Slumber Party

Let me paint a picture of this boy. Rowen was standing in the chip section at Walmart. His back arching with the lordosis caused by Duchenne. He was holding a party sized bag of Doritos so large next to his small stature that it nearly touched the ground. He was gazing up at all the other flavors of potato chips stacked on shelves nearly three times his height, trying to decide on a second bag.

I was loving this boy so much in that moment that my heart was hurting.

Rowen turned 10 a couple of weeks ago and tonight is celebrating by having a few boys over for a slumber party.

I’m so nervous for this party.

Rowen is on the spectrum. Chaos and extra noise are not what he is best at. Having had a few slumber parties along the parenting journey thus far, I know that is exactly what we are in for…especially when we add Rowen’s 5 siblings.

But Rowen is so excited. I tried more than once to propose another way to celebrate. I suggested a swimming party, a bowling party, and taking friends to a movie, but he was determined that we were celebrating with a slumber party.

We know life is short, so we are having a slumber party! If for some horrible reason this is the last birthday Rowen ever celebrates, I’m not going to wish I could do it over and give him what he asked for. I’m doing it the first time. He wants a slumber party and so we are having a slumber party.

If Rowen needs breaks, his older brother is on stand by ready to step in and make sure his brother’s friends are still having fun.

We have nachos and pizza on the menu. Rowen picked out his chips and soda flavors. He wants to play video games and watch movies. He asked his Dad special to go buy donuts tomorrow morning.

And as I type he is telling me I need to finish picking up the house before his friends get here, so I had better end this now. Please pray that Rowen, his friends and family all have fun and memorable night!

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Lexi

Today is one of those milestone days for a senior in high school. Today, Lexi will play basketball for the last time in Chapman Gymnasium.

Chapman has been a second home to her since 7th grade. And for years before that she worked her tail off making sure she could play in the Gymnasium wearing a Hawkette Jersey.

As a freshman, #10 was not her first choice, but as being a freshman goes, she got #10. I know I’m biased but she’s had a great career and has done #10 proud. This season I even had to find someone to sew it back together again because it means so much to her.

I will miss the crazy loud nights sitting next to her dad, one of the loudest fans in the place. I will miss quick runs to the bathroom with her younger siblings straining my ear to listen for her name in case I missed something. Heck, I’ll miss my diet of popcorn and Diet Pepsi.

I’ll miss everything about it, especially her.

She is everything I could have ever hoped for in a daughter. She is bright, vibrant, a light. The last 4 years, I’ve been told that repeatedly by fans, teachers, other parents; so it’s not just me.

She is dedicated, works hard, and sacrifices a lot. A lot of people see that.

The things they don’t see are a sister that worries about her siblings, especially her 3 brothers living with a fatal genetic disease. She carries her brother Max up and down the stairs at lunch. She can give them their meds and stretch them. She’s had to do more on her own than I would have liked because they physically need us more. That’s been hard at times, but she’s always understood and just fought a little harder to compensate.

Lexi refused to go to college out of state because she didn’t want to be far from them. We encouraged her not to make her decision based on that, but we know she did. She could have visited schools all over the country and refused all but one. In the end she chose a school 90 minutes from home. Her priorities are straight and family is among the top for her.

I prayed always that my children would not be like me. I’m learning that it’s okay for them to have a little of me in them. I have a little fight and that’s what Lexi has of me. She perseveres.

There is not a challenge she will not accept and often succeeds more the harder the challenge is. She will make it. Letting her go off to college hurts because I’ll miss everything about her, but not because I’m worried. She is ready.

I’m amazed at her. I love how she is with people, reminding me always of her dad and pappa. I’ve watched her compete since kindergarten. Early on, Lexi could be found talking to her teammates and kids on the other team. To this day she can been seen chatting with a ref on the sideline as she waits to inbound the ball.

Last year at state track, she had a big throw that launched her into second place. On her way out of the ring, a dad and Coach to the gold medalist congratulated her by name before she ever found her way to her coaches and parents.

This season she suffered a concussion that resulted in an ambulance ride. Coaches, parents, and athletes from every corner of the state were texting us that night. She is so loved and they were worried for the blonde girl, with the big smile, that makes everyone feel like a friend.

The week following she was watching the games from the sidelines. Afterword almost every starter on an opposing team came over to her and told her they were scared and are so glad she’s ok.

She’s been successful, she has state medals from all three sports to prove it. But I’m most proud of the fact that she’s a good sister, a good daughter, a good teammate, a great competitor, and a friend to everyone on the court, the field, the hallway.

She’s going to finish the season and another in a Hawkette Jersey and then she’s off to wear a red one for a few years.

I know her future holds no limits. She will be an amazing nurse. I know God has already fused her soul to her future husband and when they find each other she will be a wonderful wife and mother. I’m so proud of this girl, I just wish the past 4 years had not gone quite so quickly.

Truths

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.

Max’s Birthday

Today is your 13th birthday, but the story of you started years before that.

It was just me and dad and Lexi. We were happy but something was missing. Lexi and I especially thought so. We convinced Dad too, that we needed a baby, that we needed you.

13 years ago you were born at 10:03 pm. You weighed 10lbs 3oz and were 23 1/2 inches long. Just as we were laughing with you last night, I’m don’t know how you ever fit in my belly the last month. The nurse at the hospital that day thought you might have broken the record for longest baby born at Mary Lanning.

Max Joseph Vertin, 2005

I should have known then that you would always be the one to break the mold.

You are brave and funny and interesting and wonderful, but life for you is not without struggles. Living with Duchenne is a challenge, but you do it with strength and humor and love.

The list of things that Duchenne limits for you seems endless and yet, you’ve tried everything you wanted to. The fact that you love the stage so much and can share yourself so freely is greater than anything I could have dreamed for you. I smile every time I see you perform, especially for the private performance those of us lucky enough to be your friends and family get to see at home or out to eat or at a ballgame!

Father Christmas in Narnia, 2018

I remember a day during the summer you were 4. We had just spent the day in Omaha where you were diagnosed. After travel and tests and all else we endured that day you were exhausted. You slept the entire drive home and continued to sleep throughout the evening. For what seemed like hours I held you as you slept and I wept.

Summer following diagnosis, 5 years old

That day, I was told that boys with Duchenne stop walking at age 12. We both know that not walking will not be the end of the world, just a change in ours; but today you turned 13 and you are still walking. The expectations that specialist put on you so many years ago, never defined you. You have always had the gift to just be you. You are the truest person I know.

We are doing things that have never been done before. You and I both know nothing we try is guaranteed to help, but you try anyways. You also blaze a trail for your younger brothers. You are braver than you will ever know. Sometimes I’m scared and you are the one whose lead I follow.

And son, I’ve never seen a middle school boy be embraced so warmly by teachers and peers and friends. There is magic about you. Your smile, your laugh, your wicked since of humor. People can’t help but love you.

Max and friends enjoying the county fair, 2018

But on this day, your 13th Birthday, know that their isn’t a soul that loves you more than I do.

Happiest Day to you, my beautiful boy!

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.