Rachel Martens: Advocacy, Parenting & ‘Callings’

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Rachel Martens is a mother, caregiver & advocate for disability policy, caregiver well-being, parent engagement, patient research, social media & rare diseases.

Among many roles, she works with CanChild on the Research and Knowledge Translation Support Team.

Blog: Coffee and Research • Twitter: @RaeofSunshine79 • Calgary, Alberta.

 

“Our calling is not what we do so much as it is who we are while we do it.”
-Jamie Wright

 

About six years ago, I used to work for a clothing store that had two locations split by ages…merely two doors down from each other. The baby store always made three times as much in sales than the kid’s store did. There was a common inside joke that this was because with babies, you’re selling the dream.

With kids, your focus changes and it’s all about “How much is this going to set me back?”.

Parenting encompasses all manner of shifts in experiences that are understood as just part of the package deal that you sign on for. We accept everything from the sleepless nights and dirty diapers to the talking back, the dating, the marriage and grandkids.

In all that roller coaster of change…we so often want to do it all over again.

That life roller coaster has a way of shifting in length, speed and overall ride quality for a great many reasons. For me I can say that I didn’t get too far into the ride before things came to a halt and I had discovered some parts of the ride track hadn’t even been built yet.

My fierce little guy was born three pounds and seven ounces at 36 weeks and I couldn’t have asked for a more medically stable newborn given his unusual size. Was almost symbolic in a way… because for many reasons, he was an unusual fit for a system that was meant to support him.

When we were finally able to take him home, I brought him to my doc for his first follow up. I to this day am thankful for a GP who was forthright with me. She told me my family would never be cut out as one who could functionally live in a small town and told us to move to the city. In her mind, no smaller centre docs would touch him with a ten foot pole.

No regrets there when we decided to move, as I was averaging 1-3 specialist appointments each week. We had about four months of finding our groove as a family when I learned the other end of the spectrum of patient centred care; things that were far from the definition.

I got a call from our geneticist who, in retrospect, I imagine was just trying to clear off their docket before Christmas holidays.

I got a call Christmas eve day… stating that a diagnosis had been established and that due to privacy regulations they couldn’t discuss it further. They then added that they will see us in February.

A caring consideration could have been that this was our first Christmas together as a family… and a few days in ignorant bliss wouldn’t have hurt anyone. A call on January first would have been sufficient given we weren’t seeing them till the end of February.

In the span of a five minute phone call, our first holiday had my husband and I emotionally broken… wondering what our future would look like.

This August will mark twelve years of motherhood, a milestone that I am completely in awe of; I am the mother of a tween! I find birthdays objectively a thing to be celebrated, but emotionally I find even still I have a measure difficulty in processing them. It’s not as though I compare our lives to those of his cousins who are a similar age; thoughts like that are a thief of joy and not worth my time.

When your life is so absorbed by the health of another, you can lose yourself a fair bit in the mix. When you co-parent your child with multiple clinics, some periods of time are immersed in denying oneself basic needs in order assure their survival. One can exist in modes where you can rattle off a medical history at 2am with scary efficiency and completely blank out on the question as to whether or not you had eaten.

Then, in the quiet moments where all the stars align and everyone is healthy-ish and stable, we set out to create life experiences for a little boy who just wants see it all.

My husband and I are determined to be his tour guides.

None of this could have been accomplished without the long-term relationships we’ve developed with health care.

My little family gets by on just a hint of humor about how we spend our days. We lovingly joke about the hospital being our second home and have dubbed it as our vacation spot: “Club Med”.

To be so dependent on health care allows oneself to take notice of a lot of the intricacies that can either make or break experiences. Many of these details if done right, would escape the notice of short term users but still contribute to provide them having optimal experiences.

For parents like myself, many of these details affect my ability to keep my child safe and provide a positive mental health experience for my whole family. Being so intimately connected to the system really leaves you desirous of giving back to a team of people who have given your family so much.

Giving back first came as sharing our story for hospital radiothons. My son’s diagnosis is super rare so we felt a therapeutic reward for not only helping raise funds but spread public awareness on rare disease.

To share our story, though, provides this unintended assumption that after sharing on the radio, somehow our story was over.

His birth was only part of the picture!

Who do I share the story of my frustrations with the system?

Who do I talk to about the poor transcribing of my sons medical file that in his first two years, over half of it stated he had down syndrome rather than trisomy 22?

Who do I talk to about having gone through seven years of parenting without being told about pediatric palliative care and how it can help my family?

I was a mom with ideas and no place in which to put them. We, in a sense, had to wait out the science of complex care… which led to two major moves across provinces to seek other forms of support.

We see less clinics nowadays, the main reason being our “fight” mode is over. He’s going to do what he’s going to do health wise. We made our peace with the fact that every day with him is an absolute gift and that his future remains unknown.

What I did not expect from this decrease in appointments was my sudden loss of identity in all this. I found myself quite depressed…not knowing how to move forward. I’m thankful for a talk with a fellow medical mom who told me I needed a new identity, and to take this as an opportunity to find myself again.

In this search for a new identity I had an opportunity to teach and encourage others with my artist side. I teach crochet at the sweetest little yarn shop in town. My job really is less about teaching method but more encouraging others through their negative inner self talk assuring them they’re capable of doing anything.

In engaging other sides of me, it left room to see where my medical parenting experiences could put something positive back into the world. Another fellow mom introduced me to patient-oriented research and offered opportunity to blaze new trails…connecting families like mine with researchers in the field who care deeply about stories like mine.

I may not understand why the universe decided my life should head in the direction of complex care. A part of me will always remain with an open wound in my heart. I learned once from one of my favorite authors though that all feelings are an energy… and you get to choose what to do with them.

Whether or not I one day reconcile with all this remains to be seen. In the mean time… I choose to walk in kinship with health care seeing its potential for so much more. I will help build bridges between families and professionals that did not exist previously. I will repair the ‘life roller coaster track’ that wasn’t built for me, early on.

It’s in all these very human connections that I find identity. So little of what I do is about fighting “the system” but more showing the strength and capabilities of immersed in health care stakeholders like myself. I think back to my first conference poster presentation and running into one of my son’s docs who was shocked to see me there.

“You just didn’t recognize me because I’m not wearing yoga pants and tightly clutching a Starbucks.”

Points for humor, new connection made.

It was his caring spirit for my son and for me that was one of many steps that helped get me there.

 

We all have passions, concerns and meaning apart from our ‘caregiver identities’. Thanks to Rachel Martens for opening a window into those personal aspects of her life, thoughts and journey as a person, teacher and advocate. 

Last Updated On September 20, 2018

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