Guest Post – Margie Webb: I Am A Loser

My friend Margie is one of the most inspiring people I know. To say that she has taken charge of her life would be an understatement. Over the last few years, she has tackled the various areas of her life, improved them and transformed them. Today, she writes about her journey toward better health. Read on, and prepare to be inspired.

Nov 2013, March 2014 & September 2014

Nov 2013, March 2014 & September 2014

My weight is going to kill me.

I knew this at the exact moment that the nurse had to take my blood pressure twice because she was concerned about the initial high reading. While I wanted to believe that it was her ineffective bedside manner because I know that my fat arms require the larger cuff, the fact that I knew I even needed the larger cuff DUE to fat arms was the moment that I had to accept my fate. My downhill march to death has started and I have nobody to blame but myself.

Granted, I hope that it doesn’t happen today, or tomorrow, or anytime in the near future, but eventually, if I don’t get healthy, my weight will kill me. Admit it, you never see elderly fat people just kicked back, living it up at the Senior Center. That’s because by the time you hit middle age, if you are obese, the health problems start to wear down your body and organs.

That’s blunt but it’s the truth. If you are reading this, are of a certain age and more than 100 pounds overweight, then you probably already know what I know: the life expectancy for a morbidly obese person who is past 40 years old is decreased by up to ten years. (

I am 41 years old, a middle class Caucasian female, and I am trying to save my life. Earlier this year, I topped the scales at over 300 pounds. Looking back at pictures from that time is very painful because I can see the unhappiness in my eyes. Physically, I was at my highest weight and my body felt it in various ways. My struggle with my weight is the same story that my generation of women share: we came of age with mothers who learned in their 1960ish teenage years to fad diet their body images onto us. Then, the internet came along, which solidified the “skinny is perfection” belief, and as we have children, we are passing along that message. It’s a vicious cycle with serious consequences for our society’s future.

Every woman that I know is an expert in picking her body image to shreds and always, ALWAYS, believing that she needs to lose this much or just a little more and she will be perfect happy. Our society regularly rams this message down our throats and millions of us are the reason that the diet industry is a $20 billion dollar business. Twenty billion! ( That’s how much we have been brainwashed that quick-and-easy is the only fix.

In high school, I was a size 8 and you could actually see my collarbones. And. I. Thought. I. Was. Fat. That memory makes me laugh hysterically now because if I ONLY KNEW what was coming for me. But, I was told I was fat and I believed it to be true. I never much watched what I ate or exercised. Once I got in to my 20’s, started having children, and continued eating processed foods, my weight began to climb.

And yes, I succumbed to the diet schemes and again, like many women, I have a list of them that I tried. Oh and I would be successful with them too. That is, until I stopped taking the pills, or ate carbs again, or stopped howling at the moon at midnight, or whatever the tricks of that particular weight loss plan. Then, I would not only gain back what I lost, but I would add more pounds to the total. As I grew older, the weight started to affect my health.

At 40 years old, I was diagnosed with diabetes and high blood pressure. These are solely because I am overweight and I am overweight for two main reasons: I did not eat healthy and I never regularly exercised. That’s it. That, gentle reader, is the simple truth about struggling with weight issues. Outside of weight loss surgery, which I am against for opinions all my own, no diet or pill is going to help you successfully lose weight and maintain the loss.

This is a growing epidemic in our culture as our population continues to rely less on fresh, clean food and more on processed and fast food. We all know the statistics and that our culture is driven increasingly by the quick result. That’s a huge reason why so many people, like me, have been unsuccessful in their weight loss attempts. It’s all good those first few weeks but when you don’t lose 200 pounds at once, many have the tendency to quit.

I have worked for many things in my life, finishing my college degree as a working, older mother, being chief among them, but nothing, and I mean, NOTHING, has been as hard as losing weight. I started my wellness journey last January with a goal of eating less crap and moving my body more. Vowing to not use any diet tricks (and sad to say, I did get weak once and spent 14 days hating myself on Advocare), I started a journal and created a Facebook group just for women like myself. The name of the group is Losers, because that’s what we all want to be.

Here I am almost a year later and 54 pounds lighter. No, I am not even halfway to my goal weight and there have many bumps along the way. But, I have made changes and am baby stepping my way to a longer life. I credit the support that I surrounded myself with and the mindset that this is going to take a long time.

And yes, it’s going to take a long time. It just is, there is no way around that fact. But, it’s worth it: for yourself, for your family, for the sustainability of our society.

Are you ready to save your life?

Margie can be found on Twitter @thehunnyb and on Facebook under Margie Webb. If interested in joining her Losers support group, she can be reached at either. Photo credit to the author.


Courage Under Fire: Perspectives Of An Israeli Mother

Not long ago, on a really bad day, I told someone that parenting a child with autism was like living in a war zone. When I look at what’s going on in the world around me, I realize that that is a ridiculous and insensitive comparison. I mean, I have the privilege of living in Canada – one of the richest places in the world, a country teeming with opportunity, that truly believes in peace and human rights. There are people who are parenting their children in actual war zones, like my friend and fellow writer Susie Newday. She lives in Israel, and she has graciously agreed to share her perspectives here on my humble blog. Please read, and share, because this is a story that really needs to be told.

courageisfireSometimes I manage an unplanned escape from the reality around me. I manage to forget about the reality in which air raid sirens are going off and depending where you live in the country you have between 15-90 seconds to get to a safe room or a bomb shelter before a rocket might hit. Most of the time we’re lucky, the Iron Dome Missile Defense System blasts the rockets in mid-air and all that’s left to worry about is shrapnel. Not that shrapnel is safe, it was deadly enough to kill a Thai worker today.

I’m one of the lucky ones. I’m not an old person who can’t run to shelter. I’m not a parent of a special needs child who has a hard time coping with change. I don’t live in the south where there has been a massive barrage after barrage of rockets. There, a whole decade of children have grown up with unexpected yet consistent rocket attacks, even after Israel displaced 10,000 Israeli citizens in 2005 and withdrew from Gaza.

Like many people in Israel, we didn’t really understand what our fellow citizens from the south were living through, until the rockets starting raining down on Tel Aviv, Jerusalem, Herzilia, Haifa and many more cities. Just imagine New York City, Paris, London or Ottawa being fired upon with even one rocket, let alone multiple non stop rockets. Would the governments of any of those countries go even one day without trying to wipe out the terrorists responsible? I think not. But for years Israel has not responded, because we don’t want to go to war.

In less than a month, there have been over 2000 rockets fired at Israel from Gaza by Hamas terrorists. Terrorists who hate us more than they love their children. They shoot the rockets from schools and hospitals while their children watch and are being unwittingly used as human shields. They build extensive tunnels originating under mosques, schools and residential buildings. Tunnels that cross underground into Israel with openings right near playgrounds and houses. Tunnels that have been used for terror attacks.

It’s odd how in just two weeks time, sirens and running for shelter or crouching on the ground with your hands over your head, have become routine for me, even when a rocket, not shrapnel lands less than a ten minute drive away. Because I have the luxury of 60-90 seconds to find shelter, when a siren goes off, I am not in a hurry or panic, the way the citizens of the south are.

“I was shaking from fear.” my 8 year old daughter told me about her first experience with a siren. They were rushed by their counselor in summer camp into a safe room and read psalms together.

She started refusing to go upstairs by herself because “what happens if there is a siren.”

And when we finally convinced her it was okay, while she was taking a bath one evening, the siren went off and my husband ran to yank her out of her bath and run with her to our safe room. As soon as we closed the door there were a few loud booms. You are supposed to stay in the safe room/shelter for 10 minutes. We waited impatiently, everyone checking their cell phones for news hoping that there were no casualties or damage. Then my husband remembered that he forgot to shut off the bathtub and he went upstairs to close the water.

And I wonder what kind of world we live in that I need to have a special concrete and metal fortified safe room.

Sometimes when the TV and radio are off and I’m not on Facebook, I can forget the collective unbearable pain of my country and its citizens. So far my heart has stopped 32 times, with the announcement of the death of each soldier.

My second son is in an elite urban warfare combat unit as is my nephew. My other nephew is in a tank in Gaza. But even if my son and nephews weren’t soldiers, the pain would be no less unbearable. I cry for the loss of tomorrow, for the future that will never be. I cry for the over 150 soldiers who have been injured and for the families who will never be the same. I cry for the innocent civilians on both sides who are being injured and killed because of extremist Islamic radicals who only know hate. They don’t care about their own people, all they care about is killing Jews and wiping the State of Israel off the map.

When the television and radio are turned off I can sometimes pretend that I’m not living in limbo and uncertainty. When the sirens don’t go off at work and I don’t have to round up my oncology patients hooked up to their IV chemotherapy and escort them to a safe room, I can sometimes forget the reality that I’m living in a tiny country hated so much by so many. The only democratic country being condemned over and over by people who claim they are pro human rights. As Hillel Neuer, Executive Director of UN Watch said on July 15, 2014:

“If in the past year you didn’t CRY OUT when thousands of protesters were killed and injured by Turkey, Egypt and Libya, when more victims than ever were hanged by Iran, women and children in Afghanistan were bombed, whole communities were massacred in South Sudan, 1800 Palestinians were starved and murdered by Assad in Syria, hundreds in Pakistan were killed by jihadist terror attacks, 10,000 Iraqis were killed by terrorists, villagers were slaughtered in Nigeria, but you ONLY cry out for GAZA, then you are not pro HUMAN RIGHTS, you are only ANTI-ISRAEL.”

And he is right. As Dennis Prager said: “As hard as it is for modern, rational and irreligious people to accept, Israel’s Jewishness is a primary reason for the hatred of it. ”

Yet even with all the pain and uncertainty and fear, I feel proud. Proud to be an Israeli, proud of my sons, daughters and countrymen. I am proud of the ethical and compassionate army we have, the only army in the world who puts their our own soldiers’ safety at risk in order to minimize civilian casualties. The only army that spends days warning civilians to evacuate, dropping leaflets in Arabic and making phone calls. They do all this at the expense of tactical surprise. Bombing strikes are called off when there are civilians in the vicinity, called off leaving the units on the ground with less support than they should have.

I want evil wiped out. I want peace, real peace, not one sided concessions. I want to be able to raise my children in security and without fear. And sadly it seems like a far fetched dream. If someone hates you for your religion or country, how will they ever see past that hate to get to know you as a person? How will they ever see that you are a mother or father like they are?

I pray in my heart that one person at a time can bring about change. I pray that one connection at a time with people different than myself will bring about an ever growing ripple that can and will change the tide of hate and war.

I pray for the day when no nation will want to go to war against another because we will all live in peace.

Susie Newday is a happily married mother of 5. Born in the USA, she moved to Israel at age 21 when she was pregnant with her second child. By profession she is an RN, and now works in outpatient oncology after 15 years as an ER nurse. For fun she loves to take photos, write, drive people crazy on Facebook and of course to write. You can find her musings in many places including on her blog New Day New Lesson as well as World Moms Blog.


Guest Post: You Never Know What Their Quirks Will Become

Today’s post started life as an email that my friend Jacquie sent to the autism parenting group that we both belong to.

Jacquie is the mom of two boys, aged 8 and 16, who both have special needs.

Her older son, Eric, has autism. He has his challenges, but as you will see in this post, he is finding his way in the world. I will not say any more – I will let you read for yourself.

8-year-old Justin has RAD (reactive attachment disorder), autism and intellectual delay. He is one of those unreasonably good-looking kids who you just know will be making girls swoon as soon as he (and the girls) hit puberty.

And Jacquie? Well, she’s just a fabulous friend and a fantastic mom. I am immensely grateful to her for allowing me to share this story of Eric. To special needs parents like myself, this is really a story of hope.

Without further ado… over to Jacquie.




When Eric was a baby, the only way you could soothe him was singing.

When Eric was a toddler, he used to stand in the windowsill of his bedroom’s gigantic window and listen to a cassette of kid’s songs sung by kids over and over.  When the tape ended, he would scream until someone came and turned it over and pressed ‘play’ again.  Then he’d scream until we got the hell out of the room.

When Eric was a preschooler, he’d sit in front of Windows Media Player and watch the visualizations you could choose to go along with the music that was playing.  He’s spend hours just watching these graphics move and change with the music.  God forbid you try to distract him.

When Eric was in kindergarten, he developed a musical crush on Shania Twain.  I still shudder to think of that year.

When Eric was in grade school, he started to make music using free music programs like garage band.  It was awful.  I didn’t have the heart to tell him he sucked.

When Eric got to high school, he asked for a professional-grade music-editing software suite, so we gave him that for Christmas. Subsequently we began seeing him only for meals and The Big Bang Theory.

When Eric had a little experience with production, he asked for a Mac, which has superior music production capabilities.  He was taking guitar lessons, piano lessons, and music classes at school, so we thought it was probably worth it.  Subsequently we began seeing him only for meals.  There are days’ worth of The Big Bang Theory episodes on the PVR that have never been watched.

When Eric was a week younger than he is right now, a Danish music promoter contacted him and, based on the free content Eric has put out on music sites and on the the contests he has won with his compositions, offered him a 6 month contract.

When Eric was 12 hours younger than he is right now, we signed.  Eric is now represented by a dance music label in Denmark.

His songs will go up for sale on iTunes, Spotify, Juno, and Amazon.  This company will help him design his logo, refine his sound, and establish a presence in the market.

When Eric was a little boy, we mourned the way music took him away from the world.  Now he’s bringing his music to the world.

(Photo used with permission of Jacquie VonHunnius).


Guest Post: Surviving Post-Adoption Depression

Today is Guest Post Swap Day at the Health Activist Writer’s Month Challenge! I am delighted to have been paired with Becky, who looks at the world of adoption from a different vantage point to me. I am an adoptee, and Becky is the mom of adoptees. In her blog, Lessons from an Infertile Social Worker, she writes about her journey to motherhood and her life as a parent. Today, she shares an aspect of adoption that really needs to be given some attention.

family fall pic

When I think about adoption, there is so much to say; I find it difficult to narrow down the topic.  Do I talk about how we came to the decision that the way our family would grow was through adoption? Do I share my journey to breastfeeding my two sons, both of whom we adopted? Do I discuss open adoption, why we chose it, and the challenges and blessings it has afforded me? Do I educate about proper adoption language? Do I ponder how adoption has changed my parenting philosophies? There are so many possibilities.

In my professional life, I’ve talked with hundreds of pregnant women and new mommies about postpartum depression, the feelings, the red flags, how to recognize it in themselves, how others around them could recognize it and be supportive, what can help, etc… I could assess whether a new mommy was experiencing symptoms, and I could diagnose it. I knew how to talk to her about it, and what resources to point her towards. What I never knew was that it was something I could experience. I’d told women for years that a big part of postpartum depression was their out-of-whack hormones. I knew that I wouldn’t have to deal with that thanks to adoption. I was wrong. I did experience it, even without the hormones to blame.

I can’t imagine any child being more wanted than my son. We tried for years to get pregnant and I was thrilled beyond belief when we were chosen by his birth family. I was thrilled to take him home, to put him in his bed, to cuddle him, to nurse him, to rock him, to read to him… But somewhere along the way things changed. Really, it may be more accurate to say that things didn’t change, at least not how I thought they should and would.

I told moms all the time that “over half of new parents don’t fall head over heels in love with their babies right away. You didn’t experience love at first sight with your partner, so why should you expect it with your baby. It takes a while to get to know one another. It will come in time. Don’t feel guilty if it doesn’t happen immediately, but don’t doubt that it will come”. I never even considered the possibility that I wouldn’t experience that all-consuming love for my baby immediately – I wouldn’t have the hormones going crazy, we were prepared, we were ready, we knew what we were doing, we wanted him so much.

I stayed home with him for about 8-9 weeks after he was born. Though hubby shared nighttime duty with me, I was taking 2 graduate level classes and I was still exhausted. In truth, I was at times a little jealous that hubby got to leave during the day (not to mention got to shower and brush his teeth before 3pm). I was rocking the baby one afternoon – it had been a difficult day for me and the 4 week old – when hubby came in from a great day at work. He leaned over the side of the rocking chair and tenderly said, “I never thought I could love anyone as much as I love you, but I sure love this little guy a lot”. I could see he had tears in his eyes though I couldn’t bring myself to really look at him. Because all that was running through my mind was, “well big deal for you. How wonderful for you to get to feel that way?!!!”. All I said out loud was “yeah”.

I was furious. At the time I thought I was angry with him, but I realize now I was angry with myself. Angry that I didn’t feel that way about our son, the baby I had so longed for, the baby I had waited and prayed about for years. Angry that hubby got to feel that way first.  Angry that I hadn’t yet brushed my teeth that day.

But mostly I felt guilt. Guilt that this child deserved all-encompassing love that I wasn’t sure I could give to him. Guilt that I was angry which surely he could sense. Guilt that by not feeling that intense bond and attachment he would be permanently scarred. Guilt that obviously I wasn’t worthy to be a mother, which was maybe why God hadn’t *let* us get pregnant. Guilt. Dark, ugly guilt.

I don’t know when my love for my son became “big”, though I do remember when I realized that it had. When he was about 4 months old, we both had a nasty stomach virus. He vomited in hubby’s mouth (I know, gross, but I warned hubby not to play rough with a baby who had been puking all day) and I thought, “You show him, kid”. I realized we were a duo then, this adorable baby and I, we had something that was just between the two of us, and it was strong and intense. We had that bond. I hadn’t completely failed.

It took me a long time to recognize myself what I was experiencing after my son was born, and quite a bit longer to admit to it to anyone. I’ve now read research and talked with other parents through adoption and I know I’m not the only one to experience post adoption depression. I still carry some guilt about it, but I realize it’s nothing I can change. I also know I have the most awesome son with whom I now have an intensely strong bond. I know he wasn’t harmed by the natural progression of our relationship. I’m trying to forgive myself, which I know is silly because, as I would tell any of the hundreds of mommies I worked with, it wasn’t my fault.

Post adoption depression is real and it is no more a mother’s fault than postpartum depression. It’s not something to be ashamed of and it isn’t a dirty little secret. And, just like postpartum depression, it’s something we need to talk about so that no one else has to feel guilty or alone.


Guest Post: If I Look so Healthy, Why do I Feel so Rotten?

I met Simona Rinfreschi through the World Moms Blog community, and it quickly became apparent that we had a lot in common. We share many character traits and have had similar life experiences, and there is a good possibility that our paths crossed over twenty years ago when we both attended the same university, majoring in the same subject. As I’ve gotten to know Simona, she has shared with me some of her medical challenges, and she has graciously agreed to write a guest post for me today.

Isn’t it dreadful that, recently, I found myself praying that they would find something wrong with me?
I can see you shaking your heads.  Why on earth would you want an abnormal blood test result?  In my case, it’s simply because I’ve been battling severe pain and fatigue for 8 years already and so far nobody has really been able to help me!
My symptoms, combined with an absence of positive test results,has led to a diagnosis of Fibromyalgia. The medical dictionary definition of Fibromyalgia is:  ” a neurosensory disorder characterized by widespread muscle pain, joint stiffness, and fatigue. The condition is chronic (ongoing), but pain comes and goes and moves about the body. The disorder is often misdiagnosed or unrecognized and is often complicated by mood and anxiety disorders.”
I’ve encountered two main types of medical professionals so far, those who think that Fibromyalgia doesn’t really exist and is a psychosomatic manifestation of my clinical depression,
(Definition of psychosomatic:
1. Of or relating to a disorder having physical symptoms but originating from mental or emotional causes.
2. Relating to or concerned with the influence of the mind on the body, and the body on the mind, especially with respect to disease)
and those who are happy to have given me a “diagnosis” even if they have no clue how to help me!
I actually find myself getting angry when they tell me I’m depressed, because I’m actually not depressed right now!  I did go through severe episodes of clinical depression as a teen and young woman, as well as post-partum depression following the birth of my son.  That’s how I know that this pain and fatigue is not caused by depression! I can remember quite clearly how I felt when I was depressed and I don’t feel at all like that now!
Ironically, psychologically, I’ve never been better!  Around 3 years ago I was hospitalised for 4 weeks in a psychiatric hospital. There I learnt how to get out of the pit of depression once and for all!
In the last 8 years I have spent a small fortune on medicines, blood &  other diagnostic tests, alternative therapies, supplements and consultations with a wide array of “specialists” including 2 psychiatrists, all to no avail!
I now find myself with a dilemma.  Do I simply accept that I have to live with this pain and fatigue for the rest of my life, or do I keep fighting and searching for a way to feel better?
Depending on the kind of day I’m having, I’m either willing to keep searching or I tell myself that it is what it is, and leave it at that!
So, this is how I’m dealing with my Fibromyalgia at the moment:
  •  I’ve come off most of my chronic meds (under medical supervision) because (since they weren’t really helping) I thought I’d save myself some money!
  • I’ve sent my medical records to yet another doctor for review, because it is possible to have Fibromyalgia and something else too!
  • I focus every day on all the things that I am grateful for
  • I do my best to listen to my body and eat what I feel I need to, rest whenever I can etc.
  • Ensure I have a good laugh at least a couple of times a day (luckily I have an amazing family & friends with a great sense of humour to help me with that!)
Like everything else in life, the diagnosis of a chronic disease or disorder per se isn’t what counts.  What counts is how you choose to live with it.  I know a couple of Fibromyalgia sufferers who don’t work at all and who are all “woe is me”.  I’d rather laugh …  and have my friends and family laugh right along with me!
Do you suffer from a disease or disorder which makes you appear perfectly healthy even though you’re not?  How do you deal with the fact that you get accused of being “lazy” or “faking” it because people can’t see the pain you’re in?
This is an original guest post by Mamma Simona (a regular contributor to World Moms Blog) who is the proud mom of two terrific teens.  She also shares her Cape Town home with a super supportive husband, 2 cats and 2 dogs. For more of Simona’s most intimate and candid thoughts,  feel free to check out her alter ego, Phoenix, at
(Photo credit: Simona Rinfreschi)

Teen Series Part 5: Teenage Life

Over the last month or so, we have heard from three teenagers about how they think, what their dreams are, and what they want us “old” people to know about them. I am wrapping up the series the same way I started it: with South African teen Alex Zeeman. Today, she gives us a candid view of life as a teenager. Here are her words, uncut and unedited.

People think that the life of a teenager is easy, that we have no worries or, that we care not what the world thinks of us, that we’re unscathed by the world around us ……..

But the truth is that we, you, me and all the teens in the world feel, think and care what the world thinks of us.

Sure you get the rebels, people pleasers, the nerds, geeks and freaks, the jocks, athletes and bullies you get the popular and even little miss OR mister perfects …… people think that teen life is the PINICLE, the ABSOLUTE best stage in a humans life ……

But they forget, they forget what it was like to be mocked, bullied and ridiculed just because you had a higher IQ than those around you or what it was like to have no say in the way your life progressed or even what it was like to be everyone’s favorite, some may think that being popular is easy, sure for some it is, some thrive in the adoration of others …..

But to me, I personally think that “POPULARITY” is just too much hassle. Why you ask well, the answer is simple you always have to watch what you say you must walk this way, and wear that …… to be “PERFECT” to me means to basically be a robot, the way people look at you, talk to you and even interact with you dictates the way you look, act, speak, walk and even think ….. I mean teenage life is hard enough as it is why burden your-self with the added responsibility of being everybodys  favorite or by lashing out at people who just want to help you ….. There is too much in life that we have to worry about …. WHY ………

If every one tells us that we are kids, do we worry about what we’re going to be studying in 3, 4, 5 years we’re young but we act like were 40 ….. If we’re kids we should act like it we should have FUN, we should laugh and cry and do STUPID, STUPID things with our friends because the role of a child, of a teen is TO BE STUPID!!!!!

So if you want to be 20 when your 16 then act it, wear the shortest skirts you can find, sleep around with whomever looks at you the right way but DON’T get mad at the world when your decisions get you hurt, don’t lash out when you find yourself in a dark, dark hole with no escape because if you want to act older, then you should be able to face the problems, worries and stress of an older life ……..

Teens should be teens.

We are not children but neither are we adults so we either think like a child and so are usually categorized as such or we think like an adult and are categorized as such …… But we NEVER think as a teen you shouldn’t worry about the future ‘cause that’s what parents are for …. You shouldn’t worry about the past ‘because that’s what the dead are for ….. You shouldn’t even worry about the present ‘cause then you’ll never LIVE!!!!!

So think about what I wrote comment about it, and spread it ‘because it might not help you but maybe it’ll help someone else…….

Sincerely yours

(Photo credit: James Laurence Stewart. This picture has a creative commons attribution license.)


Guest Post: Living with Marfan Syndrome

When my friend Maya Brown-Zimmerman first said she had Marfan Syndrome, my first thought was, “Huh?” Marfan Syndrome is not something I had ever heard of. During National Health Blog Post month, I want to put a spotlight on some health conditions that affect other people – conditions that there may not be a lot of awareness of. Marfan Syndrome seemed like a good place to start, and I am delighted to introduce you to Maya, who tells about life as a “Marf”.

I’d like to thank Kirsten for the opportunity to share my story with you here today. She’s asked me to talk about Marfan syndrome and how it affects our family.

Marfan syndrome is a rare, life-threatening connective tissue disorder. Connective tissue is basically the glue that holds your body together, so most of the body can be affected, specifically the eyes, heart and aorta, lungs, skin, bones, and dura sac (which protects your spinal cord). The most dangerous aspect of Marfan syndrome is aortic aneurysms: weak bulges in the aorta that can tear, which is life-threatening.

Some signs of Marfan syndrome include a tall (in relation to your family) stature, being thin, having long fingers, disproportionately long arms and legs, scoliosis and kyphosis, lens dislocation, a concave or protruding chest, and stretch marks that appear in odd places, like the shoulder blades. There are not outward symptoms of aortic enlargement, so it’s very important to get a thorough scan of the heart valves and entire aorta via echocardiogram, MRI, or CT scan if Marfan syndrome is suspected.

I was diagnosed when I was 8 years old. My mother observed that I appeared physically unable to complete many gross motor tasks that other kids my age had mastered, like skipping or riding a bike. She took me to the pediatrician and told him she wasn’t leaving until he figured out what was wrong. Luckily for him (and me), he did! I’ll never forget him grabbing a tape measure and silently taking measurements, then standing back and saying solemnly: “I am so sorry. I should have realized this sooner,” before sending me off to have my diagnosis confirmed by a cardiologist and geneticist.

Marfan is a dominant disorder, meaning that I knew any children my husband and I would have, had a 50% chance of inheriting Marfan from me. Our oldest son, M, is not affected (though he does have autism), and our youngest son, J, has Marfan.

J and I are affected differently. He is almost 2 and by his age, I’d already had 3 abdominal surgeries. Thankfully, he is surgery free, but he has some mild leakage in his heart valves, asthma, and some GI issues. He also had global delays early on. Now he is only delayed in speech. He has mild dysphagia too, so we thicken all of his drinks. Although he will eventually have activity restrictions in order to protect his aorta and eyes, right now nothing holds J back! He climbs the furniture, chases his brother, and dances on the coffee table. He’s going to give me grey hairs, but I love his fiery spirit.

Growing up with Marfan syndrome was difficult for me. There was very little information available at the time and as I got older, I stood out from my peers more and more. I eventually connected with other “Marfs,” and have become very involved in the greater Marfan community (we refer to ourselves as the Marfamily). Currently I run the National Marfan Foundation’s teen program and am a member of their board of directors. While it took me until my teenage years to begin attending Marfan conferences and being involved with the Marfamily, J went to his first conference at 6 months of age. I’m involved with a tight-knit of Marfan moms of children J’s age, so he has a built-in group of Marfriends that he’ll grow up knowing. Since I was diagnosed, the life expectancy for people with Marfan has nearly doubled, such that with proper diagnosis and management it’s the same as the general population. It truly is a different world for J and his friends, and I am grateful and excited for that! I now view Marfan as a blessing in may ways, and I hope to pass on this outlook to my son.

If you have questions about Marfan syndrome or related disorders, please check out the National Marfan Foundation.

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and WebMD.

(Photo provided by Maya Brown-Zimmerman)



Teen Series Part 4: Time To Think

Three years ago, when I got fed up with being reliant on a transit system that kept raising its fares, I started car-pooling with a co-worker, Michelle. Through many commutes we shared laughs and stories, and became very close friends – so close that Michelle was my maid of honour. Because I am friends with Michelle, I have the pleasure of knowing her daughter, Megan, who is 16 years old. Today, Megan shares her brave and very compelling story with us. Here are her words, uncut and unedited.

My name’s Megan I am 16 years old and I live in London, Ontario. Seeing into the minds of people my age can be difficult for anyone who isn’t my age. My generation faces new problems, new social norms, and new expectations. The way teenagers thought 30 years ago isn’t how we think today and the way we think now won’t be how teenagers 30 years from now will think. And within that every teenager will have different priorities and different hopes and dreams so clearly you can never have a full understanding of every teenagers mind. I have been sick for the last 5 years of my life and have been removed greatly from people my age so I can’t tell you much about the way they think but I can tell you about the way I think.

The thing about being sick for so long is I had a lot of time to think.  Most people envy being able to stay home all day and relax but being that isolated can become boring and tedious; you can only check facebook so many times. For the first few years of my illness I found small things to entertain me, video games, books, television shows, but as I grew older I spent more of that time thinking. I thought about my future and if I would get the chance to have one, I thought about my family and if I would always be a burden on them and I thought about the world and would I ever be able to do anything for it. I started spending more of my time reading about what was going on in the world and I started seeing things that I couldn’t believe were happening. For example a couple months ago in Iran 70 university programs were closed off to women because they were surpassing the men within them. And in many places around the world, such as Uganda, it is legal to kill a person for being a homosexual. Reading all this I wanted to fix it but never thought I would have the opportunity to.  At that point in my life I didn’t let myself dream or hope for anything but sickness, after five years of nearly constant illness how could I? So I ignored these problems and went back to my tv or video games.

Something changed for me a few months ago, I got tired of letting my illness stop me, I got tired of not trying to do anything because no one thought I could succeed, and I got tired of accepting that I would live the rest of my life being ill. I don’t know what changed for me but I did. I started researching universities and looking at careers in human rights and I started working towards a future for myself. I started volunteering in the community and doing things to see if I could handle going back to school. And now after five years I’m fighting my illness so I can do something with my life. I have decided I want to become a human rights lawyer and be the person that helps solve the types of issues mentioned above. So this year I’m working my butt of to do well in school and to get more involved so I can get into a good university and eventually a good law school. It is hard, I get tired and I get sick but I keep working because I have to, because I’m tired of letting illness rule my life.

So that is how I think, it may not be how every teenager sees the world but those are the challenges I am currently facing and I hope this gives some insight on a teenagers brain even if it is just mine. One thing I want to add is a quote from novelist John Green.

“When adults say, “Teenagers think they are invincible” with that sly, stupid smile on their faces, they don’t know how right they are. We need never be hopeless, because we can never be irreparably broken. We think that we are invincible because we are. We cannot be born, and we cannot die. Like all energy, we can only change shapes and sizes and manifestations. They forget that when they get old. They get scared of losing and failing. But that part of us greater than the sum of our parts cannot begin and cannot end, and so it cannot fail.”

― John Green, Looking for Alaska

(Photo credit: NASA Goddard Photo & Video. This picture has a creative commons attribution license.)


Teen Series Part 3: Don’t Make Empty Promises

Last week I introduced you to Vicky Rinfreschi, a South African teenager with wise words. She has a close and open relationship with her parents, and her love and respect from them can be clearly seen in her words. Last week she gave advice that can help parents attain that kind of relationship with their teenage kids, and today she is back with more. Without further ado, here are the rest of Vicky’s words, uncut and unedited.

DON’T MAKE EMPTY PROMISES! This is just as bad as lying. My parents aren’t perfect but they are pretty close. Even so this was an area when we used to butt heads quite a lot. Now that I’m older I do understand – but at the time it caused me hours of misery. You have to be aware that a child’s memory is loads better than that of an older person. They remember EVERYTHING! You will say a mindless comment like, “Not now honey just a bit later and I PROMISE I will play that game with you.” Or “Next weekend I PROMISE we will go to that shop and find it”. Everyone has said something along those lines just so you could get a moments rest. But then did you do it? My parents had a track record of 6 out of 10 when it came to doing that thing later (if it wasn’t a priority – such as a board game etc.). I understand that to an adult your child’s little requests aren’t such a high priority, like Kirsten said, worrying about feeding your kids is higher on the list than going to the beach; but to your child , even your teenager (though you might find it hard to believe), nothing could be more important. It’s a cry for quality time. It may even be (as it was for me) that your child wants to distract YOU from your worries and make you smile for a period of time no matter how small. So before you make that statement make sure you can back it up with action and before you blow off that action think about how nice it would be to connect with your child before you’re no longer the centre of their life. That period of time when your child idolises you won’t last long. Enjoy it now and maybe, just maybe they will never stop idolising you. I haven’t. Everyday I strive to be as wise and loving as my mom and as smart, strong and as caring as my dad. Be the parent you wished your parents were, and trust me you won’t go wrong.

Another big issue is MONEY. Be honest about your finances. I remember when I was little I had no concept about money; I just knew what I wanted, when I wanted it and that was often right then and there. Most parents make the mistake of saying no to their kids without giving them a reason – leading that child to believe that “my mommy/daddy don’t love me because they wouldn’t get me that toy/chocolate.”  Don’t make that mistake. My family have been through ups and downs when it comes to finances. Some years money was abundant and birthdays, weekends and Christmases were filled with all sorts of goodies. But some years money was tight (really tight) and we couldn’t afford the little goodies that make children feel loved, but my parents where HONEST about it. Yes I would be disappointed for about 5 seconds but I got over it because IT WASN’T THAT MAY PARENTS DIDN’T LOVE ME – they would have bought me the earth if I so desired it. Don’t think that just because we are young we won’t understand. We perceive a lot more than most adults. Show your kids that they don’t need little gifts for you to prove your love – good old fashioned quality time at home with a soccer ball or board game does the trick ten times over. So give up a little television or facebook time and play a game with your child. Trust me. That’s a foundation that you should nurture from the beginning.

The biggest thing and maybe the main reason why I consider my mother one of my best friends and my father my advisor, is because they never let me forget, not for 1 second, how much they loved and supported me. IN EVERYTHING, NO MATTER WHAT! It may seem frivolous; but to randomly go up to your child and tell them that you love them and that you are proud of them actually makes a huge difference. Especially (even though most won’t admit it) to a teenager. He/she might have had a typical downer teenager day at school and you, with no hidden agendas, telling them how much you love and them, could turn the dark cloud they have been nurturing with self-loathing thoughts, into a fluffy pink one filled with love and confidence. You don’t need a reason to express your love for them. And make sure they know that no action could change how you feel;  yes you might get mad or be disappointed for a bit but that’s because your love runs so deep and so strong that you wish you could take away all the problems and hurt. Let them know that you are a safe place for secrets and advice. DON’T BREAK THAT CONFIDENCE EVER!!!!

In short; treat your children as you would want to be treated, because they will do as you do and not what you say. Trust your kids and they will trust you as long as you show them that they can. And most importantly earn their respect by showing them respect and your relationship will evolve into a beautiful friendship that will last for the rest of your lives.

(Photo credit: Vagawi. This picture has a creative commons attribution license.)


Teen Series Part 2: “You Don’t Learn Respect, You Earn It”

Last week, I was honoured to have a wonderful guest post on my blog from South African teenager Alex. The post was a candid and honest view of the world from the eyes of a sixteen-year-old. Today, we hear from Alex’ best friend, Victoria Rinfreschi. Vicky is the daughter of a dear friend of mine who seems to have been getting it right when it comes to raising teenagers.

Vicky sent me plenty of words, too many to fit into one post. But I did not want to edit or cut a single word, so Vicky’s post will run in two parts. Here is the first half – uncut and unedited.

My name is Victoria – but I prefer to go by Vicky.

I currently live in Cape Town South Africa, with my parents and my older brother. I’m 16 years old. I’m currently training to be a waitress at my local spur (a South Africa food franchise based on American cuisine). I take maths lit (aka maths for stupid people – no really it’s a waste of life), English, Afrikaans, Tourism, and 2 practical subjects namely Visual Art and Design. I take 2 extra subjects; Sport Science, Italian and an extracurricular; Animation (learning graphic programs and how to animate anything you want).  I’m a qualified level 3 first aider and I write little news articles and draw cartoons for my school’s media portfolio. My parents say I do too much – sometimes I feel I don’t do enough.

When I get out of high school my goal is to study at a graphic collage. I don’t quite yet know what I want to do – but I know my field. The only thing that interests me (and the only reason I go to school) is to draw or express myself creatively in a medium of my choice – be it clay or charcoal/graphite, paint or mixed media, or even just on 3D max, my life revolves around Art.

Okay, so now you know a bit about me. I’m an “artsy-fartys” person, who works too hard, sucks at maths, and takes subjects she finds useless. Good, now that we have that out of the way, it’s time to get down to business. I’m going to write about my personal experience and what l have learnt and know. I’ve had these conversations with my friends on many occasions and I remember the thoughts behind the words. I will touch on what I feel are some of the key mistakes most make – and maybe reading this will help you have that better relationship with your child now , before those adolescent years.

Something that I didn’t mention above is that I’m possibly one of the luckiest teenagers out there. My parents got it right from the start, the Lord knows how they did it – but I certainly don’t.  Working at a family restaurant I constantly see things that shake me. Such as parents leaving their children (ages varied form 3-4 to 7-8) unattended at the restaurant for hours only to return and be upset that they can’t find their kids. Or cursing at their 5 year old telling them that they should go and die because of some arb little reason. You don’t realise it now, but the foundation you lay with your kids from the beginning determines how they will be as teenagers. It infuriates me when parents complain about how their teens are “rebellious” or need to learn respect. Well let me tell you something. YOU DONT LEARN RESPECT- YOU EARN IT! You determine how your children are going to turn out! Every word, every look, every action, imbeds itself in your child for eternity! They might not consciously remember it and you might not either but it’s there, burrowing away at their subconscious and eating away at the relationship you are trying to forge many years later.

I always knew where I stood with my parents. This is key. Everybody craves certainty. We can’t function or grow properly without it! It’s a basic need. It was my certainty that no matter what I said or did – they would ALWAYS love me, they would never take their frustrations out on me and they would ALWAYS (I shall repeat for emphasis) ALWAYS be honest with me. It was this that made it so easy to form such a great bond with my parents and make it what it is today (at the “height” of rebellious actions and puberty). If your child asks a question – no matter what it is, answer it honestly. Believe it or not, we can all tell a lie from a fact and we will question your integrity if you can so easily lie straight to our face. We aren’t going to listen to a hypocrite. Why should we be open and honest with you if you can’t lend us the same curtsy? Besides we won’t be able to trust you – you’re liar. At the end of the day it’s not what’s wrong with your teenagers; it’s what’s wrong with you. As babies we have no say about how you treat us or act around us. But as a young adult we can choose not to take it anymore.

Yes I admit when I grew up I asked some pretty difficult questions; and to be honest I mostly did to test my parents – often I already knew the answer, I just wanted to see if they would tell me the truth. And they never failed me in that respect. Don’t underestimate your child. We know a lot more than adults give us credit for. They always answered me honestly, but they always gave me just enough information that was appropriate for my age at the time.

(Photo credit: Woodley Wonder Works. This picture has a creative commons attribution license.)