Little's Life

Little's Life

Thursday, May 17, 2012

How to Refrain From Punching Someone in the Throat

A few weeks ago, I was at the pharmacy in the basement of the hospital in the children's area where they have a mat and 3 (yes, only 3) toys for the kids waiting on prescriptions. Knowing that strep is going around here right now and not being ignorant to the fact that most people in a pharmacy are there bc they are sick, I grabbed a baby wipe out of my purse and gave the table type toy a wipe down before I let Andrew play with/on it. A lady in there turned to me and said, "I'm a school teacher and I can tell you that the more germs they are exposed to, the better off they actually are." I didn't react well (shocker). I know that in theory, she is right, but strep?  I don't think my 2 year old needs strep throat to survive kindergarten.  Anyway, without any hesitation AT ALL, I bit her head off.  She actually backed away from me, picked up her purse and child and left the room.  Never mind what exactly I said, the words weren't even that bad (I didn't call her any dirty names or cuss at her) but my tone of voice and expression were vile enough to send her packing.  I mean I just attacked.  It was like a knee jerk reaction.  Apparently I turn into a rabid honey badger when someone dares tell me they know best for my son.

Obviously she had no idea that Little has Duchenne.  I'm sure she thought she was doing me a favor by telling me that kids need to be exposed to germs to build up their immune systems, although I am not a total moron and so already know this and her tone of voice was a bit haughty.  Even if she had been sugary sweet, I shouldn't have hissed at her.  As soon as she left the room, I realized what I had done and was pretty ashamed of myself.  I hated that I immediately launched into anger without a second of hesitation.   That is not at all how the Lord wants me to act.  That's not how I want me to act!  God doesn't want me to lash out like that and I hate that it just flew out of me like it was second nature.  I sat in the pharmacy and prayed for patience and tolerance while Little played on the germ free toy table.  I asked the Lord to give me a pause before I answer people who don't know about my son so I can take a breath and think about my reply instead of instantly jumping into defense mode.  Then I realized that everyone else in the room had heard and called all of their children over to them, so I quickly blurted out "he's not contagious!!" so they wouldn't freak out.  And yes, I know that would be funnier if you knew what I had said to Presumptuous Teacher, so you'll just have to trust me, it was funny.  

Once at a playground, another mother there asked me how old Little was when she noticed the way he waddles. After I said he was 2, I could see the shock in her face.  Then I got to hear the shock as it shot out her mouth when she blurted "And he can't walk yet?!".  This was about 6 weeks ago, so he'd only been walking for about 4.5 months plus the ground was covered in those rubber pellets and even I have trouble walking normally on them.  I half smiled and told her that he has DMD and it affects his physical movements.  She asked me to explain further, so I did.  I hate explaining it to unprepared strangers.  It means I have to watch their hearts break.  Try as you might, but when someone tells you that the beautiful little boy in front of you is going to waste away and die and there's nothing you can do about it, you can't stop the chain of expressions that will roll across your face. 1st is confusion

2nd is shock

3rd is heartbreak (sometimes there are even tears)

then 4th is confusion again as you try and figure out what you are supposed to do/say/react.  

**Newsflash - there is no correct response.  But there are responses that are better than others.  For example, "Oh........I am so sorry.  Is there somewhere I can donate to help find a cure?" is better than "OH MY GAWD!  That's so awful!  I would die! I would just die!!!!!"  This particular Park Mom had a good one.  She went through the Expression Train and then ended with a nod and a firm "Well, we are all blessed in our own way".  Then it was my turn to show shock.  That was the best reaction I've ever had.  The very first positive response I've received.  It was rather refreshing.  

So, as you can see, this is just something I have to get used to - this staring, this confusion, this diarrhea of the mouth from strangers.    So i can't lose my cool every time someone offers me unsolicited advice.  But i also know myself and know that I cannot be Pollyanna every single time someone shows me their ignorance of DMD.  Remember, I was ignorant to it myself until August last year.  And it's OK that they don't know!  They are BLESSED not to have to know the beast that is Duchenne.  I am thankful that people ask about Duchenne, that they want to educate themselves on it, but it is hard.  It is so hard to shatter their world for a few minutes when they learn the future this disease has in store for such a sweet, lovable little guy.

I asked a group of DMD moms how they keep their cool with certain folks and how they deal with having to tell people that yes, this is fatal over and over again.  One mom had a great idea - she printed up and carries around little business cards so that she can just smile, hand one over, and walk away.  How perfect is that for me?  Those of you who know me in real life are nodding your heads right now, aren't you?  

Well I made some up and now have a stack of them in my purse.  I have a feeling they will save me from a few simple assault charges in the future.

It gets out whatever point I want to make.  It can be "so there!" to the next Presumptuous Teacher, it can be a genuine "thank you for asking" when I just can't take watching someone fall apart, or it can be a "Hey, I noticed you staring" call out.  Plus, it lets you know how to educate yourself further if you choose, and where you can donate to change the future for Little and all the other DMDers out there.  Tells you what you need to know without verbally punching you in the teeth.  I encourage all of you parents of special needs kids to think about doing this - sometimes we're just too tired to deal or have too much trouble biting our tongues so maybe think about letting a handy little printout do the job for you.  In fact, if you want to copy mine word for word, that's fine by me.  Anything to make your day easier.

So, hopefully next time I find myself in of those situations, I'll get that Pause I asked God for and remember that I can just reach into my purse and hand them this little green card.

Today's Little League member:  COLTON K.  

Look at those muscles!!!!!!!!  Go, Colton!  We are so thankful to have your support!

********EDITED TO ADD YOU CAN READ PART 2 HERE! *****************


  1. As a mother of a 5 year old with Duchenne, I can understand frustration with encountering curious strangers who may question the physical appearance or what we do for our sons.

    However, I think that part of the issue here may be your approach to the strangers and the disease. I think that a simple approach is best.

    "He has immunity issues, but thanks for your input/concern."

    "He has difficulty walking due to Muscular Dystrophy."

    I don't know that you have to share with every stranger that the disease is fatal. Because it sounds like you are going through the grief process all over again with them when you share. If they are curious once they go home, they can look it up.

    I think that if you stop telling strangers that it is a death sentence, it might improve your mood about talking to strangers in general.

    Believe me, I get it. For about a month after our son was diagnosed I was pissed off at the world. I was hurt by the diagnosis and wanted everyone to know how hurt I was. But then life went back to our "normal" filled with physical, occupational and speech therapies, MDA appointments and all that goes with having a child with DMD.

    I would encourage you to stop handing out the cards, at least how they are currently worded, or redesign them to say something simple and positive.

    Finally, you mentioned that you are a Christian who prays. I would encourage you to pray for a positive lining to this disease. You have your child and all that goes with him for now. Pray for God to touch your heart to see this in the most positive light possible and see what you need to learn from this experience.

  2. I appreciate your comment. I know that you do not know me and all you have to go by is what I type into this blog, and so have only a glimpse into who I am. I don't share with every stranger that it is a death sentence. I say that he has Duchenne Muscular Dystrophy and only elaborate if the stranger asks me to - and even then, I stop at a simple explanation. It is only when they ask me if he will outgrow it or how we treat it that I tell them it is fatal.

    Yes, it is printed on the card that way - but I did that for effect. Think about it; if someone handed you a card that said "thanks for your curiosity, my child has Mystery Syndrome You've Never Heard of" and that was it, would you go home and google it? Would you be compelled to give to an organization dedicated to finding a cure for it? Would you even give it a second thought? I want to use those moments as teaching moments. Maybe, just maybe someone I hand that card to will be shocked into action or realize that they shouldn't judge a situation so quickly. I don't want a card that spins Duchenne into something positive bc I don't believe that will nudge anyone into learning more. I made the choice to use the wording that I did on purpose.

    And yes, I pray. BOY do I pray!! :) I have prayed for exactly what you suggested and will continue to do so. Thanks so much for reading, and God bless!

    1. As a mother of a 17 year old with Duchenne, I agree with the shock approach!! I have certainly realized over the years that everyone handles the situation differently. Before Cameron was in a wheelchair I had many situations that caused for me to have a...anger check!!...I wish I had thought of a card!! Some were as simple as him at 8 being carried into a diner after church and a grown man saying to him.."hey aren't you a little to old to be carried around" We just smiled. His wife took care of it when she punched him in the arm and started whispering in his ear! She knew about Cameron he didn't. I actually felt bad for him. Then there was the time we went to the pediatricians office and as the "dr" came in I helped Cameron off the floor and put him on the exam table. Dr's respone.."your too big for your mom to pick you up". After taking the chart from him then going to the front desk to get a RED pen..I marked in big letters on the front of Cameron's chart..DMD..gave it back to the dr. and told him to read it!, learn about it! and NEVER forget it!!I mean really..know your patients!! Could I have handled it better, maybe. But it felt right at the time.
      And it is really hard to answer questions. Sometimes your response depends on how that day went. When someone asks how is Cameron doing, I mentally think to they really want the truth or is this the time that I smile and say "he is doing good" as my mind screams..he is dying!!!!! but just not today.
      And prayer...lot's and lot's of prayer!! It took me a long time to get to where I am today. And we all will still struggle. But sharing with each other as we are now will help. We don't always have to agree or handle it the same. We are at different "stages" at different times. Maybe today your doing good and I am doing bad..but tomorrow I am doing good and your doing bad..that's why we have prayer for each other, our son's and our families.
      Take care and God bless!

    2. Thank you, Stephanie! I'll certainly pray for you and Cameron!

  3. I *do* *know* you, Kathrine, and we all slip.

    A. I'm not a germphobe by a LONG SHOT, but at the dr. or hospital (ya know where SICK kids go) I'm not above sanitizer and washing DD's hands ASAP. That woman *was* in the wrong IMO.

    B. The other woman's response was the best, brought tears to my eyes, and God bless her for having and sharing that outlook with a complete stranger.

    C. Your praying heart has been your biggest strength through this journey.

  4. First, haven't you ever heard to NOT pray for patience? LOL? You just might be given more instances where you will need it!

    I'm a southern girl and tend to be on the friendly, chatty side. I am also mom to 10 year old asian daughter who we adopted when she was 6 I'm VERY familiar with complete strangers jumping into my business with unsolicited comments.

    By nature, I believe all human intentions are good. I know, my husband tells me all the time how flawed MY thinking Anyway, I just have a hard time believing everyone has bad/evil/mean intentions so I tend to give everyone the benefit of the doubt unless I judge the comment to be a racial slur ON PURPOSE. Especially now that my Lilly is now 10. (I would let it slide when she didn't understand, and would try to educate the person i.e., people are asian, objects are oriental).

    All of this can go to hell in a handbasket if I'm having a bad day...and God knows we all have our share of those. Don't be so hard on yourself.

  5. Right?! lol When I will learn? ;)

    I can't help but feel disappointed when I act that way. I know God knows that we have rough days, but that doesn't give us a free pass. He wants us to turn the other cheek, so I'll keep praying for the ability to do that....while hoping He knows that I'm not praying for another circumstance where I need to!

  6. Katherine, I can find nothing wrong with anything you wrote. In fact, you have helped alot of people. I can tell you for certain, I will try to take some of this to make improvements with my temperment. It probably will not help. Taking my right as a father to protect my son from harm is really a horrible emotional nightmare. I am very angry at this disease. Not only for what is doing to my first born son, but what it will do to his younger brother who is healthy. I often wonder if I have done something to deserve this, considering the best way to hurt someone is go after their child. I just don't know. I don't judge people, but I don't understand those who can take this with a smile or find anything positive from it. I will love my child the best I can, but I know someday soon, I will be engulfed in a hellish nightmare of watching his tears roll down his face while he is helpless to wipe them. Bigger than anything, is my loss of faith. I am so sick of people praying for me. First, God has nothing to do with this. Good or bad, he is either not there, or just not involved. I try to hold onto a glimpse of hope that I will see my family again and he will take my son in open arms, but that is very similar to holding on hope that Santa is making toys in the North Pole. Hard to tell which is more believable at this point. So for those who want to give me hope and prayer, thanks but just remember, it isn't going to save our kids. I can't wait for all the judgemental responses to this from the good Christians out there. Just remember, we all take things differently.

  7. I am so sorry that you are in so much pain. It's always hard to see (or in the blog world, "read of") someone who is having such a difficult time finding a few rays of light through the heavy darkness that DMD brings with it. It is ok to be angry and it is normal to be lost for a while. I hate that you are experiencing a "loss of faith" and feel that God isn't there, involved, or is no more plausible than Santa Clause. You are right that we all take things differently. We all lean on different things, people, or beliefs. For me, my faith in God in the one thing that is making life with this disease bearable. Knowing that He will get my son through this and one day take away his pain and make him whole again gives me the strength to face each day, with whatever DMD brings. Isaiah 40:31 tells us that "those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint". That verse just recharges my soul every time I read it. I know you said you are sick of people praying for you, but maybe give it a chance for a while? Instead of fighting it, just co exist with the prayers? Maybe you can end up opening yourself up to God and letting him take some of your burden? Your son's life will be difficult, no doubt, but you can make such a difference in his quality of life with your attitude, faith, and outlook. I hope that one day you can come to a place where there is less turmoil in your soul and you can find your way back to Him. I'll be cheering you on the whole way! No judgement from me, though - and I hope I didn't come off that way. I completely get the anger, the unjustness. You feel what you feel and no one can talk you in or out of it. Just know that there are people out there in cyberland (and I am betting in your real life, too) who are there for you with open arms when you are ready.

  8. So I've had some time to step away from this and come back. Check out Part 2 -