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.

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.

Resilient

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.

Sacraments

This is a pretty Catholic heavy post. But it is Us.

We are Catholic and we lean heavily on our faith. I haven’t posted in a while on the blog so to catch you up, our family is heading into a big transition. Our first son with Duchenne, we have three, is about to stop walking. I thought I was prepared for this transition, but the truth is that most days it rips my heart out.

Early in our journey with Duchenne, we found this amazing doctor at an amazing hospital. One of the first questions she asked me was, “are you a faithful family?”

The answer was “yes.”

With a heavy accent, she said, “Good, families who believe do better.”

I don’t think I even knew what she meant, as I was still reeling from the diagnosis, the next diagnosis, and the last diagnosis. Looking back, my faith then was only a splinter of what it’s grown into since the boys were diagnosed. The neurologist that day was right, I can’t imagine how dark this journey might me without a faith life. Faith gives all of us a hope for something better, even if after life. Duchenne is a fatal, progressive disease, with no cure. All we have is hope for a better future. Faith gives us that hope.

Today was a special day for our family. Three of the boys received a sacrament. Typically, I would take a picture on such a day, as I do for First Communion, Confirmation, First Confession, and plan to do in the future for Marriage or Religious Vows.

There is one sacrament left though. The “Anointing of the Sick.” This is to often equated with last rites, but it is actually a sacrament, much like confession, that can be received several times.

We took no pictures for a couple of reasons. First, because it was part of a ceremony where my husband, my mother-in-law and myself were involved. That’s all our picture takers participating in the ceremony.

Secondly, this is a sacrament this is so often given only once in a lifetime, just before death. It is somber and a sign that your time with the person on earth is about to end and life will never be the same. Though, it was special to receive the sacrament in a less stressful situation and in a peaceful place like church; it still seemed too sacred to photograph. I want to write every detail though before my memory fades.

It started with Mass. The homily was about healing, the different ways it can look. The part that blurred my vision with tears was when Father said that in every example in the gospels, when someone was healed, someone actively sought their healing.

It made me think of my son, Rowen. It was he that asked to be blessed by a priest to help him from falling. He is falling so often, that it it making it unsafe for him to walk. A fall could lead to any number of injuries that could be fatal for a boy with Duchenne Muscular Dystrophy. His hope was that being prayed over would save him from those dangerous falls. He is actively seeking his healing.

After Mass, Father came out and motioned for just me to follow him into the sacristy. Once there, he asked me how old each of the boys were.

He told me that he once helped a mother whose child had a fatal genetic disease. That mother had asked him if she should have more children. He told her yes, because regardless of how those children were born, they would be at her side forever in eternity. He looked straight into my eyes and told me that my boys will forever be at my side in eternity. He also told me that he wanted to anoint all three of them. He said that being anointed would help ease any fears the boys might have.

We then walked out to my family. My husband, my mother-in-law and 5 of my 6 children. He introduced himself to the boys and they introduced themselves to him. He talked to them about being annointed, how it would fill them with graces to help them with the things they need help with.

He anointed Max first. He said a prayer as he rubbed oil on Max’s forehead and then the palm of both hands. As soon as Rowen and Charlie saw what would happen they held their hands out open, eager for the oil to grace their skin. To date, it is the most simple, yet beautiful act of faith, I’ve witnessed. Father then anointed Charlie and Rowen.

Father also told them about Saint Gianna. Saint Gianna was pregnant with her fourth child when she was found to be very sick. It was either save her life or her child’s. Gianna died so that her child, a daughter, would live. Her daughter is still alive and Father will ask her to pray for each of our boys. Her daughter gave a relic of her mother to our priest.

He blessed each of the boys with it. He handed the relic to them and told them to hold it and ask St. Gianna for help. He gave it to Max first, then Charlie, and finally to Rowen. Rowen held it the tightest, the longest, and closed his eyes the hardest.

He also gave the relic to myself, my husband, by mother in-law, and both siblings present, Mary and Chance. At this point, tears were freely flowing down my face. Father said, “Oh, Mama.” He wrapped his hands around my face and blessed me. I’m crying now just remembering. I looked up to see my husband fighting tears.

It was over quickly after that. As we walked out of the church, Max grabbed my hand. He looked up at me and said he was happy that Father blessed me. He said, “Mom, I know you were crying because you love us so much. Mom, I know how much this meant to you. I’m glad Father blessed you because I know you need it, too.”

More tears are currently flowing down my cheeks.

We drove to lunch. My mother-in-law, also known as Tayta wanted to treat us. When we pulled into the parking lot of the restaurant, Charlie grinned and said, ” I never knew about St. Gianna.” Then he looked up to heaven and screamed, “Thank you St. Gianna!”

Considering the magnitude of our experience this morning, we spent the rest of the day being mundane; yard work, phone calls with our oldest daughter, movies with Tayta.

Today put our Faith into focus. Faith is simple. Just believe. As we prepare for the next steps of our difficult journey with Duchenne, I’m reminded of a lyric from a country song I heard recently; “If the house has good bones, it won’t crumble.”

I feel like that is part of what we did today. We secured our foundation. Our foundation is in Christ. We have good bones, not the Duchenne bones that are ever so weakened by the years of harsh treatment their bodies have experienced. We have good ‘faith’ bones, that will outlast all of us and they will not allow us to crumble.

Remembering

Memories are fleeting. As I create new memories with my children, I find that my memories from childhood are becoming more difficult to summon. This is me trying to preserve them.

Some memories seem more like folk-lore and I really have no way of knowing if they are real or pieces of an old movie that I’ve seen or a book that I’ve read.

I remember being in a room, on the top floor of either a hotel or an apartment. There was a balcony just outside the front door. I think it had to be an apartment because I remember coming from down the hall to hide behind the chair my mother was sitting in. I remember the same hallway though from a house we would live in half a decade later But because, I would read once, years later, that my mother had called the police; that’s my memory. Real or not real. Standing behind my mother’s chair in the front room as men stormed in. Except, I wonder how real it is, because in my memory they are dressed as the Village People. Is it something I actually witnessed but could not make sense of as a child and so created a version that made sense to me?

I have no way of knowing. My mother died this past year and our family history is not recorded except in the memories of those left behind, many of them not shared memories.

My mother, the most beautiful woman I have ever seen. I will never be so beautiful, I’m not sure anyone every will. It’s what I always remember, good memory or not, is how beautiful she was. Perhaps, it is how we all remember our mothers.

There are memories of the senses. The smell of the green house, one of my childhood homes, the first time we walked through it, before my mother rented it. The green house smell, musky, dank, hot still air.

The sound of the old clock radio all through the nights spent at Dorothy’s house. The radio voice that was present in the wee hours that we stole and the moments when we woke from sleep.

The taste of a warm tomato, sprinkled with salt just out of my mom’s garden, only one of two I remember her having. I was sitting in one of those gardens when I remember her running out of the house. She had just recieved a phone call saying either her dad had just died or was about to.

The sight of my mom and dad carrying a yellow plastic kitchen across the patio from a bedroom window above on Christmas Eve. I still believed in Santa after that.

The taste of coffee cake for the fist time sitting at a table, looking out the window at a lake cross the street. I was 9. I still remember the taste, wishing just once I could taste it again. My attempts a making it have never been successful.

There are awful memories. That’s just want they are and I wish they were not.

Guilty memories. Making it hard to forgive myself, but maybe forgiveness isn’t necessary. I’m learning that as a child, taking care of me, instead of another, was not wrong. Although years of self hate and self doubt make that a hard place to find firm footing.

Angry memories. The sort that are hard to forgive and steal many more moments of happiness from me than exist in anger. That I am letting go one by one. I think I am finished.

And the other tons and tons of memories. The black eye from my cousin Dusty when we played baseball at Easter. Dancing in the kitchen with my mom and sisters at almost every holiday. Laying in the back of the sation wagon with my sisters on trips to Gothenburg. A prisoner named Shorty, who would flood ground squirrel tunnels when we visited on Sundays just so we could watch them run out of the other end. Being baptized the same day as my sisters. Kid meetings. A bed of mashed potatoes covered in a mixture of hamburger, pork and beans, ketchup and mustard that tasted like heaven. A hundred pretend weddings to Bobby Fred in the sloping dining room at Dorothy’s. The first time I held his hand walking to Kipp’s for an ice-cream. And bike rides and fisher fountain, worms at Crazy Dick’s, delivering the tribune on my bike, sitting on the roof much to my mom’s displeasure. My first bedroom at the house my mom found for us when she was better.

My room when we first moved to Hastings with my mom.
I loved riding my bike.

Oh, memories. I suppose they could go on and on. My childhood was not ideal and yet in many senses it was extraordinary. I had experiences you could never pay for and that only come once or twice in a lifetime. There are parts that left room for healing. Some of it seems as if it held magic. And it was enough to fill pages and pages with my stories.

My Home

I love this state I call my home. Here is a poem I wrote 20+ years ago that still rings true for me.

MY HOME

My home is in Nebraska

where the long grass sways in the powerful wind.

The grass is a sea of greens and yellows,

drowning in the wind.

The grasses swim as the wind blows.

In summer storms the wind is full of strength,

as it dives into the green seas,

causing them to scatter across the prairies.

The grass sways as the wind blows.

On spring days it is gentle,

flapping the clothes in the line

and catching the hair of young lovers.

The grass dances as the wind blows.

It shakes and moves and no human could.

It would wear red, if in a hall,

for it is free, moving in which ever way the wind directs.

The grass is a wild mass of color.

It is free.

Never stopping for the breath that it steals

from the inhabitants with whom it shares the land.

D-Day

July 8th.  It will forever be the day that changed everything.

Max, April 2010, he was diagnosed in July.

14 years ago, on July 8th I was pregnant with my oldest son. It was the hottest summer I have ever experienced. I was so big and I was so hot, but I was happy. Our daughter was going to be a big sister. My husband was going to have a son. We had good jobs, a house we loved and I was living a dream.

13 years ago, on July 8th, we were in Toronto, Canada. My husband was a groomsman and our daughter was the flower girl for dear friends from college. We left for Toronto the night of the 4th of July and we watched fireworks light up the night sky as we drove through the night. The wedding was beautiful, our daughter had more fun than she had ever had and somewhere in the midst of the wedding chaos I started to think and soon found out we were pregnant, again.

11 years ago, on July 8th, I was pregnant again, with anotgher little boy. We laughed our at ourselves and with everyone at the speed at which our family was growing.

10 years ago, on July 8th, we were a happy family of 4.  We had give our fourth son two middle names to make sure we used all of the important family names as we were sure our family was complete.

9 years ago, on July 7th, we were pregnant with our fifth child. We had a house full.  My husband’s parents were at the house.  They were going to stay with our kids the next day so that we could take our oldest son Max, 4 years old, to a specialist in Omaha.  I’m not sure what exactly I thought the day in Omaha would entail, but it was nothing I could have expected.

9 years ago, on July 8th, I walked into the specialist office with what I truly believed was a healthy, beautiful boy.  I left with a son that was going to die.  It broke part of me.  That day broke part of me.

After a brief talk of family history and a brief physical exam, the doctor turned to us. She said that she would confirm it with a genetic test, but she was confident that Max had Duchenne Muscular Dystrophy. For the first and only time in my life I experienced an out of body experience.

I saw myself sitting there in the exam room, just me and Jason and the doctor. The doctor had asked a nurse to take Max to another room (I should have suspected something awful at that point). There were drawings on the whiteboard of our family tree. The doctor was saying these words: wheelchair bound, not able to perform activities of daily living, weakened heart, weakened lungs, carrier, 50 percent chance, other sons, die by age 20. Words I could not comprehend.

My mom called me on the way home.  I cried.  I cried. I cried.  I would not be able to tell you what I said to her, but I remember we passed a semi-truck when I was on the phone with her.

I cried all the way home.  When I think of that day, as I am right now, I experience the same brain dehydrated, broken hearted, fierce headache.  When I think of that day, I can feel how bad my eyes hurt from crying.

I remember getting home and not letting go of Max.  He was asleep, exhausted from the day.  I laid on the couch, 10 weeks pregnant and held him to me.  Silent tears slid down my cheeks and then my neck, slipping between the skin on my neck and the skin of Max’s cheek. The tears binding us stickily together.

I remember my father-in-law.  He kept rubbing his head.  And in his own heartache, as we explained what the doctor said, asked, “will his mind be okay?”

I kept laying down.  It was as if Max had died already. That is the way I grieved.  I know I scared my husband.

I remember that same day, going down to my then 9 year old’s bedroom and telling her.  She never cried, but the word wheelchair upset her.  She couldn’t imagine.  Neither could I.

And somehow, at the very end of that day, my husband started a fire pit and we had s’mores and I watched the kids play on the swing set, the same one we have now.

9 years ago, on July 8th, at about this time, you can maybe begin to imagine the number of pieces our shattered hearts were holding together as we began to realize the life we had prepared for had just been flipped 360 degrees and after hearing the same diagnosis 2 more times we would begin a journey we never wanted to be on.