When they say, “take care of yourself,” or “get enough rest,” it is a real thing. Life has just been a roller coaster lately. I’m trying to take care of myself and rest, I’ve been getting regular workouts in, drinking lots of water, eating mostly healthy, and trying to sleep.

Sleep seems to escape me. Even when I fall asleep, I wake up in the wee hours of the morning and my mind just goes…and goes and goes. I think about everything from my sister to packing lunches, loads of laundry, clinical trials, the 10 lbs I could stand to lose, the cat, the dogs, Christmas, basketball, stress fractures, a new van, and it just goes. I try to turn it off, I pray for sleep to come to me and eventually it does. However, I know I’m not getting enough rest.

It is a real thing when people tell you to get enough rest. Because when you don’t, your body doesn’t function normally. I am sick for the 3rd time in 2 months. I never get sick like this, ever.

I’m feeling better today than I did last night when I ran straight into a brick wall (figuratively). But to be honest the color of things coming from my nose tells me I’m fighting an infection. Against my nature, I decided I better stay home and take it easy today before I get worse.

I’ve been practicing #30daysofThanksgiving this November. Each day, I post on social media something I am thankful for. My husband, my children, my friends, family, sisters, daughters, nice days, good books, anything and everything that brings me joy. I’ve posted mine already for today. But I continue to think of more and more.

Rather than post multiple time and annoy everyone in my newsfeed and because Mary is totally vegging out watching Paw Patrol I thought I’d get to work on another blog.

I woke up in a soft bed, with warm covers, and a toddler’s leg hanging over my waistline. I took a deep breath in and although I could have stayed there for another couple of hours, I followed my husband out to start the day. I smiled at a couple of sleepy looking kids and asked about their ‘sleeps’ on my way to a hot pot of coffee waiting to be poured and mixed and my pumpkin spice creamer.

That’s it, those first 3 minutes are full of a lifetime of blessings.

My bed. This means more than you can imagine. There were seasons of my life that the same bed every night, in my very own room was not a thing. There were nights in shelters where after a couple of days I could sort of breath and adjust to a new normal and a new bed and new blankets, none of which were mine, to find out that a foster home had opened up and we were moving to a new house, in a new room with a new bed and new blankets, none of which were mine.

Time would pass and I’d adjust to the new family and new bed and then it’d be time to adjust again. Then in college, there were months that if I didn’t spend the night with Jason, I’m not sure where I would have slept. So to wake up each morning in my own bed, it is a blessing. Not only did I wake up, it was in my own bed. I am blessed from the very the start of my day.

The toddler’ leg. That leg belongs to the child that completed our family. She is strong willed, and competitive and caring, and hilarious, and spoiled and brings large amounts of joy each day.

The husband. My best friend. The man I love more today than I could ever have imagined on our wedding day. My partner in everything hard and sad and beautiful and amazing.

The kids. I spent my entire life looking for what it was I was supposed to be. I have a master’s degree, two bachelor’s degrees, a resume full of a variety of jobs, experience as an educator and a consultant. All of that, it was always just work. It took me awhile to figure it out, but the kids, they were always what I was supposed to be. I was meant to be their mom and that vocation of motherhood it gives me all the purpose and more than I could have ever imagined.

The sleeps. It means I have sisters. After years of living a bit separated, we have pulled together. One of my sisters and her children call it sleeps. It stuck with me and I now love to ask my kids the same question every morning that I know my sister is asking my nieces and nephews. I have family. It means that even if I wanted to be left alone and forgotten, it would never be possible. I have people. The ones in my house and the ones thousands of miles away and we are connected.

The coffee. It means we have electricity. It means that I have a kitchen with cupboards full of more than just necessities. The coffee will sooth my sore throat, warm me on a cold day, and reminds me every morning of the loving man I’m married too.

As I write all of this, I don’t forget that life is not the way I would have planned. If I was consulting on this plan, I’d put a little less broken heart, a little less uncertainty, a little less loss, and a lot more cure for DMD.

But if I were writing this plan, would I have included even half of what I’m thankful for. Probably not, I’m too human and too selfish and would not have thought of the blessing each of the lessons and people are.

Maybe I will annoy my newsfeed. But I love November. It gave me a sister, it gave me a son, if gave me the Chicken Noodle Dinner & Bazaar, it gave me Thanksgiving, and right now in the middle of my grief and this new bout of crud, thanksgiving is my lifeline.

When I count my blessings they are greater than my sorrows. Does a hot cup of coffee make up for the loss of a sister, or the fear of losing a medicine that is helping my sons? No. But, the lifetime of blessings that I can reflect on and count, it soothes my aching heart and even in the midst of my grief, my heart is a grateful one.

I am full of sadness today. It hit me like a sniper.

My plan was to drop kids off at school, work out, go to a meeting and then to order a cake for Max’s birthday tomorrow.

Last night though, Chance had asthma attacks all night and I was up with him for quite awhile at 2:30 helping him catch his breath.

I woke up tired. He stayed home from school. Plans are never made to last anyways, right?

I set out to accomplish what I could. My meeting was so hard. I met with a man from the parks and recreation department to pick out a spot for my sister’s memorial bench. My other sisters and I had discussed whereabout we wanted it and I never expected to get emotional.

I was okay in the beginning; but as I started to explain why my sister Dani loved this park…that we had lived near it as children, that she spent a lot of time hunting for crawdads in the creek that runs through it, I could feel my eyes begin to water and my voice began to crack just as I finished speaking.

I went home and cried and cried. Ugly, snot every where, bawling. It hurts so bad to know she’s not here anymore. I try to stay busy, but every day I feel a heaviness creep into my chest and a loss of breath as I remember she is gone. The tears really catch me off guard. It hurts to even think about her right now because it hurts so much to miss her.

I gathered myself and had lunch with Jason, Chance, and Mary. I took it easy until it was time to pick up kids early from school. I went with Max and let him pick out his own cake. We laughed as he told me he talked Sister into letting him bring Birthday snacks to school tomorrow and subsequently picked out cupcakes.

I laid down for a couple hours this afternoon. I needed to rest. I got up to get supper started. As I began to prepare the food, I thought about Max. He’ll be 12 tomorrow. He loves his birthday. Every year, it is his favorite day. He waits and waits for it. He’s been planning phases of celebration for over a month!

I could not help from letting my mind wonder…

Is 12 years half of his life? Is my time with him half way over. 12. He is doing so well. I thought he might be in a full-time power chair by this birthday. He’s not close to that. We are doing things that have never been done before in Duchenne and he is benefitting. So much could change very soon if the FDA denies the appeal for Ataluren. Will he still be doing well in 6 months, if he has to stop taking it?

There are days I dare to dream he might still be walking in college or across the stage for his high school diploma. But inevitably, there are days like today that I could not help but worry none of those things will happen, that he might not even be here.

A dark truth, especially with the death of my father-in-law and sister happening so recently, I think about burial plots for my children.

It’s awful. Here I am the night before his birthday and I just wrote that. I could throw up for just thinking it. But. I. Think. It. Sometimes.

Mary’s voice interrupted my thoughts. She needed help. I walked out of the kitchen and passed Max drawing at the table, caught the dogs sitting together at the front door waiting for Jason and Lexi to come home and found Mary and the other boys playing cars on the floor.

It was perfect. My family is perfect for me. They bring me light in my darkest hour. They bring me joy when I forget it exists. My heart warmed and then melted actually. I tried to take a picture but didn’t get exactly the moment I described.

I am so thankful for them and the lesson I continue to learn over and over again. Their love, our love, our relationship with God, our joyful nature…that is what is important. No matter the length of years together on this earth. What matters is that those years are spent well. That we live well. That we experience the fullness of love.

In a couple of hours, I’ll wrap birthday presents from his Tayta and decorate the house for the birthday boy. We’ll leave decorations up until next weekend when he celebrates with his friends. Saturday morning we will head to Lincoln so that he can ‘shop’ for the present he wants from us and spend the night at his favorite hotel with his Aunt, Uncle, and cousins.

We are going to celebrate life well lived and by celebrating life we will live well. We will celebrate love and faith and joy. We will remember the measures of love, faith and joy that are now heavenly in nature and remain with us.

I hope in the end, when we know the full experience of our life on earth and all of the truths we don’t know yet, long after we are gone, I hope our legacy is one of living life and of love.

My miscarried baby was due the day of my sister’s funeral.  

If that alone was how life happened this year; we would agree that is enough.  Instead of spending September 30th with my family, shopping for the things a newborn would need and donating them in memory of our lost baby, I was crying because my baby sister was gone forever.

ENOUGH.  That should have been enough.

It was not. Between the last moment I last saw my sister’s lifeless body and the day of her funeral, I traveled to Washington, D.C. 

There, with what felt like an empty heart, I pleaded for my children’s lives.  I begged for hope, asking that they approve a life-prolonging drug designed for and benefiting boys with nonsense mutation Duchenne Muscular Dystrophy, including my sons.

I felt like that was ENOUGH. Except the panel that listened to my testimony asked for more.  

I’ve spent the last 2 weeks doing everything that’s been asked of me to help get FDA approval.  I shared our story at the National level that included an article in Newsweek. I unleashed a social media frenzy to raise  awareness and gather support.  

At my request, people all over the great state of Nebraska and beyond were contacting their congress members, asking them to put pressure on the FDA to do the right thing.  I’ve emailed decision makers at the FDA.  

I could have done more. Right now, sitting a thousand miles from anywhere, waiting for an answer that will come sometime next week, I feel like I’ve done so little.  I know some of you think otherwise, logically, I should think otherwise.

Here is the thing.  As I walked from my baby sister’s hospital room, with swollen eyes, an aching chest, exhausted, and distraught; I was with my sisters. In the hallway, 5 or 6 rooms from where our sister’s body lay, one of my sisters said, “I never want to do this again.” 

I sobbed, as I had done for days.  This time I cried because and I confessed it to them, “I’m afraid I will have to do this 3 more times.” It was hard to console me or my sisters.  But the ache in my heart was 4 deep, for my sister and for 3 my boys. I would do anything to keep from ever having to do that again.  I just don’t know what I’m supposed to do to prevent it.  It seems like it will always be too little.

I’m in a fog.  Some days it lifts, on other days I’m emotional, vulnerable, exhausted and can’t sleep and eat with no appetite and only because it is time. 

Next week we will be at the Nueromuscular clinic with my boys and I will be seen in the carrier clinic.  I don’t feel well most days and I do think it is because of stress; but am also afraid my heart is struggling as a muscle, not just as a vessel mourning past and future loss. Heart failure symptoms look a lot like extreme stress. 

I’m always afraid that we will hear something bad about one of the boys’ test results. I feel as though I am conditioned to always expect something (bad) to happen.

Please pray for me. That this stress will be lightened, that I will feel better soon, that we will win one of these battles.  Pray for peace. My heart is in turmoil and I seek a little bit of peace.

I don’t know much.  I don’t know what the future holds, how the boys will be, when the grief will become something I can live with. But, I do know that God has this.  

I am scared that what I want for my boys is not what God has planned for them.  I know that I am faithful because despite the agony that my fear brings me, I still trust HIS plan. I know that what I want is because I don’t ever want to know what life on this Earth is like without them.  I know that HIS plan for my children is the plan. I can only trust it.

Two weeks ago, I was questioning God’s timing.  I could not make sense of it.  Today, as hard and as exhausting as it has been to fight the FDA, it has prevented me from crumpling as a heap. 

Heartache has been ever present, but love, love for my family, love for my husband and children, and love for my sisters. Love has allowed me to put one foot in front of the other.  I’ve continued the fight, I’ve cared for my children.

I’m weak, but HE is strong.  It’s a lyric I remember from my Sunday School days as a child.  It is through my weakness, that His strength is truly present. It is a gift.

He is not done with me. I’ve almost always been the sturdy one, the strong one, like an aged tree. 

Through loss and by HIS hand, I have been uprooted.  I can no longer cling to what I know.  He wants me to know more; that is all I know.  

He’s got this.  I have to trust that.  For now and let’s hope, for always it will be HIS hand that I gravitate towards and cling to.

We’ve just made it home after spending a couple of days in Washington, D.C. where we attended and testified at an FDA advisory committee meeting for the trial drug Ataluren.

All three of our boys take this medicine three times a day.  My sons are doing well considering the devastating progressive nature of Duchenne. We attribute much of that to Ataluren.

Yesterday the Advisory committee voted.  This vote is the recommendation the committee will give to the FDA and the FDA considers the recommendation when they make their decision in about 4 weeks.

The committee did not vote no.  They did not vote yes.  Instead, the majority vote was that although there could be benefit from this drug, it is not well reflected in the data.  This could be a path forward towards accelerated approval.

Last night, although dissappointed, people were okay with the decision.  There was a celebratory feeling in the air.  The community was focusing on the positive.

I, however, was almost numb. I was scared immediately.  What does this mean? Really mean?  Yes, it would appear there is a path forward for approval someday.  How far away is someday?  Will boys on drug now, my boys, stay on drug?  Will they decline, suffer if they have to come off?  I had so many questions.  So much fear.  Tears were just steaming down my face.  I didn’t want to cry, but I had no defense.

I think a lot of those tears were coming for other reasons, but last night was the perfect storm, an end to a long exhausting process that only promises to be longer and more exhausting.  I knew I would be home today and that meant my sister’s funeral was even closer.  I cried.  I cried for everything: my sister, my boys, my weakness.  Last night I just wanted something to be easy.

The community of fellow warrior parents embraced me.  They hugged me, let me cry, checked on me, tried to cheer me up.  I was blessed with their presence.  

The CEO and founder of the therapeutics company that makes Ataluren sat with me.  The first time I’ve talked to him and rather than try to impress him and show him I am strong enough for this life, I just cried.  I wiped my eyes and tried to stop and just cried more.  Not sobbing, just tears streaming down my face.

He spoke to all the parents last night.  He’s not giving up on the drug.  He told us that they would be meeting, they were going to strategize next steps, and then they’d tell us what we could do to help.  He asked two things of us.  1. Do not be too tired. 2. Be mad.

He told me personally.  You have three sons, you have to be 3 times as strong.  He said cry tonight. Be ready to fight tomorrow.

I didn’t tell him I would say my final good-bye to my 31 year old sister over the weekend.  I just promised him I would do what he asked.  I changed it just a little.  I’m going to cry this weekend, all weekend.  But come next week, I will be mad, I will find my fight, and with my warrior community and help from above, I will do anything I can to help my boys.

We are home for less than 24 hours before we leave in the morning.  I need to do laundry and pack and get a little rest.  

Out of habit, I walked out back to check the garden.  I’ve neglected it.  People have offered to take care of it for me, but I didn’t even care.  It’s fall. I was ready to just let it die. I was too tired to do anything with it.

But I could see some perfect heads of broccoli.  I went in.  I saw a ton of peppers and started to pick them.  I noticed the last 3 cucumbers and picked them too.  I decided we’d have a veggie tray for supper.  I picked tomatoes.  

My garden kept producing food, even after weeks of neglect.  Vegetables kept growing.  Plants were overgrown, but underneath they were healthy and full of beautiful vegetables.  There were dead vines, decaying tomatoes, but next to them were healthy pieces of plant and perfect cherry tomatoes.

I am the same.  I’ve neglected me.  I’m not drinking enough water, I’m not sleeping enough, but I am still productive.  They are parts of me that death has touched too intimately and parts of my heart feel decay, but there is healthy perfect parts still in tact.

I thought I was too tired.  But squating in the dirt, shooing away bugs, I thought I can do this.  Words from yesterday were ringing in my head. I can be not too tired. Even as I hurt and grief and worry, I can be not too tired.  I will get mad too.  I will be back to the fight too.

The first eight months of this year have been hard.  Lots of challenging news, too much loss, and the healing aftermath.

I have not shared it all.  I’ve often been told I have a gift for words, but in this instance it just seems that I don’t have the words. And I’m scared to put it all out there.

It’s been weighing on me.  I think I’m supposed to share, like some of my heartache and suffering has a purpose and by putting them out there, they might achieve their purpose.

My birthday is in January.  The week of my birthday I realized I was pregnant with baby #7.  I was in shock and I was full of fear knowing the baby might have Duchenne.  I was scared to tell anyone because I didn’t want people to say mean things about being a known carrier and still following my faith. I heard so much of that when I was pregnant with Mary.  

I was a mess and it took me time to come to terms with it.  Eight weeks into the pregancy I went in for our first ultrasound and things were not right.  We lost the baby.  There is so much more I could say right now, but can’t. 

I never knew a loss like this.  I never knew the emptiness it could leave behind.  I never knew you could love someone you have never met so much. I feel guilty for not being excited right away.

 I think about the baby everyday. We would have welcomed baby #7 in September.  As we approach September, I have new aches when I see little babies and little baby outfits.  

After we lost the baby, I found out about my heart.  I’ve written about it previously so I won’t go into much detail.  The medicine I’m on makes it harder for me to keep up, I get tired more easily and if I over do it, I feel it.  It has affected the way I approach my days because I have to hold back to make it through the day.  I have to slow down.

During all of this we had started seeing a behavioral therapist for Rowen.  He sometimes has a hard time making friends.  He was easily upset by things our other children did not even seem to notice.  

I didn’t know if it was him having a hard time with his disease or if it was a side affect of one of the several meds he takes daily.  After months of assessments and therapy sessions, Rowen was diagnosed with High Functioning Autism Spectrum Disorder.  

Rowen has always had quirks and knowing that a small but significant percent of children with Duchenne have dual diagnosises I had suspected maybe something was up when he was younger. Although, until this therapist, most people did not see what I saw and I assumed I was just being an overzealous mom.  

The diagnosis was hard to hear.  I hurt for my kid because it was, is one more thing for him.  I just wanted something to be easy for him.  He has so much to deal with, I didn’t  want one more thing.

Late in April, my father-in-law started hospice and we lost him in May.  This is something no one can ever prepare for.  Things have improved, but my husband is overwhelmed with grief. He has to go through this process and I want him to find healing in his own time.  Grief is consuming and he has endured a busier than usual traveling schedule for work. My already full plate is more full.  I’m tired.

This all left me kind of scattered.  I spent the summer trying to pull everything back together.  I felt like I didn’t know how.  I was struggling to understand why.  I felt battered and like I’d been left alone to weather the storm.

But then the kids started school.  In preparation for school I was reading articles.  I came across the title of a homily, not the homily, just the title.  It was a homily by Archbishop Chaput and it said, “If you want to change the world, start with joy.”
I thought about it for days.  Then, I read a verse in Thessalonians that said, “Be Joyful always.”

Joy. The word joy keeps showing up in my life. At a time when I was focusing on my pain and my sorrow.  I read a quote from Mother Theresa that said something similar to this: sorrow is like a kiss from Jesus.  In sorrow we are close to Christ.

All of these signs.  All these things I was reading. The words that were standing out to me.

  I feel like Christ is reshaping me, transforming me. I feel like I was a living statue and God is chiseling away at the stone to make me something more.  He is breaking up the hard cement I held myself together with for years, to make me softer, more fluid, something capable of holding more love.

I’ve often looked at life as something I needed to survive.  Having been through some tough things as a child, I built a lot of walls to protect myself, to protect my heart.  Other than my children, most people have had to work pretty hard to break down the walls and be close to me.  

I liked it that way. The ones that might hurt me, wouldn’t bother with the walls.  I know it is not right, but I’ve been caught it survivor mode for so much of my life, I just stayed in survivor mode.

I’m not supposed to merely survive. I am supposed to live.  And to really live, love needs to abound.  God is chiseling away at the walls so that others won’t have to work so hard.  

I know life is going to be hard and more sorrow will follow.  But He’s telling me to seek Joy, to suffer with a joyful heart and he wants me to understand that sorrow brings me closer to him and that brings me joy.   

I’ve mentioned Mother Theresa before.  She has been in my life lately.  He wants me to follow her example, as she suffered joyfully.  And just yesterday I read this quote of hers, 

” If I ever become a Saint–I will surely be one of ‘darkness.’ I will continually be absent from Heaven–to light the light of those in darkness on earth.” 

I think she found me in my dark place and is lighting my light.

 I know I may lose my boys to Duchenne.  The thought of them being anywhere without me peirces my heart.  I kow that my baby, part of me, is in heaven and if any of my other children get there before me, a part of me will be there already.

Rowen.  I understand him so much better.  I can talk to him more easily.  I have answers and that makes me more patient with him. I can help him now. With just a couple months of therapy, he doing so much better.  He’s happier!

My husband will heal. When we get to the other side of this we will be stronger than ever before.  And his Dad will live on through our family.  He loved to say, “He’s not heavy, he’s my brother.’  I think he could see something in my children that reminded him of his sibling relationships.  That is a blog for another day.

My heart, my loneliness.  I’m getting softer.  The top of the walls are starting to fall.  I know I need more help, I have to accept it. I’m saying yes much more often to those willing to help me.  I’m opening up to people.  I have along way to go, and being joyful  always is a tall order.  But I’m committed to seeing this through and I will work hard to find joy in the journey.

It is one of those days.  One of those days that I just can’t do it. CAN NOT DO IT.

Started off in Grand Island to pick up new orthotics for the boys. Let me back up. Last night at play practice Rowen came up to me limping and told me that his leg hurt so bad that he couldn’t walk.  I try not to get too alarmed because often times, when Rowen is extremely fatigued, he will say he is hurt versus having to admit he is tired.  He sat with me for a few minutes and then said he was going to find his friends.  I thought I was right.

This morning he got on my lap and said it still hurt.  I asked him again to tell me what happened.  He had been playing “Duck, Duck, Goose” and when he stood up to run, he heard a ‘pop.’  I checked him over, no swelling, no bruising, nothing, just slight tenderness.  We went about our morning.  At home the boys do not have to walk far or fast and I noticed only that Rowen was a bit slow.  We drove to Grand Island and at the orthotics office I noticed he was really limping.  My alarms started to go off.

My mind was racing.  If it’s broke it’s bad.  He might not walk again.  He has gotten so heavy, we are not prepared for him to go off his feet.  We have nothing to help us lift him.  Is the battery to his power assist wheelchair even charged?  Will he need surgery?  We will want surgery to help keep him walking.  We will have to go to Omaha.  Anesthesia can’t handle him here.  We have no groceries.  We have to get groceries so that the kids that stay home have food.  Text Jason.  What doctor do we want to see.  Those doctors can’t see him.  Do we go to same office?  ER? Urgent care?  Wait and see?

We left the orthotics office.  We went to Hy-Vee.  This was not a planned stop so I had no scooters for the boys.  We were not getting too much so I thought Rowen and Mary could ride in the cart and the other 2 boys could walk.  I had to lift Rowen (90 lbs) over the cart to get him in the cart.  Mary sat next to him.  I was pushing over 110 lbs of child.  And the cart sucked.  I was pushing and working so hard.  I was sweating and breathing heavy.  Also, I continued to add weight each time I put an item in the cart. Then, Hy-Vee is apparently re-stocking or organizing their shelves.  Every isle was full of carts and employees filling those carts with merchandise and other employees restocking shelves.  I was to the brink of tears several times, especially when I could not find the isle with the crystal light.

We made it out of that grocery hell.  We loaded the van.  Only, the car next to us parked too close and I could not support Rowen as much as I usually do.  He put a lot of weight on his leg and it ‘popped.’ I heard it this time. We met Jason at home who agreed we needed to have him seen.  We had an appointment at 4:10 but that was hours away and my mind was too far ahead of me to wait until 4:10.  Jason drove back out to work to get a few things he could work on from home and I texted babysitters until someone agreed to come over right away.

Jason came home and we went to the ER.  As we were entering the ER Rowen stopped and pretty fearfully admitted he had never been to the ER and did not want to go in.  I stopped and hugged him and promised that Mom and Dad would be with him every minute.  Brink of tears again as I realized that today the great big giant disease had over shadowed the little boy living with it.  Of course he was scared.  And it hadn’t crossed my mind until he said so.

We sat in the waiting room for nearly 2 hours.  They could not see us and Rowen was starting to get overwhelmed and exhausted.

We left and drove to an urgent care.  We had called ahead and they had no wait.  They saw us pretty quickly.  He had an X-ray and it came back with no breaks.  They thought maybe a strained muscle.  We were told to ice it and not to let him do anything that hurts.  I don’t feel completely confident; but only time will tell.  I hope they are right.

It is hard to see providers that are not familiar with our boys, our family, or Duchenne.  The little nurse or tech or whoever she was that was taking his vitals, asked us if he gets enough exercise?  I’m looking at him and what daily steroids for 5 years has done to my precious boy; but her obvious lack of knowledge about his disease saw a chubby little boy.  I wanted to flip her off and said so after she left the room…Rowen giggled profusely at my confession! Don’t worry, Jason was much more gracious and answered her question politely, “it is limited.”

I’m to the brink of tears again sharing this with you.  It is one of those days that I’m telling you that I can’t do this job.  It is so hard; so much harder than I ever imagined parenting to be.  It is one of those days that I’m telling HIM that my beautiful boys deserve someone so much better than me.

The saving graces though are an orthotics guy that told us he is coming to the boys’ play.  Two babysitters both willing to come over with no warning to help us. A husband that took an afternoon off to help me with the scooter and Rowen who was non-weight bearing for most of the day.  A daughter that came straight home from work and stayed with her siblings so the sitter could leave. On one of those days when I feel so inadequate, I am thankful for the many others around me willing to pick up the slack when I just can’t keep it all together.

People always tell me how strong I am.  I wanted to let you know I’m not all that strong.  I am so weakly human.  I doubt, I question, I tantrum!

I just love my kids and will do everything in my power for them. And pray a whole heck of a lot for God’s help with that power thing because without him, everyday would be one of those days.

It is beautiful here today.  The sun is shining, there is a gentle breeze and the temperature is perfect, it is calm and peaceful.  I was walking earlier and remembered a poem I had written about Nebraska and the breezes I was enjoying.

As I begin to more seriously embrace this blog and the formation of a book, I decided to share some of the poems and other things I had written 20 years ago to remind me and inspire me and encourage me.

I remembered my creative writing teacher in high school.  She told me then I should be majoring in creative writing when I was to go off to college the next year.  It had never occurred to me that writing could be my future.  My life then was challenge enough; I was happy that I was going  to college.  I was going to a small private school in my hometown.  I was going on loans and a couple of scholarships. It was expensive, if I had realized how long I’d be paying of student loans, perhaps I could have figured out a way to get to a public school.  The fact is though, it is the only school I applied to. I was living on my own then with no reliable transportation and no family support.  It wasn’t physically possible for me to even get to another school. Even if I lived on campus in a dorm, I would not have had anyplace to go over holidays or summer breaks.  In my hometown, I knew I could figure things out, but going anyplace else was intimidating and seemed impossible.

My life then would not allow me to dream of being a writer.  I thought teacher.  I could be a teacher.  Except for a couple of evening college courses, I have never taught.  I did not write for a long time either.  Social media pushed me to writing again.  The longs posts, sharing my family’s journey with Duchenne, it woke something up inside of me.  There was a writer shoved way down in there, screaming to get out.

As I started to think about this blog and starting a book, it was the memories of that high school creative writing class, the comment from a teacher that she thought I should major in creative writing and the pieces I save from classes that gave me just enough confidence to try.

I’m rereading the poems.  The one I mentioned is not as good as I remembered it.  I would for sure make some edits.  This particular poem, I entered into a contest.  I didn’t win or get honorable mention, but the professor, the judge, that addressed us that day at the contest talked about one of the lines in my poems.

“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.”

It was mentioned over and over again.  At the end of the day, as the kids from my school were  piling out of the school van we took to the contest, the teacher, not my own, but the one that volunteered to drive us, caught me. She told me that having my poem mentioned and discussed, was better than winning.  I still remember that. It felt pretty good, because not many people told me I was good at or good enough to do anything.

The entire poem:

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 on the line,
and catching the hair of young lovers.
Follow the spirit of the wind.

The grass dances as the wind blows.
It shakes and moves as no human could.
It would wear red, if in a hall,
for it is free, moving whichever 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.
Follow the spirit of the wind.

As I’m looking through my poems today I’ve read some that are pretty tough to read. I’m having a hard time understanding how my 18-year-old self had the guts to write about these things, knowing a teacher was going to read them.  I think writing was my therapy then and probable still now.  It gave me words.  It justified or helped me make sense of the things I was feeling, experiencing, watching.  She accepted and encouraged all of it.

Another poem and then I’ll be done, I promise.

The Bottle

The clear brown glass
was like the ghost
of the person
she used to be.

She was transparent
to all who loved her.
They knew the bottle
was a hopeful cure.

They absorbed the pain
she trailed behind,
and the bottle swallowed
the hurt she left inside.

Her wounds were drowned,
and everyone cried
at the barren woman
the bottle left behind.

My youngest daughter will start preschool in the fall and I plan to use those hours to sit and write.  I want to finish a book in the next year.  My childhood is something I don’t think about often, but as of late, it keeps coming to the surface.  I have to put it down so I don’t forget again.  Forgive me, if the blog is heavy with my early life right now. It is part of the storm I’ve weathered.

 

When my son was little and cried he would tell me that his eyes were leaking. I’ve always remembered it.  

Although this year is only half over it has been a year full of leaking eyes. And it feels just like that.  My eyes are leaking.  I’m not crying or sobbing (most of the time).  They are silent tears that simply slip over my eyelids. They flow easily, sometimes because of a recovered memory, other times with no warning at all.

As I prepared for this blog I remembered other years when my eyes leaked in response to life I was experiencing.

I remember being a 15-year-old kid, living in a foster home on a farm just outside of my hometown.  The foster home was fine.  I liked the foster parents well enough, there were two little boys living there that I adored like real brothers. But I was so miserably sad.

As the oldest of the 6 children living at home when we were removed and taken to protective care, I was the one questioned, the one that told all our family secrets so I wouldn’t have to go back.  The one that had to go to depositions and tell things about my parents.  I never wanted to go home, but most of my little sisters would have been very happy to go back.  I felt responsible for causing them so much misery.  I did what I thought was right. I was trying to protect them.

At 15 years old, I was not in a position to make that decision, nor was it mine. The state decided to pull us from the home based on the information they gathered, some of that came from me but they had other sources and probably knew more about what was happening in my home than I did.

At 15 though, I didn’t know that. I blamed myself and lived with immense guilt. I was broken. I was the one my mom and step dad singled out as the cause of all their problems. They said horrible things about me in sworn testimonies. The one that hurt the most and still hurts me a little to this day is that I was just like my biological father, a convicted serial killer living out a life sentence in prison.

I believed that horrible thing about myself for a long time; not realizing they were just trying to destroy my credibility. I remember many nights in the old farm-house, laying on the bunk bed below my sister with silent tears seeping through closed eyes. More than one night I fell asleep praying that I would not wake up the next morning. I believed the world and all of those around me would be better without me in it. More than that, I was sure I would never be missed.

God’s love was huge that year. He always answered that prayer “no.” He believed that I was good in this world, he knew the husband and children he would give me later would need me. Even when I did not believe it or know it myself.

Life went on. Eventually, my eyes stopped leaking at night and my prayers changed.

Fourteen years later, I was a college graduate, I had a good job working as a consultant to the Department of Education, I was happily married to a great guy, and pregnant with my 5th child. Life seemed too good to be true.

Then it changed. All of it. My son whose eyes leaked was diagnosed with Duchenne Muscular Dystrophy and in the following 18 months, Rowen and my unborn child Charlie would be diagnosed with Duchenne. My head hurt everyday. My eyes were dry and painful and yet tears fell from them everyday. There were many days I felt like I couldn’t breath. It was harder than anything I had ever experienced, ten fold.

My beautiful babies were given death sentences. My beautiful boys. I couldn’t then and still cannot imagine a world without them in it. I was in so much pain. For months I was a shell of a woman going through the motions of a life I could not recognize. At a point in life when breathing felt hard, my prayer life stopped. There were days I was on the verge of losing my faith.

Those of you that have followed this blog know that I did not lose my faith. And because we continued to live it, a little girl came along that brought me back from the void. My heart still hurt on a lot of the days between then and now, but I learned to fight, I learned I wanted to live a life well lived and I wanted to give my children the gift of lives well lived. To know the simple joys and also the greatest wonders. It is a work in progress. And even though it hurt, my heart was full of joy on a lot of the days between then and now as well.

And now, seven years later, we are here; half way through the year. We have suffered loss. Deep. Profound. Loss of life. Three times. In March, in May, and in June. I am shedding tears now as I struggle to find a way to explain and describe and it will have to wait. I’m not in a strong enough place to share the details so publicly, but I will, someday, when the time is right.

And as these losses continued to come, we learned my heart condition had worsened. We started a journey that would lead to a second diagnosis for our son. My husband’s heart broke with the lost of his dad and he is trying to find a new way to live without the man who loved and supported him all his life.

When Max, our oldest son was diagnosed, people were always asking us how we were doing. I remember my husband telling his Aunt that the hardest part of this was watching me hurt so much. I couldn’t believe that he loved me so much that my pain hurt him worse than his own. I don’t know that I ever fully understood until this spring. His heart is hurting so much and I can’t fix it. It hurts to watch him hurt. Almost as if he is drowning in a pool and he is always just out of my reach.

But this is what I know about the man I share my life with. He is strong. He has positioned himself in our family like the base of a mountain. When we need him he can pull us up from the valley below and be there to catch us when we fall from the top. He will tread this pool water like an Olympic swimmer and as the days and weeks pass he will find solid ground and be there at the base of mountain range bigger than any single mountain. Until then and always, I will reach for him.

Our marriage vows have become our survival guide over the past 16 years. These are the times we promised to love each other. These are the bad times and I know, because of the way we have chosen to live our life, that the good times are going to far outweigh the bad.

As I move forward with wet eyelids, I am praying for healing, peace, and abundant joy to be my companion as the calendar pages turn and the months bring me to a new year. A year when my eyes do not leak.

I’m living a life full of experiences that have left me on my knees asking why, crying for answers, just wanting to understand.

Answers don’t always come in pretty packages.  Sometimes there are no answers.   Every once in a while, they come just as you expected them to look.  More often for me, they are not at all what I thought, but exactly what I need.  They sometimes bring more questions.

When I was a little girl and I wanted to be loved and safe. I didn’t think my prayers were heard.  I never imagined He needed me endure so that some day I would be strong enough.

As a young woman, I wanted to be independent, do things all on my own because I didn’t know how to trust anyone else.  My answer was not an independent life.  My answer was a love that would teach me to trust.  God gave me a man to love and to be loved by, to laugh with, to cry with, and to share all of life’s ups and downs with.

After too few years of living without Duchenne, it entered my life with a big bang and turned it upside down.  

I thought I had already lived the hard part of my life. I thought I knew about pain and I wouldn’t have to hurt anymore.  I really thought I was living my happily every after.

I never expected something worse.  The pain that came when my boys were diagnosed was unlike any I had every known.  I understood then, the unanswered prayers of my past was God preparing me for my new present.

In the midst of the pain Duchenne brought to my life I prayed for healing, my answer came in a way that I had never intended. My boys were not healed.  They still have Duchenne.  My broken heart was healed though; with the gift of a beautiful baby girl.

I have joy and happiness, but I’m not living my happily ever after.  I’ve learned that it is something I may never experience in this life.  It will truly be in my after.

There is profound loss.  I’m convinced that as long as I walk my earthly journey, I will never know why.  Instead, I am left to find a way to live without and wait for a day I understand.  Perhaps then, that is my answer…wait.

Answers are sometimes full of pain. Why is someone sick, why is someone weak, why are they getting worse? For years, I have been searching for an answer to a question similar to those that is finally starting to surface.  I’ve sat and cried and let it break me a little.  I don’t know what I was expecting or how I thought it would come wrapped.  But what I got felt like being clothes-lined with barbed wire.  It hurts.

Sometimes we wish we never asked, but once you do you can’t give the answer back.

I am learning that answers are gifts.  These gifts are not always painless, they are not always what we expect, sometimes they create more and sometimes they take away. 

They allow us to know what we are dealing with though. They help us plan our next steps.  They give us understanding.  And eventually, even those that go unanswered, have the ability to give us peace.  The real challenge for me is to accept the gift, even if I would rather return it.  And I must work to remember to trust the teacher and His answers, even when it hurts.