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.