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.

Mary and Rowen


Holding his hand while he waits for a blood draw
The caretaker
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
Charlie, 5, a joyful child