#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

 

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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.

Taking Care of Myself Feels Better

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.

 

Hello Again

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.