Turtle Turtle

Turtle 1

 

Turtle.

It’s my word for when I retreat into myself.
It’s when I know that I am struggling and need to shut out the ‘noise’ of life.

I go silent. I get quiet. I don’t return email or calls or texts. I don’t go out. I sleep in. I cancel things – or I don’t show up.

Turtling comes from a place of being overwhelmed, which can be an easy thing to happen when you have an extremely unpredictable life.

It’s my code word, and those close to me know what it means. I’ve even thrown it out there on FB before “Turtle” will be my post, and my code word is understood and respected. Some friends will respond with “hugs” or words of encouragement, others with a “question mark”. It depends on how well you know me, and how well you understand the life I am leading.

My turtling metaphor indicates retreating. Pulling into my shell and self-isolating in a hope for self-preservation. It is instinctive and unplanned. It just – happens, and it is absolutely necessary. No one can keep this pace indefinitely. It is unplanned, but it happens when it is needed and when there is space and time for it. (It’s hard to turtle when you have to “on” and have to be a medical/school/therapy/treatment/acute illness hardcore warrior mama). It’s like getting a bad cold  or flu when you are on holidays…like your body finally realizes you are on a break and “have time” to get sick.

And Turtling isn’t depression. It’s blue and can be sad, but it’s different every time. It’s sort of an unplanned shut down. You haven’t plugged your power cord in for awhile and you’ve been ignoring those pop-up warning messages, so you go into forced shut down. It doesn’t feel good to go into unplanned shut down, and you aren’t sure how long it will take to power up again.

Why Turtle?

The shell. I pull into it. It’s sound proof and there are no windows or doors to peak in to see what I am doing. It’s dark and muffled and the space is small enough that I don’t have to invite anyone else in. But…if I need to poke my head out for something, I can.

And it’s hard – the shell – it protects me. I like that.

Am I Turtling now? You are probably wondering as I write this. I’d have to answer yes. Having a hard time with wanting to be out and about. Overwhelmed with decision making and intense responsibility that are beyond what you can imagine – or anyone should have to go through. (Seriously beyond. Like 1 in 7 billion beyond). Taxed.

How long will the Turtle last? It’s hard to tell. This one is a doozy. I feel like it will be awhile.

Do I still smile while I turtle? Yes. I do. And people ask how I am and I say ‘fine’. What do you say? Just smile and nod. Smile an nod. (And I find cute images of turtles to share).

Turtle 2

Those mom friends of mine out there who are reading this, and have special kids like Kate understand what I am writing here. I’m sure you call it something different. I know you have experienced it – and will again. My words of wisdom/advice, embrace it. Let it wash over you and don’t fight it. Let the Turtling happen. Every now and then poke your head out to see what is going on, to remember there is a life you have outside the shell that is important, be sure to get the basics done, and make at least one plan for the day (today I will make a meal, today I will run one errand, today I will make one phone call), and slowly ramp up those ambitions to draw yourself out of the shell – but don’t rush it. Decide what ‘noise’ is the most important and pay attention to that first.

Be social?  Well, you can. But it will exhaust you and people won’t understand. Phone calls can be good, if you have the energy. You may want to warn the person on the other line that you will be random, you may cry, you may rant, may be angry, or just sullen and moody. Try not to be too angry at every other living person. I walk around in a fog of feeling like I am on parallel universe to others who can’t relate at all to my life. (Warning: hanging around really happy people may make you want to slap them.)

You may also want to avoid driving. (Those red things at intersections are stop signs).

Exercise? Again, you can. But sleep and pyjamas feel more like the right thing to do. Then again, going for a good walk is probably well advised. (And I am a RUNNER).

Eat Well? It is advised. Throw in some chocolate for good measure. Be wary of too much sugar and caffeine though. You may not realize it, but Turtling likely means you are running on fumes and adrenaline. Adding a load of caffeine and sugar to that mix can be harsh. Wine is also a part of this. I’ve been told that more than 9 (6 ounce) glasses a week can be problematic. (Really??!!)

Sleep? Yup. At first you won’t. The lead up for me is my mind racing, staying up too late, not able to settle into sleep (and Kate doesn’t help that). Then the crash that precedes the Turtling happens and post crash all you will want to do is sleep. Hopefully you can set yourself up to get some. Respite from your child will also help.

(The above are the four most basic prescriptions of the ‘experts’ the doctors, counsellors, and advisors that we speak to. They do work, but when you are in the middle of Turtling you sort of want to thumb your nose at them. It’s hard to get the momentum to do any of these well. Self-care isn’t the first step when you are Turtling.)

Just remember you can’t stay in the cozy shell forever. Life is still happening and moving along. For the life we lead, Turtling too long can be disastrous. And you can probably count on your unpredictable kiddo to yank you out of Turtling PDQ (pretty darn quick), if they decide to get acutely unwell while you are holed up in your shell. “No more of that mom, I need attention now! Off to CHEO we go!”

And so the cycle goes. Recognize it for what it is.We can’t live this life of constant stress, worry, fear, anxiety, sadness, grief, joy, happiness, relief, frustration, anger, vigilance without turtling every now and then. I have realized it is physically impossible. I/we need moments where we shut down. It is a basic survivability necessity.

Turtle Turtle, welcome to your shell.

Julie

(Written as I sit here in my pyjamas and contemplate my ambition for the day. A shower perhaps?)

Work Life Balance #LOL

 

This is a post I’ve been meaning to write for some time now, and I think it will take a few read throughs and edits before I am ready to post it.  Read through and edits aren’t something I typically do with my posts – I want them to be an expression of what I am really thinking at the time – but there are posts that need a bit more careful consideration, and this is one.

Underlying themes for this post:

  • My life since Kate has been derailed. Not slightly. A lot.
  • Making this statement isn’t a quest for sympathy, and it does not mean I don’t love Kate or have regrets.

Since Kate my life has been derailed. I am a planner by design. A forward thinker. A list maker. I don’t dwell in the past but am always moving forward. I have high expectations of myself and what I want to accomplish over my life. I expected my life to follow a certain predictability – with change along the way and some unexpected events. Was this naive? Doesn’t everyone make a plan they expect to be able to follow. Derailed is the best descriptor I can think of to the past 6 1/2 years.

Nothing about life since Kate has been predictable. The very nature of her disease and related illnesses are profoundly unpredictable. We don’t know if she will having a vomiting episode at night, if she will be unsteady and pale in the morning, if she won’t be able to cope with her school day because of extreme fatigue, if we will have to run into CHEO for help…each day, moment to moment is unpredictable. We don’t know what this disease will bring, and neither do her medical team.

And with that uncertainty we try to manage our daily lives. For me, as the mom, the primary caregiver for Kate, the case manager and coordinator, the keeper of records, the medication administrator, the seizure monitor, the laundress of vomit covered linen, the therapist, the chauffeur, the nurse, the researcher, the nurturer, the comforter…it meant my life changed significantly. Kate became my full time job.

I did not return to my career as public servant after maternity leave. We were always in crisis and still trying to diagnose Kate while managing an impossible health care system that seemed not able or structured to provide the support a child like Kate needed. I had little sleep and was constantly managing a sick baby. Work? It wasn’t even a thought.

Worry? Yes, I did selfishly worry about my career and advancement as a public servant. Like I said – high achiever – eye on being a senior manager (Director General by age 40 was the focus). I wondered when I could get back to working hard and moving ahead. I worried I would be ‘forgotten’, that all my good work, long hours, and dedication would be forgotten. I was reassured that wouldn’t happen, that I was “too good” and had “strong managers who would remember me”. So I went from 3 month leave to 3 month leave. Constantly extending, and hoping that in the next 3 months things would settle down with Kate and I could return to work. At one point I did attempt a return to work when she was 2 years old. She’d had a period of stability for a few months, and so I attempted a return starting with the minimum allowable 2 days a week. The week I returned, Kate was hospitalized. The following months, she would be hospitalized or unwell for most of the time. Six months into my return, we were planning a major surgery for Kate with Sick Kids. Kate was not sleeping still, she was regularly sick, she was not growing well, and the caregiver I had for her was unreliable at best. I lasted 8 months.

I left feeling disappointed, frustrated, and worried. I did not qualify for EI as I had a job, I just couldn’t work. There are no EI supports for parents in my situation. We really couldn’t afford for me not to work, and had to make the decision that our line(s) of credit would have to help support our household bills. I realized that things were going to really change for me. I clung to my benefits and kept taking short leaves and extending them regularly.

I was off of work for 5 years when I heard the federal government was “adjusting it’s workforce”. I was on leave, my Director was on extended sick leave and I became a number. I had no insight to this process since I was no longer on the inside, and I knew that I was likely to be a target. I was no longer the ‘go to’ employee, or the policy analyst that was up coming. I was a liability. I had been on an extended leave, and I was forgotten. I wrote an exam in attempt to keep my job. Kate was unwell at the time and in and out of hospital. I was ‘surplused’ two weeks later.

I returned to federal government work 1 year ago. I was fortunate to find a position, choosing to return rather than take a ‘package’.  It has not been perfect, and it has been at 3 days a week – which seems to be the most I can handle with the unpredictability of Kate’s illness, frequent clinic appointments, therapy, and tests.

I no longer want to move up in the management echelons. Actually, it is not a matter of not wanting to, I have a lot of desire, but I realize that my life simply won’t allow me to do that type of work – and there is no appetite to support the possibility. And it hurts. It hurts to see colleagues who are moving along while I am left behind.

I am not yet sure if I am seen as an asset at work. I try to focus and get things done at the rate I am used to, while at the same time fielding phone calls from Kate’s school about her being unwell, planning with her medical team, or making appointments with her therapists. I squeeze in the ordering of medications, supplies, and set up meetings. Some days I am foggy from fatigue, or overwhelmed with stress or worry about Kate.  I am still working my ‘other’ full time job.

I still think about working a 4 or 5 days work week. Wondering how and if it could work. Then I wonder if that is what I really want to be doing. It can be easy to get ‘excited’ about work and really engaged at the end of my three days. Then I come home, and Kate is having a good day, and we go for a walk or to the park. I wonder how long this ‘good day’ will last, and how many more ‘good days’ she has, and I remind myself why I am working part time.

Today, a good friend and colleague asked me, “What do you want to do?”

Simple question. And rather than thinking about it in depth, I answered quickly and narrowly within the context of my current role in government. But the question has stayed with me, and I am really pondering it, “What do I want to do.”

It’s a tough question, and I think what I want to do – what I can do – what my life situation will allow me to do – present a reality that I have to learn to live with. (Again, not searching for empathy here).

What I have learned about myself with the experience of this life so far is this:

– Solid footing may not happen for me. It may always be an unpredictable and stressful life.

– I need to learn how to minimize the stress and highlight the positives.

– I have to take breaks. I cannot go at the same pace all the time.

– I have to really think about the skill set I have, and what is possible.

– I need to have an income.

– I want to feel inspired by my work and know that it is making a difference.

– In all of the above, I need to consider my job of caring for Kate.

 

My full time job.

My full time job.

I am not sure what the future holds. What I do know is that Kate is my priority. Keeping her as healthy as she can be. Keeping her happy and ensuring she has the best life she can for as long as she can.

That is worth more than any paper I can push.

 

Julie

 

 

 

 

 

CHEO Turns 40

Before my son was born, I had never given a second thought to having a children’s hospital in our community. The Children’s Hospital of Eastern Ontario (CHEO) was barely on my radar screen, and my only connection to it was through the media should it be mention on the radio, or in the news. I didn’t think much of those sick kids. It was sad, but it wasn’t my reality – it wasn’t something I thought much of other than to catch the CHEO Telethon from time to time.

After my son was born, CHEO still didn’t really register for me. My friends were young and just starting their own families and no one had any real experience with taking their child to the hospital. But as a new mom, I became more aware and more in tune with illnesses that might affect young children. I understood the need to protect him from illness and injury, and the stories I heard about ‘other peoples children’ battling diseases like Cancer and Cystic Fibrosis, or being treated for injuries caused by the typical childhood accident, were now more important to me and carried a different weight of parental concern, and now those brief glimpses of the Telethon were more important to me and I started to donate.

I am lucky to have a very healthy 10 year old boy, who has rarely needed to visit CHEO. We’ve had to wander through the doors of the Emergency Department for a suspected broken leg (age 2), pneumonia (age 2.5), and a concussion (age 9), and I’ve lamented the long wait late at night in the ED and then been grateful of the nurses and doctors who took such care and attention with him.

But I never really tuned-in to what it meant to have CHEO in our community until Kate was born.

Kate is my now 6 year old daughter who we thought was born healthy, but who has been diagnosed with an ultra-rare form of mitochondrial disease called SIFD. Her story is incredibly unique and at the same time is very similar to many CHEO stories. Endless visits to the Emergency Department, frequent admissions to CHEOs in-patient units that parents ‘in the know’ refer to as 4 East, 4 West, 4 North, 5 East, and endless tests and procedures. When our medical odyssey with Kate began, the importance of CHEO became front and centre to our lives.

What CHEO has to offer our community and our children could never be replicated in an adult setting. When you enter the doors of CHEO, particularly if you become a frequent user, you feel a sense of family and community. You recognize that these are medical professionals who understand children and unique approaches needed to ensure they are cared for the way they need to be. Child life specialists, physicians trained to work uniquely with diseases that affect children, nurses who understand that the littlest patients need and deserve more patience and understanding, a fabulous clown who can cheer your child or help them through a procedure like no other professional can – these are just some of the things that make CHEO special.

CHEO guides itself along a principal of “patient and family centred care”, which means the hospital sees patients and families as an integral part of the hospital culture. CHEO works with families to ensure that values, customs, cultures, beliefs and preferences are part of the decision-making that surround a child’s care. Families are seen as integral to the team and respected as ‘experts’ on their child and in providing essential information about their child’s health. It is a shared approach that is unique to a paediatric setting, and it makes an incredible difference in caring for a sick or injured child.

CHEO is celebrating it’s 40th year as a hospital. 40 years ago, a few moms in our community recognized the importance of having a hospital for our kids in our own community. I am grateful to them for the incredible challenge they took on and the pillar in our community that CHEO has become.

If you are reading this, and you know our family, you are likely someone who has used CHEO, or know someone who has. You already know how wonderful CHEO is and how important it is to our community. What I hope you do is share that message with others. Tell them your CHEO story.

This year, the CHEO Telethon is June 7 & 8 on CTV. I remember in years past watching parts of the Telethon as I went about my day, curious about the stories that were being told. I never thought our child would be one of those stories, but in 2012 she was. Sharing our CHEO story was our way of giving back.

This year I am honoured to be a ‘co-host’ for the CHEO Telethon and will get to share my experiences as the Co-Chair of our Family Advisory Committee and talk about the fantastic Champlain Coordination of Complex Care Program that has been an amazing support to Kate and our family.

CHEO Telethon 2014

CHEO Telethon 2014

CHEO Telethon Co-Host

CHEO Telethon Co-Host

Though it might still fly under the radar for you. If you have a child in your life, I am sure you feel an extra comfort in knowing that CHEO is there. You never know when or how CHEO will touch your life.

I hope you tune into the CHEO Telethon this year (June 7 & 8). Listen to the stories. Donate what you can. Take a moment to appreciate.

 

Julie

 

Post-Script

The CHEO Telethon raised over $7 million dollars this year! Incredible generosity and wonderful for our the CHEO patients and families.

 

Kate is Deaf

I read this article a couple of days ago, and it got me to thinking and writing about what our journey with a Deaf child has been like. There is also some great advice in here about understanding the ‘capital D’ Deaf world and Deaf culture. Worth a read.

And then there was this article  today, written by a deafened woman (a hearing person who loses their hearing). Interesting take on cochlear implants and the idea of wanting to be ‘fixed’

It’s been a journey for me to have settled on whether or not to use the capital ‘D’ in describing my child as being Deaf. You see, using the word Deaf as opposed to ‘deaf’ (small ‘d’) denotes her inclusion as a person who is part of the Deaf culture. But I wasn’t sure that describes who Kate is, or was going to be, and then I realized it wasn’t for me to decide, it was for her to decide – or to show us who she is.

The small ‘d’ / big ‘D’ description of being a deaf/Deaf person is complex, and as a hearing person I feel reluctant to try and describe it here and really do it justice.  Big ‘D’ has to do with being culturally Deaf, born to Deaf parents and part of a very close Deaf community where aided hearing and use of your voice are not seen as something that are important to being part of the community (and sometimes discouraged). Big ‘D’ Deaf people could also be born to hearing parents but schooled in ASL, having attended Deaf school, and finding that their comfort lies more with the Deaf community than the hearing community.

Small ‘d’ deaf is using your voice, integrating into mainstream school, using hearing aids or cochlear implants and relying largely on your hearing to engage with the world. Often, small ‘d’ deaf people don’t identify with being deaf at all, and wouldn’t use the word ‘deaf’ in describing themselves. They are fully integrated into hearing culture.

And of course both of these, small ‘d’ and big ‘ D’ reside along a spectrum of choices, cultural priorities, language, interacting with the world, and decisions about aided hearing and use of voice.

 

Our Journey of Understanding

It wasn’t devastating for me when I found out Kate had moderate to profound hearing loss at 12 months old. I had suspected for some time and had been advocating for her to get hearing tested. It unfortunately took some convincing of her doctors. I didn’t realize the impact that being hard of hearing would have for her over the next few years. I thought with moderate to severe loss, with her cute little pink hearing aids, she would be able to hear us (‘normally’) and would learn to speak. I hadn’t had much exposure to persons who were hard of hearing or Deaf, only to my grandparents who wore hearing aids in old age (not the same). But over the next 6-12 months, I gradually came to understand that being hard of hearing was going to be a challenge for my child – and for us as a family. After her initial diagnosis, Kate continued to lose her hearing until at 20 months, she was diagnosed as profoundly deaf.

Deaf people don’t like to be described as having hearing loss, they don’t see it as a loss and prefer to be referred to as hard of hearing and/or Deaf. But you see, it is a loss in so many ways – and that doesn’t need to be construed as something negative in the long-term, but it is a loss.  It was a sadness for us, and we did grieve that loss for our child. I don’t see this as a slight against my Deaf and hard of hearing friends, in fact I know some of them would agree. I do understand their need to carve out their identify and separate it from the word ‘loss’, so in that context, I think the word ‘loss’ has be to understood to have two different meanings. When you are describing a Deaf or hard of hearing person, you don’t describe them as having ‘hearing loss’, it is offensive to them and an inappropriate way to refer to who they are as a person. But the grief and sense of loss for the family is real and has to be appreciated.

When Kate’s profound deafness was confirmed, I started to move out of having my (incorrect) expectations that this journey wouldn’t be difficult. I knew then that Kate also had serious developmental delays, and an undiagnosed rare disease to contend with as well. I knew immediately that we needed to give her access to everything possible to aid her in communicating and interacting with her world.  At that time, I remained unaware of the deep-seated philosophies and cultural identity of the Deaf community. As with most beliefs, it lies across a spectrum. There are Deaf people who believe CIs are parallel to eugenics or an act of ‘genocide’ against the Deaf community by the slow elimination of their community and language. They feel the medical community sees Deafness as a sickness to be cured and hearing parents as trying to turn their deaf children into ‘normal’ hearing children.  They feel losing their culture, their language, and being seen as persons with a disability in need of medical intervention – they certainly do not see themselves this way and consider it highly offensive.

Other Deaf people are more moderate, and understanding that more than 90% of deaf and hard of hearing children are born into hearing families and communities. They understand that with infant hearing testing, we are identifying hearing loss at birth and with new medical technology we can facilitate the ability to support/regain this human sense. They understand the families desire to be able to communicate with their child and offer the best of both the hearing and Deaf world to their children. At a fundamental level, I believe that there are many in the Deaf community who understand that cochlear implants and other emerging technologies such as stem cell treatment and gene therapy (even more controversial) are here to stay. A huge choice is emerging for the Deaf community to embrace this community of deaf children and welcome them to the Deaf community. Families (like ours) want to use both our hands and voices. Not all deaf children will learn to speak, not all will have the option of CIs, and not all families will choose technology.

It is not an easy position to be put in – having a deaf or hard of hearing child. The choices are difficult and often influenced by others, as well as our own initial ignorance and biases. I feel fortunate that we kept out options open. Kate was not an easy cochlear implant candidate because there are risks associated with anesthetic for her. We had to very carefully weigh out all the considerations and scenarios for her. A very possible choice for us was to not risk the surgery for her and choose for her to be a Deaf person with no access to hearing. In the end, we felt that giving her access to hearing and all means of communication possible was her best option. I felt confident that we could support her auditory and verbal learning. I also felt confident that we could learn American Sign Language (ASL), and find support within the Deaf community.

Learning ASL has been a process. Like any language it takes time and commitment, and a lot of practice. In our family, I have taken the lead having studied for 3 years now at night school at our local community college. Others in my family and community haven’t been as interested, or aren’t around Kate as much, so it has come to educators and others in the Deaf community to provide that role modelling for Kate.

Support within the Deaf community has been more difficult. I had to advocate very hard to get a ‘Deaf education’ for Kate. There were many from the hearing community willing to support us; our hospital and our local public health infant hearing program, these were hearing people with skills in ASL, but the Deaf community was much more difficult to access. There was no mentorship from other families, other than to find online support groups of other hearing families with deaf children, and most of those were highly focussed on auditory and verbal. The Canadian Hearing Society had many resources to offer, if you were an adult, but they had nothing for children (and still don’t). The Deaf community was also a very difficult ‘resource’ to access. It took a lot of time to meet Deaf adults who were willing to work with us and support us, and even still, meeting Deaf families with Deaf children has not happened for us. I am very grateful for the Deaf teachers and friends I have, for their support and mentorship and understanding and support for Kate (Denise, Kat, Phillip, Les, Todd), but I feel that there is a lack of resources and outreach from the Deaf community. And this is my difficulty with the strong stance against hearing families and their deaf children who are choosing technology, cochlear implants and full integration into the hearing world/culture. Some members of the Deaf community have high expectations of us with respect to the Deaf culture. They should go to Deaf (residential) schools, they should play with other Deaf kids, they should learn ASL exclusively, they should not be ‘forced’ to learn to speak, we should not be giving them cochlear implants. It is a strong position to hold when there is not much support to the hearing families of deaf and hard of hearing children to access Deaf culture.

Having her CIs has not been easy for Kate either. Because she can ‘hear’, people make assumptions about her; that she can hear them from a distance, or above the noise of a crowded room. They don’t realize it takes a lot energy for her to focus on hearing, that her hearing is digital, and that they should speak close to her microphones, clearly and face her so that she can still see their lips. Though we are grateful she has them, CIs are aided hearing, they are not the same as natural hearing.

I have chosen both worlds for Kate, and as she grows and evolves, I see her ability to communicate emerging. We are now at a crossroads with her as she has had her CIs for over 3 years and still has little language. She hears us (well, we think), she understands us, she has some words, she has some signs – and we have been ‘educating’ her in both equally. But now I see that we may want to try even more immersion in Deaf culture and ASL in hopes that we can support her ability to communicate and develop language even more. This opportunity is available to us now because she is school-aged and can attend the one and only Deaf and hard of hearing program in our local school board.

It doesn’t matter to me if she becomes part of the hearing world, or Deaf world, or both. It matters that she is the best she can be and that she is happy. I think that is what we all want for our children.

I never thought I would hear Kate speak, say ‘mommy’ or tell me that she loves me. She can do both now, in ASL and in speech.

How do I describe Kate? She is Deaf and can hear and she is deserves both worlds.

 

Julie

Random Thoughts About Jenny McCarthy

So vaccinations are in the news again, with outbreaks of measles in Ontario and in BC, and my mind wanders to thoughts about Jenny McCarthy. I hold the view that Jenny is point zero of the ‘outbreak’ of the anti-vaccination movement.  A few months ago there was an online article that was claiming she had retracted her son’s autism diagnosis. She has since come out with an official statement that discounts this article and plans to take legal action against the online media source. Irealize many have Jenny on a pedestal and believe she has raised awareness of the terrible consequences of vaccinations. I feel sad for Jenny.

 

vaccionation 2

 

Vaccinations are in the news again.

So why should we care?

To be honest Jenny influenced me – just a little bit. At the time that Jenny was standing on her soap box and proclaiming the evils of immunization, we were trying to figure out what was going on with our child and her acute illnesses, her mounting medical conditions, and her diagnosed but unattributed global developmental delay.

Kate does not have autism. In the early days of working on a diagnosis for Kate, there was some discussion about her ‘global developmental delay’ and possible autism. We kept asking the question because we were struggling to define her developmental delay and identify how to support her and what services/interventions/therapies might work best for her.

I wanted answers to help Kate and as she was still quite young, I questioned anything and everything that we put into her body – including immunizations. Kate was considered fragile and there was little known about the unanticipated impact immunizations could have on her and her undiagnosed condition; would it work, would it not, or would it complicate her medical condition. As I was exploring the question of autism, I started to read and found Jenny (McCarthy). I read her positions and I even read (scanned through) her book about how she ‘cured’ her son Evan. I am very capable of critical thinking and analysis, but I think the very exposure to all things Jenny as it related to immunizations and autism influenced my thinking.

I could blame pop culture and my occasional watching of E-Talk or Entertainment Tonight or Oprah. We can all blame Jenny in some way for the anti-vaccination movement, and that blame is coming in spades now with the discounting and a full retraction of the one ‘scientific’ article which supported her theory of immunization causing autism, and which has ignited a social revolution that is anti-vaccination. But I am not sure she is to blame. I do think she could have had more awareness that her impact as a pop culture personality would have on the broader population. I do think she had a responsibility to temper her public position with true evidence and research and support proper scientific discourse about her ideas and claims. I don’t blame her because she did what we all have done and what those of you who haven’t had to yet would do for your own children. She fought for her child. She did what she thought was best.

All she knew is that something was going horribly wrong with her son and she needed someone to listen. She needed help for Evan. She pushed for answers where there were none, and in the pursuit for answers she found a diagnosis that made sense and seemed to fit. Something that occurs more commonly than not in the rare and undiagnosed disease community. When she had that diagnosis, she did everything in her power to ‘fix’ what was wrong with Evan. She went everywhere and talked to everyone – again in the pursuit of fighting for her child. Where she went wrong was losing sight that what might work for Evan, and how she thinks she ‘cured’ him wasn’t based on evidence, at best it was anecdotal. She has a right to pursue her instinct for Evan, but she was wrong it trying to ‘sell’ it to the rest of the world, and those working with her were wrong as well. She lost her way as a mama bear and became an unfortunate advocate. Rather than working with the scientific community to prove the theory she feels so strongly about, she worked against known evidence and science and she has created a very difficult and dangerous situation for the world community.

It is hard to believe that someone like Jenny McCarthy can wield that kind of power. But when you have any element of celebrity and access to the talk show circuit with moms watching and a scary story to tell, watch out.

I really don’t blame Jenny, but I do blame people for not gathering the proper information and thinking critically for themselves. I feel public health officials and agencies should shoulder some blame for not being in front of the tidal wave of public worry about vaccinations and showing more leadership. Vaccinations are scary, you are putting a needle in your baby’s arm on a regular basis, and the public health message has not been  consistent and informative about why they are so important for well children, for chronically unwell children and most importantly, for those that can’t be vaccinated.

Parents Want Information

Your doctor tells you to get vaccinated, so you do, but that doctor/patient relationship is changing. Parents and patients are asking more questions of their doctor’s, they are thinking for themselves and misguided or not, they listen/watch social media, and celebrities with a cause, and are influenced by anecdotal opinion. This generation of parents hasn’t lived through epidemics of measles and mumps, or lost a pregnancy due to rubella. In my opinion, there is a responsibility for the public health community to better educate and increase awareness, by sharing more information about vaccinations, and what can happen if we stop vaccinating. Simply being told that they are safe by your doctor is not enough anymore. (Perhaps public health need a celebrity spokesperson of their own).

We had to suspend Kate’s vaccination schedule at one time, while her underlying undiagnosed disease was being investigated, but not because I thought they had caused autism (though I admit did worry in the back of my mind if her developmental delay had been impacted in someway by vaccinations).  Now, as it turns out, we no longer have a vaccination choice. Kate’s b-cell hypogammagloblunemia caused by her mitochondrial disease, hampers the effectiveness of vaccinations for her. She doesn’t mount the immune response a typical child does. As a result she has been re-vaccinated with vaccinations she has already received, beyond the normal vaccination ‘schedule’, in hopes that she will have some degree of protection. We’ve since learned, that the vaccination response has not been sustained in Kate, and she again has no protection.

My daughter is at high risk for contracting measles, mumps, rubella, diphtheria, pertussis, tetanus, meningococcus and pneumococcus should she be exposed.

The bottom line for me in my decision-making process is that if Kate acquires any one of these diseases she can become very sick. It was better to make her safe based on the scientific evidence than to risk her contracting such diseases which could seriously complicate her mitochondrial disease. But I no longer have a choice to vaccinate her, and because others are not vaccinating their children – what I call ‘the Jenny McCarthy effect’ – Kate is at higher risk as the rate for diseases controlled through vaccination are on the rise.

The ‘herd effect’ is less effective.

Yes, we have been protected thus far, because we have worked together as a society to vaccinate and reduce the prevalence of these diseases, but that is now showing cracks and being compromised. I think this is a point that many parents don’t realize, or don’t consider. We did not live through the time when these vaccinations were not available and these diseases killed children, or caused them significant harm, and we are now travelling the world more than ever before and visiting areas that have endemic disease. By not vaccinating your child because of unsupported claims, you are putting others at risk.  On the other hand, you probably have vaccinated families to thank for you child not having yet contracted one of these terrible diseases by minimizing your unvaccinated child’s exposure.

Not everyone has the choice to be vaccinated, and the risk of these diseases to children who are already medically fragile and who don’t have a vaccination choice can be devastating.

I understand that I am asking you to vaccinate your child to protect mine. But I am asking you to make a reasonable choice – a proven and effective choice – to protect your child also. I am not asking you to put your child at risk. Vaccinations do not cause autism. I challenge anyone to find a scientific article that can state that they do as scientific fact and published in a reputable medical journal. Vaccinations rarely cause adverse events, in Ontario last year there were 7.2 serious events for every 1 million vaccines. Measles kills 1 in 1000.

 

My last random thought about Jenny McCarthy is I feel sad for her. There is a lot of blame pointed in her direction, and she has been sorely misguided. I understand where she started in this journey, but I don’t support where she took it.

 

Julie