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)


Leave a Reply