This Hot Slap in the Face

When Meredith was just 5 months old, we returned to the Children’s Hospital of Eastern Ontario (CHEO) for what felt like the 20^th time after our initial discharge in mid February of 2024. Hours after Meredith was born in early December, she was airlifted from the small community hospital where we lived to CHEO’s Neonatal Intensive Care Unit (NICU) where she clung to life by a thread for those first 48 hours. A sudden hypoxic event during the last moments of birth caused her perfectly formed brain to suffer a massive injury. At full-term, her brain was completely developed and so the damage was profound. We wouldn’t discover the extent of her injury until she was five days old and underwent an MRI.

She remained at CHEO for 10 weeks. Six of those weeks were spent in the NICU followed by four weeks on a ward floor where she was monitored by 24/7 nurses in a shared room with four other infants/ toddlers requiring extraordinary care. A gastrostomy tube surgically placed when she was only 6 weeks old and this became her mode of nutrition and continues to be to this day.

We quickly discovered that when parenting a child with extraordinary needs, you become part of a larger circle of support than most parents. You are dealing with medical personnel (doctors, nurses and specialists), therapists in a variety of areas (physiotherapy, occupational therapy, speech/language, infant development) and government agencies that fund and aid with much needed equipment (wheelchairs, feeding pumps, standing frames). In addition to the government-run agencies, there are organizations set up to support families like ours with funding for family relief workers and nursing care depending on the degree of extra needs your child has.

One of the most challenging aspects of becoming a parent to Meredith was the number of people who suddenly became part of our lives. My husband, Tim, and I are (were?) private people, so to have social workers, discharge planners, case managers, and developmental services coordinators, among others, calling and setting up meetings and appointments daily produced a lot of anxiety, to say the least.

Throughout the years, sleep deprivation and high stress levels made us feel less able to manage. It was extremely difficult to ask professionals the questions that needed to be asked and to tell them how we felt. We often used protective responses that gave the impression that we were “fine and okay” and “handling it all” because, somewhere beyond the strong persona we presented to the world, there was a terrified parent who feared that any sign of weakness or lack of confidence suggested that we were incapable of caring for our child. It was frightening to have so many individuals involved in such a personal experience.

This fear was confirmed when we returned to CHEO in April of 2004. We were exhausted, overwhelmed and on the brink of a mental health crisis from lack of sleep and worry. Meredith was not sleeping and was going through periods of extreme distress which included screaming mixed with, what appeared to be, panic. Nothing seemed to soothe her except placing her in warm water. We were told it was neurological and yet we felt that something was wrong. It was a kind neurology nurse I called in desperation who said, “If you think something is wrong, then you need to bring her in.” And so we did.

During this visit, an RN, who was also the discharge planner, came into our room and implied that her “superiors” were concerned with the number of admissions we had since our initial discharge. She followed it up with, “We are questioning your ability to cope.” In the time it took for those words to tumble out of her mouth, my internal alarm bells went off and something within me shifted from trust to a hypervigilant guardedness. Immediately, I was hit with the realization that we were being observed and judged on whether we were good enough parents to care for this medically fragile baby. This thought was followed by the most primal and suffocating fear that, at any time, someone could take our baby from us. She didn’t belong to us. She now belonged to a system. And when I use the term “belong”, it is not to insinuate ‘ownership’. Meredith is her own person and yet she is fully dependent on us requiring a tremendous amount of care akin to the needs of a newborn. She was born of us and so belongs to us and our families.

It turned out, after some tests were performed, that Meredith was experiencing a bowel obstruction from the balloon that was inside her stomach and attached to the feeding portal that allowed us to attach her feeding tube. Each time her stomach emptied, that small balloon got lodged in her duodenum (the first C-shaped segment of the small intestine) causing excruciating pain for Meredith. This time stands out in my mind as a moment that confirmed our instincts trumped any medical degree. Before we went home, I made sure to tell that RN to let her “superiors” know that their assessment was grossly flawed and that she should be very careful on how she speaks to parents. I don’t think she ever quite understood how her words incited a deep and primal fear in me that has never quite resolved.

Over the years, our fear of having her taken from us has faded although has been replaced by a new, equally terrifying, fear. We have been told by care coordinators that if Tim and I were to die suddenly, a suitable place for her to live does not exist considering the care she requires. The fear of our dying before her keeps me awake at night. I wrote about that HERE.

And so, this brings me to this most recent battle with regards to the massive roadblock that has been presented to us when it comes to Meredith receiving the benefits she is entitled to. It feels like a hot slap in the face when a stranger on the other end of the phone or on the other side of a counter announces that Meredith doesn’t qualify for a dental benefit or cannot have her Ontario health card renewed because of a rule that is a GROSS oversight of a population that has fallen through the cracks. I am enraged and frankly, insulted, that I have to explain Meredith’s circumstances and the fact that due to lack of capacity, she legally cannot make a Power of Attorney only to be met with the robotic reply of, “We can’t do anything if she doesn’t have a Power of Attorney.”

Do the powers that be (both provincial and federal governments) not recognize that there are people like Meredith who cannot speak for themselves due to their disability and who are 100% dependent on their caregivers to meet their needs 24 hours/ day?

How dare they paint disability with the same broad strokes failing to consider the adult children who do not have CAPACITY to make a Power of Attorney?

How dare they force parents/ caregivers to seek guardianship as the only option to ensure they can speak for their adult children who cannot speak for themselves?

I am furious as I reflect on the hundreds of thousands of moments over these past 22 years where we have experienced such heartbreak, trauma, sleeplessness, unexpected crisis and dedicated every decision to ensure Meredith is taken care of and yet this is not enough. We now must prove ourselves to anonymous people in a boardroom making rules that lack insight and a true understanding of the experience of so many families in Ontario.

 

Stay Tuned for Part 2