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A Medical Fieldtrip to the Dysautonomia Clinic - A Parent’s Reflections

Posted by Mechthild Maczewski on 31 December 2018 | 0 Comments

Dedicated to all those families who take day trips to the BC Children’s Hospital

At 6pm on a Thursday evening, I am sitting quite comfortably on a BC Ferry. We are travelling from Vancouver to Victoria on our way home from the BC Children’s Hospital, specifically the Dysautonomia Clinic. My 16 year old daughter is sitting beside me and is watching a Netflix show on her phone with noise cancelling headphones in her ears. My headache is tangible in the background of my head but not too bad. It occurs to me that we would see a beautiful sunset if we sat on the sun exposed side of the ferry. But my daughter and I quickly come to realize that we really aren’t able to take in any more outside stimulation and remain curled up in our blue grey seats on the shadowy side of the ferry boat. “I am soo tired” she says. And what she doesn’t say “and in pain.” In pain that is always present, sometimes more, sometimes less. It becomes aggravated through physical and intellectual activity, such as the variety of assessments that were conducted in the Clinic. These day trips take a lot out of us.

As we zone out and relax, a young boy and presumably his parents sit down in the row in front of us. The mother sits at the window, the father beside her. Their son seems about 10 and he has a yellow, thin, rubbery tube in his nose, taped to his cheek leading toward his ear. I try not to stare, but wonder what it is… I feel an immediate bond with them emerging inside of me. Their child has an health issue too. Have they also been to the Children’s hospital? What is their family going through? What is their son so bravely coping with? After a few seconds of resting on his mother’s lap, he decides to take his own seat to the right of his father. His father starts reading a book out loud to him. He has a warm, gentle voice and sounds begin cascading towards me as well. The mother gazes out the window. A penny for her thoughts… is she tired? Worried? Relieved? Organizing what’s next? What I do know is that her love for her child radiated as she provided safety and comfort for him in that cuddle moment on her lap.

Previously, in our one hour wait at the Tsawassen ferry terminal, we wandered inside to replace our long overdue broken phone cases. This is nearly a ritual in our family as there is the most awesome phone case stand there, a highlight of our trip. Does every family have their version of highlight built into a medical day trip? Between the busy terminal shops, by the ice cream display, we bump into a familiar looking family. We recognize a mother with her two girls, maybe about 7 & 11 years old. We actually know the name of one of her daughters, as her name was called many times in the same clinic waiting room. Although we had no verbal or eye contact in the clinic space, we now warmly exchange smiles and hellos, acknowledging that we did notice each other’s presence. Once again I immediately notice feeling bonded through our common experience. I notice the older girl smiling. When I saw her in the clinic she seemed like such an introverted, shy girl with her head down while walking. Such a different, open smile and energy she has, here, in a public space. I am curious about their health issue and their story. What prompted them to make this trip? Did the mother have to take a day off work to come here? Was she not able to find childcare for her other daughter or did the younger sibling want to come along? Are they having something to eat in the terminal? Outside, we see them again as they get into the car that is parked two cars ahead of us in our ferry lineup. To me, our journey feels lighter by knowing that they are having a similar road trip. We all smile at the woman getting into her car parked between us with her mellow, long-haired, orange cat.

This morning, my daughter’s friend, also with Dysautonomia, prepared for her trip to BC Children’s by getting up at 6:00 am and catching the 8:00 am ferry. We got up at 7:00 to catch the 9:00 am ferry. What a gift, I think, for these girls to know someone who is going through the same symptoms, procedures and diagnostic processes, physically, on the same day. Wires being put onto their chests to monitor heartrates when running on the treadmill. Blood pressures being taken. Questions being asked. Telling their story once more. Pain and fatigue increasing through concentrated effort over several hours. Then the anticipation of the final summary of their current condition and the hope for recommendations from the doctor on ways they could try to improve their coping and functioning.

The girls stayed connected from early morning, all day by exchanging texts when possible. They actually see each other physically in the waiting room, quickly, between her friend’s psychologist consultation and my daughter’s run on the exercise treadmill. Happily, they exchange hugs and heartfelt smiles. In their times together in Victoria, my daughter tells me how good it feels that her friend just ‘gets it.’ No further explanatory words are necessary, no need to feel defensive or misunderstood or not heard… just able to be and to be understood. I hope every child with a life changing illness has a friend like this.

I exchange some words with her friend’s mother, wondering how they are doing. How are they coping with quickly exhaustible energy, limited ability to engage in teenage activities, chronic pain, and school requirements? Does her mother talk to friends, have support, do self-care to support herself? I make a note to ask to have coffee for a more in-depth conversation with her one of these days… I don’t really know her at all.

As I am writing these reflections on the ride home, I notice that I feel a warmth spread inside of me, a feeling of tenderness, softness and compassion for all. I notice that it comes from feeling connected with these other families who also face challenges with their child having an health issue. And I ponder why this feels so rare… what is so different in our day to day lives? I realize, with surprise, how seldom I talk about my real day experiences. In our day to day lives, trying to fit into societal structures, it feels that these experiences are marginalized. I notice that I don’t talk in-depth about these experiences anymore, as they are often met with responses of worry, sympathy or ignorance. There is only one mother who I talk to who completely understands. I feel grateful for her friendship. This trip is showing me that there are many other families out there who would understand in a heartbeat. I feel my sense of isolation decrease. Could I increase these connections in my daily life?

I remember another teenage girl in the waiting room, who touched my heart as she laid her head on her mother’s shoulder. Mother and daughter seemed like very gentle souls, and very tired. I wonder why they suddenly get up to change seats. They move to an electrical outlet because the mother’s phone needs charging. They have been here since even earlier this morning. The snippets of conversation that I overhear them having with another family, reveal that the daughter is in grade ‘13’. She is adding another year to complete her school courses. Chronic illness makes it nearly impossible to keep up with healthy, same age teens in order to graduate as a cohort. Accepting a different life activity pace is a common theme for teenagers with chronic illness. And then I learn how much they love their cat. So does our family! Again, that feeling of “I get it!” Pets are unconditional and accepting and there for you, even and especially on those days when we do not feel well, when we feel disillusioned, frustrated or angry at the challenges we face. Although not fond of eavesdropping, my excuse is that we were sitting back to back, and I am happy to be reminded that we are not alone in figuring out how best to navigate grades 11 & 12 and that it may include a grade “13.”

With Swartz Bay coming into sight, I ask my daughter: “Was it worthwhile to go to the clinic today?” After 4 years of being challenged by her chronic headaches and pain, and having tried many available treatment options, right now we seem at a point in time where not much new is surfacing. Was it worth missing two days of school (tomorrow will be out because of exhaustion from today)? “Yes,” she says, “it is good to know they say that “you are doing really well” and “better than half a year ago.” She feels that the path she’s following is confirmed as the right path, even though her level of pain has not changed and no new recommendations were given. People working in the clinic acknowledged that she has worked hard in the past year to do regular physical exercise, to drink hundreds of liters of water, to understand herself, her body, her illness, her emotions. As she gets older, she is taking more active and independent steps to support herself and her health. As a parent, I feel grateful to hear that from her. So much gratitude today! Personally, I also feel relieved that the clinic provides a respected medical perspective that assists us advocating for her into adulthood.

The dad in front of me is now joking about drop kicking his son like a football, and is holding him not quite upside down, but at a downward angle. His son is laughing. And smiling. We connect over the BC ferries announcement that “foot passengers are leaving the ferry today off the bottom car deck. There is no overhead walkway available today.” Does that mean we have to wait a bit longer before unloading as foot passengers embark before our cars? We realize that we save those precious minutes by having been loaded onto and driving off the middle car deck, not the bottom one.

In this reflective mode, I become intensely aware of the tremendous strength and resilience my daughter demonstrates daily as she copes with chronic pain. I also fully realize the strength that comes from compassionate connections with others whose children, whose families are challenged with chronic illness. As families, as parents, as kids, these health issues bring up a deep and wide range of emotions, experiences and challenges. They force us to shift perspectives when thinking about what ‘normal’ life looks like. We have days where we grieve deeply for what could be if not for… On these health journeys we are pushed to expand our horizons in ways that go far beyond travelling from Victoria to Vancouver. As families and individuals, we are challenged to accept ourselves, and to feel worthy, just the way we are.

For myself, after this day trip and reflection, the largest question that remains for now: where do we go from here? What are our next steps going to be? 

For right now, we go down those flights of ferry stairs to the car deck, Deck 4. It is 7:30 pm and darkness is quickly descending. The ferry slowly docks and we drive off onto the island, only another 30 minutes until we are home. Our drive home passes peacefully, quietly, with no conversation. As is typical to Victoria, we see deer. My daughter’s favourite tunes are playing in the car, and she sings along. Another medical field trip day coming to an end.