Being a parent is a hard job. Twenty-four hours a day, seven days a week, it challenges your knowledge, skills, and capacity. All of a sudden, you’re responsible for a tiny, vulnerable person who requires you to know exactly what they need with little practice or assistance.
When your child is diagnosed with a serious illness, the task of parenting can seem insurmountable.
As a new parent, I read all the parenting journals, researched how to meet my son’s needs, and engaged in every playgroup, read-and-rhyme time, and child focused activity you could imagine. Despite all of my attempts to be a prepared parent, at 11 months, my son quite innocently pulled on the cord of a lamp and caused himself a concussion. This concussion led to a frantic trip to the hospital with a hysterical baby who was projectile vomiting for a CT scan to rule out a skull fracture.
Thankfully, there was no skull fracture. What was revealed, however, was an area of concern – a cyst-like area that required further investigation. All of a sudden, specialists were assessing my son’s case with concerned faces and hushed tones. At this stage, I had no concerns about my son’s development. The possibility that he may have experienced a brain injury was horrifying.
The next few weeks were a flurry of MRI scans and pediatric, neurologist, eye specialist, physiotherapy, and occupational therapy appointments. In the end, it was revealed that my son had experienced a stroke at some time during his first 11 months, which had caused the destruction of several areas in his brain.
My world was suddenly filled with medical language that was both confusing and concerning, “helpful” information and support from family and friends, questions about my son’s capacity, and sleepless nights of worry.
After a week of wallowing in our situation, my husband and I decided it was time to take control. The following steps helped us cope with our son’s illness and maintain our sanity:
1 | Avoid Dr. Google
Google is not the place to get answers, unless they are sites recommended by medical professionals or you are accessing support groups. There’s a lot of bogus information out there. I think that is enough said on the topic.
2 | You do not need to be a medical expert
We met with so many doctors about our son’s diagnosis. Each doctor had his or her own speciality and was highly skilled and knowledgeable. At first, we left each appointment bamboozled, trying to remember the words the doctors had used so we could look them up later.
To feel more prepared for these meetings, we made lists of questions we wanted to ask. We also assigned roles for each meeting. One person would be responsible for asking questions, and the other would take notes so we could review the information later.
We also started to ask for information. If anyone spoke about a diagnosis or a test, we would ask for a fact sheet. Surprisingly, most doctors were happy to print off information for us to take home. We started to leave appointments feeling informed and actually understanding what was happening to our son and why.
3 | It is okay to get a second opinion
Our son’s stroke caused significant and permanent damage. Our neurologist asked to present our son’s case to his fellow neurologists to seek input on the best treatment plan. We, of course agreed; in the case of medical treatment, the more the merrier! This led us to question some of the recommendations made by our treating doctors.
We decided that, before making any significant decisions in our son’s care, we would seek a second opinion to support the recommendation. If that recommendation differed, we sought the outcomes for both pathways, deciding on the best and, where possible, least intrusive option for our son.
While I understand that this is not always possible, you can always ask your treating professional about other options and why they have chosen this specific treatment.
4 | Learn to say thanks, but no thanks
The minute people found out that our son had experienced a stroke, they wanted to share their stories about people they knew who had strokes or children with brain damage. It’s how people try to connect and normalise your experience, but honestly, it was largely unhelpful and annoying.
In the end, I started to say, “Thanks for trying to share, but we are just focused on our son’s diagnosis. We aren’t comparing him to other people, because we don’t want to set up expectations or limitations.”
All in all, most people were happy to take our feedback, and the “I have a friend…” stories decreased dramatically.
5 | You need to take care of you
After my son was diagnosed, I became so focused on his health that I completely neglected my own. It didn’t help that I was six weeks pregnant with his sister at the time, but my body suffered. I became plagued with every virus imaginable, overall fatigue, and went into decline. It wasn’t until my obstetrician commented on how different I looked this pregnancy that I realized I had forgotten myself in the process.
When I started taking care of me again, everything got a little bit easier. Simple things like eating frequently and healthily, making sure we took turns to help my son at night so we could both get sleep, and taking at least 10 minutes to myself each day helped to re-balance me. I felt far more equipped to deal with medical appointments, doctor’s jargon, and meeting my son’s needs.
6 | Make humor your friend
I’m a firm believer that laughter is the best medicine. We would not have survived this journey if we hadn’t been able to laugh at our situation. After the shock had worn off, my husband and I were both able to joke about the fact that my son had been cleared of one serious injury only to be handed another.
When our son does something endearing but inevitably…let’s call it quirky, it has become a standing joke to say, “Well, he has had a stroke.” By quirky, I mean like when he smelled each piece of our clean laundry last week and said which family member each piece smelled like. I mean, you have to kind of hope that is the stroke, or else he’s going to be some kind of Sherlock Holmes.
7 | Access your support networks
People will offer to help you. TAKE THEM UP ON THEIR OFFER! You are not an island, and it takes a village. These may be clichés, but they are true. You will get tired, you will get overwhelmed, and you will need someone who can share the load.
Call a friend when you need to debrief. Let your mother do the load of laundry. Invite your brother to the doctor’s appointment. Doing it on your own may seem brave, but it’s a fool’s errand. People want to show their love and support. Allow them to help you in practical ways.
8 | Don’t set limitations
From the outset, my husband and I agreed that we would not allow our son’s diagnosis to control his life. We have never expected less from him because of it. To be honest, we probably have higher expectations than most parents.
I firmly believe that if you set a limit, your child will reach it and go no further. I want my son to be whatever his heart desires, and until I am proven wrong, I refuse to believe he is not capable of doing anything a child of his age should be capable of doing.
While I understand this is not the case for all children diagnosed with an illness, it is about ensuring the way that you parent doesn’t limit your child’s capacity for greatness or provide them with a reason not to exceed expectations. Let’s face it. We all think our children are amazing. This is simply about letting them know they are capable of accomplishing great feats.
Parenting a child with a serious illness is a great gift. You have the opportunity to witness your child’s resilience, tenacity, and fierceness in a way that many parents miss.
I wish you luck on your journey and good outcomes for your child.