For All Who Did, Who Do, or Who Will, Parent Young Children

In many ways it is a great relief that I am no longer a parent to very young children. At times, being a mother during the early childhood stage was difficult and stress-inducing. It wasn’t always the children themselves that caused this tension but, surprisingly, other parents.

Every generation of young parents believe they have found the “magic key” to raising children. They stand in righteous judgement of the generation of parents before them (as well as to their contemporaries who don’t follow the same parenting prescription as them) convinced that only they themselves know how to do things right.

It will never cease to amaze me that people actually believe the very complicated procedure of raising human beings can be reduced to a step-by-step, one-size-fits-all approach. How can anyone have a monopoly on parenting? 

Whenever I run into new parents, and sense their joyous hearts but see their weary eyes, I tell them to do whatever they think is best. I advise them to throw away the books and to shield themselves from the harsh judgement of others.  

You want to breastfeed? Go ahead. You want to bottle feed? Go ahead. Your baby will only sleep in the bed beside you? Go ahead. Want to put your toddler on a leash at the mall? Go ahead. You have to do what you have to do to love your child while simultaneously loving and taking care of yourselves. 

It is with just a touch of a heavy heart that I share the following with you. Speaking as someone who knows that sometimes our worst worries do come true regarding our children (come to think of it, maybe because of that) I truly believe that the following is, bar none, the best piece I have ever read on parenting young children. So with great admiration and respect I share with you Anna Quindlen’s poignant advice on parenting.

All my babies are gone now. I say this not in sorrow but in disbelief. I take great satisfaction in what I have today: three almost-adults, two taller than I am, one closing in fast. Three people who read the same books I do and have learned not to be afraid of disagreeing with me in their opinion of them, who sometimes tell vulgar jokes that make me laugh until I choke and cry, who need razor blades and shower gel and privacy, who want to keep their doors closed more than I like. Who, miraculously, go to the bathroom, zip up their jackets and move food from plate to mouth all by themselves.

Like the trick soap I bought for the bathroom with a rubber ducky in the center, the baby is buried deep within each, barely discernible except through the unreliable haze of the past. Everything in all the books I once pored over is finished for me now. Penelope Leach, T. Berry Brazelton, Dr. Spock. The ones on sibling rivalry and sleeping through the night and early-childhood education, all grown obsolete. Along with Goodnight Moon and Where the Wild Things Are, they are battered, spotted, well used. But I suspect that if you flipped the pages dust would rise like memories.

What those books taught me, finally, and what the women on the playground taught me, and the well-meaning relations taught me, was that they couldn’t really teach me very much at all.

Raising children is presented at first as a true-false test, then becomes multiple choices, until finally, far along, you realize that it is an endless essay. No one knows everything. One child responds well to positive reinforcement, another can be managed only with a stern voice and a timeout. One child is toilet trained at 3, his sibling at 2.

When my first child was born, parents were told to put baby to bed on his belly so that he would not choke on his own spit-up. By the time my last arrived, babies were put down on their backs because of research on sudden infant death syndrome. To a new parent this ever-shifting certainty is terrifying, and then soothing.

Eventually you must learn to trust yourself. Eventually the research will follow. I remember 15 years ago poring over one of Dr. Brazelton’s wonderful books on child development, in which he describes three different sorts of infants: average, quiet and active. I was looking for a sub-quiet codicil for an 18-month old who did not walk. Was there something wrong with his fat little legs? Was there something wrong with his tiny little mind? Was he developmentally delayed, physically challenged? Was I insane? Last year he went to China. Next year he goes to college. He can talk just fine. He can walk, too.

Every part of raising children is humbling, too. Believe me, mistakes were made. They have all been enshrined in the “Remember-When-Mom-Did Hall of Fame”. The outbursts, the temper tantrums, the bad language, mine, not theirs. The times the baby fell off the bed. The times I arrived late for preschool pickup. The nightmare sleepover. The horrible summer camp. The day the youngest came barreling out of the classroom with a 98% on her geography test, and I responded “What did you get wrong?” (She insisted I include that). The time I ordered food at the McDonald’s drive-through speaker and then drove away without picking it up from the window (They all insisted I include that). I did not allow them to watch the Simpsons for the first two seasons. What was I thinking?

But the biggest mistake I made is the one that most of us make while doing this. I did not live the moment enough. This is particularly clear now that the moment is gone, captured only in photographs.

There is one picture of the three of them, sitting in the grass on a quilt in the shadow of the swing set on a summer day, ages 6, 4, and 1. And I wish I could remember what we ate, and what we talked about, and how they sounded, and how they looked when they slept that night. I wish I had not been in such a hurry to get on to the next thing: dinner, bath, book, bed. I wish I had treasured the doing a little more and the getting it done a little less.

Even today I’m not sure what worked and what didn’t, what was me and what was simply life. When they were small, I suppose I thought someday they would become who they were because of what I’d done. Now I suspect they simply grew into their true selves because they demanded in a thousand ways that I back off and let them be.

The books said to be relaxed and I was often tense; matter-of-fact and I was sometimes over the top. And look how it all turned out. I wound up with the three people I like best in the world, who have done more than anyone to excavate my essential humanity.

That’s what the books never told me. I was bound and determined to learn from the experts. It just took me a while to figure out who the experts were.

Too Bad We Had to Meet

Sean’s doctor retired. That might not sound like a big deal but Sean is my 12-year-old with Duchenne Muscular Dystrophy. This was not his family doctor – this is the guy he sees for his DMD checkups and his (much hated) steroids.

Now I don’t know about any of you but when a family member has a debilitating and deadly disease I kind of come to rely on the doctor. I don’t mean rely on him as in cry on his shoulder or expect him to fix my son but you know, rely on him as someone sharing the burden a little bit.

I liked this guy. A lot. He seemed honest, reasonable and genuine. He was greatly skilled at communicating. Sean always felt comfortable and had a good laugh with the guy. He was open to questions anytime about anything – from skin conditions caused by steroids to the latest in research into treatment. On this front, he was connected worldwide. If we heard of news from anywhere in the world he could fill in the blanks on the latest clinical trials.

He was someone who knows the disease as well as we do. Someone who has spent decades watching boys with DMD come and (sadly) go. Someone we can call when we are having some of those issues that no one else ever even thinks about when it comes to life in a wheelchair and weakening muscles. Someone who actually empathized when we admitted that, at times, we probably overindulge the little dude a bit too much. Someone who, in fact, admitted he would do the same thing were it his grandson who had the disease.

Whether he knew it or not this guy was an anchor for a family in despair.

And now he’s gone.

No phone call. No letter. No email. No goodbye.

He was there and now he is not.

**************

I am reminded of my favourite doctor/author/philosopher Gordon Livingston and his book Only Spring on mourning the loss of his 6-year-old son, Lucas, who died from leukemia. An oncologist who had worked with the family throughout the ordeal abandoned them at the end. He left town right at the excruciating part of the nightmare. After his son’s death, Dr. Livingston felt the need to write this oncologist a letter. He had this to say.

Dear Bob,

I wanted you to know that we believe that you and the rest of the oncology staff did everything you could to save Lucas. I also think that, for all your collective experience, the ordeal that a family of a dying child goes through is not fully understood, even by those like you who have seen it many times. I hope you will read the enclosed journal that I kept during Lucas’ illness. I send it to you unedited; I have not yet been able to read it and perhaps never shall. I think you might find something in it that will help you respond to the plight of other families who place their precious children in your care and then must cope with unimaginable disaster.

While I do not hold you responsible for what has happened to us, I think you will understand why I am sorry I ever met you.

Gordon

C is for Charity, Compassion and Caring

For my ‘c’ post in the a to z challenge I am going to share a speech I wrote two summers ago when I spoke for a charity. My chief editor Babs assures me that this is not cheating. She says it is “recycling”. I figure even if it is cheating at least it starts with a ‘c’. :) So here it goes……

It is a pleasure to attend dinner with you all tonight and speak as a representative of a recipient of Hockey With Heart.

In February of this year, a fund-raiser took place, run by family and friends called Keep Sean Moving. Sean is our 10-year-old son who, at age 5, was diagnosed with Duchenne Muscular Dystrophy. Seeing the need for major home modifications, my brother began planning a fund-raiser. Hockey With Heart caught wind of the event and soon afterward, John Cabrelli came to our home for a visit to see how the charity could help Sean out. Our home was lacking a wheelchair accessible bathroom and a ramp outside to the back yard. Hockey With Heart began planning a very major renovation and while we were on vacation in July, they came into our home and completed the project. The result is simply beyond comprehension. It truly has to be seen to be believed. From the moment that Hockey With Heart had an architect draw up the plans to the moment the last piece of hardware was installed, they operated with efficiency, thoroughness and caring. Sean now has a fully accessible backyard, bathroom and bedroom. Hockey with Heart has certainly played a major part in helping to Keep Sean Moving.

It is an honour to be associated with a charity committed to helping others in their own community. In a world where it is easy at times to feel isolated, Hockey With Heart reminds us that there are people right in our own community who care, and who are willing to give of themselves in order to ease the burdens of others. A big thank-you to Peter Sands from the Unionville Men’s Hockey League who first brought our situation to the attention of Hockey With Heart. And to John Cabrelli who spearheaded the project and made sure everything proceeded with speed and efficiency, and to Bill Dawson who also dropped in consistently to see how things were coming along. I would also like to mention Larry Roma who was integral in gathering the various professionals to help in getting the job done.

I must also give a brief but special shout out to the Children’s Wish Foundation who are here tonight and who are beneficiaries of Hockey With Heart. Sean was a recipient of this great charity last December when they sent our family to Hawaii so that Sean could realize his dream of swimming with dolphins. It was an unforgettable trip in which we were witness to the fact that sometimes wishes really do come true.

It was on this trip that we heard of a Hawaiian saying that simply states “No rain, no rainbows”. On that day back in 2004, when Sean was diagnosed with such a debilitating disease, some rain certainly began to fall into our lives. But it is because of this tragic situation that we have had the honour of glimpsing rainbows that would otherwise have been hidden from us. To the hockey players who first formed this wonderful charity and all of the other friends and connections who willingly gave of their time to complete our renovation this summer and to all of you here tonight supporting such an amazing charity I must tell you that you are a very bright rainbow in the sometimes stormy life of a family who must cope with watching their child suffer. You represent all that is good in this world – a strong sense of community, kindness, selflessness, caring and compassion. It is people like you who bring some meaning to our suffering.

It is quite overwhelming to be the recipients of so much kindness. It is like being awed into silence.

Thank-you, thank-you, thank-you. A million times over we thank you.

 

A is for Animals

My first topic in the a to z challenge was given to me by my faithful reader – sandyrara. “Animals and the role they play in our lives”. So here it goes……..

In all honesty, I have never been much of an animal person. We had exactly 3 pets in my family growing up – a kitten named Molly that was given away after 2 weeks because my Mom and middle brother were so allergic, a turtle (name unknown) owned by my older brother that died because the vet said it was “handled too much” and finally there was one dog – Tina – a Yorkshire Terrier the size of a large rat who was adorable albeit a bit damaged. The puppies were selling for $400 each but we got Tina for $100 because the breeder said she was “emotionally unstable”. I like to joke that my mother probably said “oh well then, we’ll take her! She’ll fit right in.”

Over the years I have come to see the value in pets – and in animals in general really. I think a lot can be said about a person just from observing how they treat animals. My younger son LOVES animals of all kinds. He even likes insects. I’ve often thought how interesting that fact is – perhaps, being made weaker and more dependent by disease, he can empathize with their vulnerability more so than most people. I kind of admire his love of animals.

Generally, I myself am afraid of animals. In fact, my fear of dogs was at a completely irrational level most of my life. But a few years ago we got a puppy and that has helped me feel more comfortable. I can’t speak to other sorts of pets – cats, lizards, fish, snakes and birds to name a few – but I do feel qualified to speak about dogs. Having had Ellie in our lives for more than two years now I finally understand the attachment people feel to these animals.

I have a saying that I often use to describe Ellie. “She takes love and she gives love”. Aside from the basic physical requirements of life like eating and sleeping this appears to be all Ellie is interested in. Who can’t love that?

Ellie enjoying a summer's day.

 

Is it Really Better?

Better late than never. Another one of my Grandma’s little gems. I am on the fence about this one. I am not convinced it is true in every situation. My mother was famous for her tardiness. Her five sisters are no strangers to being fashionably late either. I assume their mother, my Grandma, must have possessed the same habit hence the perpetual use of the motto “better late than never”. For much of my life, I was the most punctual person on Earth. In fact, the thought of being late for something - especially school – made me break out in hives. In my younger, quieter days I had genuine anxiety if I was running late for something. But just like my weight and youthful good looksLaughingthat changed as I approached middle age. I developed a more laissez faire attitude. There is part of me that doesn’t like the habit of being late. It seems a bit rude – like your time is more important than anyone else’s. So I try to compensate. I can not run away from my genetics but at least I can try to reconcile this ‘late’ thing and the desire to be considerate, not rude. As I was reading the newspaper this morning and drinking tea (one of my favourite activities EVER) I kept a close eye on the clock. My son swims every Sunday and I needed to give myself enough time to look presentable to the world before we had to leave. As I was finishing readying myself my husband was putting on his coat in the front hall. I did a quick mental calculation. Now keep in mind my son uses a wheelchair so getting into the van is not a quick event. If you ever want a lesson in patience, spend a week with someone who uses wheels instead of legs. How long would it take for my husband to accompany our son outside, use the remote to eject (slowly) the Bruno seat, transfer the boy over, push the chair to the rear of the van, use another remote to release the mechanical arm and lower it, buckle it to the chair, raise the chair up and into the back of the van, go buckle the boy’s seatbelt and shut the side door. I had just bought myself another 5 and a half minutes. Could I say “I’ll be right out!”, check Facebook, take a vitamin D, give my dog a treat, compose a tweet, put my coat on, add a matching scarf, check myself in the mirror and make it outside on time? Of course I could. And that is exactly what I did. I have always believed that if life is working properly then eventually we mature to an age where we realize our parents were not perfect – just like everyone else in the world. If we find we possess some of those – how shall I say it? - those qualities or habits that really were not that admirable then the best thing we can do is to try to do better. Seems much healthier than simply blaming our parents for everything. And so that is what I attempt to do. I recognize the rather laid back attitude I have developed towards being ready or being on time and I am trying to do better. For the record, my timing was impeccable this morning. As my husband got into the driver’s seat and pushed the button to lower the tailgate I opened the passenger side and calmly climbed in. Unfortunately though, I think he may be on to me. As I buckled my seatbelt he smiled over at me and said “Good thing all you have to do is get your a#$ in the car.”

Get Back on the Horse

Here’s the deal. I used to belong to Goodlife Fitness which I loved. I am of the ‘group exercise’ persuasion and I really enjoyed their classes. But in 2005 when my son was diagnosed with DMD I stopped going and took up scotch and cigars instead because well, I don’t know why but I did. I can not believe it is now 2012 and I have never bothered to get back on the horse. So the thought of re-joining has been rolling around my head for some time now. The main reason is not to lose weight because I need to simply close my mouth for that purpose. It’s because I miss the feeling it gave me mentally. I think there really is something to increased serotonin levels in the brain. I’ve been feeling down and out for a while now and, quite frankly, I am getting a little tired of it. I need to return to my normally cheery self. Cool

I even get a discount through an organization I am involved with – a very hefty (pardon the pun) discount. So what the heck is holding me up? I think I’ve finally figured it out. I am worried I’m too old. Six years ago, when I turned 40, I thought this getting older thing was a breeze. I felt totally on top of my game. Mid-life crisis? Pfffft! Well those days are over. I recently passed my 46th birthday and let me just say, I am feeling every one of those 16,801 days. I’ll regale you some other time with the “rewards” of middle age but for now, let’s just say that simply realizing that I am closer to the end than the beginning has been a dizzying experience. Along with things like forgetfulness, and eyesight that deteriorates by the day not to mention hair on my face, yes! on my FACE! this “autumn” season of my life has brought out insecurities I haven’t felt in years. And joining a gym and taking part in group exercise classes seems to be at the top of the list. I envisage a room full of 25 year olds bouncing around the room, the bulk of their lives ahead of them rather than behind them. They’re all wearing the latest gym attire and seem to know exactly what they’re doing every step of the way. I should probably also mention that they share not one cellulite pocket among them. Somehow I can not reconcile this image in my brain with the image of me, wrinkly, cellulitey, hairy-faced and all 46-y bouncing gracefully around amongst them. But I need to do it. I really need to just get over it. In the words of a friend of mine I need to “just deal”. So, with you as my witness, I am taking a pledge to re-join Goodlife Fitness and to get my ass back to class. Please send hip, up-to-date, trendy gym clothing suggestions to my twitter @pammustard. Thank-you. 

Who knew?

I have played more roles in this life than I care to count but here I go again. Boys (because it is predominantly boys) who have DMD have only one option in the way of medication. Steroids. They are no miracle. They won’t come anywhere close to curing DMD but they do keep the heart stronger for longer. And the lungs. And breathing is important. If we can avoid that tracheal intubation it would be a very (VERY) good thing. They have their down side. Swollen face, chubby body, stunted growth, increased appetite to name a few. But when you’re dealing with something that could rob your son’s life in his teens you do what you have to do. Which leads me to my new “role”. I think I am morphing into an advocate. I never thought I would say that but here I am, seven years after diagnosis, seven years of hoping maybe the doctors were wrong, seven years of saying “it won’t take over my life” and here I am. An advocate. It’s an insidious disease. It creeps up like a thief in the night. Slowly, methodically. Before you know it, there it is in your face at every single turn. “Look at me” it mocks. Right now the only defense is deflazacort - a steroid. However our health care system, in all its wisdom,  is not funding it – they will fund prednisone but not deflazacort. Does that make any sense? Dr. Doug Biggar at Holland Bloorview has worked with deflazacort for twenty years. He is adamant it is the superior steroid. Fewer side effects and more readily tolerated. So I’m on a mission. I am starting with our MPP and the Minister of Health. Dr. Biggar is in full support. Wish me luck. Let’s hope I can see it through to the end and that I can accomplish something. It’s a little thing but it’s better than nothing. In the words of a very wise and favoured author, Dr. Seuss, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” With a heart heavy with caring and love and hope, forward I go.

Guess what? Money can buy health

My son has Duchenne Muscular Dystrophy (DMD). I am registered on a site called PPMD (Parent Project Muscular Dystrophy). This organization is in the United States. There are various PPMD’s around the world – I often wonder why Canada doesn’t have its own PPMD. Anyway I digress. DMD is a genetic mutation. To put it in the most simplest way possible in boys with this disease, something is either missing, duplicated or nonsensical in the gene that produces dystrophin. These things are called exons and due to one (or more) being missing, or duplicated, or nonsensical, the body does not produce dystrophin – which is the protein necessary for healthy muscles. Hence boys with DMD have muscles that are literally “wasting”. Having attended a conference in London a few years ago and staying abreast of the latest in research I have discovered a dark side to medical research. There have been two tests world-wide to test boys with “exon 51″ deleted. Then a new trial started in which they are testing boys with “exon 50″ deleted. You would think they must be testing the most prevalent forms of exon deletions wouldn’t you? Well that is not always the case. There is a charity in the USA called Charley’s Fund – run by a doctor and his wife whose son Charley has DMD. His deletion is exon 50. Guess who donated five million dollars to fund the trial testing exon 50 deletion? You got it – Charley’s Fund. Anyway, after much discussion in a thread on the PPMD site I wrote a response that sums up the fact that money CAN buy health. I thought that for today’s blog I would paste my response below. Please read carefully. I am not criticizing Charley’s Fund at all. In fact, if I were the parents I would do the same. But I like my response because it brings up the fact that there are so many ethical questions raised when you have a son with a disease as serious as DMD.

“I agree that is seems unfair and at times even unethical but money DOES make the world go round. I never used to believe that but I sure do now. Money can even sometimes buy health. The drug companies really only have one aim and that is to make money. Is there really anything wrong with that though? It is the political system in which we live – if we want drug companies to all make the same money wouldn’t we have to change our entire capitalist system. Communism perhaps? I don’t believe that the individuals working in the labs think only about money – I am sure when they treated that Duchenne dog and brought it from almost not walking at all to running down a hallway they must have rejoiced for reasons far deeper than money. But the shareholders of the company are in it for one reason and one reason only – to make money. In defence of Charley’s Fund – if you were the parents of a boy who was fortunate enough to win a lottery of 100 million dollars, would you not be tempted to approach a drug company who had already shown success in exon skipping and offer to fund the next trial IF they test the exon your son happens to have deleted? Of course you would. I agree that Charley’s Fund did not “win a lottery” and in fact have used monies raised from the public in order to fund the next trial however that is a whole other discussion. It is up to the families of Duchenne patients to become knowledgeable about the various charities and to work to raise funds for the charity that seems to do the most for all Duchenne families. Or – invest in the one that is going to give money to a company that is testing YOUR son’s exon deletion next. Ultimately, it is a personal decision. It is a bit of a philosophical discussion – something that has happened over and over again since we found out about our son’s diagnosis. This disease is not just a physical/emotional thing, it brings about very deep questions about many different topics. On a lighter note, the successful skipping of any exon will only open the gates to chemistries that can skip other exons – and from what it seems the drug companies are in discussion with the FDA as well as the governing body in Europe (forget what they are called) to expediate the testing process once exon skipping of one exon has proven to build dystrophin in the cells of the body. We can’t forget that some boys have the disease due to a nonsense mutation or exon duplication – so the ‘Golden Willie Wonka (great way of putting it by the way) exon skipping ticket’ is useless to them regardless of what company is skipping which exon. Every family needs to count. Every boy needs to matter. Unfortunately we live in a world where sometimes (many times) money over-rules that.