A Random Post

There are so many potential posts swirling around in my head lately. I want to capture them all, write about all of them, be eloquent and exciting and detailed about all of them – but I fear losing them. So I am going to make an attempt at dumping them all here – as short summaries – in one blog post. Hope it works for you. (Hope it works for me).

 

Summer Fun and Challenges

Summer is supposed to be fun. Care free, memorable, full of family time.

Care free is difficult when you have a medically fragile child and one who has developmental challenges like Kate. You never have your guard down, even when you seem to be in the most ‘relaxing’ of of ‘summer fun’ situations, e.g. at a friend’s cottage, at the park, swimming at the local pool. You are constantly watching, managing and worrying. And ‘constant’ in the key word here. There is never a down moment. There is no leisurely time by the pool, dock, lake – and there is no time when your aren’t planning ‘what’s next’, e.g. food, medications, feeds, energy management etc.

It is not a normal life and summer is not summer fun. We have good memories – we enjoy ourselves with friends and family (especially those who ‘get it’ and help with Kate), but it is not easy and sometimes we long for routine and for a break.

I feel a small amount of guilt as I reflect on our summer. A family holiday gone awry due to an episode of Kate’s SIFD, having to adjust things for Jack constantly and not spending as much time with him as I would have liked, feeling like this summer slipped away somehow.

 

Breaks

Child care costs and arm and a leg. Many parents off set this with camps in the summer. But what do you do when you 7 year old child can’t attend the ‘typical’ summer camp? What do you do when you are paying your specialized one to one caregiver 8-9 hours a day so that you can go to work and make money  – to keep your job and pay your caregiver?

In our case, we do just that – we work to keep our wonderful caregiver and we try and normalize Kate’s life an find her opportunities to attend day camps – like other kids.

Kate has had two amazing camp experiences this year. And we are so happy for her to have had the opportunity that other kids have had. She attended a Deaf camp this year for the second time. Yes, her caregiver attended with her, and yes she got tired and needed that extra support. But she loved it and had such an amazing time with other children who are Deaf and hard of hearing from the community. It is a small community, but the children embrace one another and there was so much support for Kate. A wonderful time for her.

And then she attended gymnastics camp for two weeks, and yes it had ups and downs for a child who has an energy disrupting disease that might not be able to keep up with the ‘regular’ kids. But she was fully supported at OGC, and our experience there has been amazing. Kate has been a gymnast since before she could walk independently and there was a never a question from OGC about how she could participate. They simply asked what she needed and they made it happen. Kate went to camp 2 full weeks this summer – drop off and pick up – no mom involvement needed -and it was hard for her, but also fantastic. Fantastic. I will be forever grateful for the OGC team.

And then there the wonderful friends who ‘get it’ and offer to take Kate to the park, or for a swim, or take a turn being vigilant at a cottage, or chase her around the yard at a neighbourhood barbecue. And we take it in stride, but are grateful for the break. The break in vigilance, the break in the constant humming of watchfulness.

 

Ignoring CHEO

And I mean this in the most respectful way, but not having to engage with CHEO unless absolutely necessary has been great. Clinics slow down and don’t want to see us, and the demands are a little less. Kate was sick in July  and needed to be hospitalized (ugh), and she had weekly transfusions of her immunogloblulins which required us to be there for a few hours a week (ugh), and she needed bloodwork  a few times (ugh). But we did slow down on our interaction and visits a little and it was nice.

 

Episode

What would summer be without an episode her SIFD becoming acute??

Really, doesn’t everyone have their only 2 weeks of summer holidays interrupted by a visit to the emergency department and an acute hospitalization?

Eff.

Enough said.

 

Preparing for School

Such a love / hate relationship. Get us back in to routine. Now!

Dreading the constant to and fro of managing Kate’s symptoms and her health. And this year, starting at a new school and worrying about what that will look like and how that will be managed and what the issues might be that will come up (cause you know they will  and no – they are not the ‘typical’ kid issues).

I have been working since late July to get school transportation sorted. It hasn’t sorted yet and school starts in less than 36 hours. Sigh. My special needs community is probably right, this won’t be sorted out for a a week or so and I will likely be driving Kate myself.

We have a new teaching team, therapy team, specialized services team, principle etc. How to direct and manage all of them and be sure Kate has the best experience she can.

Point of reference: I send Jack to school with a solid lunch and back pack stocked with school supplies and end my worries there.

I know the daily phone calls from school are about to begin and I am ready. Not dreading, just resigned that this is the price to pay to have Kate attend school. And I have my moments – many of them – when I wonder if sending her to school is ‘worth it’, then I remind myself of the break and the need for her to at least be around other kids that are somewhat close in age to her.

 

And so this was summer.

Sunny days watching Kate ‘swim’ and slide down the slide at the local pool.

Watching her ‘tube’ behind a boat for the first time.

Marvelling at her being the first into the lake – every time.

Listening to her giggles as we exhaustingly give into her endless requests to go the park in the late evening.

Watching her skin tan and bronze (with sunscreen) and leave a tell tale tan line where her NG tube changes sides each month.

Watching her suffer through a ‘cottage’ weekend with an episode and finally deciding the cottage week of fun was not to be this year.

Letting Jack tow Kate behind him in her own kayak – and feeling a warm glow knowing he has his sister’s back.

Checking on Kate in the late evening before we go to bed and listening to the contented snoring of a child who has had busy day.

Knowing she has had a solid summer of happiness and realizing that this is a gift. Her 7th summer with us.

 

Happy summer 2014 everyone!

 

Julie

 

 

 

 

Change

In the past few months I’ve entered new territory in the ever-changing journey of caring for Kate.  As her mitochondrial disease evolves, change in her condition is expected and some say inevitable. And the change is not positive, it is thought to be degenerative in a progressive way. Those are hard words for a mom to hear. They are even harder to absorb and truly understand. What makes the words more tangible is when the change involves change in Kate’s care and her routine, and that is what we have experienced in the last few months. It is not change that you would typically expect with a growing and developing child, the change that comes with parenting a ‘typical’ kid. It is the change you worry about, hope doesn’t happen, wish you didn’t have to cope with, co-ordinate or assimilate into your life as a caregiver, ‘nurse’, and complex care coordinator.

Kate has weighed about 15kg since January 2012, give or take. She hasn’t grown much in height either. She is tiny, and by measurable medical standards she is below the 5th percentile in growth – if she even makes it onto the growth charts. The fact that Kate is tiny and undersized for her age is not lost on anyone, but it has not been the front and centre medical concern with so many other competing and more pressing issues to address. Kids can be small and ‘slip off’ the growth charts, but when your child is living with a chronic disease and suffers from frequent acute illness, weight/height/size and growth do matter.  This past spring, with constant ups and downs with her mitochondrial disease, her ‘failure to thrive’ became more of a point of discussion, prompted by me asking the team ‘what can we do’. Those four words caused a flurry of excitement and activity.  Kate’s complex care team jumped at the opportunity to engage me in considering this intervention for Kate. Her medical team had discussed with us options for enteral feeding for Kate before – but neither Brian and I were comfortable taking that next steps, and I now realize Kate’s medical team was waiting for us to be ready (and hoping we would be before they needed to strongly recommend that direction). Before we could step back from the conversation, a nasal-gastric (NG) tube was planned, equipment was ordered, and training was organized for us. I didn’t have time to backtrack of second guess – I think they’ve learned to act fast with me.  So here we are now, 4 months later, and the use of the NG has become part of our daily routine (3x / day). It has become so second nature that we can do it at the park, we travel with it, we teach others to do it (as needed), even Kate gets involved in flushing her NG tube and helping with the delivery of medications (very messy).

And the result?  Kate weighed in at 16.2 kg this week. The heaviest she has ever been. She has also gained in height. She is growing.

Happy Mom Face!

 

Happy_face

 

 

On Monday, another change. For the first time ever, I poked Kate.

Unhappy Mom Face.

face

A child like Kate endures at least 100 pokes a year (an estimate by our complex care doctor). Nurses, phlebotomists, veinous access team, ED staff – all take stabs at her. I often marvel at that particular job in the hospital. Of all the paediatric medical jobs there are, poking kids all day long – day after day – has got to be the least rewarding. Who goes to school to study that? Really? (I have the upmost respect for them, and I adore the ‘go to’ members of this team who are the ‘vein whisperers’ and can get that IV in on the first poke). When Kate sees the ‘blood cart’ she knows exactly what is going to happen, and because of the difficult access to her veins as a result of too many pokes over so many years, and the resulting scaring, she can’t use the ‘freeze creams/sprays’ that are offered and can help distract from the whole process and minimize the pain.

Kate has needed to start on immunogloblulin treatments because her compromised immune system is slowly deteriorating and is in need of support (insert another sad mom face).  Typically immunogloblulins (IG) are given via IV (intravenous) once a month in hospital. Unfortunately for Kate, the amount of IG that must be given intravenously was too much for her system to handle and caused an inflammatory cascade, or a triggering of one of her ‘episodes’. The option the Infectious Disease team (who take care of this aspect of her medical management) turned to was the recent development of sub-cutaneous delivery of IG (SQIG).  SQIG is a weekly infusion of IG that can be done at home – after the parent (mom/me) knows what the hell they are doing and get over their ‘fear factor’ of needles. Seriously – I am terrified of needles, but surprisingly I seem ok giving them to someone else. Phew.

So this is what we have landed on for Kate in the latest chapter of life with this disease. An immune system that is failing. The need for a lifetime, weekly, blood product to keep her going – to keep SIFD at bay. And so this new level of caring for Kate, where I am now injecting her weekly with immunogloblulin. I am the one doing the poking.

Fortunately, when I poke Kate, the injection is SQ (sub cutaneous) – just under the skin – and I can freeze her. This has made all the difference and Kate is very co-operative – even helpful (too helpful) – with the process. Still the task feels daunting and I still have 2 more infusion sessions to go with our nurse guiding me before I am sent home to do it on my own. I hate the learning curve. I hate feeling worried that I will do something wrong and hurt her. I know the confidence will come, and that at some point I’ll be quite cavalier about the entire thing – amazing friends and family with my needle wielding skill. But right now I feel overwhelmed, a little intimidated and a little scared. I don’t want this. It makes me sad. I don’t want this change, this evolution in her care in her disease. I just want to be her mom and go to the park.  I want to find that ‘normal’ place, that consistent place where life is just a little more predictable for us and for Kate. Everything I am being told about this disease is that this is not possible, that the unpredictability is what we can continue to expect and have to manage.

I wonder what is next?

 

Julie

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