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.

 

 

Last week was not my strongest or my best.  But, it was.  As I waited for my anger to subside and my normal to come again I went to confession.  I was mad, but not at God. Still, I was pulling away.  In the confessional I admitted this.  I was reminded that there was no way to move forward without going to my Father.  I was encouraged to pause and go to Him.

By the weekend I was feeling better.  Although I had not hit the pause button yet, life was getting ‘normal’ again.

This morning was Psalm Sunday of the Passion of the Lord.  My pause came to me.

It was during the Responsorial Psalm, “My God, my God, why have you abandoned me.” I was singing, “My God, my God, why have you abandoned me,” while staring at the crucifix covered in a purple cloth, I couldn’t see Jesus, but I felt him.

My heart started moving.  Moved at the sacrifice made because of my sin.  I could hear and feel.  Jesus carried the weight of all the sins in the world on his cross.  The whole world.

My cross, as heavy as it seems, as many moments that pass when I feel it crushing me beneath its weight…it is nothing compared to the weight of the whole world.

Mass went on and kids were restless, Rowen and Charlie shoved each other all the way down the isle after communion.  We debated where to eat after Mass.

The way my heart had moved though…all day I found myself reflecting, not on the weight of my cross, but on the many blessings that came because a sinless man, the son of God, died for the things I’ve done wrong.

I went grocery shopping today and Rowen went with me.  I’ve been feeling racked with guilt.  He takes daily corticosteriods for his Duchenne Muscular Dystrophy. The steroid effects are so harsh and they are so hard on him.  I’ve been torturing myself wondering if it is the right thing for him, wondering if he would be better off without them, wondering if he would be worse or better without them, wondering if he is miserable because of them.

Rowen is a soul I can sit next to without a word passing between the two of us and know exactly what he’s saying.  Life moves too fast too often. I paused today getting groceries.  It was just the two of us and I could hear him.  He is a happy soul.  My boy is a happy soul.  The time I spent with him today calmed the anxiety I’ve been wrestling with.

First thing this morning, before Mass, one of our cats was missing.  It turns out he had jumped down into the sewer and could get back up.  My husband had to lift the manhole and I had to hang half way into the sewer to get him out.  As I thought about our rescue effort later in the day, I had to laugh.  One, because I was hanging through the sewer manhole in my pajamas. Two, because in November I went to a rescue and adopted two 12 year old cats.  It wasn’t my husband’s favorite thing I’ve ever done, but now he teases me and says I’m running a cat hospice.

He is so funny and when I do something crazy he finds a way to love me anyways.  I thought of the August I finally quit all forms of gainful employment to be the mom I wanted to be.  He might have stressed about the money, but instead of voicing it to me, he sent me flowers with a card that said, “Happy Retirement.” I’m a lucky woman.  I never doubt his love or that he was meant for me.

After this, I started to look.  I started looking for my blessings.  It is funny what you notice when you look.  There was a man behind me in the checkout line.  I overheard him talking to someone.  He has two grown sons that were coming over for dinner.  You could hear pride and happiness in his voice.

He noticed how full my cart was…it take a lot to feed a family of 8 for an entire a week!  He teased that he could put his food in my cart and I wouldn’t even notice.  He was jovial.   My attention turned to Rowen and tasks at hand.  I noticed him watching us, Rowen and I.  I could feel him wishing time would rewind.  He would love to have his boy in the front of the cart again.  At that moment I felt very blessed to have my son so little and to be sharing the moment with him.

Later in the day I heard myself laughing.  It is my mom’s laugh.  My relationship with my mother has been a stressed one during my lifetime.  My childhood was one that left me recovering.  But, I can remember my mom laughing.  She had a great laugh.  When she was happy, the whole world was happy.  I feel lucky to have that piece of her and hope the same for my children…that when their mom is happy their whole world is happy.

I can fault myself for not getting the laundry done or the the floor swept or not getting the most healthy dinner on the table.  I can question ever decision I make as a parent. My kids don’t.  They want me to laugh and I want them to remember me laughing.  I want us to be happy.  Our happy is never going to look like anyone else’s happy though.

Happiness does not come in a mold.  Happiness is authentic.  We find it in the blessings that come from the journey God gives us to get to Heaven.  Those blessings and the journeys are authentic.  God gives each of us our own.

The Lord knows the sorrows in my heart.  There are times when the sorrows take front seat.  There are times when I forget the blessings and I fall into despair or anger or jealousy.

But when I pause.  When I take a minute and I let the quiet set in.  When I take a minute so I can hear.  When I take a minute and turn to Him.  That is when I see the blessings, remember the joys, find my peace.  When I pause and I turn to Him I find the strength to go on, to be happy, to the be the wife and mom I was meant to be.  When I pause and turn to Him, I can find the right again even when the wrong is loud.  His voice his stronger.  When I pause and go to Him, I am stronger.

 

 

They say that with a chonic illness or disease that grief can be in a constant cycle.  I think it is true for Duchenne.  And today I am stuck in the “angry” part of the cycle.  I’ve shared my heart with you when I’ve been so sad I thought it could stop beating.  I’ve shared with you the many blessings and joys of my heart.  Today’s post will not be one of graciousness or beautiful prose…that is my disclaimer.

We were at the hospital all of last week for our sons’ appointments.  There were no emergencies, they were all scheduled as part of routine care.  We do this every 6 months.  Despite some changes that will come from our visit, the final results were that the boys are, for the most part, stable.

Stable is a good report.  Stable allowed me to take a deep breath.  Stable means they are not worse and for the time being we have held off the inevitable.  We have held off progression of the disease that will try it’s damedness to take my boys.

We’ve spread the word.  We have spread the ‘stable’ world. We spread it because it is in fact better than more decline or progression and in the last year we have had 2 of those visits, 2 visits where we didn’t even get stable.  Those reports are hell.  After those reports there are no deep breaths.  There are tears and a new layer of pain over the scar tissue that remains from the last time we got bad news.

We’ve been home for almost 4 full days.  I feel horrible.  I feel exhausted and every movement seems to take all the energy I have.  I don’t feel like smiling or talking and do not expect any form of ‘socialble’ to come from me.  I had a hard time following a conversation I was having this morning.  I walked around the house looking for my phone as I talked on it to my husband.

I made myself go for a run today and stay on the treadmill for an hour searching for some clarity and peace.  Finally, it clicked.  I am pissed.

I am pissed because they are stable.  I am pissed because we have been forced to live a life that has us celebrate stable.  I try really hard to be bigger than this.  I focus on the positive, on the next steps, on the good.  It is good that they are stable.  But because I am a mom of kids with a chronic and fatal disease I have to settle for less.  I don’t want to settle for less.

I want improvement.  I want to leave the hospital just once having heard the words, “He has improved.” I want to hear, “It looks like he is going to beat this thing.” I want to celebrate that report, not stable.  I want more than stable.

I’m crying right now.  But these tears are hot with anger and they sting. I feel trapped in a reality that no one should have to live in.  I feel like screaming.

I break down in tears when I don’t expect them.  I want to scream at the world.  I want to drink too much wine.  I want to run until it doesn’t hurt anymore.  I don’t want to be nice.  I want to use vulgar language.  I want to drop an f-bomb.  I want to park behind the next person I see parked illegally in a handicapp spot and honk at them.  I really want to scream at the next person that tries to sell me a natural supplement or herbal vitamin.  I never say anything because it might offend someone. But damn it. I’m offended.  If there was a vitamin out there that could save them, we would have it! I’m tired of being offended by well meaning comments that feel like a stab in the heart.  Im tired of being offended and never saying anything back because I try to see the good in what they are doing; even when they can’t see the hurt they cause.

It feels better to write it down.  I will probably never do most of things I feel like doing, but I can write it down.  And if you catch me acting in a way I describe, you’ll know why.  I’m human and going through something most humans will never experience.

I’ve been here before. It won’t last.  But it is an important part of how I do this.  People ask me all the time.  How do I do this?  I don’t know.  I can’t really work the steps, but when the cycle of grief comes to me, I let it.  I have to feel it. Allow myself to feel it. I have to validate these feelings because they mean something and very often they become the fuel that drives me to do everything I can for my kids.

In a couple of days the new therapies will have begun, all the new prescriptions will be filled.  All the new will gradually become part of our normal and the feelings of anger will subside.  The reality is that I have to hope I’ll be here again in 6 months, because I won’t hear the things I long to hear, but I hope I can hear ‘stable’ again.

There are always little bites of anger and sorrow and I can ignore those little bites and focus on the blessings and joys.  Today they are less of a bite and more like Jaws hanging off my shoulder and that can not be ignored.  I can’t let the beast take another bite, but for today and for the how many ever other days it takes, I’m going to be jaded.

I remember her backyard.  She was not a blood relative, but she was the closest thing to grandmother I would ever know.  She lived in small white house on a corner lot.  There was a garage with only slivers of white paint remaining.  In it, a small vacant apartment.  There was a cellar off to the left of her back porch.  A swing set and a tractor tire full of sand decorated the area between the garage and the house. Sometimes I remember a large garden and sometimes I remember playing Red Rover where the garden would have been.

My childhood was probably a mess during that the years that I played in the yard, ran next to the house, raced over the top of that cellar, and danced between the sheets hanging on the line. What I remember though, is playing in the vacant apartment in the garage, making up stories about who used to live there.  I remember running in and out of the house and laughing hysterically when her sister “Weasel Bug” would come over.  I remember dancing with my best friends, twin boys, the same age as me.  My sisters and I would pretend they were our grooms on our wedding days.

Her little kitchen.  Her old fashioned refrigerator.  Her peanut butter, butter, and honey sandwiches! Playing cards at the table for hours.  The way she said, “shuffle, oh, the buffalo.”  I still say that when I play cards and shuffle the deck.

I remember spending the night at her house with our friends.  Several of us girls in the spare bedroom and the boys on the the hide-a-bed in the living room or vice versa.  We would stay up late stifling giggles and thinking up shenanigans. We would hold our breath and try to be quiet when we heard her coming to tell us to be  quiet and then laugh when she left.

Things didn’t stay that way.  She was our babysitter, but we were there all the time.  It never felt like daycare.  It felt like love.  It felt like family.  It felt like home.

A couple of weeks before 2nd grade, we were dropped off.  I don’t remember the day, so it was probably a mundane drop off, like hundreds of times before.  What was different I would not realize for hours, maybe even days.  

I don’t think it was the first time we had been left longer than expected.  I think I know because I remember an answer she gave all the time, “She’ll be coming around the mountain when she comes.” We must have asked her a lot, “When is my mom coming?” The last time, no one ever came back to get us.

Things started to change.  I think she had a feeling of what was about to come and didn’t want it to happen.  I think she felt stuck.  School was starting.  She didn’t have a car, she didn’t have a driver’s licence.  She was too old and didn’t have the kind of money she would need to keep 6 girls. She knew she would have to call for help or we wouldn’t go to school and then what?

I was 8.  I was in 2nd grade the first time I went to live in a foster home. After my first foster home, we moved to a new town, a town where we could start over.  For a couple years, we would spend one week of each summer with her.  Those were really great weeks, but things were not the same.  I was not the same.  I was older.  The things that had happened and were happening affected me. I grew up fast.  No more childhood innocence to protect me from reality.

The only thing that stayed the same was how very much I loved her.  And to this day, the memories of being a child at her house transport me to some of my happiest memories.

I wanted to visit her today.  I wanted to remember her and the beautiful gifts of love and happy memories she’s allowed me to carry all these years.  They protected me.  The 10 years that followed my 8th year were full of some pretty tough stuff.  There were more foster homes, an emergency protective shelter, violent arguments with my parents, depositions and court hearings, and more, lots more.

Eventually, I was able to pull back together the pieces of me that lay broken like a shattered glass.  I’m not sure she even knew everything I was going through, but I felt like she did and often felt like she was with me.  I remembered her always.  Dorothy Pearl was my family.  She left an incredible mark on my heart.  I will remember her always. And now, I have my own little Mary Pearl to keep Dorothy’s memory alive.

I was made for all my joy.  I was made for all my sorrow.  I was made for everything in between.

I never knew I wanted to be a mother.  When I was pregnant with my first I was scared and convinced I would fail. The day she was born and nearly everyday since, I’ve thanked God that he gave me the gift of motherhood.  Being a mother might be the single thing that makes me feel most loved.  I’m not talking about my child’s love for me.  I mean God’s overwhelming love for me.  Being a mom to my children is such a personal experience and knowing that God gave me my children and made me their mom, makes me feel very well known, very believed in, chosen, and loved.

I wasn’t made to be just anyone’s mom.  I was made to  be their mom.  God made me specifically for it.  I know it.

Physically, he made me for it.  I am 6 feet tall and I have an athletic build.  I played sports all of my life thinking and being encouraged to so because I looked like an athlete.  Much to my dismay and probably to that of many a coach, I was mediocre at any sport.  A kicker though, is that I was very strong.  In college I could bench my weight and squat twice my weight.  If you think that made the shot put go any further though, you are as mistaken as I was.

Now it makes perfect sense.  I have three sons with Duchenne Muscular Dystrophy.  They are growing weaker when the rest of the children grow stronger.  I am their legs when they can’t walk, I am their elevator when the stairs are too steep.  I am the lift that gets their mobility scooters into the back of the van.  I am strong enough to do all of that.  God made me strong, not for sports, but for the children he would someday give me.

I am tall and long.  When a double door entrance is not accessible I can hold both doors open at the same time so that my boys can ride their scooters through. I can push a stroller in one arm and hold a baby in the other. My hands are as big as I’ve ever seen on a woman. I can hold more that one hand at time.  I can grasp three little hands in one to guide my littles through a busy parking lot and hold the hands of three brave little boys all at once as we wait in line for a blood draw.

Emotionally, God made me for it.  I grew up in and out of foster homes.  I weathered a lot of storms.  I learned how to continue to live life and strive for better despite the challenges in the obstacle course of life.  God prepared me for the pain and grief of having children with a fatal disease.  When they were diagnosed I remembered how to live life and strive for better despite the challenges and now I can show my children how.  God made me resilient for the children he would someday give me.

Spiritually, God made me for it.  I remember several experiences from early in life, when i very strongly felt his presence protecting me.  Even during periods of my life when I wanted to be left alone, I remembered that feeling.  And know, I look for it.  I see it in my day to day and it strengthens me. God gave me faith, for the mountains I will move for the children he gave me.

God made me for it in other ways.  I have master’s degree that virtually goes unused as I am unemployed and would very happily like to stay that way.  I only started it because it was free through my employment at the time.  I was so quiet. It was the foster kid in me that hated to draw any unnecessary attention to myself.  I hated to be in front of people.

In that masters program there was a professor that would not allow us to sit and answer a question and for so many projects we had to get up in front of the class. I became very comfortable in front of people.  I’m an advocate for my children now.  I talk about Duchenne everywhere I go.  In front of large groups, in front of students, last month I had audience with my United States representative and two US Senators.  I’ve talked in front of the FDA for my boys.  God made me an advocate the children he gave me.

I learned, I’m still learning that when something goes wrong, not to ask “Why Me?” Instead, I want to ask, I try to ask, “How have you prepared me for this?” And I’ve learned that sometimes he has prepared me by blessing me with a skill or a strength He knew I would need.  Sometimes, it is person put in my life for that exact moment in my life. Sometimes, there is no answer and then I have to find the courage and faith to just trust that God made me for this.

It’s a little unreal that 2016 is coming to a close.  Reflecting on what has happened the past 365 days reveals how very busy we were, some tough stuff, and plenty of happy family memories.

In January I traveled to Dallas, TX for a meeting about Ataluren (the trial drug the boys are on).  There I made new friends, many of those friendships will last my lifetime.  I left Dallas on my birthday and flew home feeling really positive that Ataluren would receive FDA approval in 2016.

Upon arriving home, a snow storm hit Nebraska.  There was so much snow and some extra days off of school and we had a blast!  We played in the snow.  I have a vivid memory of my husband and all the men of the cul-de-sac out in the snow in all their cold wear drinking a beer like it was a summer evening.  There was a blanket fort up in the basement for days and  Jason and I even had a night-cap in there one night.

February…well I can’t really remember February so I’m guessing nothing big happened or it was bad enough I blocked itfeom my memory.

In March our daughter played in the Nebraska State Basketball Tournament, her team ended up 3rd.  A local newspaper covering one of the games mentioned Lexi “making the biggest shot of her young career…”  It was a great shot and for as long as I live I don’t think I’ll forget jumping up and down like a crazy person when she made it.

By March, the Vertin family was also noticing that Pappa (Jason’s dad) was not himself and in some pain.  We also traveled to Cincinnati for the boys bi-annual clinical visit. Their check-ups were mostly positive, mainly needing some med changes.

Shortly after Easter, we learned that Pappa had cancer.  Jason spent some extra time with his parents those first weeks and months of the diagnosis.   Months after Pappa’s diagnosis, Jason’s mom was also diagnosed with cancer.  She was very strong, she persevered, and showed us all a little about what determination looks like.  There were some tough days; Jason loves his parents so and it is hard to watch someone you love hurt.

In April Lexi turned 15 and is still learning to drive.  She prefers to drive with her Dad because “I” make her nervous.  It’s okay though, because I prefer she drives with her Dad too because “she” makes me a little nervous.

April was also exciting because Nebraska started a support group for families effected by Duchenne.  It has been nice to meet with the other families in Nebraska on a regular basis.

May was a stressful month.  We had become very unhappy with our school situation and had made a decision to have all four of the boys transfer back to Hastings Catholic Schools  in the fall.

The annual MRC Golf Tournament was held in Crete during Memorial Day Weekend and we loved it.  It was also successful enough that we were able to purchase new scooters for Max, Rowen, and Charlie.  The scooters have been a great source of independence for the boys.

In June our beloved cat of 12+ years disappeared, we are not sure what happened and miss him very much, especially me.  The void he left was filled pretty quickly as we welcomed a new dog, Leia, into our family.  She is a good dog and loved very much.

The same day Leia came, Max and Rowen went to MDA camp.  It was a special year because their cousin Emma volunteered as a camp counselor and was Rowen’s counselor at camp.  It was a neat experience.  If the boys continue to go to camp, I imagine that the number of Vertin volunteers will continue to increase! Chance also played in an All-Star baseball game; he enjoyed it immensely.

July was a memory filled month for me.  My sister from Texas was home and I was able to watch her son be baptized.   Max was finally tall enough to go down the water slides at the water park and he told Duchenne to  take a back seat! He was also Michael Darling in the play Peter Pan & Wendy.

I also braved a solo trip to Denver will all of my 6 kiddos.  We watched Lexi play some ball and hit lots of the tourist activities.  We made lots of memories, my favorite was probably our sandy stop at Lake McConaughy on our way into Denver.   We stopped and played in sand and water for a couple of hours and it was awesome!  The kids are begging to go back…I hope we can spend a weekend there in 2017!

In August the kids started back to school.  Mary missed the big kids but is loving her one on one time with mom.  And the move back to Hastings Catholic Schools was absolutely the right move for our family.  The kids are happy there, the kids are learning, and therefore, we are happy parents.  Chance started tackle football that month and it was a great experience for both Chance and Dad, who helped coach.

August also brought a first for me.  The week after the kids started to school, I flew to Washington, D.C. and met with the FDA.  If that sounds scary, it’s because it was a little scary.  But, by that time, we had learned that the FDA had refused to review the new drug application for Ataluren. I had to go to fight for the boys.

In August I start s to work out and a regular basis and found that I really loved a class call “body pump.”  It is a weight lifting/ cardio class.  I am getting much stronger physically which is a great help to me as I manually load and unload the boys scooters each day for school.

By September, I had started getting the hang of the blog thing and celebrated Mary’s 2nd birthday with a blog to explain all that she had done to heal and complete our family.

I harvested my best garden to date this past summer and was able to freeze and can quite a bit of vegetables.

September was a tough month though.  I traveled alone to Cincinnati with Max, Rowen, and Charlie for their clinical appointments.  I got pretty sick with a terrible cold while there and received  tough news.  Rowen’s abilities had started to diminish quite a  bit since the previous appointment and they saw an area of concern on Max’s heart.  We had to start preparing our home and van for a time when Rowen may not be able to walk and started, what I felt like, was a new stage of Duchenne care by adding cardiac medication for Max.

In October there was a lot of volleyball.  We attended a great family wedding and I finally got some good pictures of the kids all together, in nice clothes, with a great back drop! 

The kids really started to settle in and find their niches at school and we finished off the month like most families, trick-or-treating!

Thanksgiving was special this year.  Jason’s parents hosted Thanksgiving in their new home and the entire family was there to celebrate and give thanks. 

As soon as we got home from Thanksgiving, I knew it was time that our home had a cat again.  Lucky for me, the one I wanted had a brother and I had to adopt both.  Benji and Kendall are now members of the Vertin family.

December is coming to a close.  I havr always been told that holidays were hard for many Duchenne families. That had not been by experience until this year.  It was a hard Christmas season, but I was held together by a faithful God, the love of my family, and many many Christmas blessings from our community.

During 2016 we shared out story more that ever, in an even a bigger way, including an article in peoplemagazine.com.

Of course, there was some backlash, but for the most part people embraced us and have lifted us up.  

I have often thought over the last year about this:  I grew up a foster kid.  I was convinced I was un-loveable.  Growing up I always put the blame on myself, if I had been a better kid, my mom would have loved me.  If I had been more worthy of love I would not be in a foster home.

Over the years that has changed.  First and foremost because of the way my husband loves me.  He has been the greatest blessing bestowed on me.  He loved me first and made me believe I had always been loved, was worthy of love.

And now I have an entire community, a Duchenne family, and many strangers that love me and love my family and give so freely of themselves for me and my family.  This year Jason and I have grown even closer. As I have grieved the FDA decisions and grieved the progression Duchenne is making in my sons…he has lifted me up and loved me even more.

There was a lot of good this year and a fair share of tough. I pray for even more good and a little less tough in 2017 for me and for all. 

Happy New Year!
 

It’s been months since my last blog post.  I have not had it in me.  Whatever ‘IT’ is that allows me to write this ever so personal blog, it has been missing.  

I’ve started lots of blogs….in my head.  I haven’t written anything down outside of a social media post.  There were the 30 days of thanksgiving where I posted each day of November about something or several somethings I am thankful for.  Eventually, I will transform those posts into a blog or a series of blogs.  This post though, is maybe a prelude.

I have been angry and sad and mad and exhausted and infuriated and humiliated and grateful and happy and joyful and so tired I can feel it in my bones.  I’m not in a place today where I can write about all of the things that are making me feel all of those ways.  But  I’ve prayed so much and I know all of it is part of my path to Heaven.

I was at adoration in the middle of the night last week.  On my knees in front of Jesus I said it all.   I told Him I’m so mad that my kids are not healthy.  I’m absolutely infuriated that, as a parent of a child with nonsense mutation Duchenne Muscular Dystrophy, I have to exhaust myself and expose myself to any media outlet that will listen, that I have to take time away from my family to write letters, travel to the Washington, and make noise to get the FDA to approve a drug that is making things better for my boys.  I’m even more mad that I have to do all of that on top of everyday Duchenne.  I’m shaking with anger that I have to do all of that and it is not even a cure.

What’s worse is that I have one partner in all of this that loves my children as much as I do.  I’ve been mean to him.  I can’t take this out on Duchenne because as much as it is a part of my life, it is not here for me to take it out on.  Instead, I take it out on my partner, my best friend, my husband.  And even worse than that, he knows what I’m doing and he won’t fight with me.  Which is a blessing for my marriage, but it doesn’t help relieve any of my hurt, my frustration.

I said all of this during adoration.  I ended up in spontaneous prayer and caught myself saying…’thank you for letting me be their mom and his wife.’  They are my joy and happy that go with my awful and terrible.  Can I have one without the other?  If not, then I pick both.  If I can only have them with Duchenne and all my heartache, I still choose them.

It’s been a bad couple of days.  I’m more tired than usual.  There has been travel and stressful situations and an emotionally exhausting series of events.  

And then there is the fact, that everyday bad days that we all have do not exclude parents of children living with the burden and stress of a rare and fatal disease like Duchenne. Today my son fell 2 times, both times in public, both times there were messy tears and people watching. This same son has recently stopped tying his own shoes because he said it is getting too hard.  My other son needed his scooter to get into his sister’s basketball game…a walk he would normally make on his own, but  because he played on an indoor playground today he did not have the strength.  The same son has recently stopped using stairs, except for the two in front of our house and has told US that it is is time for a ramp.  These are all signs the disease is progressing.  No matter how hard we work, we can’t stop it from doing that.

Then we have all the normal stuff mingled in with the guest we didn’t invite.

I am pissy because my daughter’s team lost their game and she is struggling with a stress fracture.  There are still mean girls at her high school;  even with everything else she deals with as a sister of three brothers with Duchenne…it makes me mad that she doesn’t get a free pass from all that.  I’ve missed several workouts because it is too hard for me to juggle finding time for me and all the kids needs when they are all home for break.  I feel guilty for feeling that way because one will be off to college in two years, I don’t know how much time I’ll get with the boys, and the little ones will only be little once.  My great big van is not big enough for a lift and is adding stress to my life as I anticipate three of my kids going off their feet.  Icing on the cake…my dog had diarrhea while I was at a basketball game today and only one of the piles of watery poop was on the laminate wood floors!  And my husband is physically unable to clean such a mess without dry heaving.

I am not as strong as people tend to give me credit for.   I cry in the shower so my family doesn’t see.  A lot of those showers end with me giving myself the same pep talk.  I tell myself not to cry because I have them here with me.  I know far too many parents whose children are not. Don’t cry, you’ve heard their sweet voices say, “I love you.” Don’t cry because you get to hold them. Don’t cry, your children have had the opportunity to run and play without the confines of a wheelchair.  Don’t cry, your children are so very loved and they will never question it.

I have to search for the silver linings.  I live everyday knowing there is a possibility that I will outlive half of my children.  There will be a day I can’t hold them or hear them.  Everyday, I see my children living less and less independently, without the help of a scooter or me as their legs.  Someday they will be confined to a wheelchair. 

I get through it all because that day is not today.  And I don’t want to lose today to my grief for tomorrow.  I have to live today TODAY.  That’s what living is right? Living like there is no tomorrow.  I don’t do it the right way everyday.   I need to learn to balance my needs with making the most of today. But for as many todays as possible I want to make the most of every day and every minute I get with my kids the way they are today.  And tomorrow I want to make the most of every day and every minute I get with them the way they are tomorrow.