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.

Daddy Long Legs

I loved the green house.  It was the name my family christened the green house we lived in for several years of my early childhood.  The house several of my sisters came home to after being born.

It was across the street from the elementary school and was the biggest house we had ever lived in. Before the green house, we lived in small brick 2-3 bedroom, low income houses.

I have many memories from this house.  I remember my dad walking me across the street for my first day of kindergarten.  I was wearing a dress with a red skirt.  The top of the dress was made of red and white stripes. Buttons down the front.  I skipped all the way.  I loved school.

I remember a Christmas Eve that I looked out my upstairs bedroom window to see my parents carrying a yellow plastic kitchen into the house.  At the same time I noticed an extra bright star sparkling in the sky and just knew it was Santa, who of course  was leaving after dropping off the toys for my parents to put under our tree.

I remember sitting in or near the garden as my mom worked, picking tomatoes.  The same warm tomatoes I would later sprinkle salt on and eat like an apple on the front porch.

I remember a day in the garden when my mom must have received a phone call telling her that Grandpa Al, her dad must have taken a turn from the worst.  She saw a babysitter, Theresa, walking home from school and yelled to her to come stay with us so she could go to her father.

I remember the great backyard.  There was a club-house attached to the garage.  It had a waterbed in it and we would sometimes pretend it was our own home and play house out there.  I remember some stray kittens that lived in the garage and gave me and I assume several of my sisters ring worm.

There was a small pond with rocks built around it.  For the most part it was in disarray, but one marvelous summer my dad cleaned and took care of it.  We had fish.

The alley was adjacent to the garage and club house.  It was rock and dirt.  I have a distinct memory of a morning following a rain.  It was nothing but mud.  I ran through it over and over, until finally I slipped and landed full body in the mud, covering myself in it with laughter and glee.  Feelings not shared by my mother when she found me swimming in it.

My favorite part was the patio.  It was large with partial walls.  We had my mom’s sisters over once for a barbeque and I still remember that it was the first time I had ever tasted 7 layer dip. I love that dip to this day, only I leave the black olives out.

Off the great patio of my youth, was a shed.  It should have been used for shovels and lawn mowers.  We used it for such better things.  We would use it as a fort.  We would hide in it.  We would play house in it and school, too.

Since losing my mom this past September I feel like I’ve struggled to find memories of my time with her, which was really only my childhood.  I have many regrets about years spent away from her, but those are to share another time.

I have a daughter that graduates from high school in two months.  As I sat sorting through pictures for her reception, I found this one.  My sisters and I playing one of our games in the shed.

I smiled.  It was a happy memory.  A memory of me as an innocent child.  Loving my house, my sisters, my mom, and my dad.  It was before I can remember any thing other than childhood magic.

There were spider webs in the shed. My mom was near me for a reason I can’t remember when I noticed a spider on a web.  I showed her.  She told me it was a daddy long leg.  I remember laughing, thinking what funny words those were.  Then she told me that as a young child she used to pull their legs off.  I realize most of you have no idea what kind of a child I was, but I was quiet and shy.  The thought of pulling a spider’s leg off scared me; and then she did it, pulled a leg off right in front of me and I watched the spider hobble off on the rest of its legs.

It’s funny how our lives run together.  How our present and past and future worlds all coincide at certain places. Twenty years later, I was a boy mom.  A son found a daddy long leg and showed it to me.  I told him how his grandma used to catch them and pull their legs off.

Finding this picture was a blessing; with it came  a flood of happy memories.  Sometimes the bad stuff is easy to remember or maybe it’s just bigger and takes up more space.  I’m working so hard at being softer. Having a kinder heart.  I think it is paying off.  The more I forgive and accept, the more the happy memories come to me.

It is lovely to think that the magic of childhood I work so hard to give my children is because of the moments of magic I experienced in the spaces between all the rest.

Snow Days

Snow days. At the top of every kid’s favorites list. My children enjoyed a snow day today; waking up before the alarms clocks went off, checking to see if school, had in fact, been cancelled.

Oh, it was a great day, complete with snow angels, fresh baked cookies, hot chocolate, and heaps of wet snow pants, hats and gloves. Towels lay scattered around the house in feeble attempts to protect our laminate wood floors.

I’ve lived in the Midwest my whole life. On a day like today it’s easy to think back to the snows days of my youth. I especially remember one that must have been during my freshman or sophomore year.

That would have been before wi-fi and I uber competitive high school sports. There were no practices, no video games.

It was a just big snow. We must have missed more than one day of school. We wanted to go out and play in the snow.

Sometimes in my shared memories “we” means my sisters and I. This time it means a whole gaggle of kids. I was living in an emergency protective shelter. Other than not living at home, days were much like any of our peers’ days might have been. Breakfast, school, after school, evening meal, homework, bed time. Differences, of course, being that we were not home, they were not homemade meals, and they were not our beds and no one was getting a gentle hug or sweet kiss goodnight from a mother, father, grandmother or aunt.

The world’s of the children inside those shelter walls may have stopped, but outside those walls was a major winter storm.

I don’t remember thinking it, but I’m sure we must have, can we go out and play in the snow. There were many of us without a winter coat or even clothes that fit us properly. I was old enough at that point to be bitter enough to have stopped believing a childhood was within our grasps.

But the younger children, it must have been them, believed we could have a snow day. The staff came up with a tote, probably more than one, of winter clothes. I remember going through the clothes and finding what we could that would fit and keep us dry.

We went out and played in the snow. In my memory it lasted forever. I remember coming in and I was sweating from playing so hard. We ran, we threw snow, we attempted to build snow everythings.

I don’t remember much about the rest of that day. I don’t remember if we went in for hot chocolate and a snack after or just went back to our rooms or the common area.

I don’t remember a thing about the staff that gave us that magical day. I don’t remember a thing about any of the other kids.

In fact, I don’t know why one of those kids was in that shelter. It wasn’t something we talked about. Perhaps we were all trying so hard to forget our own truths that we couldn’t bare someone else’s. Perhaps our own was so hard and heavy, we could not bare putting it into words.

I remember a day. A day all children should be able to conjure when thinking about childhood. Snow, lots of snow, no school, and playing.

I think childhood should be magical. I’m so thankful to those that allowed me glimpses of what that should look like. I hope 30 years from now, my children remember just a little bit of magic from today.

Hidden Joy

We live everyday with Duchenne so when I say yesterday was full of it perhaps it’s not clear. The thing is that we get into routines and find our own normal and days turn into weeks into months and we just live this life.

But then we have days where things don’t go routinely and the disease seems like a bigger piece of our life.

I went to help Max up and down the stairs to the cafeteria at lunch. It’s something I do 2-3 times a week. The chair he sits it, that provides him with extra back and foot support was broken.

Rowen fell at school. At first, it was just an email letting me know what happened. Then it was a phone call because he was in the office with pain near his hip. He came home to rest and fell a second time. Falls are very scary.

Rowen is fragile. Any fall poses the risk of a break. A break in a child with Duchenne has the potential to take away the ability to walk or worse could cause something called a Fatty Embolism Syndrome (FES), a serious and life threatening condition.

Needless to say, falls cause a lot of anxiety for not only the parents, but for the child as well. I think that anxiety is probably why Rowen needed to come home. The fact that he fell two times in one day is a display of disease progression.

Charlie wants desperately to play baseball this summer. Several of his friends are now transitioning to travel summer ball. I’ve had to have a few conversations with Charlie about it. At his age, it is not always clear to him how his disease makes him different from his peers. It was hard to tell him if he was on a travel team he might not be able to hit or field the ball.

That, of course was in addition to daily meds, stretching, therapies. It was a lot.

Many times that’s enough to feel defeated. It’s ironic that as the boys grow weaker though, I think our family grows stronger in order to deal with the always changing and deteriorating nature of the disease. We grow more resilient.

We also work hard at finding the joy in every situation. It’s the only way I can imagine living this disease without giving in to the fears and realities and living in fear and desperation. We have to find the good in every situation. It is a survival technique for us.

Hidden Joy

When Max’s chair was broke, two teachers helped me carry it upstairs as I carried Max and they tried to find someone to fix it.

Hidden Joy

His school is a small private school that is not completely accessible, although they have fundraised and are working to make it a building more accessible to our sons and everyone.

Hidden Joy

It the midst of the chaotic day, I get an email from Max’s religion teacher.

Here, she is pictured with Max and another teacher. They were the two that helped me carry his chair.

All I see is love in this picture. They were watching a video of Max. One that I had shared on social media celebrating how well Max is doing in spite of Duchenne. They were huddled together celebrating my boy. All I see is love.

Hidden Joy

When Rowen fell the teachers and school secretaries took care of him and kept in contact with me.

Hidden Joy

Rowen was okay. Both times he fell. He got back up again.

Hidden Joy

Charlie doesn’t see how he is different. He could be very aware and it could change his joyful nature, but he doesn’t and that’s beautiful.

Hidden Joy

I swallowed my pride, embraced my humility and started asking friends’ parents about their summer plans for baseball. I had considered trying to have him settle for being a manager on a travel team and give up playing.

Then I found a friend, someone Charlie really enjoys spending time with that was willing to play on a parks and recreation team if Charlie was willing to play too! Charlie can play and with someone he really likes.

Hidden Joy

At the end of the day, our blessings and our joys added up were greater than any havoc Duchenne created.

Here I Am

We woke up to small amounts of snow on the ground anD snow continued to fall most of the morning. Living in a small Midwest community means the snow doesn’t get cleared until the snow stops falling.

It’s fine unless you drive a 12 passenger van. If you drive a van that size any amount of snow on the ground makes travel difficult.

Two of our boys went to school late today. They have a modified schedule to help hem save energy. They both have Duchenne Muscular Dystrophy.

I dropped my oldest off first. He walks well enough and keeps his wheelchair at school. This was the first snow since we purchased this new chair. It doesn’t do well in the snow and I left him at school worried all day about how he and it would do.

I took my middle son to elementary school. He needs his scooter to get in and out and around the school. He got his scooter covered in snow. I knew it would it thaw and drip all over the floor, making it a hazardous area where he could fall. A fall could be very bad. We dried the scooter off and then put towels under the scooter to prevent puddles. I still worried all day and could actually picture the fall in my mind.

By the time I got to my class at the YMCA I was 20 minutes late and frazzled.

Then there is my shoulder. About 10 days ago I was loading my oldest’s new chair into the van. I don’t have it completely figured out yet and it opened mid-lift, causing me to shift uncomfortably and catch the chair afraid for it to fall and break. I thought I pulled a muscle in my shoulder.

I took it easy and it sort of felt better. But today I reached a point of pain that has caused concern. I can lift the boys and chairs in and out do the van, but can’t lift my arm above my head. Today putting my arm into my coat caused me to wince.

I’m starting to think I’ve torn my rotator cuff. I’m giving my shoulder the weekend off, but if not better on Monday I’m going to get it checked out. My major concern is that they are going to give me weight limits until it heals and that means I can’t help my boys the way they need me. I hope it’s nothing. I’m praying it’s better by Monday.

I’ve felt run down all week. I think my body was trying to fight off the flu that all my kids had and I’m just fatigued. I’ve stayed home several days over the last 2 weeks trying to recover.

I’ve had a blah kind of day. I’m so thankful for my husband and kids. We had a good family night and that always makes my heart happy.

Today though, especially after driving the van through the fresh fallen snow I almost cried. After my workout at the Y this morning, I got a song from Mass stuck in my head. Except, I could only remember one line. It went, “Here I am Lord.”

I tried hard, but I could not remember a single other word from the song. I thought,”do I really need to say anything more?”

Here I am Lord. I give this all to you because I know you will take care of it as only you can.