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

Moment to Moment

Disclaimer: Hoping this post reads well. The neurons are not firing on all cylinders these days.

Something happens when Kate has an acute episode of illness related to her mitochondrial disease. Life seems to slow down immensely and takes on a very focussed purpose. The analogy of ‘putting on foot in front of the other’ is the best I can use to describe the sensation. Managing her through each moment of her vomiting – cleaning her off, changing her bed, taking sheets, towels, pyjamas to the laundry room, administering meds (and deciding which ones to give), trying to settle her and repeating it all again throughout the night and into the next day. Each of those steps is a moment. Eventually deciding we need to go to CHEO for care and treatment, and absorbing that decision – that we make so often – and the implications and the stress that it brings with it – it becomes another moment. I pack her bag like I have done so often before. I cancel the week of appointments for the entire family, I call school, I cancel therapy, I cancel personal plans like the long awaited visit to the hairdresser or dentist.  I call into work and tell them I won’t be in.

Everything that is not about this moment of Kate being sick is no longer relevant. And then I dive into the world of acute illness and supporting Kate. I turn inward and rally my strength, contain my tears, and help her get through yet another round of bloodwork, procedures, and IV pokes. I sit with her and stroke her face or hold her and rock her just being in the moment. Our medical team comes and goes, our social worker, a therapist, another CHEO friend may stop by – they help to give a brief reprieve from the moment – and then the focus is back to Kate.

Those first few days when she is acutely unwell she sleeps most of the day. We are usually in a room with no windows. I turn the lights off to let her rest. It is like a cocoon and any sense of what I should be doing that day falls away as I watch her sleep. Over a few days she starts to feel better and then managing a little girl who wants out of the hospital, but still needs to be there, becomes my moment. Minute to minute, builds into hours of entertaining her and keeping her in her bed – maybe breaking things up with a walk and some visiting to the snack shop or cafeteria. The routine is usually the same. Then we get home, and life still does not return to normal because Kate is still recovering and not feeling like herself. Crying, whining, a need for constant attention become the new routine. My six year old who is more like a 3 year old. Carrying her because she wants to be held. Constantly waking at night for comfort or because she cannot sleep due to some sort of unidentified discomfort that she cannot tell me about. But the act of living in the moment cannot be sustained forever, and though she is still unwell and needing care and attention, life slowly starts to creep back in and the pace steps up. All those things that were set aside now return immediate attention. Not little things like the hairdresser and a coffee date with a friend that were cancelled, big things like the urgent priority at work, medical appointments for Kate, banking and taxes, booking summer camps, commitments made that were delayed, groceries. It doesn’t matter that I am exhausted, that I haven’t slept, that my child is still not well. Life has to start back up and demands my attention.

 

Out of Order

Coming back from the month of February has been an act of floating and sinking at the same time for me. Kate was steadily unwell from early December and undergoing regular tests investigating what was going on with her. February resulted in two typical childhood illnesses, a mild stomach flu and a common cold, that landed Kate in CHEO and caused her to be very unwell. The month was spent in and out of hospital, and sleepless due to constant care day and night. I started floating, living in the moment of caring for her – which is the only way it can be done. At the same time, I was sinking as responsibilities piled up that I did not have either the time or energy to address. Once Kate was home and feeling better, I thought I should set aside the time in the evening to catch up, but found I simply couldn’t focus because I was so tired. My brain is simply tired and thinking through the tasks of my ‘other job’ having just arrived home from work feels impossible.  The effect of fatigue is profound. I sink and the pile builds. Kate has pulled me into a pattern of not sleeping, so sugar and caffeine have become my companions struggling to find the energy I need wherever I can find it. I get done in my day what I must, and sometimes I get done what I need to do to get by. I start considering what responsibilities I can set aside.

What I know I need, I cannot figure out how to get. Respite, time from Kate to catch up on our life, to feel settled again, to get into a routine again so that I can catch up on my rest. The resources for respite are slim, and often already booked. Rogers House has been an amazing resource for us, but I don’t leave Kate there when she is unwell. I don’t feel it is fair to her when she needs us.  In fact, I did book Kate at Rogers House this weekend and was so looking forward to it, but we were bumped for an emergency admission. My heart sank.

There is a great motivator for me to get back to a better state, and that is Kate. This disease is endless and it is relentless, and above all it is predictable to the point that we know she will be sick again and soon, we just don’t know when. Our family has lived with SIFD for six and half years. It hasn’t changed, it hasn’t been cured, it is not something Kate will grow out of (my least favorite question). It is with us, it is part of our life and implicates itself into any and all of our plans. I have to find a way to deal with the sinking and the floating. I don’t think the answer can be living in the moment. I think it needs to be planned and systematic and disciplined – but how do that amidst the exhaustion and the sinking/floating feeling. Sometimes you are just to tired to know what you need.

I can see how long term caregiving wears on families and on individuals. I worry about that for me. The comment ‘I don’t know how they do it’ comes to mind, but I already know the answer to it, ‘Because you have to’.  It has been six years, what will the next six look like for me? I know I need a better plan.

How will I deal with constant trauma and stress that comes with parenting and loving a child with an ultra-rare disease which will likely take her from me?

Is it really just a matter of moving from moment to moment.

 

Julie

 

Home Alone

This is my Facebook post from 3 minutes ago:

“Sitting here (still sweaty – haven’t showered yet post run). Have finished my outdoor winter urns and am now sitting down to write a blog post. I feel chilly and though I’m not a coffee drinker, what I wouldn’t give for a warm latte right now.
(Wish I knew how to use our old and decrepit coffee maker. Then again, we probably don’t even have coffee in the house. Sigh.)”

Those of you who know Kate and who are special needs parents yourselves probably stopped at the first sentence, ‘What, she’s sitting down during Kate’s waking hours?!’

Yes I am. And the reason is that Kate is not here. She’s having a weekend sleepover!

About 6 months ago we finally said yes to the team at Rogers House who have been offering support to our family for years. Kate has been supported by the palliative care team at CHEO since she was 15 months – they were the first step to improving Kate’s coordination of care. When Kate was 18 months old, we had our first stay at Rogers House post admission. Kate was still not well enough to be home and we wanted to see how respite would work for our family. On that first stay I wouldn’t leave Kate. Instead our entire family moved into Rogers House for that Mother’s Day weekend. I can’t say it was ideal. I wanted to be home. But what it did do was give us a glimpse into what ‘the House’ was all about and the care the children received there.

Kate did not return to Rogers House until she was 5 1/2 (this past summer). I am stubborn and I am highly protective of Kate. I am also fiercely independent – with a (sometimes misplaced) CAN DO attitude. It’s not easy or natural for me to ask for or accept help. I really have to be coaxed (coerced?) into it.

I also did not want to leave Kate. I have never left her alone at CHEO. I could not imagine leaving her overnight anywhere – let alone for a couple of days. That has never happened with anyone – with the exception of evening babysitters. I felt worried she wouldn’t be safe, that her ability to express her needs – being so limited – would put her at risk, that she would be sad and upset – which wasn’t necessary (I didn’t need a break that bad I would tell myself).

I also felt guilty.

Kate is unwell so often, when she is well I feel like I should be spending every moment with her. I should be maximizing that time and doing memorable family things – or mommy daughter things with her. I shouldn’t be sending her off somewhere so that I can have a break. But I felt a tug of war of wanting to be with her and needing a much needed break from her. Guilt.

So when I do say yes to help, I’ve come to realize it’s when I am totally worn down. Last year Kate’s health was pretty unstable. Her mitochondrial disease is unpredictable and as much as we can string together periods of wellness (touch wood), we also have months of Kate being very unwell. Kate was hospitalized in September, October, November, January, March, and May of 2012 and 2013, and the in between at home wasn’t great. By June I was ready to say yes to someone.

It was hard the first time. Very emotional for me. I stayed for the first day and played and ate with Kate. I met the closely knit nursing team (I already know all of the palliative care doctors). I met the volunteer staff who prepare meals, play with the children, rock them, take them outdoors to play, and greet them at the front door. I met Kat, the amazing child play coordinator whom Kate has come to adore. It never ceases to amaze me at these young (20 something) women who have such incredible empathy, strength and love for our kids. I debriefed the team on Kate – medications she was taking – her likes – her dislikes – what she eats and how often (all the time)- how she might be trying to communicate something to them (a cry means this, a scream means that, this sound means she wants crackers, this sign means she wants to play) – we talked about bath time and bedtime – and how her bed should be set up so she wouldn’t fall out. I told them what an episode looks like and that if Kate had any distress that I was to be called right away. And I trusted that they would.

And then I left her – and I cried on the way home – and I missed her as soon as I left her. I called to check in 2-3 times that first stay. It was an overnight. I couldn’t wait to go and pick her up the next morning. I slowly realized that was more for my comfort than hers. She was fine. The staff at Rogers House are incredible. It truly is a home, and she is treated like a princess. She truly enjoys going and staying there. And after that first stay, our social worker said to me, ‘Ok, let’s book her next one.’ (Carol – never lets me off the hook).

Cooking a cake in the Rogers House kitchen.

Cooking a cake in the Rogers House kitchen.

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‘Helping to clean’ at Rogers House. (Yes, I questioned this picture too!)

Kate at RH

Simply hanging out at Rogers House.

 

We decided as a team – Kate’s team – that keeping her familiar with the House and the routine of going there – would be good for Kate. Kate thrives when she has familiar situations, and if we kept our visits to ‘just when we need them’, the time between visits might be too long and would mean needing to get Kate familiar all over again. (I am beginning to think now this was just a ploy to be sure I stuck with the ‘program’ of getting support and respite time. I am grateful for it.)

Kate has visited Rogers House 4 times now. She is currently on her 5th stay. The team is so excited when they know she is coming. They plan around her. They know she is very active and requires full time supervision, so they plan their volunteers and try to be sure Kat is working. They keep her nurse(s) consistent so that Kate has someone familiar putting her to bed. They adjust to new routines and schedules and to how well Kate is feeling. They know her and they adore her. She is part of their family now. I think this was part of the purpose. Extending Kate’s family – getting her to know her palliative care team more intimately so that she can lean on them and rely on them. I have come to realize in these few short months that Kate needs this. She needs more support than Brian or I can give her. And that support needs to be special – as much as friends and family support her – she needs that CHEO/Rogers House support as she copes with and lives with her disease. When she is admitted to CHEO, hooked up to IV, feeling terrible, she needs to be able to have a visit from Kat and have her eyes light up. She needs Kat to know that she loves stickers and books and Dora – and trust that Kat will bring those to her and play with her and support her. She needs that extended ‘family’.

So I am grateful that I was pushed to accept this. I didn’t want my child to need Rogers House, or to need the care they provide. I don’t want to think of Kate as requiring palliative care. It’s still very hard for me. I didn’t feel like we belonged there. But I realize, Kate is not sick when she’s at Rogers House. She’s sick at CHEO. Rogers House is there to support her throughout her disease – and to support us.

So I am sitting in a quiet house – and it is hard the first 24 hours. When Kate is home, either Brian or I are ‘on’. There is no downtime with Kate, or time when she doesn’t need us – or demand us. There has been little rest between her hospitalizations and time when she is unwell at home. But it is hard to settle into the quiet. I am still not skilled at going to bed on time or getting a good night’s sleep when she is not here. I miss her terribly, and listen for her at night, even though I am grateful for the break. So far we have had Kate stay for 48 hours (2 night, 2 days). The first day I want her home, and by the second day I am ready for her to stay longer.

So far we have stayed home during her visits. This time I am actually home alone (which is so nice). The nurses always ask me what I did with my time when I arrive to pick Kate up. ‘Nothing really – I cleaned, organized, did errands, worked on my to do list’, I reply. They are disappointed, they want me to go for a manicure or pedicure or massage or spa day. But honestly, I feel relaxed by getting things done that I can’t do as efficiently with Kate here. I am starting to plan what weekends without Kate might look like and less focussed on missing her. I think eventually, Brian and I might try a weekend away together during one of Kate’s stays. Apparently that is something couples do. 🙂

For now, I am happy to have the time and space to breathe and exhale.

Julie

Celebrating Small Steps

Small steps for some are huge milestones for us when it comes to Kate.

baby steps

I am grateful that I have Jack who has shown me what it is to be a ‘typically’ developing child – you know – the one who follows (somewhat) the stages of development outlined in all of the many parenting books available. When he was a baby I had underlined and highlighted and tagged pages in my What to Expect – The First Year book. Then as he grew into a toddler, I moved onto The Toddler Years. I marvelled at all of the things he could do, the milestones he met (on cue or ahead of time), and was excited for the things to come. When Kate arrived, I dug out my books and started following along again – ready to celebrate and track and plan out how I was going to guide her and maximize her development with the right toys and playgroups and baby sign language.

When we realized that Kate was not a ‘typically’ developing child. When I started to recognize that something wasn’t right, that Kate was falling further and further behind of ‘typical’, I put that book away and stopped referencing it. Eventually, I threw it out.

And then I got sad and I grieved. And I am ok in telling you this because I am not embarrassed to be sad, to have grieved loss for my child, or to be grieving still at some moments. I have come to learn – my tribe, my special needs and medically fragile parent friends, social workers, some wonderful kids have taught me that it is ok, that being sad is part of this journey.

I still feel sad when I think of what Kate might be missing in life, but less and less do I find myself focusing on what she can’t do and more on what she is doing. Small steps that are huge celebrations.

I love Dora!

dora

Today I bought Kate a DVD for her Christmas stocking. It’s a Dora Christmas video and I was so excited I almost danced at the grocery store. Watching TV, being interested in a show/program, being able to relate what Dora is doing with Boots is huge for Kate. She started showing interest a couple of months ago and it has really caught on with her. Dora videos, games, books, dolls, etc. She is a true little girl with a passion.

I can remember long hospital stays at CHEO – even just recently – when well intentioned volunteers or child life workers would come into our room and offer to put cartoons on for Kate or a video to distract her during procedures. “She doesn’t watch TV” I would say. They would they look at me and not know what to say. What child doesn’t watch TV? What is she going to do for long hours at CHEO? (And it’s funny, because of the parent propaganda out there right now is not to watch TV). I felt like I had to make an excuse or explain that she was behind developmentally and is Deaf, so TV just didn’t interest her.

Well, she’s watching now and I couldn’t be prouder and more excited for her. She sways along to the songs. Claps her hands when the theme song starts and points at the screen when Dora ‘asks’ her a question. She is even signing ‘Dora’, not easy because she has to fingerspell (spell each letter with her fingers).

Yup. Totally proud of this milestone.

Not many people get it. Those that are close to Kate do. Recently we were at our regular appointment with nephrology getting weighed, measured, blood pressure etc. Kate is now cooperative with the nurses (she has gotten to know them) and patiently extends her arm for the ‘squeeze’ as she calls it(“keeeez” she says and signs), and that’s not even the milestone that was most exciting. Being at nephrology, you can imagine that we have to give a urine sample. Until recently, this has meant that I would have to get a sample at home by taping a ‘pee bag’ to Kate as soon as she woke up, wait for her to pee and hope the bag didn’t leak, rip the back off (like a horrible waxing), and then put that sample into a cup to drive into CHEO. This time – a couple of weeks ago – I suggested to the nurses that we might be able to pee in the container that the children typically use in clinic. Kate has been #1 potty trained since August and I thought we could give it a try.

She took that container and marched to the bathroom signing ‘potty’ the whole way. Announcing to everyone in the clinic and waiting room what she was about to do. And she did do it. Peed in that container that we proudly marched back to the nurse. Full display, I felt no need to tuck it away. ‘Yes people, here is our pee, we filled this cup and we couldn’t be prouder!’.

And the best part of celebrating this milestone? The reaction of the CHEO nurses. They danced with us, literally broke into some sort of quick step/tap dance thing and clapped in excitement for Kate. They knew this was a celebration. They knew that this did not follow the book or the list or the guidelines for children her age, but they knew this was special for this 6 year old girl.

And you know what they found to celebrate? Dora stickers! 

I am starting to love milestones – as tiny (microscopic) as they might appear to others, to me they are causes for big celebration and joy. Each and every little one.

 

Julie

 

 

The Littlest Wish

The ocean and pure joy!

The ocean and pure joy!

When you have a child who is not well, your life changes. Your day to day routine adjusts to accommodate the unexpected, your moment to moment thoughts are often preoccupied with planning and worry, and the goals and dreams you had…change.

I find it hard to accept help, to accept offers of generosity and kindness. I am still trying to understand why. I think it comes from a place of fierce independence and a misplaced ‘I can do this’ attitude. The truth is we all need help – and we all need to help each other – and we need to be willing to accept it with a simple ‘Thank You’. The reason I am telling you this – to preface this post – is that it took me a long time to say a simple ‘thank you’ to Kate being granted a wish. To be aware that this was something that I should embrace for her.

There were many reasons why I put this off, Kate wasn’t well enough, Kate wasn’t old enough, Kate wouldn’t appreciate the wish, Kate couldn’t express what her wish would be, there were other kids who needed wishes more than Kate (so wrong).

It took the help of Kate’s palliative care social worker to simply say – “you are doing this”. She made the call to Make A Wish and nominated Kate and our family. She got the ball rolling with enough momentum that I couldn’t say no, and had to simply say ‘thank you’.

The Make A Wish concept is elegantly simple. What do you wish for? What do you want to do, or experience, or who do want to meet, or be most in this world? For the children who participate in Make A Wish wishing seems to come easily. They know what they want to do most.

Kate’s wish was simple, but it was also very thoughtful. You might know from following this blog that Kate can’t express her wish, but she clearly has things and people in her life that bring her joy – and as her family, Jack, Brian and I talked about what type of wish Kate would make if she could and decided we would make it for her.

Kate’s favorite things in life right now: Dora, stickers, gymnastics, school, swimming, her friends (tall and short alike) and her family.

The best wish seemed to be time with her family in a wonderful setting where she could swim as much as she wanted.

It was simply expressed and we put it to Make A Wish to come up with the design.

We were overwhelmed at what they came up with and the endless generosity of the incredible Make A Wish Eastern Ontario. They put together something that we could have never have done on our own – which is absolutely the point of Make A Wish – and they made us feel like the most important family in the world.

Kate’s wish was granted as a fabulous family get away to the Bahamas to a resort where she would have the ocean to play in, pools to splash in, waterslides to slide down, fish to watch, turtles to laugh at, dolphins to hug, and the sun shining down on her. It was an amazing get away – too short (maybe a month would have been better…or forever).

Kate woke every morning with laughter and giggles. Make A Wish had made it possible for her caregiver to come with us – and sleep right next door. Kate would bang her on door in the morning ready to go. She was the first one into her bathing suit (and it had to be the blue one with the flowers), even before we had had breakfast. With her ‘entourage’ (us) in tow, she would be ready for those slides and pools before they were even open.

I guess sunshine, fresh air and the ocean truly do have a healing effect because no less than 24 hours before we were to head to Bahamas for our trip, Kate was at CHEO on IV trying to get her through an episode of inflammatory cascade resulting from her mitochondrial disease. The day before our flight was to leave, I was on the phone with Make A Wish, crying – worried that we wouldn’t be able to make this trip and that Kate would be feeling too unwell to enjoy it. But working with her medical team at CHEO we were able to get Kate feeling well enough and I made a judgement call late in the afternoon, the day before we were to leave, that we would go.

Travelling with a child like Kate is not easy. Her illness can strike unpredictably with acute symptoms that require treatment and management in hospital. Make A Wish and CHEO had worked together to set up an advance team that had been briefed on Kate’s medical situation at a hospital in the Bahamas – the nurse in charge of Kate’s care, should it be required, was from Montreal Children’s Hospital. We knew we would be in good hands if we did need help, and Make A Wish ensured that travelling with our bag of medications would not cause any issues either.

So we went. And it was wonderful. And I felt joy and relief in watching my kids relax and play together. We really took advantage of every moment.

Water Water Everywhere!

Water Water Everywhere!

Kate and Julie3

Kate learned new signs for ‘turtle’ and ‘dolphin’. And it was really wonderful to see her enjoy those experiences. We truly were living a wish because it was not something we could have done on our own.

Kissing 'Echo' our dolpin

Kissing ‘Echo’ our dolpin

It is for you too.

If you are thinking it’s not. It is.

You have been through a lot. Your child has shown more strength, stoicism, and courage than anyone else you know and they deserve to have this special moment and to be celebrated like only Make A Wish can. There are people out there who want to help, and you can say ‘yes’ and ‘thank you’, and believe me, everytime you do it gets a little bit easier.

 

Julie