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.

 

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.

 

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’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.

Hello all!  I feel good today. I’m feeling good lately.

I am generally an active person.  I generally feel organized and like I have a plan for my day and my week.  I generally feel l I do a good job of taking care of me so that I can take care of my family. But slowly, I stopped doing all of those things.

Thanksgiving hit and then Christmas and high school basketball started.  By the end of it in late March I was treading water.  Suddenly it was Easter and I was exhausted ALL THE TIME.

I had gain 10 lbs and my clothes were not fitting right and that alone makes a girl feel bad. I  was too tired to do fun little things with the kids.  I was short and was yelling and I didn’t like the mom I was being.

Somewhere in a 6 month span I stopped taking care of myself and I did not have enough left to give to anyone else.  Moms read this all the time.  We know we are supposed to take care of ourselves!  And not feel guilty! BUT, it was very easy to tell myself I was taking care of myself  because quite honestly, I didn’t want to extend the energy I did not have to do one more thing.

Oh the difference a little time can make.  At the urging of my husband and the realization I might have been a little crabby I went to get my nails done 2 months ago.  It felt good but was like a band-aid.  The next step: I bought some wrinkle cream for my face (something I had just stop doing somewhere along the line for God knows what crazy rationale I was using).

At that point I’m starting to enjoy a little time to myself.  I’m starting to see that I was, in fact, not taking care of myself.  I scheduled a hair appointment and I had my hairdresser die my hair instead of the box die I had used for the last 6 months.  And I started working out regularly again, not a lot, but like 2 times a week.  I even went to the library and checked out a book (I haven’t started to read it yet, but hey, I can re-check it out!)

I slowly stopped taking care of myself and I had to slowly start again to really see the value. Two weeks ago I started a 30 day workout video program.  20 minutes of exercise everyday and I feel like it is a good workout… I mean, I am dripping with sweat when it is over, seeing some results and it is a  great stress reliever.  And just this week I started a natural supplement to boost energy.

Why did I ever quit doing all of this things?  I feel so much better.  I am laughing and joking more.  I keep busy during the day doing laundry and meal prep so that my evenings are more focused on the most important 7 people in my life.  I am so much less stressed.  I found time to do things I enjoy like working in the yard and spending time with other DMD families, this week I even met a friend for a walk around the park.

If you are reading this and you are a busy mom or you are reading this and you feel like you are treading water:  take a break and do something for yourself and then make it habit.  I feel like my old self again.  I would have never let my kids go so long without doing the things that keep them healthy.  Not only, I was setting a bad example, but by not being healthy and energized I was not the mom I like to be.

 

It’s been a month since my last post.  I had hoped to post a weekly blog but life has other plans and we’ve been busy living it.

A month ago we traveled to Cincinnati Children’s Hospital with the boys for their biannual visit.  The visits take some wind from my sail and it takes me awhile to process everything, not to mention brood and mourn and celebrate all that we learn while we are there…part of the reason I’ve not blogged in a while.  I shared an update from our visit on our Facebook page, you can read it here if you would like:  www.facebook.com/MaxRowenCharlie/.

We celebrated Easter.  The kids had a nice long break and we spent it enjoying family.  We traveled to Kansas City to spend it with extended family we do not see often enough. It was really great because it was the first time in well over a year we traveled for reasons other than doctor’s appointments or a sporting event.  We spent time enjoying each other and were surrounded with love.  It was great.

Last week was busy.  We had two track meets, an all day field trip, a baseball scrimmage and two practices.  Over the weekend my husband played 5 or 6 games of basketball in an alumni basketball tournament.  I love the man, but I am still trying to figure out how they won so many games.  It was fun; but it definitely kept us busy. I’m going to quote my 8-year-old son here, but it sums up the fun and wonder of the weekend.  “My favorite part was watching the fat guys play!”

And yesterday.  What a great day.  We spent it in Lincoln with several other families living with Duchenne.  We cried together, we laughed together, we shared a lot with families that just get it, who don’t require explanation.  It was so rewarding.

As I reflect on it today, I’m thinking about Divine Mercy Sunday, which also happened to be yesterday.  I think, what a great example of Divine Mercy.  The people we spent yesterday with all live a version of the life we are living.  It is not easy.  It makes me remember a weekend almost 6 years ago that we were spending with a family at a youth track meet in Iowa.  We had just been diagnosed and I shared the information with my friend and the mother of the family we were with.  She said something that I have never, nor will ever forget.

She said, “You are not alone.  God gave us each other to be there for one another.  Even Jesus needed help when he carried his cross.”

Spending Divine Mercy Sunday with the people mentioned above was reassurance that God gave us each other.  We don’t have to do the hard things alone.  My heart is a grateful heart for the many people who we share this journey with and the many people that support us.

This week should be a slower week for our family. I need to clean this house because it looks exactly like the landing pad it has been for the last month.  But my heart is craving time outside, admiring and breathing in the new life that spring brings. Mostly though, I want to love on my little people. Spring feels like new possibilities and is good for my soul.

 

 

 

Life has been in overdrive lately.  I guess that is how life goes in a family of 8!

There has been some good and some bad in the past couple of weeks.  Sometimes I am happy to be so busy because it stops me from obsessing over the things I can’t control.  Then I look in the mirror and I see the gray hairs, the bags under my eyes, and the extra weight and I know that being so busy wears on a person. I really hate to slow down sometimes though because then I start to think and worry.

I know I write a lot about Duchenne; but it plays a huge role in my life.  What I hate most about it is what it is doing to my boys.  But what I hate second most is that it robs me of dreaming about the future.  I hate to think about the future because I don’t know what it will look like for the boys.  I don’t want to dream about amazing things because I don’t want them to crush me if it can’t come true; but I don’t want to imagine the worst because without hope life could be unbearable.

A little update on what is keeping us busy these days.  Our oldest daughter plays on a good high school basketball team and they just finished three weeks of sub-district, district, and state play.  They finished third in their class at state.  Jason and I made it to every game and took all the kids to the state tournament.  Our daughter has 5 younger siblings who adore her and think she hung the moon; although, they would never admit that.  It was fun and we are proud of her.

The day after state, our 8 year old had two basketball games and baseball practice and because the weather was so nice we took our daughter out for discus practice at a park where the little ones had fun playing in a large dirt pile. After an ice-cream break, we did some chores, made supper, and went to evening Mass.

Sometimes our family life seems like an oxymoron.  We have healthy athletic, sport loving kids that keep us busy with non-stop leagues, tournaments, and practices.  We also have children living with a chronic progressive disease that keep us busy with non-stop doctor appointments, specialist visits, runs to the pharmacy, clinical trials, etc.  It is like living in two worlds with very little overlap.  It can feel like living two lives at once.  It is probably while we are tired.

A couple of weeks ago we received news that the clinical trial drug that our three boys are on received a refuse to file letter from the FDA.  In summary, it means that the FDA refused to even consider approving the drug for commercial use in the United States.  For close to a week we did not know what that meant and were worried that it would mean our boys would have to come off the drug.  

At this point, this drug is our best chance at slowing the progress of the disease and changing the outcome for our sons.  For now the boys will stay on the drug and the drug company is doing what it can to continue to seek FDA approval.  I am taking the boys to Kansas City tomorrow to pick up another 12 week supply of the medicine for the boys and we just hope that it will not be our last supply.

We will get home in the middle of the week.  Then leave on Sunday to take the boys to their specialty clinic in Cincinnati, where they will endure three days of procedures, consults, and appointments.  They generally have the best attitude during those days.  The hardest part is keeping them fed, because we have such a busy schedule it is hard to find time to eat.  The other hard part is getting them through blood draws and any IVs.  

As long as we make sure they get to eat, they really do a good job and get through the days with smiles and minimal tears.  They are usually so tired afterwards that they fall asleep on the drive to the hotel.  But after some rest they are absolutely contented to go eat out or swim in the hotel pool.

We are busy and sometimes sad and sometimes stressed.  But at the end of everyday I am able to thank God for a long list of things.  We have six happy children; they smile every single day.  We laugh together every day.  I am doing all of this with my best friend, whom I am still in-love with and still makes be feel absolutely adored.  We have warm beds, cupboards and a refrigerator full of food, a home full of happy memories.  A dog and a cat that add to our funny stories.  The list goes on and on.  It is all of those things that give us fuel for the busy days.

 

 

  
Anchor my heart in you, Lord.

I read that in a prayer during adoration last night.  They were the words I needed.  I was trying to ask God to come and fix me.  For weeks now, I’ve felt lost, and this is the thought that had been fumbling around in my heart and I could not express.  Anchor my heart in you, Lord!

I have been so tired and overwhelmed.  Everything is hard some days.  Some days I can fool myself into a state of normal, but lately something has been amiss.

I have always been a religious person.  I have early memories of my mom dressing all of us girls up every Easter and taking us to church.  I remember my first foster home, they went to a Presbyterian church every Sunday.  I received my first bible from that church.  

When I moved to Hastings to live with my mom again, I walked myself to a small brick church I had spotted a few blocks from my house.  There I received confirmation and was baptized with all of my sisters. When I went to live in another foster home I started to attend church with them.

Faith and belief were a constant in a not so constant way of life. The churches changed and the deominations changed but the feeling I had when I allowed myself to be open to the Lord did not.  As a child my life was a bumpy ride and Jesus was my life jacket. He kept me safe.

When I met my husband in college, I believe the holy spirit was working though him to bring me to the fullness of my faith. It was in the early years of our marriage I began to love the Catholic faith and after my sons were diagnosed with DMD I began to cling to it like a life preserver.

These past few weeks I have not been myself.  For Lent this year I decided to go to confession once a week.  I was going through the motions of Lent.  I did not put a lot of effort into my first confession of Lent but found myself to the brink of tears when I heard myself say I was having a pity party instead of trusting the Lord.  The Holy Spirit working through the priest encouraged me to tell this to the Lord.

I didn’t not go to adoration that week and I found myself dreading Mass that weekend.  I didn’t want quiet.  I prepared even less for my second confession and kind of winged it when I got in there. I was rendered speechless when the Holy Spirit working through the priest told me I was down in the dumps and needed to ask the Lord what was going on with me.

I went to adoration.  Although afraid of the quiet, I wanted to be there; but for the first 45 minutes I could not hear. Finally, I looked up at the crucifix and said, “I am broken, please fix me.” That is when the words, “Anchor my heart in you, Lord,” started to make sense.

I opened my bible to 1 Peter and everything I didn’t want to hear was there in front of me.  I had been pushing God way because I didn’t want to hear him.  I wanted to feel sorry for myself.  I wanted a break; but I didn’t  want to have to need help.  I didn’t want to wait to feel better. But pushing him away was making me feel worse.

This is what I read.  

1 Peter 5:2 “Tend the flock of God in your midst, not by constraint but willingly, as God would have it, not for shameful profit but eagerly.”

1 Peter 5:6 “So humble yourselves under the mighty hand of God. 7Cast all your worries upon him because he cares for you.”

1 Peter 5:10 “The God of all grace who called you to his eternal glory through Christ Jesus will himself restore, comfirm, strengthen, and establish you after you have suffered a little.”

I’ve read and re-read the passage.  It really speaks to me and gives me guidance and assurance.  I will keep working fat it and keep praying: Anchor my heart in you, Lord.”