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

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.

Thursday Morning Thoughts

Thursday morning thoughts…

I am working through a really thought provoking bible study right now with a mother’s prayer group. We met as a group this morning and had great, thought provoking discussion and now I’m sitting here, chewing on all those thoughts.

We are studying women of the Bible. This week we focused on Sarah and we discussed waiting, as Sarah waited a long time for motherhood. We discussed her handmaid Hagar, how she got mixed up in Sarah trying to do things on her own; and how God saw Hagar, even as she felt insignificant. He saw her and he saved her.

Yesterday, I listened to a podcast that talked about letting your light shine. It’s a podcast by Danielle Bean, the girlfriends podcast, it’s worth a listen! Anyways, she talked about figuring out the things that you are good at, your gifts, and using them for good. She discussed how you find what those things are and let them shine.

As I was walking the dogs and listening to the podcast, I named two gifts out loud that God gave me, writing and public speaking. I thought, I can use these gifts; I need to quit hiding them.

Hours later I got an email, asking that I speak. It’s for a conference at Georgetown University in Washington, DC. It will be one of biggest engagements where I have been asked to speak.

I felt a little like God had been waiting for my yes. As soon as I even thought it, he was like, “finally, I’ve been waiting; I have places where I need your voice!”

I felt like Hagar. Like in all my insignificance, he saw me.

It never ceases to amaze me how at work
He is in my life and how he even uses the very books I read and podcasts I listen to to guide me.

Turning 40

Before the weekend begins I will have turned 40. In the past few weeks I’ve thought about this new age, this new decade, this new beginning.

I thought back to my 30th birthday. I had 4 kids when I turned 30, the youngest had just celebrated his 1st birthday. My goal, the entire year leading up to my 30th birthday was to wear a bikini. I reached my goal and we celebrated at hotel with a waterpark attached. The kids had fun and I have fond memories of them going down the waterslides together and their soaking smiles!

Ten years later I can’t believe there was a time and yearn again for a time when the hardest thing was fitting into a bikini. Ten years is the amount of time it took our family to grow from six to eight; for 3 of our children to be diagnosed with a fatal and progressive disorder; for us to experience a miscarriage; for my husband and I to each lose a parent; and to experience the loss of a sibling. Ten years seems like a blink of the eye and it seems like an eternity.

I’ve grown and changed in 10 years. In some ways, I am the same and in others it is like that younger version of me never existed. I’m thankful for every experience because each one of them has shaped me into a person I am learning to accept, love, and be proud of. It took each of those experiences and many many others to get me closer to the person God is calling me to be. It reminds me of the quote by Saint Catherine of Siena, “Be who God meant you to be and you will set the world on fire.”

I have struggled always with accepting who God is calling me to be; to see my value. I swallowed lies and I made them my truths. I grew up around church and with faith my entire life, but somehow along the way, I either never learned or swallowed another lie. I never believed that there was nothing I could do to earn more favor with God and that there was nothing I could do to fall out of favor with God. I am just now internalizing the love of our Father. It had always been there, but because I thought I was unworthy I wouldn’t accept it. Many experiences in my life were so lonely for me because I could not believe I was worthy of love.

Discovering the truth is changing me. I feel it kindling in my heart. I feel the chains of fear and self-loathing breaking and beginning to fall. I feel myself in the beginning of a warm embrace with my true and authentic self. I am going to let God put all my broken pieces back together and make something beautiful them with them. I am going to let the light shine through my cracks.

I am learning to accept who God is calling me to be. I accept that I will not be perfect and that God already knows when I’m going to mess up. I accept that he will love me still. I am learning to love God’s daughter, just as he always has. That kindle is going to spark as I answer God’s call and I will soon be warmed by the fire Saint Catherine of Siena talks about.

I am excited to turn 40! I am doing something I’ve never done before. I’m going to let people celebrate me. I am going to accept it and soak it all in. For the first time in 40 years I’m going to smile (hopefully without too many tears of gratitude leaking from my eyes), I’m going to hug my family and friends, and I am going to embrace the strong and gentle, open and sensitive loving person that I am not afraid to be.


Recently, someone told me I was resilient.

For days before that, I was praying for God to put a word on my heart. I wanted to practice a word for the year.

I was thinking of words and considering many that I thought would be good, that could help me grow spiritually. But, once I heard the word resilient, it settled deep into my heart and I knew it was my word for 2020.

Recently someone told me I was resilient. I shook my head in disagreement.

I struggle to accept a compliment. I struggle to believe the good others see in me. Long ago, years before I was an adult, I adopted this coping mechanism. If I could tell myself and believe all the worst things, then it wouldn’t hurt as much when someone would say them to me.

I think focusing on resiliency this year is going to do a lot in my life.

I have been resilient.

I’ve been able to get through some difficult situations. This year, I think God is challenging me to think of resiliency in a different light. God is calling me to be more gentle with myself. I think God is calling me to be a person that loves herself and sees herself for what she is, His beloved daughter.

If I can be resilient to the one who attacks my heart and doesn’t want me to believe I’m God’s beloved daughter…

If my heart can be softer and more malleable…

If I give it all to God….

Then the crosses I will bear today, tomorrow, and later in my life will be as God’s Beloved daughter and through Him I will be able to pick up those crosses and follow Him.

I think focusing on resiliency is going to do a lot in the life of my family. Things I can’t even imagine.

My children, overhearing me talk to my husband about the word of the year idea asked me about resilient. After an explanation, one of my boys, my 10 year old who is currently transitioning to a power chair because disease progression is taking from him his ability to walk; Rowen said he wanted to be resilient, too.

He is already one of the most resilient people I know, this year going through more change and loss that anyone his age should have to and is making it out stronger and more independent. But to see Him and all of my children and my husband grow in this area will truly be the work of God in our lives.

I’m excited to see where this year leads us. I will continue to use this blog for many topic areas, but promise to update you here about the things we learn and experience on this journey with this word God has put on my heart.

When Joy Isn’t Winning; Learning to Rejoice in the Work God is Doing

I want to find joy in the journey. I want to share a joy filled life with my husband and children. I want a closer relationship with God. All of those things are truths about me. They have been for a long time. It is hard to find joy right now. I am sad and grief has filled my heart.

There is no other way to say it. My son is losing the ability to walk. It makes me sad. When his legs are hurting and aching at the end of the day, it makes me sad. When he wants to try to run and I have to tell him no because he might fall and he cries, it makes me sad. When he falls, it makes me sad. When I pick him up at the end of the day and he cries, it makes me sad.

I never wanted to let my child’s diagnosis change me, but it has. I’m not the same. This transition is very hard for me. Walking is not it. It, is that this transition, to me, marks the beginning of more hard transitions and I can’t stop thinking about where that will lead. No one diagnosed with the disease has survived. I am grieving for someone I haven’t lost yet. Some call it anticipatory grief and it is real.

Joy is not winning right now. Sometimes life is harder than it should be and I feel like I’m in one of those times.

I have said many times that I think of joy as a mathematical equation. That the sum of all the little joys, when added together, is bigger than Duchenne or whatever it is you are carrying. Right now, Duchenne feels bigger.

It feels like it is this huge boulder sitting on the end of a teeter totter. It’s huge and massive. I have all these little joys sitting on the other end, but they can’t lift the boulder. It also feels like someone, the enemy, the evil one is holding it down with a vice, a death grip. I keep piling the little joys, but the teeter totter won’t move. I was recently describing this to a group of women at a bible study for advent. One of the women said she could see it and she could see Jesus coming down to stand on the joy side. I think she is right and I have to wait for Jesus.

I’m no artist, but in my notes I attempted a drawing of my teeter totter.

To battle these hard feelings, I’ve leaned into the Lord. I took a break from social media. I am spending time each day in adoration, bible study, scripture, prayer and listening to podcasts. I recently listened to a podcast that talks about God putting you in a pause. There is a reason that God wants me where I am. There is a reason it is taking longer than I want it to. God has a reason for keeping me here.

I want to embrace that pause, or this storm. My blog is called weathered storms because I write about the changes that happen in my life from weathering storms, it winning them. My entire house has a rustic, vintage old farmhouse feel to it. When I find an old, weathered anything I fall in love with it. When God is finished with me I want o be in love with me and His process.

I keep wondering why this is happening over the holidays. Why do I feel this way during advent? Joy should be winning!

I am working through an advent study called ReJoice! Advent Meditation with Mary. During that study it was pointed out that Mary, especially in the beginning of her pregnancy, had no proof that she was pregnant. She had not been with man, she was not showing, nor was she experiencing symptoms, but she believed. She rejoiced in the work she knew God was doing, even when she couldn’t see it. Maybe I’m experiencing this now so that I can learn to be like Mary, so that I can learn to rejoice in the work God is doing, even when I can’t see it and don’t know what the work is.

I’m learning, thanks to another podcast, is that there is a fine line between falling into despair and experiencing grace and mercy. The joys, the little ones piling up on the high end of the teeter totter, they are my fine line. There are days I don’t look for that little joy to keep me from falling into despair. Now, that I have learned this new perspective, I hope to be better at it.

Duchenne is a big and hard thing, it is a big part of my life and joy is not going to erase that. Joy will fill be life with light and laughter and it will allow me to rejoice in the love I give and receive. There is more of all those things in my life than there is Duchenne.

I have never been one to accept or ask for help. An amazing thing about God is that He knows everything in my heart and despite all my shortcomings and sin, He loves me. I am His Beloved Daughter. He grants me the grace and mercy I need each day, even without my knowing what I need or when I need it. It is there even when I don’t look for it or see it, it is there. I want to rejoice in the work God is doing.

The last two weeks God has sent me an army of nurturers, all of whom have been women. It seems somehow perfect that during advent, it would be all mothers, all saying yes that would be my path back to Joy. I’m sure they had no idea how much grace and mercy they were delivering.

Last night as the evening rolled to an end and I sat holding my sleeping Mary, she’s been a sick little girl, I watch a burning candle. I noticed that the flickering of the flame was reflecting off a gold Christmas tree sitting next to it. The light was dancing in front of my eyes. I smiled. It has been a few weeks since I noticed something so small and felt it. I took a deep breath and felt weight lift off my shoulders knowing that I don’t have to count all the joys this advent season, I only need to rejoice in the work God is doing.

It is hard to see, but light is dancing on that gold Christmas tree.

Thank you for the hug in the grocery store Erin. Thank you for thrifting for vintage Christmas and thinking of me Carrie. Thank you for the message to keep going harder Mrs. R! Thank you for asking me to make a Christmas wreath Nicki and Heidi. Thank you to all the women at mothers group who have sat with me while I cried and let the Holy Spirit work through you. I am learning so much from you.

I know I am not the only mom out there grieving, I hope you know you are not alone and this comforts you in some way. It’s okay to feel the feelings your are feeling and it’s okay to talk about it.

I know there are moms that want to help others find their joy. I hope you realize it doesn’t take much, a little note or hug goes further than you can imagine.