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

Kate’s Story – Loss and Discovery Part 1

Today, November 8, 2011 is the second anniversary of Kate’s bilateral cochlear implant surgery at Sick Kids in Toronto.

When Kate was only a few months old, I suspected that something was wrong with her hearing. She did not turn to my voice, and wasn’t startled by loud and unexpected sounds.  Our family doctor was reassuring and told us that Kate had passed her infant hearing screening test, and her hearing ‘should be fine’.  It wasn’t, at 13 months of age Kate was diagnosed with a moderate loss in her right ear and a moderate to severe loss in her left ear. She was fitted with hearing aids and we began to work with her on auditory and verbal therapy skills.

This post picks up on the summer of 2009 when Kate was 22 months old and tells the story of her journey toward becoming a Deaf child and the challenges, ideals, values, and decisions we discovered as parents and as a family during the journey which continues to this very day.

I had begun suspecting that Kate was not hearing us as she should with her hearing aids. Then she slowly started to be ‘non-compliant’ with her hearing aids; she wouldn’t wear them, she’d take them out regularly, she’d refuse to put them on in the morning. The most disturbing sign that something was different was Kate’s loss of her words. She had begun to speak, and said ‘baba’ for bottle, ‘papa’ for Brian, ‘up up’ when she wanted to be picked up. Slowly, as she could no longer hear herself, these words faded away as gradually as they had started. These were all signs that Kate was no longer receiving information from her hearing aids.

It is difficult to assess a non-verbal toddler for progressive hearing loss. They don’t cooperate in the sound booth, which would be the usual method of assessing hearing loss, and they can’t ‘self report’ what they are or are not hearing. It is up to the parents and the audiologists to ‘guess’ at changes in hearing. For a few months we went back and forth with her audiologists about what she was hearing and not hearing, e.g. did she turn to that sound because she heard it – or did she see the person or thing making the sound? One day we performed a highly scientific hearing test as we sat with the auditory verbal therapist, who also suspected Kate’s hearing loss. Have you seen those ‘hand clapper’ noise makers? They make an infernal racket – highly popular at sporting events or in children’s loot bags from birthday parties. The therapist stood directly behind Kate with one. She was completely out of her peripheral vision, and she wailed away on the plastic clapper. I almost jumped out of my seat – Kate showed no response. The AVT paused, and she did it again, this time as close to Kate’s right ear as possible. Kate didn’t budge. Kelley and I looked at each other – and we almost laughed aloud at the ridiculousness of Kate not responding to the sound. But that hilarity quickly gave way to a moment of comprehension that Kate did not hear that sound.

Kelley called the audiologists into the room and repeated her ‘clapper experiment’ for them. They agreed that Kate would need another BERA to assess the severity of her hearing loss. It would be scheduled as soon as possible. It was November 2009, and we had been through so much with Kate and were so focussed on her health issues, that hearing loss and speech had fallen off our priority list. Brian and I used to joke that hearing loss was the least of our worries.  We felt it was being addressed and we weren’t focussing our much stressed resources there.

Now hearing loss had become front and center again as we faced the possibility that our child was no longer hard of hearing and needing sound amplification, but that she was profoundly deaf and how would her world change. We didn’t know anyone who was deaf. We didn’t understand the challenges she might face. We only knew a little sign language having adopted some baby sign and worked on some ASL skills with Kate. What would being Deaf mean for Kate?

 

February 2010 – Sedated BERA

In February 2010, Kate was scheduled for a sedated BERA to assess her progressive hearing loss. As with most tests requiring a general anesthetic, we consulted with her medical team about any other tests or procedures that might be required by her specialists. Hematology was still tracking her severe anemia , which they had now identified as an idiopathic sideroblastic anemia (I’ll catch up on her blood disorder as I pick up on Kate’s story in future posts) – idiopathic meaning, ‘of unknown origin’, so they were requesting another bone marrow biopsy.

[There is another story around the February 2010 general anesthetic, and I’d prefer to write about it in detail in another post. But what you should know is that Kate had an episode in January, and looking back knowing what I do now, I am certain she was not physically well enough to undergo a general anesthetic so soon after her episode.]

At CHEO, when your child is in surgery (which a bone marrow biopsy is considered), you sit in the general waiting room on the third floor. There are other parents there, and you have no idea what their child is there for. You steal furtive glances wondering how serious their child’s condition is based on their facial expression. You duck your head when their child’s surgeon enters the room, hoping the best for them as they go into the hallway for a short conversation about how their child is doing.

Brian and I have sat in that room before – waiting for Kate and worrying. This time we were calm. We knew the suspicion that Kate’s hearing loss had progressed was quite likely, but we were also in a state of denial and thinking that perhaps we were mistaken. We were also not worried about the general anesthetic as she had had them before, but as I write this, the knots in my stomach and memory of our reaction to the events that were about to unfold come back with full force.

After about an hour, Kate’s audiologists Sophie and Marie – two women who we had been through so much with, and to this day are trusted friends and champions of Kate – came to get us from the waiting room. We expected to step into the hallway and hear how Kate was doing in recovery and what the results of her BERA was. Sophie asked us to step into a little meeting room at the back of the waiting room. In that moment, that breach of not entering the hallway as all the other parents had, but rather being led to a small meeting room at the back of the surgical waiting room – every eye on that room was on us – and every parent knew, as we did, that we were about to receive bad news.

Kate hearing loss has progressed to be profound”. It was as simple has that, a few short words and our world – Kate’s world – changed again.

Nothing could have prepared me for the absolute visceral and emotional reaction that I felt that day in that small room at the back of the surgical waiting room. I felt like a weight was crushing my chest – or maybe it was my heart. I felt tears well up and run down my face, and sobs escaped from me. I was embarrassed at my reaction and overwhelmed by its intensity. I was embarrassed to react this way in front our audiologists, but then slowly understood that they had expected this – or at least anticipated this – and I was grateful at their foresight in providing us with some sense of privacy.

Brian and I had no questions, we just felt sadness and a profound sense of loss. Kate had lost something, something precious had been taken away from her. Something she would never have again. In that intense moment so many images and thoughts raced through my mind. Would she ever say ‘mama’, would she ever hear my voice again, how would this affect her life? We had so many questions and very few answers. We didn’t want to leave that little waiting room, because we knew it would signal the finality of the conversation. We were scared and we were mourning. I thought it was one of the hardest moments of my life and I can remember it like it was yesterday. We had less than 24 hours to absorb the information before Kate would be admitted to CHEO again with a significant reaction to the general anesthetic that triggered a serious episode.

 

Julie

Kate’s Story – Waiting on Tests (and scheduling more)

January 2009

On January 5th, 2009 we met with Kate’s metabolic doctor (Dr.C) to discuss test results that had been orderd during Kate’s November 2008 hospitalization.  In the world of genetics and metabolics, test results are a) not easily obtained, and b) they take FOREVER to come back. Patience is a virtue they say – and you have to be a very patient parent when you have a child who is undergoing genetic testing. Of the tests that were back hearing was not one of them. We were not overly concerned about this, or highly anticipating the results as only 50% of genetic hearingloss have been mapped to this point.  For now, we were just learning about our little girl’s new pink hearing aids and how to fit them in her ears and keep them there without her pulling them out constantly. We were motivated to do the best we could to help her gain language and learn to communicate.  Hearing loss and the finding out if it was genetic in nature was not our priority.

Making Peace with Kate’s Hearing Loss

There was no hope of retrieving Kate’s hearing – what was lost was gone and without a major medical breakthrough, such as growing those little tiny hair cells in her cochlea, her hearing was not coming back. Brian and I would often joke – and sometimes still do – that Kate’s hearing loss was the least of our concerns when it came to Kate. We had so many medical concerns to address, a ton of information and terminology to process and understand, and were at home with a chronically unwell child.  It might be shocking to some parents who are reading this that we were not grieving her hearing loss. Just today at CHEO I met a mom with a little one who had just been implanted at the age of 5. I could feel the sadness radiating from this mom, the fear, the worry – and the hope.  I knew she wanted to talk and I was very gentle in what I said to her. I hope I was reassuring.

How could hearing loss not be devastating?  To lose something so precious. To never ‘hear’.

Don’t get me wrong – we were upset and sad about the news of Kate’s deafness.  At that time we didn’t know anything about being deaf, Deaf culture, sign language, or auditory verbal therapy. We felt very isolated and lost. The community for non-verbal children who were deaf was shrinking every day as the world of cochlear implants was opening up so many options to the deaf world.  We were learning how to read audiograms and how to work with Kate in the sound booth for testing. We had begun weekly auditory verbal therapy appointments at CHEO and were slowly entering the world of working with a hard of hearing child. The Infant Hearing Program in Ottawa had been in touch with us to facilitate support and help us get started on better understanding hearing loss and helping Kate to gain language through additional verbal therapy and sign language. They also provided us with a teacher of the deaf and hard of hearing to work with us as a family in our home.  We also heard about an organization called VOICE that supports families and children with hearing loss, by providing peer support and advocacy in the community.  And I had started attending a specialized infant playgroup at Canadian Mothercraft that was specifically for children who had special needs and were clients of the Ottawa Children’s Treatment Centre (OCTC).

 

We had move beyond devastated into motivated.  We both knew there was nowhere to go but forward and we felt so strongly about helping Kate, we didn’t really take the time to grieve and be sad.

 

Back to metabolics and test results…

One of the test results that had come back was the microarray testing. It was normal. What had also been done at the same time as this testing was testing for the infant thalassemia gene. This also came back as normal. There was still a lot of investigation and confusion into the bloodwork that was being analyzed at McMaster University Health Sciences Centre. There was a rarity and oddity to Kate’s bloodwork, and the research team there still had not determined what was causing her malformed red blood cells and microcytic anemia. Thalassemia was still highly suspected, as was Persistent Elevated Fetal Hemaglobin Disorder, and further tests to examine the alpha and beta markers for thalassemia were requested. A few days later these test results came back as negative.

Amino organic acid disorder was also ruled out based on bloodwork done in late December, but Kate still had a highly elevated metabolite in her blood called alanine. Alanine had shown up as elevated on previous bloodwork tests, and this elevation persisted for couple of years. The problem with this test result is that it really only information and not indicative of anything specific.

Finally we came to our discussion with Dr.C about next steps. Because test results to date had given us no answers, the consideration of a muscle biopsy was back in play. We were told that a muscle biopsy would be 95% definitive in identifying mitochondrial disease. At that time, Dr.C gave a 5-10% chance that Kate had some form of mitochondrial disease. Of course we were very focussed on a diagnosis for Kate and we were firm in our position that she should have a muscle biopsy as soon as possible. I felt very strongly that this was really important to do for Kate and I had no reservations.

As we began to discuss the details of the muscle biopsy, we were also strategizing what other tests or procedures might be needed at the same time. I was very conscious of putting Kate under full sedation and I wanted to be careful about how many times we did this. I put on my coordination hat and started to ask ‘what else’ and ‘who else’ should be involved during this procedure. It had become clear to me that the specialists were all incredible in their own areas of investigation, but when it came to the big picture for Kate and keeping everyone moving in the same direction and on the same page, I was slowly and surely (and unknowingly) entering my new role as medical coordinator.

It was decided that Kate would also have a lumbar puncture while under sedation to test the lactate levels in the cerebrospinal fluid (CF).There was also the possibility that hematology would want to perform a bone marrow biopsy on Kate to get a better picture of the condition that might be affecting her ability to produce red blood cells. Finally, Kate was scheduled to undergo a urodynamic study to test the effectiveness of her bladder and to try and determine if her spinal syrinx might be causing neurological problems. Further investigation into the requirements of this test revealed that it could not be done under a general anesthetic as the bladder may not react as it would if Kate were awake. That nasty test, with catheters in her urethra, and introducing fluid to her bladder to test how much it could hold before it ‘let go’, would have to be done while she was awake.

Dr.C was also very clear that Kate should be taken to the emergency department when/if she had another episode so that critical bloodwork and further tests could be done when she was unwell.

Despite not being hospitalized at the time, we were now visting CHEO more than once a week.

 

Julie

 

Kate’s Story – Coping

The next few months after Kate’s discharge from hospital in November 2008 were filled with therapy visits, clinic visits with specialists, and follow up tests. At home we were still dealing with recovery and a sleepless child. Kate slept about 1-2 hours at a time, waking often, crying a lot, and having a very difficult time settling. The theory was that she was having nighttime reflux from her GERD. There were several techniques recommended: positioning her head higher than her body- which we did by propping her crib mattress up at one end; avoiding feeding her too close to bedtime; ensuring she was getting gas out by burping her and rubbing her back often; trying medications such as melatonin to help regulate her sleep patterns – and increasing her dose of Prevacid. The crying and fussing went into the day as well, and I spent many days in a chair in our living room rocking Kate and gazing out the window waiting for Brian to get home (counting down the minutes). Those were dark days – difficult.

As I write Kate’s story and reflect back on my journals and notes, it is not difficult to remember how hard those days were. But what I can’t seem to conjure up is the emotion that I remember I felt at the time. The incredible stress of sleeping only a few hours a night, of listening to her cry and knowing she was uncomfortable, to feel so helpless in finding a means to ease her discomfort. Days and weeks spent pacing the house, walking with her in the stroller, pacing the house again and not knowing what I could do to help her feel better. Worrying about new medical conditions and tests that would take months to bear results. The fear and worry and intense stress that dominated our home life. Those emotions don’t come flooding back, it is something that is missing from Kate’s story, and I recognize that as a survival mechanism.

‘They’ often say that women don’t remember childbirth for a reason – because if we remembered all that pain and discomfort, the human race may not exist. (Who in their right mind does that more than once?). I think it is the same with trauma with a chronically unwell child. It is a traumatic situation to deal with  a medically complex and fragile child. Trauma is described as, an emotional wound or shock that creates substantial, lasting damage to the psychological development of a person, often leading to neurosis.  I don’t think I’ve reached the neurotic part yet, but I have certainly experienced a panic attack or two, and I have experienced events with Kate that have caused great distress and disruption. So I guess I choose the word trauma as the best way to describe what we have gone through with Kate so far.

I can recall most of it with the help of my notes. What details I don’t remember, I’ll often be surprised by being reminded by friends or familiy of specific Kate stories. They will recall details that I just don’t remember or had forgotten. Often you can’t even come close to recalling the intense emotional and physical stress of many days. I think it is a survival mechanism. It is what allows you to carry and on and move forward. When people say to me, “I don’t know how you do it?”, I think my answer is I don’t really know either, but there is a basic and innate human instinct that let’s things fade away so that you are not loaded with that emotion and trauma until you can’t handle it anymore. There is always a ‘fade’ rrom the previous traumas that allows for you to handle more. It is pretty incredible.

I think it also explains my 5 minute memory. Honestly, my retention for information that by mind/brain might not catalogue as ‘Kate Urgent/Important’ is almost nil. Details, people, events, and conversations enter a sieve in my brain and don’t stick. It wasn’t the case before Kate – but I think it is understanble and most people in my life get it (and laugh about it in a nice way).

Certainly the description of the emotions and feelings that traumatized people experience makes sense to me. I have travelled back and forth through all of these emotions for more than 4 years now:

Frightened …. that the same thing will happen again, or that you might lose control of your feelings and break down

This is day to day for me. I worry about Kate constantly. Constantly. I am always watchful of her behaviour; is she tired? is she walking well – is her foot dragging more than usual? is she pale? is she irritable? has she eaten enough? is that a cold? does she feel warm? When she does have an episode I am frightened as to what might be different and if she will get through the episode well. Being scared and worried (which I use to better describe ‘frightened’ for me personally) is a pretty constant state. I spend a lot of emotional time here.

Helpless …. vulnerable and overwhelmed. Helpless to help Kate and to prevent what was/is happening to her

I have felt helpless.  I counter it by taking charge, asking questions, researching, and finding moments where I can DO something. Helpless is not where I spend my emotional time

Angry …. about what has happened

Yes. More in future posts.

Guilty ….. feeling that you could have done something to prevent it. That I could have done more/faster/sooner/better

Doesn’t every parent have a natural state of guilt. “Am I doing enough for my child? Am I doing it right? Could I be doing more, or doing it better?”. The guilt for special needs parents, for parents with a medically complex and fragile child brings this to a whole new level. The state of guilt for us is pretty much constant and is countered by us doing anything and everything we can for our child every moment of every day.

Sad ….

Of course.

Ashamed or embarrassed …. that you have these strong feelings you can’t control, especially if you need others to support you

Um, yes. Somedays I can’t believe I have shared what I have on this blog. Please don’t think I am an angry, sad, emotional mess. All is well. (Thank you for everything, all of you.)

Relieved …. that the danger is over

I go through this in waves. When Kate comes through an episode. When a test result comes back and is ‘negative’. When we think she is ‘going down’ and then seems to recover on her own at home. Relief is a oft visited emotion. Together, Relief and Fear are a crazy rollercoaster.

Hopeful …. that your life will return to normal. People can start to feel more positive about things quite soon after a trauma.

I do have hope. I am not sure what ‘normal’ is. Returning to normal is not an option for us.

December and January 2008 were spent attending physiotherapy appointments with Kate to help engage her hypotonic body in more typical gross motor skills. We worked on sitting, rolling, crawling, standing and talked at length about equipment to use at home to help facilitate Kate’s motor skills, and positioning techniques. Kate was not crawling but doing a sort of one legged scoot across the floor. She relied heavily on the left side of her body for support and one technique was to use obstacles to make her engage her right side more. Kate and I visited the physiotherapists every 1-2 weeks. (Hope)

Occupational therapy at the children’s treatment centre had also begun for Kate. She had been accelerated off of the waiting list and we were able to let go of the private therapist we had been paying for. OT set up strategies and plans to work on developmental skills that are more fine motor in nature and also cognitively appropriate for the child’s developmental age. I found OT very frustrating in the early days. I was determined to be a good mom be sure Kate engaged in the sessions, but in the first year or so, Kate really disliked the approach to OT and often cried for most of the hour we were there. As I look back now, I wonder how much we were pushing something she just wasn’t ready to do, and how much stress we were putting her through. (Guilt)

Audiology had assigned Kate an auditory verbal therapist (AVT) since her BERA had shown moderate to profound hearing loss. This was our first meeting with KR, Kate’s much love AVT, and the person who I would say knows Kate the best in the medical/therapeutic field. She is a much trusted therapist, friend and advisor to our family and you’ll read more about her in future posts. This first meeting was really an opportunity to have the entire team meet, including Kate’s incredible audiologists, to review her hearing test results and discuss the plan moving forward.  We discussed the type of hearing aids Kate would have, and picked a cute pink pair for her. An impression of Kate’s ear would need to be made for her earmolds and we were put in touch with a hearing aid company to have that done. We were educated about audiograms and how to read them. We were being prepared to move forward into a new world of hearing with Kate, despite feeling so many emotions. I am still grateful to the ladies on this team for their gentle and firm hand in moving us forward on accepting Kate’s hearing loss and refocusing on how to best help her hear. (Hopeful, Relieved, Sad, Angry)

Occupational Therapy specializing in feeding was not going as well. Kate’s eating habits were inconsistent and challenging. She was still nursing, which could best be describe as messy. She had difficulty swallowing food and a session of eating solid food could take hours. Kate was eating very little and we were painstakingly tracking everything she put in her mouth to ensure she was getting even close to the number of calories needed. GERD was clearly an issue as was her hyptonia that was thought to be affecting her oral/motor skills of moving food in her mouth, chewing and swallowing. (Frustrated)

December 5, 2008 Kate had another episode. It started with constant crying, and what the doctors had come to call ‘irritability’. We adopted this term as well, but as I look back now I know that Kate was in a lot of discomfort and often in pain. I feel a lot of guilt about not pushing back about calling this physical distress my child was in something as simple as ‘irritability’ and have come to learn a lot about pain in young children. We called Kate’s GI doctor as we thought Kate’s GERD might be part of what was going on. We considered taking Kate to the emergency department as had been discussed with Dr.C during Kate’s November admission. Finally we decided we would manage things at home with Kate for as long as we could as she was not vomiting. We stayed in touch with her pediatrician and the family doctor and ‘rode out’ the episode for the next 6 days. We know now how hard this must have been on Kate. (Angry, Guilt)

Julie

Dealing With Loss

I am still not sure I like the title for this post. This title could be used for many of the posts that I want to write about. I think the reason I keep coming back to it for this post is that as I reflect back on Kate’s story so far, this is the first time I really cried and felt the pain of loss – that my little girl had lost something a part of herself that she didn’t deserve to lose.

Kate’s initial hearing test at CHEO was done in a ‘sound booth’ and she was checked for responsiveness to sound. Because the findings were inconsistent, Kate was scheduled for a second test in November. This time 2 different audiologists worked with Kate. These ladies were wonderful with her and were able to have her cooperate as well as a 1 year old could be expected to. Still, Kate’s hearing test was ‘inconclusive’ as her reponses were not reliable.  They discussed with us the fact that Kate had passed her infant hearing screening test and told us there had been otoacoustic emissions at that time, which indicated that the hair cells in the cochlea had been present then but that they appear to be gone now. They told us this was a ‘red flag’ and means the echoin the cochlea, which carrys the sound to the hearing nerve, is either weak or gone.  They were also listening to our experience and story about our concerns for Kate’s hearing and took those into account.. They wanted to further investigate Kate’s hearing by conducting a sedated hearing test called a brainstem evoked response audiometry or BERA. This would provide evidence if Kate’s lack of response to sound was her hearing, or if it was something more cognitive in nature and part of her global developmental delays. The test would require that Kate be sedated and the plan was to coordinate with neurology to do the MRI at the same time.  We didn’t go into details about what hearing loss would mean, whether it would be progressive, if Kate would need hearing aids, or what therapy might be required – but those were all questions I had.

On November 18th, 2008 Kate had a sedated BERA (and MRI). The BERA was positive for hearing loss. I can see the moment clear in my mind as the day we heard this news. Kate was still hospitalized with her 4th episode. We had been receiving endless information about other serious medical conditions. Kate was still not well and we were worried for what might be next. She had undergone an MRI during her BERA and we knew we would be speaking with the neurologist and neurosurgeon later that day. In fact we were sitting outside the MRI suite when the audiologist came to give us the news that they had confirmed Kate had ‘significant’ hearing loss.

I was taken by surprise at my reaction to the news from the audiologist.  I was stunned.

I tried to explain away in my mind that they c ould be wrong and that they would need to investigate further. I clung to Brian. I wanted someone to say they were wrong or had somehow made a mistake. And then I knew it was true, because all this time I had been advocating it. I had been telling them she could not hear me. And here I was faced with it and coming to the realization that they were confirming my fears. And this all happened in a moment. And I cried – I really cried. I wept out of pure emotional exhaustion, I wept because something had been taken from my child that she would never get back.

 

Reflecting back on that moment now brings back so many memories. The perspective I had then really informs the perspecitve I have now. Be grateful for what you have – try not to mourn the losses for too long.  Move forward.

 

Julie