The Learning Journey

Several months ago, our social worker and pharmacist from the children’s hospital asked if I would record a 5-minute video that spoke to our family’s medical learning journey, on topics such as preparation before and after transplant, what was helpful in gaining knowledge about medications, treatments, and care at home. They wanted my perspective on how information about health is provided to families, what was being done well, what could be done better, and what was on my wish list.

This video would then be shared at an ‘education days’ conference for other medical and transplant staff.

I said yes, and then thought:  how am I supposed to summarize in 5 minutes a 19-year long learning journey?? And then I had some moments of self-doubt that I would have anything of value to say at all.

As it turns out, I ended up having a lot to say, and it was a struggle to keep my video to the 7-minute mark.

The learning journey we’ve had through our children’s hospital has been extensive, overwhelming, heartbreaking, and at times joyful and exhilarating.

Our children’s hospital is amazing. The staff are incredibly dedicated, knowledgeable, thorough, patient, and very kind to Jack. The medical team – from multiple disciplines, not just nephrology – have been a part of our lives for almost 20 years, some from the moment Jack was born and in the NICU. They’ve been there to guide and support us through every phase of his life, including illnesses, surgeries, procedures and countless tests.

How do you explain the medical learning journey of yourself and your family, to medical staff? How do you separate that learning journey from the emotional, human one? You simply can’t. The medical condition is a part of Jack, not its own entity, and so the learning journey itself will evolve over the years in alignment with the emotional one. 

Having said that, if I were to summarize the learning journey, those practicalities of supporting a child with a serious chronic medical condition, I would say I learned the following:

1.        Clear, consistent, communication –  when you have two households, the same message needs to be given to both parents separately. For example, the medical team would email both his dad and I with lab results, any changes to meds or dosages, and further instructions. When Jack was very young, they would call only one of us and then ask that parent to pass along the information to the other. This was a disaster because one of us would feel excluded or would have questions the other parent didn’t think to ask during the call.

2.        A medication chart can be a patient’s best friend – during a really bad period for Jack, he was on 14 different medications, coming from 5 different pharmacies in two different cities. The pharmacist created a comprehensive medication chart, listing out all the medications, the dosages, what time of day it was administered, the purpose of the medication, which pharmacy the med was coming from and the pharmacist’s contact information. It not only helped me immensely when having to re-order his meds, but there were countless times I had to provide this medication chart to medical staff, such as in the ER.

3.        Contact and emergency information – after almost 20 years, I have no need for the medical team to instruct me on how to take care of Jack when he is feeling and doing well. What I need to know is who to contact when he’s not doing well, including during and after regular business hours, and for what situations.

4.        Getting a summary of what occurred during the in-person clinic visit – only one of us would take Jack to his appointment, leaving that person responsible for sharing what was discussed during the visit. Like the first point, often information wasn’t passed along that should’ve been. So the medical team started summarizing the details of what was discussed and decisions made for any treatment changes, etc, and would provide a printed copy of that summary that could be shared between his dad and I.

5.        I’m a person too – although Jack is the one living through this experience, his dad, brother and I support him. His kidney disease impacts all of us, albeit in different ways. After 20 years of supporting him, I freely admit I am exhausted. I work full-time and am raising another child. Our lives are incredibly busy and very stressful, all the time. More than once during clinic, I would struggle to process and analyze the information I received well enough to ask meaningful questions, times I was so tired I just couldn’t think anymore. It was only during making that video that I admitted this to the medical team.

6.        Learning how to say ‘no’ when appropriate – after years of struggling to get Jack to his 8am in-person clinic visits, I just started showing up as close to his appointment time as I possibly could, especially when he was nearing end stage kidney failure. It’s not that I was disrespectful of our responsibilities, but I decided to prioritize Jack’s health and well-being above being 15 minutes late for his appointment.

7.        Ask Jack first – before asking me how Jack is doing, engage him first in the conversation. He’s been practicing, learning the appropriate language and words to use for exactly that reason. If he’s unable to express himself, I’m there to interpret, but my role is secondary.

At the end of the day, what I believe is that the learning journey is Jack’s. This is his experience; this is happening to him. He has a voice; he wants to be seen and heard. He is more aware of what is happening around him than what he is given credit for.

His learning journey has taught me so much. What it means to advocate for someone who can’t advocate for themselves. What it means to be compassionate. What it means to truly love another human being. What it means to accept what you once thought unacceptable, letting go of control for what can’t be changed, or having the strength to move a mountain for the times you can.

All I know is that I want to do right by Jack and Harry and be worthy of them. That’s my learning journey, and another story for another time.