2016: My year in Review

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!
 

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Fatherhood Was Just an Idea

My biological father died in prison, I only met him a couple of times. My most vivid memory of him was a visit to the prison when I was young.  It was before I started school, my youngest sister at the time was a baby, so I had to have been 3 years old or younger. He walked into the room I was in with my mother and little sisters and he was wearing shackles.  He had handcuffs around his wrists and around his ankles and a long chain connecting them.  He shuffled.  My mother told me to say hi to my dad.  I did not say a word.  One of them, either my mom or my biological father asked me, “Does the cat have your tongue?”  It was the first time I had heard the expression and remember it scaring me.  I expected a crazed cat to launch at my face and attack my tongue. Not much of a memory.

I know that we visited him maybe once more, but I do not remember it.  I vaguely remember landing  at an airport and my step-grandfather picking us up, but that was earlier, I think maybe after he had been arrested and my pregnant mother and her two young daughters were left to fend for themselves.  My mother went home.

My biological father wrote letters and sent birthday cards.  I rarely responded to the mail the stranger that signed his cards “dad” sent me.  I know that over the years my mother sent him pictures of me and my younger sisters.  After his death, I received a large manila envelope full of pictures I had colored, school photos, photos my mother had sent, even a newspaper clipping of a picture of me at kindergarten round-up that he had kept.

I had a step-dad too.  I visited him in prison with my mom for months, if not years of my life.  My relationship with him was very volatile.  There were times that were good and I loved him and there were times that were very bad and I hated him.  He died when I was 17.  I have another step-dad that I have not made an honest effort of getting to know.

Fatherhood was just an idea for me.  I never experienced having a father.  My idea came from watching television shows.  The dads on Alf, Family Matters, Full House were the dads that gave me ideas of what a dad was supposed to be.  I had friends in elementary school that had dads.  I remember that I was not jealous.  At the age, I’m not sure I knew how different my home life was from that of my peers.

I survived my childhood.  I never dreamed of a being a wife or a mother.  I dreamed of getting out. 

When I realized I was going to be a mother for the first time, I was terrified.  I was convinced I would be the same kind of mother as my own mom.  My relationship with my then boyfriend Jason, and now husband of 15 years was by coincidence, we both went to the same party on the same night.  It was not a relationship I discerned to make sure he was the man God meant for me.

What he was though, was nice.  He was good.  He loved me. And I knew I loved him too. I knew I loved him when he made me smile even when he wasn’t with me.  He very quickly became my best friend.

God was so good to me when he put this man in my life.  He will forever be one of the things I am most thankful for.  His heart had all the love in it for me and a baby and for anything else that came our way.  He was good.  He loved me so much.  Even when I didn’t think I could be the mother my child deserved, he knew he could be a father.  He was so right.

Our children, all 6 of them, adore their father.  And everytime I see him with them, even on the bad days, I love him a little extra.

He was the one that wrote a letter penned from our baby’s point of  view for her first day of daycare.  He is the one that worked 2 jobs when I was pregnant with our 5th child to make sure we could afford our newest addition and all the medical bills that came with a diagnosis we would never have expected.  He is the one that works all day everyday and still coaches our children’s sports teams.  He arranges all his vacation days so that he can be with me at as many doctor appointments as possible.  He is the one that waits until the house is quiet and sleeping before he unloads the boys scooters and charges them every night and then sets an alarm for the middle of the night to unplug the charged scooters and plug-in the other.  And when I’m exhausted and can not stay up a minute longer, he stays up with our busy teenage daughter and listens and talks and guides.

The kids would tell you about some of the legendary Dad stories while laughing uncontrolablly…the time he dropped a fishing knife and it landed on his foot.  The kids and I made camp that first night while he drove himself to an emergency room.  They like to tell the story about Christmas at their Uncle’s house when he needed stiches because he stabbed himself in the leg with a pocket knife while trying to open one of the kid’s Christmas presents.  They also might mention the time he got a technical foul coaching a little girls basketball game.

And as much as I enjoy laughing at those stories, they only tell me what I already know. He is the kind of dad that takes 5 kids, 12 and under tent camping and fishing after a long week at work.  He is the dad that is at every holiday loving and laughing.  And he is passionate about being a dad, whether it is during a basketball game, a doctor’s appointment, or a teaching moment with one of the kids.  He is a wonderful father.  He is beyond any TV dad I ever wished for when I was the kid.

He was out-of-town all of last week.  And although I’ve always known these things to be true, it was a reminder to me how blessed I am to be his wife and to be the mother of his children. Our job is not easy but with him next to me, I know we can weather the next storm and the one after that.

Mary Pearl

mary-1Today we celebrated my youngest daughter, Mary Pearl’s, second birthday. And after two years I am finally ready to tell that story.

About two years after the boys had all been diagnosed with Duchenne Muscular Dystrophy I had my heart checked.  As a  carrier, there was a chance my heart could be affected.  And it turns out, my heart was affected. I was diagnosed and started medicine that did not make me feel good.  After four diagnosis-es I was distraught.  At the time I would never had admitted it, but now I can see I was depressed and reaching to make things right again.

I home-schooled the boys that year, trying desperately to slow down time.  At that point, I just wanted the hands on the clock to stop turning.  I wanted to be stuck there.  I wanted to be stuck forever where all of my children were healthy and alive. That was also the year Max was accepted into a clinical trial that was showing promise,real promise, at slowing down progression of the disease.

Those things, home schooling and the clinical trial were distractions.  I could tell myself I was tired and sad and lost because those things were hard and those things were exhausting.  Now, I know I was trying desperately to do anything except feel; feel the pain, feel the joy, feel any support; I did not want to feel anything.  I was praying and begging not to feel.  To feel meant to hurt and I did not want to hurt anymore.

After meeting with our parish priest, he suggested a healing Mass.  Jason and I were completely willing.  Our priest was able to get a relic from Father Michael McGivney.  We sent a novena to all of our friends, family, social media accounts.  We prayed  it everyday until the Mass.  The Mass was beautiful.  We prayed for healing, we prayed for a cure.

Four or five months later, I realized I was pregnant.  Honestly, I was not happy.  I was scared to death.  I already had three sons with Duchenne and I was as scared as I have ever been about anything that I was pregnant with another son with Duchenne.  For 17 weeks we did not tell a soul. I even begged my husband to call our doctor.  I  didn’t want any “I told you so’s.” Jason asked him not to question our decision and just be our doctor.  We were blessed to not only have the doctor be a doctor, but he turned out to be a support system and friend through it all.

After the three boys were diagnosed.  We decided we could not have any more children. We didn’t decide if we wanted more children or not, we just decided we could not.  We could not risk another son with Duchenne.  And yet we did not do anything permanent.  We decided to stay with Natural Family Planning.  Duchenne already promised to steal so much from us.  We decided we could not let it steal our faith.  We continued to follow the teachings of the Catholic Church.

At 17 weeks pregnant we were scheduled for a ultrasound to find out whether the baby was a boy or a girl.  Our appointment was scheduled for 1:00.  I went to Noon Mass.  I went to prepare myself for another son with Duchenne.

After Mass I lingered.  I sat in the pew for awhile; avoiding any rush to get to the ultrasound and preparing myself for another son with Duchenne.  How do you prepare yourself for that?

I was sitting there and felt a peace come over me.  I heard an inaudible voice say, “It will be okay.  Call her Mary.”

Call her Mary?  Her? Mary is a girl’s name. The baby will be a girl?  I couldn’t understand.

I went to my appointment.  The ultrasound technician said girl.  We questioned her.  She was adamant it was a girl, that it was very obvious.  With tears in my eyes, I looked at my husband (who had no previous knowledge of my experience at Mass) and said, her name is Mary.  Half expecting him to look at me like I was crazy, he looked at me with a smile and said, “Okay!”

Mary Pearl Vertin was born September 25th at 4:47 am.  She weighed 6 lbs, 5 oz and was 21 inches long.  She was our miracle.  When I first laid eyes on her, my breath was taken away.  She had the darkest brown eyes I had ever seen and she looked directly at me; her look was slow, she was not flailing or screaming. She just keep eye contact with me.  It was powerful.

Mary has brought so much light into our lives.  She brings laughter and love and cuddles into our life.  She brought life back  into my life.  We were so muddled in the diagnosis.  We were so focused on the 20 year future that meant we would lose our children.  I was distraught.  I was not a good wife or good mother.  I hurt the ones I love because I was hurting so much.  When Mary came, there was light again.

All children are heaven sent; but Mary’s purpose…well I think I know, but always wonder. Remember that healing Mass I talked  about.  I believe Mary was the answer.  We prayed for healing.  I had a cure for Duchenne in mind.  God gave me Mary.  Mary was glue for my broken heart.  She helped me piece it together again; maybe she helped me peace it  back together again.

She brought his wife back to my husband.  She was a sister to my sister-less daughter, she was small and innocent and needed help that even a weak boy with Duchenne could give her, she was a healthy sibling, she is a soul sister to a little boy with brown eyes, and a play mate to our youngest.

I will never stop being thankful. Had we followed the temptation, the suggestions from many to have done something permanent instead of following what our hearts were telling us to do, we would have robbed ourselves of the joy and healing power of this one beautiful child.

 

 

Storms Brewing

I changed the name of the blog and now have my own domain!  The first blog I wrote nine months ago was titled Weathered Storms.  That is what I should have named the blog then.  My life is a series of Weathered Storms.  I am an on demand mom, but the things I write about are the storms that come along with life, not just motherhood.

I am ready to step it up a notch on my writing.  I hope to see my blog grow some more over the next year or so.  I want to be a writer.  There, I finally said it!  It only took me 36 years and two degrees that have nothing to do with writing for me to finally admit that is what I want to do.  I will go one step further by saying I really hope to write a book in the next year or two using the blogs as an outline.  It is time for me to take this serious and pursue something I always wanted to do, but never thought it could be.  Seriously, God has given me a lot of life to live thus far; it is like paint for my canvas.

September has been a hard month for me.  It is what spurred me to change the name of the blog and use it to find peace.  Writing is therapeutic to me.  I make realizations when I write.  I let go of a lot of baggage when I write.  It is one way I take care of me and it is time to take care of me.

The first week of September I was at the hospital with my three sons who have Duchenne. It was the first visit since diagnosis that progression of the disease took front seat.  It hurt.  I found myself in an intense grieving, again.  As the last two weeks have gone by, each day is a little better, but I’m still visiting that grief much too often.

It is has thrown me into a state of storm.  Anger, tears, fighting the understanding that God is trying to give me.  I have a lot brewing around inside of me.  I’ve realized that I have open wounds on top of open wounds.  For years I have been in survival mode.  Overcoming a traumatic childhood, finding some happiness with my husband and growing family only to face Duchenne and all the fear and pain that comes with it. I too regularly think, “what’s next?”

My home life as a child was abusive.  I survived and I forgave.  And I thought that was enough.  But I’ve realized I believed all the terrible things I was told about myself as a defense mechanism.   I never want someone I love (or anyone) to say or do something that can hurt me like I was hurt before.  As a result, I am not gentle on myself, in fact, I usually believe the very worst about myself; because if I already believe how horrible I am, it can’t hurt me if someone else tells me that (at least that is what I tell myself).   But it is not fair to me or the people God has put in my life. I am carrying a cross I was never meant to carry when I do that.  I don’t know why it has taken my so long to finally admit, I need to change.  I also know it is part of the other open wound on my heart.

I am a carrier of Duchenne Muscular Dystrophy.  And although my brain tells me one thing, my heart is holding on to something else.  My heart cannot forgive me for passing this genetic killer onto my children.  I know it is not my fault.  I had no idea what Duchenne was, much less that I was a carrier.  It is not a punishment for something I did. God doesn’t make mistakes and my boys are meant to be here just as they are. I have to let it go.  I cannot  blame myself.  And I’m beginning to understand that it is not something I need to forgive myself for.  Because again, it is not a cross I was ever meant to carry.

I have these big things brewing inside of me like a storm.  And then there are all these other components of the storm circling like dark clouds in the sky.  I am trying to hold on to all this pain because I struggle to believe that I deserve not to hurt. I forced myself to believe all those terrible things I heard as a child. And sometimes I just want to pout and be childish and ignore God’s will for me. And sometimes I just want to hold onto all of it because giving it to God may not give me what I so desperately want.  I want my children to live a long healthy life and I am so afraid to give it to God because I am scared he has other plans. And maybe his plan it exactly what I pray it is.  I need to take that leap and find that healing.

But I tell myself I want to be miserable.  If my children have to suffer, then I think I must suffer too.  But, if any of you have met my children…they are not suffering.  They are happy children, bursting with life and a real zest for it.  All that suffering is not meant for me.  I have to stop punishing myself, because God isn’t punishing me.  He is loving me and forgiving me, and  being patient with me.

Those are the storms I am weathering now.  It will be a process, but now it is my turn to love me, forgive me, and be patient with me.  I hope to write more about those storms, specific feelings and memories.  It will be a healing process for me.  And I hope sharing my process can help others with their own journey. It is time for me to see the rainbow after the rain. I know there will be other storms, but I am going to learn to remember there will be other rainbows too.

Saran Wrap, Service Toddlers, and Sibling Love

This is a blog that I’ve been thinking about for a while now, but thanks to coffee with a friend this morning where I explained it out loud, I was inspired to write it down.

Strange title I know.  But my world, my reality…it is strange to me. There are many days that I think this must be what Alice in Wonderland felt to wake up in world completely backwards and foreign to her.

We had pie the other night after supper.  Dishes were done and the kitchen was clean.  I was wrapping the pie in Saran Wrap when my 23 month old Mary, stuck her arm straight out and excitedly motioned for me to wrap it around her arm.

The toddler goes with us to a majority of the doctor appointments.  We don’t have family close by to help watch her and we have way too many appointments to pay a babysitter every time with our already tight budget.

Mary has been with her brothers through countless blood draws. When our 5-year-old Charlie has a blood draw he is scared to death. Over the years we figured out that a little bit of “numbing cream” on his arm before the blood draw makes a world of difference for him.  Instead of holding him down kicking and screaming, he will sit on our lap and hold our hand.

We keep the numbing cream on with Saran Wrap.  Because the toddler wants to do everything her brothers do, we  wrap Saran Wrap around her arm (without numbing cream) each appointment.  In her world, in our world, in this world we never dreamed we would be part of, that is what Saran Wrap is used for.

This makes me think of the term “service toddler.”  This is a term I first heard a couple of years ago via social media.  I remember thinking, “what?”  “How odd?” But I didn’t have a toddler at the time and my sons’ needs at the time were not as great as they are now.  But now, it is a term I know in my heart.

Now, this little girl we have been blessed with; this little girl who goes to all the appointments; this little girl knows her brothers’ needs before they do.  If they forget something she takes it to them.  If something is too heavy for one of them she carries it for them. Yes, the 23 month old can more easily carry her 7-year-old brother Rowen’s iPad than he can…one of the heart wrenchers that is part of this world we never expected to be part of.

If they drop something she picks it up.  And when they are scared or tired or burdened, she is the one that brings them smiles and calms them. Even more amazing and awe-inspiring is that with the 7-year-old she shares a twin like connection.  I don’t know how to explain it except that it is  like watching a piece of a miracle unfold every day of my life.

We have six children.  Three of them have Duchenne. Three of them do not; but it affects all six of them.  The love these six kids have for each other, it gives me goosebumps (at this point I am actually typing through tears).  It makes me wonder what I ever did to deserve to be part of it.

The youngest has learned to serve others at a year old.  The only healthy brother, is forever their defender.  If a wrong is every suffered by one of his brothers, he is the first to know and the first to act.  And their oldest sister, she is a caretaker that can give their medicine, put on their night braces, stretch their muscles; and she has shown an early interest in the medical field.  It stems from her desire to be the most help possible to her little brothers.

This love I see in action everyday; even between the normal sibling arguments, annoyances and jealousies…  This love is stronger, more fierce, more inspiring than anything I could ever have expected to be part of my world.  It is a hard, sad, joyful, blessed, stressed, strange world I am part of.

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Mary and Rowen

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Holding his hand while he waits for a blood draw

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The caretaker

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The defender

Meaningful Differences

Recently my family has been advocating for a drug called Ataluren (Translarna), a treatment for Duchenne Muscular Dystrophy.  All three of my sons with DMD have had access to this drug though a clinical trial.  And now the drug company that makes Ataluren is fighting for FDA approval.

There have been articles about our family and our desire to have Ataluren FDA approved in Parent Herald, Exceptional Parent, and we are working on one that will run in Momaha (Omaha World Herald’s women’s interest and parent blog).  I have been happy for the press and awareness the articles are helping to generate.  But truth be told; they are just scraping the surface.  What this drug means to me runs much deeper.

There was a time that my naive youthful self would never have known about something like this.  If I had only known then that 3 of my children would be diagnosed with this cruel and unrelenting disease, I would have paid so much more attention in biology and chemistry because I would have known how much this would truly mean to me. I would have known it would affect the life of my children.  Affect their life, but directly impact their quality of life and my amount of time with them on this earth.

I want to share with you how Ataluren impacts my sons’ lives. Some of these things may not sound like much at all, but to a parent of a child with Duchenne, they are huge things.

I’ll start with my oldest son, Max.  Max is quite a character. Max is 10, he will be 11 in November.  I can’t help but compare him to other boys I know that are his age, who have Duchenne, and are not on Ataluren, or any other trial drug. This is how I know Ataluren is working; other boys his age with Duchenne cannot do these things.

Max loves performing in the theater.  Two summers ago he was the clock in Beauty and the Beast and this past summer he was Michael Darling in Peter Pan and Wendy.  He was really awesome in both productions, and I am trying very hard not to be biased with that description.

That may not sound like something that Ataluren would  have an effect on; but here is how I know it was helping.  Max went to 2 hour rehearsals every day for several weeks.  There were 6-7 steps that led to the stage.  He was able to maneuver up and down those steps several times each rehearsal and performance.  At the end of the night, when he was at home, he was not exhausted.  Prior to being on Ataluren that would have exhausted him. But on Ataluren he could do the rehearsals, the performances, and still come home and have energy to spend time with his siblings, his dad, and me.

The second example I want to share with you is that this past summer Max was finally tall enough to go on the water slides at the water park in our home town.  He was so excited that first day; I felt sick to my stomach trying to imagine my almost 11-year-old son with Duchenne climbing the two stories of stairs it would take to go down the slide.  But I was so pleasantly surprised that I found myself in tears.  Max went up those stairs and down those slides 4 times that day.  His brother without Duchenne could have done that 10 or 20 times and it would not have been a celebration; but for Max it was like winning the lottery! He did it 4-6 times every time we went to the waterpark this summer.  I know in my heart of hearts that other boys his age with Duchenne could not do that.

That brings me to my middle son Rowen.  Rowen is a 2nd grader and bit quieter and a more serious little guy.  Rowen is my weakest, confirmed by his neurologist. His Duchenne is more severe than that of my other sons.  It is like he just started out weaker and now the disease is progressing much more quickly through is body.  It is hard to watch.  He is never going to be able to do the stairs at the water park.  He doesn’t have the stamina to do a play.

But, again, I can compare him to other boys close to his age that I know.  When I do that I can see Rowen has a more stable gait.  Some boys walk with more of an extended leg, more up on their toes, and more curvature in their back. Rowen as weak as he is has a more stable gait. Some of the other boys seem to thrust their chests forward more and swing their hips from side to side more.  Rowen does not do that, even as weak as he is, his gait is stable. I believe that Ataluren helps you where you are at, even the weakest of Duchenne patients.

And finally, I want to talk a little about my youngest son Charlie. He is a joy, truly and honestly, you have not met a more joyful child than this boy.  Charlie is doing better than either of my other sons were doing at age 5.  I believe that having access to Ataluren since the age of 4 plays a large role in that.

Charlie started kindergarten last week. And instead of falling asleep or being crabby because of the demand of the full school day he has never experienced; he played outside with his neighborhood friends and even rode his bike (with training wheels) until it was time to come in to eat.  Ataluren is the only explanation for the fact that he was able to do that.  Neither of his brothers could do that during the first weeks of kindergarten.

That same week as I was looking out the window and saw one of our little neighbor boys running in the grass I noticed another little boy running after him.  It took me a minute, but then I realized it was Charlie running with very limited  Duchenne characteristics that are easy to see when you see a boy with Duchenne; especially to my trained eye.  To someone who didn’t know he had Duchenne, I’m not sure they would have noticed.

I want so badly for this drug to be approved so that my boys continue to benefit as well as all boys with the same mutation. I know Ataluren is not a cure, but it is making meaningful differences in the lives of the boys who take it.

boys 2
Rowen, 7, a more serious little guy
boys 1
Max, 10, at the water slides
IMG_0706
Charlie, 5, a joyful child

Footprints

I’ve been treading water for the last month. June was fast and furious but we played a lot of baseball, spent a lot of afternoons at the water park, and worked hard in the garden!  So when it was time for me to leave for 5 days to attend a conference on Duchenne Muscular Dystrophy in Orlando, I was very excited for a few days to myself.

First mistake.  I was thinking about a conference on Duchenne (my worst nightmare) as a vacation.  What?  I don’t even know what I was thinking.  I spent 3 full days talking about the hardest thing in my life; the very thing that threatens to steal my children from me.  I also spoke some truths out loud there, that I had not had the courage to say at home.  By saying it; a whole new set of realities were born for me.  Realities that I was not ready to accept and that I am still struggling to fit into my world.

It was probably best to say it out loud and admit it to myself; because not two weeks later, my son is hurt, wearing a boot, and using his wheelchair daily.  I’m worried about everything from getting a lift put into the van to how quickly he will heal to how many months or years he will be walking until he can’t anymore.  And worse, is what I see on the outside, happening on the inside?  How are his heart and lungs?

Heavy stuff.  I’m not sure what my next move should be.  I’ve simply surrendered to prayer.  Admitting that I don’t know what is wrong with me, I don’t know what to do next.  But the purpose of this blog is not to burden any of you with all of that, but to share with you how those prayers are going.

I’m still feeling overwhelmed, but I can not just stop living.  We have kept up with our usual activities. I am still laughing and loving with my family for hours and hours of each day.  It is just that there is this little something nagging at my heart, like little injections of sorrow and ache when I am least expecting it.

But this is what keeps happening…like little injections of hope and peace when I need them the most.

Last Sunday before Mass I prayed one of those surrendering prayers. An hour later I was making lunch and the babysitter showed up an entire hour early.  I checked my text message to see if I told her wrong, but I didn’t.  She came an  hour early and I seized the opportunity to spend a quiet hour alone before my scheduled activity.  I went walking through a department store and found a necklace that I would not normally have bought for myself, but it was part of a huge clearance sale and was only $9.99.  It was a silver heart with a cross in the middle.

Then Monday night I spent an hour in perpetual adoration and let it all out and thought about all that was burdening my heart, weighing heavy on my soul.  At the end of my hour, no one came to take my place, so I stayed for a second hour.  That hour brought me peace I had been longing for.

And today, well I share a lot of our journey on our Facebook page for the boys.  This week I had shared how my 10 year old fell at the  end of a play he had a role in.  He fell hard and hit his head, was bruised and upset.  It was a bad night.  The very next day, he went back to his play and did it all over again.  He didn’t give up and give in.

I also shared how my 7 year old had hurt his foot, went in for an early morning x-ray before camp.  He got the bad news, got a boot to wear for an indefinite about of time, and then went straight to camp with a go-getter, positive attitude.  He didn’t give up or give in.

Someone who follows the page, stopped me this morning after dropping the kids off at camp.  She told me that my boys are and should be an inspiration to all of us.  With all they go through, she said, they never let it stop them.

She is so right, and gave me a message I so needed to hear.  I get caught up mourning all the things I wanted for them and suffering because of all the things that they have to experience.  But the thing is, they just keep on keeping on.  They are happy and joyful and mine. I am blessed.  And on top of that, God has given me a total of six great children and a husband I love to walk this path with.

God has kept me afloat always.  But as of late, he keeps reminding me that he is there.  Right now, when my cross is feeling especially heavy, he will not let me forget he has me.  It is like footprints in the sand.  When life is especially hard and you can’t go it alone, he picks you up and carries you.

 

How Sweet It Is

Hello all.  It has been awhile since I’ve been on the blog.  I have been busy soaking up summer.  Literally, I love the sun and spend my days outside running, biking, working in the garden, taking the kids to the water park, and watching lots and lots of ball games. But as much as  I hate to admit it, I over did it yesterday.  Too much sun and not enough water.  So it seems like a perfect day to write a blog and writing a blog seems like a perfect excuse not to start folding the laundry that is piled up in the back hallway.

I dropped my oldest off at an open gym and her high school this morning on my way to take two of the other kids to a summer camp at their elementary school. On my way home I was thinking about high school and that in 3 years our oldest will graduate.  Then I started to think how many years of the school system we have left; and it is a lot of years considering our oldest will be in college before our youngest even starts kindergarten!

That kindled a memory of when we got pregnant with our second child and people were surprised; they thought we would not have any more.  For a few minutes I tried to imagine what that would have been like.  If we had stopped after our first child, I would never have known Duchenne, possibly living out my life without even know what it is.  And as happy as you would think that should make me, it was a sad little twinge in my stomach because if I had never known Duchenne, I would never have held and loved three of my sweet little boys that are growing into fun, ornery, courageous boys in front of my very eyes…what a blessed experience it is to get to be their mom.

If we had only one child, I would never know a June full of baseball games or how to clean a pair of baseball pants that have grass stains.  I would never have had to run to the sports store to buy my son a cup before his baseball game because he left his other at the field he played on the day before.  I would never get to watch a 9-year-old boy be the best friend his brothers will ever have because he doesn’t see a diagnosis, only his brothers and he is not afraid to tease them, beat them in a race, take a swing at them…because that is what boys do and sometimes he is the only one that treats them like a regular kid.

If we only had one child, I would never have witnessed my oldest start to cry the first time she held her baby sister because after 4 brothers she thought she would never have a sister.  I would never know the relentless nagging, tormenting and arguing that I spend my days regulating.  I would not know the feeling of shared excitement and anticipation running through the house like electricity the night before Christmas.  And dance parties in the kitchen would not be the same with just 3 of us…because 8 people jamming out in our tiny kitchen is my favorite family activity….EVER!

If we didn’t have this big, crazy family of mine, I would not know how sweet life is.  Living with Duchenne is not what I imagined as a young mother expecting my second child, nor did I expect 4 more children to follow. But without Duchenne, without my house full; I would not know how sweet it is.  What I’ve learned is that life is beautiful, every part of it.  It is a sweet nectar that you eagerly take and drink up; not to let any of it go to waste.

#makeduchennehistory

Those of you that follow me on social media may have noticed this use of this hashtag as I’ve shared posts taking about what today is in the Duchenne world.  It is the day the first ever drug to treat Duchenne Muscular Dystrophy may be approved by the FDA.

Hundreds of Duchenne patients, parents, doctors, researchers, and advocated have traveled to the advisory committee meeting with the FDA today to share their knowledge, experiences, and support of approving the first ever Duchenne drug.  Some of those people have committed their entire lives to getting the duchenne community to this point.

I couldn’t be there today and I would be lying if I did not admit that part of the reason I am not there is that I’m heartbroken.  There are currently 3 drug companies working to get FDA approval for treatment of Duchenne.  One of the companies has already had their meeting with the FDA and it was turned down.  A second company, the one that makes the drug Translarna/Ataluren that all three of my boys are on, received a refuse to file letter. Our community can not be turned away again. Everyone is very hopeful that today is the day we will make Duchenne history.

My mind has been with my friends and Duchenne family all day, they have rarely left my thoughts and I’ve followed their updates all day.

Corticosteriod regime.  Shower chair. Van lift. Handicap accessible. Manuel wheelchair. Mobility scooter. Power chairs. ACE Inhibitor. Cough Assist. Wheelchair-bound. Fatty Embolism Syndrome. BiPAP Settings. Hospital bed. Compression fracture. Heart failure. Ventilator. Death.

Five years ago, before the boys were diagnosed, I could have read those words and assumed it was a list of things describing life in a nursing home.  A nursing home filled with many people who had lived full lives.  People who had been married and had children, grandchildren, and even great-grandchildren.  People who had careers and maybe some career changes.   People who can tell you stories about the good old days when they were young and strong and competed is some rugged sporting activity.  Or people who could tell you about their hobbies, their love for gardening and getting their hands dirty. And people whose childhood was full of running, jumping, climbing, playing.

Today, I read this list of words and it describes a my life, my boys’ lives, my family’s life.  It describes life with Duchenne Muscular Dystrophy.  And it is a nightmare.  Children diagnosed with this disease have their childhood stolen for them.  These words are the things that are happening to them at the beginning of their lives, as young children, and teenagers. As parents of children with Duchenne, we do our best to give them to opportunity to do what other children do like running, jumping, playing.  But it is a race against time, because they are progressively getting weaker and we know one day will be the last day they get to do them and that day will come far sooner that it is supposed to.

Around the time my boys get fitted for their first communion suit, they are also getting fitted for their first wheelchair.  And once comes wheelchairs, next comes van lifts and a ramp on the house.This summer we will purchase mobility scooters to use because sometimes the work of using a manual wheelchair, even with power assist wheels is too tiring for their arms.  My oldest son stayed home from his elementary school track meet today because he can’t compete in a track meet, even one designed for 4th and 5th grade students. It is difficult to try to think too far into the future, because without approved treatments for Duchenne, the future is full of loss, the loss of my beautiful boys and many many others.

But wait.  That is the point of this post.  That is the point of today.  That is why it is absolutely necessary that today Duchenne history is made!  Because there is this drug that has been developed, it treats a specific mutation, so not everyone, but the science used for this drug can be adapted to treat many more mutations and can help many more children. The boys that have been taking it in a clinical trial are walking as teenagers.  Their heart function and lung function is good. The drug is safe. This drug is drastically slowing down the progression of a fatal disease and when you slow down progression, you prolong their lives.  Parents and their children want access to this drug, they understand Duchenne and the science behind this drug.  They drug has to be approved.  It will save lives and it will promote the development and approval of other drugs to save even more lives. God willing, a drug that will save my boys too.

#makeduchennehistory

 

I Love Being There

I’ve previously mentioned that I grew up in and out of my mom’s house.  I lived with her from the time I was a baby until the 2nd grade when I went to live in a foster home.  Then I went home for a couple of years, then a shelter for kids like me and then another foster home.  Then home for couple months, back to the shelter, another foster home and then I was done.  I didn’t want another foster home and I didn’t want to live at home.  I didn’t do it gracefully, but I made my own way.

All of those years I just wanted normal.  I wanted to live in one house, I wanted my parents to drive cars that worked, I wanted a refrigerator full of food.  I wanted a mom that came to my school concerts and have after school snacks for me.  I never wished for a big fancy house or fancy vacations.  I just wanted my mom.

I want to say that over the years my mom made it to some of my concerts or other events.  I do remember a picnic that she went too and there may have been more that she was there for, but I can’t remember in any detail her being at any other events.  I was in track from 7th grade through all 4 years of college.  I don’t think she ever saw me throw.

After a lifetime of her not being there, I did not want her there.  I didn’t invite her to high school gradation, my wedding, college graduation, to see my first child.  I went years without speaking to her or having any relationship with her.  I didn’t want to build a relationship with my mom, I didn’t want one…it was easier to ignore her than deal with all the hurt and baggage that was our relationship.

Lots of years have passed since then.  My mom is in my life again.  I let go of a lot of anger and I forgave.  We are doing the best we can.

Those things I wanted were something my mom was not able to give me.  I was mad for a long time, but time healed those wounds.  Without sharing with you my process of healing, I did come to understand why things happened the way they did.  Her life was not easy, she did try. But life is messy  and it is hard sometimes and too often it was overwhelming.  I know that she wanted to be the mom I wanted her to be.

When I found out I was pregnant with my oldest daughter I was scared to death.  I was so afraid I would be a bad mom.  It was a hard time for me, I wanted my mom and I did not want my mom.  I was scared.  But the minute I held that baby girl in my arms, all was right in my world and I became exactly what I was supposed to me…her mom.

With all the background I want to share something.  It may seem mundane or run of the mill; but it was a very rewarding mom moment.  Before I was a mom and before she was a teenager, I thought those moments I was waiting for were gradations and medal ceremonies.  But those moments I was waiting for are the moments that make up my days.

I have six kids now and finding one on one time with each of them can be a challenge.  For my oldest and I, track has always been our thing.  I’ve coached her in throws since she was 8 or 9 years old.  We spent summers traveling all of the midwest going to track meets so she could compete.

Last Tuesday, she had a great day.  She had been struggling in the shot put; but I went to her practice the day before helped her with her technique.  The day of the meet, she barely made finals and was mad.  I know what to say to her to get her going, we talked and she went and threw her first throw in finals and it was a big throw.  A personal record by over 4 feet.  She actually looked at me like, what did he (the guy marking) just say?  But she had this huge smile on her face and she was looking right at me.  She was in disbelief, I told her what her mark was and she hugged me.  Now get this, she is a teenager….in high school and she hugged me…in front of people….and did not pull away.

I was pretty caught up in the meet and was busy texting my husband.  But later that night, I was smiling from ear to ear.  I was so happy I got to be there.  Happy because the memory of that smile on her face is permanently burned into my memory.  Happy because she hugged me.  She was happy and she wanted to be happy with me.  Those are the moments people.  Those are the moments I live for.  I love being a mom.  I love being there.