Through God’s challenge to see myself as He sees me I have commutes to 30 days of writing.

Writing is for me more than anyone else; so if you all check out before the 30 day challenge comes to an end, that’s ok.

I’m starting with the truths.

Truth 1

For the longest time I believed that no one could love me. Although I know differently now, during my childhood I believed that my mom didn’t love me. As an adult, I understand addiction and mental health influence the way someone shows love, but as a child I just believed I wasn’t loved by the one person that was supposed to. It affected me deeply, it’s a hole I don’t know how to fill. For most of my life, relationships, especially new ones have been hard for me.

I’ve worked hard at keeping people from loving me. I can be distant and I avoid new relationships. Something deep inside is still sometimes afraid to feel the way I did as a little girl.

As a young married person and mother I grew leaps and bounds and allowed myself to feel love and to build a life full of love.

Truth 2

There are exceptions to truth 1 and that is my husband. Our souls were fused together long before we met.

I lived in foster homes and shelters and sometimes at home. In my first years of college my living arrangements bounced around even more, but I was never literally homeless.

But home is where your heart is and mine was so closed up, I was homeless.

Then walked in Jason. And although I tried to not love him and I tried to not let him love me, he was home. I knew it right away. Something in my heart was not afraid and something in my heart recognized home.

We built a life together. We grew a family and my home erupted with love, laughter, and joy.

Truth 3

My children. I could write about how they are my beginning and my end. That my days start with them and I close my eyes at night thinking about them. That I will be their anything they need…cheerleader, lunch packer, nurse, driver, confidant, guiding hand, their legs, their advocate, I would try to breath for them if that is what they needed.

Put simply, they are my purpose. I’ve never been so honored, humbled, or privileged to do anything else in my life. To be their mom is why I’m here.

Truth 4

I want a simple life. That is not exactly what I’ve been given or what I’ve lived. But, the days that I can wake up to a cup of coffee, help my family start their days, have quiet time alone to work out, read, or write; and then make beds, fold laundry, and prepare meals…those are the best days. I love simple everyday moments more than any of the extraordinary ones. They bring me the most joy.

There are holes that only God can fill

It stems from my childhood, I think. The need to be strong.

And if strong is never getting hurt, then I know I’m not. But if strong means getting back up again when I get knocked down, well…

This last year to 18 months has knocked me down and it seems each time I get my wobbly legs under me again, I fall.

My first step towards being able to stand again was to admit there are parts of me that are broken…perhaps beyond repair. There are holes in those places and I’ve spent too long resenting the brokenness and myself for not being strong, not being whole.

Recently, someone gave me advice so simple and yet profound. She told there are some holes only God can fill.”

For most of my life I’ve tried to fill them up on my own, but when things get hard, the stuffing I’ve used blows away like dust on a windy Nebraska day.

I’ve thought about that for days. Sunday, during an hour alone, I prayed about how fragile I feel and that I wanted him to fill my holes.

I was thinking of the words hole, whole, and holiness.

I wonder why they all have the same sound but mean such different things. I wrote down: “to become whole, we must give our holes over to God so that he can fill them with his holiness?”

As I continued in prayer something resonated with me and it was that I have to believe in who He says I am, not what others believe and most importantly not what I believe.

I feel as though I have been challenged to see myself through His eyes and I accept. I’m in the beginning of this journey towards healing and I hope to share the things I learn and accept in the weeks and months to come.

Anchor of Hope

It’s been a month since my mom died. I’ve pushed myself too hard to stay busy and not feel what I know is just below the surface. I went to state volleyball, I painted my kitchen…I’ve done anything to be too busy to feel.

My relationship with my mom was complicated and I know my grief from losing her will be complicated as well. And in my heart, the wound from losing my little sister, has just begun to close. I don’t want to relive the pain of grief. I want to stay too busy to notice the pain and I want it to be over when I slow down.

I’m overwhelmed as a special needs parent in this moment too. At a time when my emotions need my attention, the emotional side of a rare and fatal disease is straining my beautiful children and they need me more that I could have ever imagined they might need me.

All of these emotions are exhausting and now I know I’m too tired to stay too busy. It’s time to slow down.

A week ago I was in the adoration chapel. I had told Jesus everything on my heart. After reading, I prayerfully journaled. This is what I wrote down.

God is after our dependency, not our perfect discernment. I don’t have to know what I am supposed to do or how long it will take. I only have to depend on God.

The Lord doesn’t promise the removal of darkness but the assurance of his guidance in the midst of it.

Psalms 37:24 “May stumble, but he will not fall, for the Lord holds his hands.”

John 1:5 “the light shines in the darkness, and the darkness has not overcome it.”

I don’t need to be moving forward, I just need to stay where I am until whatever it is He wants for me, right now, is finished. I need just to depend on Him.

He is working on my heart, shaping it even more to be the person He calls me to be.

As I wrote these things in my journal, I looked up and my eyes fixed on this stained glass window, only one of two in the chapel.

It is of the fifth joyful mystery, The Finding in the Temple. The child Jesus remained in Jerusalem without telling Mary or Joseph. Mary and Joseph had to return to Jerusalem and find Jesus. Jesus stayed to teach in the Temple. He stayed where He was to finish the work.

It was a powerful realization for me. Even Jesus had to stay where He was at times. I am where I am supposed to be. I can’t skip this part or the next. My heart will be a better heart when the work is finished.

The Weight of Love

In the early years of our relationship my husband and I shared a twin bed. We were young and poor and in love.

I never remember thinking that we needed a new or bigger bed though. Instead, the two of us, both college athletes with larger frames and long limbs found a way to fit together without falling off the bed. I’d lay on my side, head resting on his shoulder. He laid flat on his back, one of his legs flopped over my waist.

It was the perfect amount of space to rest and be next to each other.

The weight of his leg on me was comforting; like a weighted blanket that brought warmth and comfort.

Years passed and as our family of two grew to be a family of eight we graduated from a twin to a full to a queen and now a California king.

We have always allowed our children to sleep with us when they were little. My husband and I often on opposite sides of the bed, but we still love to be touching when we fall asleep. I stretch one of my legs across the bed so that our feet are touching.

Each of our children, during their perspective years in our bed, always slept closest to me. Each of our six children have always flopped one leg over my waist.

For the last 12 days I’ve sat bed side to my mother on what are some of her last days on Earth. I’ve gone home late in the night on several occasions.

A few nights ago at nearly 1:00 in the morning I collapsed into bed, exhausted. Tears dried in my puffy eyes. Our littlest was already sleeping in her spot beside me. As I laid there on my side, running through the day’s conversations and events a little leg landed over me.

It immediately sent a calming sensation through me. My shoulders fell away from my ears, I took a deep breath and was at comfort. I smiled at the weight of her love.

Suddenly, I remembered laying in a bed 27 or so years ago. I was on my side and my mom all around me. I had been living away from her and recently had been reunited with her. My dad was not living with us at the time and so my mom would take turns letting my sisters and I sleep with her at night.

After living away from her for so long I was desperate to feel her love and being cuddled up in her bed with her on those nights made my heart happy and I did feel the weight of her love in every ounce of her arms wrapped around me.

Remembering it now as an adult fills my eyes with tears and is very deeply felt in my chest. It is a really beautiful memory.

I think that experience with my mom is why I’ve always felt so much comfort from the blanket of legs my husband and children have draped over me the past 19 years.

There is no way to measure the weight of love, it can only be felt.

My Book of Joy

After a year without a weekly hour of Eucharistic Adoration (A Catholic practice of spending time in front of the Eucharist, Jesus). It was something helpful to me. I always felt closer to Jesus when I regularly spent time with Him.

The year I didn’t have my own hour each week turned out to be a difficult year. By the end of summer vacation I was exhausted and a little overwhelmed with things. I was craving time with Jesus. I found an available hour in our adoration chapel at church and have been going the past two weeks.

Duchenne has been weighing more heavily than usual on my heart. As I approach the first anniversary of my sister’s death my heart aches. Paired together they are more than I can handle. I was desperately seeking help and comfort. Fortunate enough, I turned to the right guy for help, Jesus.

The Holy Spirit is working through those around me. He has continued to put the right people in my path…they’ve been at the YMCA as I’ve started working out regularly again.

They’ve been in the doctor’s office as I finally grew courageous enough to ask for help with sleeping. (I have a hard time sleeping. At night when the house is quiet and my body is at rest, my mind goes and goes.)

They’ve been friends that we rarely spend time with suddenly all coming together for a fun and much needed night out.

The best part has been adoration though. I’m working through a book called “Graceland: Discovering Truths Through Seasons of the Heart.” It was a gift from one of my readers. I cherish the thought that went into the gift. She even made a cover for it and therefore, I call this My Book of Joy!

I recommend this book. It has been so uplifting and is rooted in scripture, in fact, the author tells you to have your bible ready as you work though the seasons of the book.

Last week the lesson requires that I read a verse in 2 Corinthians, Chapter 4. I read the entire chapter because it was like it had been written for my heart for just this time. Verse 18 read, “as we look not to what is unseen; for what is seen is transitory, but what is unseen is eternal.” In my journal I wrote, “2 Corinthians-for the hard days with Duchenne.”

As I thought more it seemed to be perfect for the hard days with grief, and for all the hard days.

I’ve always thought and not just for this blog, I’m sure several of my friends can recall me saying this when I’ve talked about the weathered storms in my life. I’ve always thought that is it hard to know joy without having suffered in some way.

We can be thankful for our pain and suffering because it brings us closer to Jesus and being close to Him brings joy.

On the days I’m hurting most, the days I’m tired, the days I’m anxious…I want to remind myself that it is completely and totally worth it. The unseen, the eternal will be an “eternal weight of glory beyond all comparison.” 2 Corinthians 4:17

The weight of our crosses with be replaced with glory beyond all comparison!

I will remind myself of this.

8 Years

8 years

Today marks 8 years since our world got flipped upside down with the 3 words “Duchenne Muscular Dystrophy.”

I distinctly remember my tears. We made it home from Omaha after the diagnosis. Max fell asleep, exhausted from the long day at the hospital. I laid on the couch, 10 weeks pregnant and so full of sorrow that it leaked from my eyes in a never ending stream of tears.

Max was asleep on my chest because I could not bare to lay him in his bed. All I wanted to do was hold my boy. My beautiful son that a doctor had just told me would die because he had Duchenne. I didn’t want to wake him so I just held him and I didn’t sob or cry out loud, I just let the tears stream.

My in-laws were here with the other kids. I remember my father in law, very upset, and he asked, “will he still have his mind.” He was relieved when we told him yes.

After the tears quit falling, I tucked my 9 year old daughter into bed and somehow kept it together when she asked me what was wrong with her little brother. She wanted to know if he would need a wheelchair. As much as we had tried to keep the previous weeks’ conversations and concerns to ourselves, she had heard enough to be very scared.

It was the hardest day. To wake up with what I assumed was a healthy boy and go to bed with a son that had what I was told was a death sentence.

I almost didn’t acknowledge this day. I hate reliving the pain of that time period.

I thought about it all day. And I thought, 8 years ago I never would have imagined the happiness that exists in our lives today. I never would have imagined Max would be walking, acting in plays, and have supportive and loving friends.

I never would have thought we’d have another baby.

I never would have imagined so many potential therapies that could change the outcome of the disease.

I never would have thought I would say things and live things like, “count your blessings and not your burdens.”

I never could have believed that the sum of all the joys in our life would be bigger than Duchenne.

But yet, they are. I see our blessings. Duchenne made us stop dreaming of the unimportant and made us start living in the moment with the ones we love.

We learned to advocate, we learned to love better, we grew strong enough to make really hard decisions, and we became the family we were always meant to be.

So yes, that was the most painful time in my life, but out of that pain grew a beautiful joyful life. We have plenty of hard days and are guaranteed a fair share more hard days, but the good will carry us through.

#EndDuchenne #MRC

Front Row Seats

We live it people! We live life!

Eight years ago when our boys with diagnosed with Duchenne; it was our first decision. We were going to live life in spite of Duchenne!

We go and we do. If you follow us on Facebook, I think most would agree that we are busy living it! (I’m a self confessed over-sharer).

During all this living, there are times that I have almost felt apologetic for how much space we take up when we are living it.

I mean our family of 8 is big and space encompassing for sure, but I’m talking about my boys that drive scooters. The scooters take up space. And they are driven by young boys. Young boys don’t travel in straight lines or at slow speeds. And, they use them to play and keep up with their peers.

Sometimes, I fight my urge to just let them be boys. If it were my son Chance and he was walking faster than me and got up ahead of me, I wouldn’t think twice about it. But when it’s my sons on scooters speeding up ahead they attract so many staring eyes. I get self-conscious. I start to wish we could blend in better, I wish we were smaller.

Today started that way. We were at state baseball, which means lots of people and lots of eyes.

An older gentleman sat his lawn chair right next to Rowen, who was sitting on his scooter. His chair was literally touching Rowen’s scooter. Immediately, I went to apology mode. I had Rowen move forward so the man could get to his seat. Rowen backed right back into his spot. I was ready to tell him to move and give the man some space (even though the man invaded Rowen’s spot).

The older man leaned over his arm rest and started chatting with Rowen. He asked him if he always had to use his scooter (after complimenting it, of course). It touched my heart because I know what that man was thinking. He realized that something was not right and he was hoping it wasn’t as bad as he was maybe assuming it was.

Later in the day I was caught up in the game, I didn’t realize Charlie left for the bathroom. I turned my head just in time to see him on his way back to me, burning through the crowd on rabbit speed (that’s the fast end of his throttle).Of course, I saw a horrified look on a woman’s face. We see it often. Often, it is followed by a comment like, “kids these days are so lazy.” A comment both heart-breaking and infuriating.

No comment this time. The woman watched him just a little longer and then her face lit up in a huge smile.It is happening more and more.

When I can let go of those heart breaking comments and take in the bigger picture, I always find smiles in the crowd.

They watch my boys, jovial as all get out and loving life. They see them on these scooters and most realize the boys have been dealt a tough hand. They see my boys loving and living life even though they’ve been dealt a tough hand.

They are doing something special. On some level they are showing us all that there is always a reason to be happy. They show us how to enjoy every day.

If these boys with an awful disease can laugh and play and enjoy and live, then we all can! I think that is what they show people.

When we are out living it, in spite of Duchenne, they are showing people how.

Maybe that’s why God chose us, he knew already how on the go our life would be.

I think they are making others more comfortable around people with disabilities.

First, they are too cute to be intimidating (my opinion). Second, they have so much fun and laugh so much, it is hard not to join them in laughter or meet them with a smile.

I think they have a special ability that makes their disability disappear. All you can see is the boy.

I never imagined we’d be that family. I never imagined 3 sons in scooters/wheelchairs, but that is how God blesses me.

He gave me a life with a front seat to some of the most beautiful things I never imagined.

I took the dog to the vet today. She needed an allergy shot. For just a quick minute I thought, “if this is biggest thing I have to worry about today, I lead a pretty charmed life.”

Then I laughed thinking about how other people might react if they heard me say that out loud. I laughed as I remember the stress level I’ve maintained this week.

Duchenne is heavy and hard.

Results of what I consider to be a scientific breakthrough in the treatment of Duchenne Muscular Dystrophy were released this week. A promising new therapy is on the horizon! It is truly an answer to prayers. It makes me so happy and yet I’m grieving.

It has the potential to save Duchenne lives. I want my kids on that therapy.

My kids are already on another therapy. One that 10 years ago was a scientific breakthrough of its own. One I feel blessed to have access to and have fought hard for. It is helping; but it is not doing what this other therapy appears to be doing.

I feel panicked. I’m worried that because we already have access to the first, we may have put our boys in jeopardy of having to wait years to have access to the new therapy.

I know nothing for sure. I’m playing a game of life or death chess in my own head with limited amounts of information.

Next week I will spend several days in Arizona at a conference with the most influential people in Duchenne. There will be the leading scientists and doctors, industry representatives, and hundred of advocates and parents attending this conference.

This will be the place I will absorb enormous amounts of information, ask my questions, and form new ideas about the best way to care for my boys as they get older and as more therapies become available.

I’m scared.

I’m scared I will not be brave enough.

I’m scared I will not be brave enough to make a decision.

Do we stay on the course we are on and risk losing access to new and better therapies? Do we stop what we are doing and try something new and risk losing all the benefit we are currently experiencing? Is there an in between? What if we choose wrong?

Will I be brave enough to make a decision and live with the consequences?

And I realize there are parents whom have lost their beloved children to Duchenne and never had access to any of it. To them, I must sound so damn spoiled. They would have done anything to be in my situation.

I haven’t slept. I think I feel an ulcer, or at least a huge knot in my stomach that is making eating very difficult.

So today, when the worst thing I was worrying about for a few moments was the dog’s allergy shot, life felt pretty charming.

But as I thought a little harder, scratched a little deeper…

the fact that I can forget for a few minutes,

the fact that I can celebrate a mundane task,

the fact that I have decisions to make about a disease that had no options 15 years ago…

There was magic in those few minutes. There was something very simple in that task. Magic and simplicity for a few minutes in a life too full of complicated and stress was really quite charming while it lasted.

Let Joy Outweigh Sorrow

In my prayers the other day I made note that I haven’t been able to write. Writing is such a therapy for me and it just wasn’t there. Yesterday though, there was finally something on my heart.

It was the thought that it sometimes takes courage to be joyful.

I think that joy comes from the little things like a cup of coffee on the deck listening to the wind blow through the chimes. That was my start this morning. Or even before that it was the pre-set option on the coffee maker that allowed me to be greeted with the scent of fresh brewed coffee when I woke up.

Joy is simple.

Joy can come from scents and sounds and flavors.

Joy is available to everyone.

Sorrow is not simple.

Sorrow is overwhelming.

In my life, I think my greatest sorrows stem from the boys living with Duchenne. It’s watching them struggle to get up from the floor, or watching them fall, or listening to their own fears and grief. Max admitted to me already this summer that he will miss when he can no longer ride a bike. And the biggest of all the sorrow and fear for me is being scared of losing my children to Duchenne.

Joy is a choice, a decision, even a mindset; even in the midst of pain and sorrow. If it is not a conscious choice, it is easy to let the heartache, fear, grief, pain…consume you.

Joy needs to be searched for while hoping and praying for our miracles; like a cure for Duchenne. Joy needs to be celebrated even when our hearts are broken and hurting and we mourn or suffer.

In my lifetime there may never be a cure for Duchenne, my relationships are never going to be perfect, my days will continue to have their challenges. There will always be sorrow, I know that, I feel that.

But I don’t have to live in the sorrow. I can’t out run it, or wait for it to end before joy.

Joy doesn’t wait for the bad to be over. It remains always. It is there in the beginning of the day and at the end.

That’s where the courage comes. I need courage to choose joy. There are so many many more little joys than there are great big sorrows. I want my joy to outweigh my sorrow.

Let there be silver linings when our hearts are aching. Let there be little breaks of laughter when our eyes are leaking. Let there be joy always present in our lives.

Find joy in the journey.

…Joy continued

My mood today can be summed up by telling you that I’m wearing the same pair of jeans I wore the last 3 days and the Earl May sign that reads, “now is the right time to treat crabgrass” made me mumble under my breath “you can kiss my butt.” Like it was adding one more thing to my list of things that aren’t going to happen.

We had a clinic visit last week that didn’t go well. I shared it all on our MRC Facebook page so I will quickly sum it up here, using a word I really don’t like and don’t let my kids use, but in short, it sucked.

Like, literally, I think it sucked some life right out of me. And yesterday we had to put our very loved, wonderful dog down.

I know I keep saying that these last 12 months and now I am amending it to the last 15 months have been rough. But, is has been, one thing after another. Just as soon as we are about to get our legs underneath us, something happens and takes them out again.

I realize that at times I’m losing sight of the joy along the way.

The last two weeks have challenged me and even as I write this my eyes feel swollen and dry from all the tears and physically I am just drained.

But every time I’ve stopped to find the joy, the source of joy has been the same.

My husband.

A year ago as he was losing and had just lost his dad, I can be honest and share with you that it was rough for a couple of months. We had to learn news ways to be there for one another.

After the loss of my sister, he had to hold me together for a couple of months.

And now as we navigate the changes with our boys and prepare for a different future than we had imagined when we first said, I do, we are in sync.

This is the strongest we have ever been and the strong foundation our family needs. I’ve always thought that we were one of the lucky ones, we found each other when we were 19 and have been smiling together ever since. But what we have now is beyond what I knew could be. We know each other better, we are softer with each other, we try harder to make the other laugh, our hands feel better when they are holding the other’s, and there are times we don’t need words to communicate.

I never knew a love between parents like I experience as a parent. It is a gift given to us that we can give to our children. We may not be able to fix their muscles or give them a big house or fancy vacations, but we can give them a home full of love. That is a great joy to me always, when my heart is aching, and when my heart is rejoicing. It is perhaps one of the greatest joys of my journey.