The brothers of Duchenne: Watching my son begin to understand what DMD will mean

“What am I going to do when Matthew is in a wheelchair?”

There was desperation and fear dripping from these words. His eyes were brimming with tears and I knew that he was experiencing the sense of loss that I had experienced 5 years ago when Matthew was diagnosed.  

My son, Owen, is 9. He is old enough to grasp the difficulties that Duchenne brings, but young enough to process it in very selfish terms. He saw how the changes in his brother’s abilities were going to affect him. He cried as he mourned not being able to wrestle on the floor with his brother, the days when they would no longer chase each other, taunt each other and behave in the rough way that brothers do.  He got a glimpse into the future and it horrified him.  

I remember that feeling.

When Owen, Bobby and I talked about it, we did not sugar coat the effects of Duchenne, but did stress the honest hope that we feel. When we talked about the research, he perked up and said, “I bet those doctors can figure this out.”  I told them that I was sure that they would, but it takes time and a lot of teamwork.  

We talked about the race (www.parentprojectmd.org/milesformatthew) and he said that was one fun thing that has come out of Matthew having Duchenne. I cherish this response because I always want my children to see the glass half full. Finding something good in every situation is so powerful and it keeps us strong.

Duchenne does not just disable its victim; it disables and disarms all who love him. There is, however, some relief in sharing this burden with our son, however painful it is. It is not a secret, it is not unspeakable, and it is not taboo. It is part of what defines and drives our family and we embrace it in the sense that we all must own it. 

Nine-year-old boys are not often known for their empathy. This moment of pause, reflection and emotional outpouring was truly beautiful, to be treasured, because it is the greatest show of love and concern that a person of that age can give. 

So here is the glass half full: In a moment of painful realization came a connection between parents and child and a new outlook on family for our son. I believe Owen grew up a little last night. This is a gift to cherish.

Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, a wife and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy. 

40 - and finally figuring things out

Well, I am 40 now.  I am heading down that slippery slope of becoming my grandmother, who knew absolutely everything and would tell it exactly how she saw it.  In a way, this kind of handle on life is refreshing.  It is black and white, very clear and always amusing, if you are not the victim.

I am going to make a valiant effort not make it to that bluntly critical state as I journey through the second half of life, which already has a few perks.  The greatest so far is the relief of having finally figured a few things out.  And because there is a bit of my grandmother in me, I can only assume that everyone wants to hear what I have to say and if you don’t, I am going to say it anyway!

So here goes; the key to happiness, per Allison Greiner, who has recently achieved middle age status:

1.     The first critical key to happiness is people. I believe that we are shaped most by the people in our lives, so we should be spending our time with those who lift us up, challenge us, are honest with us, who give us perspective and make us smile.  Don’t forget to smile.  

2.     Love yourself.  Please forgive the cliché, but I really do believe this. I spent a lot of time ignoring this piece and wasted a lot of precious time, as a result.  Here is the truth: The people that we treasure in our lives do not love us for the way we look, what we have, what we do for a living or in our spare time.  They love us for all that cannot be defined.  There is a real freedom in letting all the rest go and just being happy in your own skin and trusting that it is indeed a great skin to be in.

3.     Second, laughter is paramount. Not just at the world around us, but at ourselves.   I take great pleasure in laughing at my own expense and so do others.  As a teacher, I have a great audience every day and I think my relationship with my students is stronger because I do not take myself too seriously and can have fun while doing meaningful work.  No one truly appreciates someone who laughs at the expense of others, but it is very endearing to others when you can laugh at yourself.

4.     Perspective. Tragedy and pain are a part of life, but what we all must remember that there is no sorrow without joy, no grief without happiness.  You have to know one to know the other.   Someone very close to me does not know true grief.  She has protected herself from it all of her life, but as a result, she does not know true joy, either.  When my father died after a year of suffering, she was so surprised when she found me so wrought with grief.  She assumed that I would have been relieved.  I was relieved, but there was something very beautiful about releasing all that emotion that reminded me how important my father was to me.  I embrace moments of grief.  It reminds me of how rich my life really is.

5.     Faith is worth a try. I struggle with this.  I always have and probably always will.  But the more experiences I have, both good and bad, the more I open myself to the notion that this earthly life is not all that we will know.  I cannot define it and do not want to.  But whatever it is, it is comforting.

Voila!  You may find this little catalogue of ideas insightful or revolting, but please refer to #2.  It doesn’t matter.  I am happy with it!

Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, a wife and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy. 

Unprepared

Yesterday, Inspired Wining got some great publicity in the Huffington Post thanks to supporter, Sheila Moeschen of HerSelf First.  I have to admit that I was on a high from the unexpected accolades and the hopes that Sheila's lauding will yield some new fans and supporters and will help us continue to grow and reach women all across the country.

My oldest son, Owen quickly sobered me up tonight when he asked if you could die from Duchenne.

I was watching a video about Charley's Fund, another organization who funds research for DMD.  Owen walked up and asked what I was watching.  After I told him it was a video about Duchenne, he blasts me with his question and I was totally unprepared.

I answered yes, you can die from Duchenne and explained as best I could why this was so.  Then, he asked if Matthew was going to die.  I think I said “Maybe.”  Owen said he hoped not.

Maybe?  Maybe?  I couldn't do any better than that?  I have been waiting for Owen to ask about Matthew's condition for years and finally it happens and I botch it.  This was not how I envisioned this going.  We were to be looking eye to eye, not at a computer screen.  My daughter was not supposed to be screaming for me in the background.  This was such an important moment and I come up with “Maybe.”

So he leaves, I cry and a few minutes later track him down in the bathroom and remind him that the races that we host every year are helping make Matthew better.  He nods eagerly and escapes.  After reading in bed, I ask Owen if he has any questions about Duchenne and he is quick to say no.  I lost my moment.

Right now, I feel broken.  Not only because I didn't react the way I had always planned, but because on the heels of a wave of a lot of positive movement, including Matthew's first participation in a clinical trial, a recent Inspired Wining launch in Charlotte and the new publicity, I am reminded that this isn't just about momentum and progress.  It is most of all about that little boy in the next room who has all of our hearts and is fighting the greatest fight there is and he doesn't even know it.

Ironically, I welcome this ache.  It is life-saving and healthy to be hopeful, but a little shot of reality is good, too.  I certainly never forgot the reason for all of our efforts, but I am refocused.  I imagine that just like in all parts of life, the scales will tip from time to time.  The cause will come calling again, but right now, I am going to concentrate on the peace that resonates from the three amazing creatures that sleep soundly down the hall.

Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy. 

Meet Mackenzie

Four years ago I learned that I was going to have a baby girl. After life with two loud, rambunctious boys, I rather looked forward to a peaceful existence with my daughter.

How naive of me.

The day before my birthday, this new creature entered the world with a mohawk.  After a bit of debate, we settled on the name Mackenzie for this seemed to mirror the spunk of her hairdo.  This name still suits her.

Let me try to explain the phenomenon of Mackenzie.  She has never had much use for baby dolls and barbies, but loves a dress, a pair of tights and “fancy shoes”.  She can wield a light saber as well as any boy and will go on and on about Darth Maul, Darth Sidious and Darth Vader.  (Please note that these are all villains.)  In fact, when playing with her brothers, she names herself “Princess Darth Leia."  That about sums it up.

My sassy girl - as sassy as they get.

She is more independent than I could have ever imagined a person of that size ever being.  She manages to do and get whatever she wants, whenever she wants, not to mention go wherever she wants – down the street, in the neighbor's house, out the store and into the parking lot (with unpaid merchandise).  She doesn't whine, she demands.  She throws, spits, yells and slams doors.  We are all “poo poos.”

We keep soap in the car and a syringe of vinegar in the kitchen.  Her bedroom door sticks, which makes for complete confinement in time-out.  We have spanked, slapped, screamed, threatened  and ignored.  There is no reeling her in.

Of course, I could not live without this little tornado in my life.  When she is not demanding and screaming, she is singing dreamily, laughing heartily and talking a mile a minute.  She is forever telling me she loves me and gushes over how we are both girls. She is confident, smart, full of life and forever entertaining.  I would not wish away any of these qualities which will make her a strong woman, but I just hope I can survive it. 

If you have any similar stories, advice or an escape plan, please share!

Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy. 

Injection of hope

It is amazing how quickly my moods can swing.  One minute I am crying on the phone to my husband, wracked with fear and ten minutes later I am feeling in control and rather elated.  The irony is that the same event caused these two very different reactions.

I just returned from a three day visit with Matthew to Cincinnati, where he sees a team of specialists on an annual basis at an MD clinic.  An added reason for the trip is that Bobby and I enrolled him in a clinical trial for a growth hormone study for linear growth and potential muscle strengthening for boys with DMD.

Matthew was selected to be in the test group. 

Of course, I knew that there was a 50/50 chance of this and in my heart of hearts was prepared for this, but if I have to be honest, I was hoping that he would be in the control group.  I am not particularly proud of this.  I knew I should be wanting to provide my child with all the opportunities possible for better physical health, but the idea of putting a needle in my innocent boy, every day for 6 months, seemed to steer me away from the big picture.  

So after the “shock” that should not have been a shock and after my moment of weakness, we headed to see the nurse who was to show me how to wield a needle.  I should not have been surprised when Matthew showed more curiosity about the process than concern about the potential pain.  He let me poke him (over and over, in fact) and as I learned the procedure, suddenly two things occurred to me.

One – I am not the patient.  This is not all about me and if my child, the actual patient, is not concerned, than I need to be strong for him and get the job done.

Two – Finally!  After years of feeling helpless in the wake of my son's diagnosis, I can actually be part of the treatment process.  I can personally give him what may result in added strength.

We agreed to have Matthew participate in this study because we wanted to help further research.  This trip reminded me of how humbling it is to know that there are people out there who have a passion for   helping boys like Matthew and have made a career out of this passion.  I feel nothing but great fortune for the opportunities that have been placed before us.  Hope abounds and life is good!

Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy.