared for their newborns and babies. They learned to become independent as we celebrated those milestones. Then, almost as quickly, they started to lose their independence. As the years led up to this, I dreaded it. I was again very afraid I would fail at being the mom my children needed me to be. It is here now, but it is not a feeling of dread that consumes me.

I have been so blessed. Blessed by the experiences at Early Head Start, blessed with a God fearing man that brought me into the church so full of goodness and teaching that it fuels my heart, and blessed with these beautiful boys.

I worry about the boy’s dignity. As they grow older and disease progresses, we will continue to face experiences and circumstances that could threaten that, but I know it will also be respected. I feel privileged that they have a trust in me to both care for them and protect their dignity. We have conversations I never thought I would have to be had. They may be uncomfortable at times, but we grow so much closer because of them.

I share my boys pretty openly with the world. They are contagious. Their smiles, laughs, fearlessness, perseverance, and joy even in the face of obstacles and suffering attracts people with a magnetism I find rare in this world. It’s a pull to be part of something very special; so very special, that it is rare for a parent to experience this kind of love. It’s not just for the three with Duchenne either. My other children have been privy to these same experiences and as parents we are privy to share a special love with them also.

It doesn’t escape me that these words have been put on my heart during the Covid-19 isolation, when the ones sacrificing the greatest are caregivers, the nurses and doctors and other healthcare professionals. Caregiving is a gift. I hear so often, that so and so is so lucky to have a mother, father, daughter, spouse like that to take care of them. The truth is that it is us mothers, fathers, daughters, and spouses that are most blessed.

It is heartbreaking at times to watch the ones I love suffer? YES. Is it exhausting at times? YES. Do I have bad days? YES. Do I love my job? Yes. Would I do it again to get to be their mom again? YES. Do I celebrate the successes? Yes. Do I count being their mom amongst my greatest blessings? Yes!

These boys have changed my life.  Knowing the little details of their life, walking next to them on their journey, and being their caregiver hold more beauty than even the grandest of sunsets, the biggest of cathedrals, or the fullest of moons. It will never set, it will never fade. It is everlasting.

Today, my one thing is getting to be their mom. 


Word of the Year Update: Resilient

It’s really only two months into the new year and it has become obvious why God put the word resilient on my heart. Like so many other areas of my life, he is asking me to live it out.

I definitely started the new year in a place of woundedness. Wounds that had been lying dormant for most of my adult life were reopened. My two worlds crashed into each other like waves from a massive storm at sea. My lack of control over my children’s health made me feel useless and like I was failing. The harder I tried to be more perfect, the harder I tried to be more in control, the more broken I felt. It opened old wounds. There were several situation in my young life that I had no control of and that often left me feeling like I had done something wrong or I wasn’t good enough.

It became glaringly apparent that my pain although completely warranted at watching my children suffer, was connected to old pain that resurfaced. I’m in the process of healing from all of those wounds. I’m learning to be gentle with myself. Those of you that know me best know that I am not kind to myself. I hold myself to unrealistic expectations, and when I fail at those unrealistic expectations I am cruel to myself with my words and beliefs in myself. There have been tearful days as I wrestle with old habits and beliefs and the truth. The truth that I am loved and I am good. It seems like it shouldn’t be so hard to know that, but it has been difficult for me.

As I started this healing process several other things in our family just kind of went haywire. My husband has long had an area on his face that would get irritated when he shaved. Sometimes it would bleed and scab over. In the last year it became enough of a nuisance that I asked him to go to the dermatologist when our son had an appointment and ask about it. I’m so glad he did. The area was skin cancer. It is the only area and it has been completely removed. It happened quickly and other than 12 stitches, pretty painless. The stitches are out and the doctor did a very good job placing them just along the smile lines and as it heals I think the scar will be hidden when he smiles. He smiles a lot! We are feeling blessed that it was only that. But, wow, it really shocked us and you better believe when I’m putting sunscreen on all the kids at baseball games, I will totally be the wife to walk out the the field where he is coaching and put more on him too!

As he was getting his stitches, an appointment I had hoped to attend with him, I was actually home with a sick boy. Our son Rowen got Influenza B twice this year. The second time he also had pneumonia. It did require him to stay a night in the hospital for extra fluids and meds and then several days at home as he regained strength and we waited out a bout of Influenza going around his school. It was the first time one of our boys needed hospitalized and we realized how underprepared we were. It worked out because Jason’s mom and several other people showed up big time when we needed them. But we now know we need to have a plan and need to have another person or two that can give the boys medicine if we are both at the hospital or an out of town hospital is required.

Towards the end of January our son Chance sprained his MCL at basketball practice. At first we thought it might even need surgery, but thankfully a couple weeks of crutches, a knee brace, and physical therapy was all that was required. It was tough on him, he loves playing sports and this ended his basketball season and delayed the start of his baseball season. He handled it as well as could be expected and has been rather mature about the process. Let me tell you though, that he has been jubilant the past week because he was cleared to practice.

I know how much Chance helps with his brothers and around the house, but his injury really showed us what a helpful and giving young man he is. It was also good for the entire family to come together to help him when he was not allowed to put weight on his knee. Maybe I’m just wishfully thinking, but I think his brothers even realized how much he helps them and seem to be more thoughtful about asking him for help, instead of demanding it.

Resilient seems to be a good word for me and my family this year and in this season of healing. I always think the next thing is the one that will do us in. But that next thing never stops us. Sometimes it slows us down and we have to find new footing, but we keep going. In this, all of what I just shared, we have done a lot of giving it up. We alone cannot do this, any of this, but when we let God do the heavy lifting, it’s possible. I think that it’s not been realization, because I knew this is how it is supposed to work, but I’ve come to a place where I figured out how to actually do it. I’m not perfect at it by any means, I stumble nearly every step and there are going to me places I fall. I’m sure I will spend the rest of my earthy life working at it. I’m learning how to give up control; learning to wait on his timing, not mine; and I’m learning how to ask him to meet me where I am, especially in the hard places.