By Julie Keon
I have been trotting on this path long enough to know that guilt will suck the life force out of you faster than anything.
Keeping this in mind, I tend not to spend time in a pit of guilt when it comes to our beautifully complex daughter. However, every so often, there is one question that still finds its way to my conscious.
It cements itself there until I go through the same logical conversation with myself as I have done for years to soothe the worry, regret, fear and yes, guilt that accompanies it. Out of nowhere, I am plagued with this:
DID WE DO ENOUGH FOR HER???
We are thirteen years into this and still, although very rarely now, I wonder, "Did we do enough for her?"
I am not talking about her medical or practical care. I am confident and secure in the care we have given her and know that without it, she wouldn't be alive today.
I am talking more about the things that I see online that people have tried and have had success with. I am talking about therapies that could have changed the course of her life.
I read about the great lengths parents have gone to in order for their child to receive specialized therapies; traveling across the county or even across the world for intensive therapies away from their family and homes.
New parents write about their child's diagnosis as though they received a complimentary medical degree at the time that their child acquired their brain injury. The online world has made my shortcomings glaringly apparent as I read how parents share all of the details of their child's diagnosis.
There are levels of HIE? Ask me what our daughter's level is and I couldn't tell you. All that is etched in my mind are the words: "Hypoxic Ischemic Encephalopathy resulting in severe, life-limiting cerebral palsy." The day Hypoxic Ischemic Encephalopathy rolled off my tongue was a big day for me!
In the beginning of our parenting experience, social media did not exist as it does now so I combed the library at the children's hospital only to find outdated books about raising your child with cerebral palsy. The illustrations were of kids that looked happy enough tossing a football around from their wheelchair with their school pals. I thought to myself: "This isn't so bad."
Then I found a dusty book in a secondhand store called, "What to Do about Your Brain Injured Child" (1974 edition). I thought I had struck gold and was determined to do everything in my power for this story to have a happy ending. I imagined reading it cover to cover and then applying my new knowledge with Meredith.
I imagined the doctor's faces when one day she WALKED into her neurologist's office (thanks to the therapies I had researched and applied).
That fantasy was obliterated when reality slammed into it like a freight train.
How was I going to read this book and get my honorary neurology degree when I had to stop and start feeds round the clock every 1.5 hours, plus deal with pumping breast milk every three hours? How was I to do the hours of therapy each day when we had to hold our new baby 15 hours per day?
Then there was the retching episodes, seizures, baths, dressing changes, medications, doctor's appointments, and severe lack of sleep. It became clear, very quickly, that I was not going to be reading that book anytime soon.
There was no shortage of well-meaning friends and family doing "research" for us and sending scientific papers on all kinds of things we could do to "fix" our daughter. As the ideas for therapies and even some magical cures rolled in, I felt my resilience weaken as I tried to comprehend how we could logistically and financially give her the best shot at improving her status.
At one point, a kind Nurse Practitioner drove us to Ottawa (120km away) to check out a hyperbaric oxygen tank. Traveling any distance with Meredith was nothing short of a nightmare, but we were willing to investigate anything that might help.
This therapy would have involved lying in a claustrophobia-inducing tube with Meredith in my arms for an hour at a time. She choked and retched constantly and she needed to move the way her disorganized brain demanded her to. There was no way this therapy would be an option (not to mention the thousands of dollars we would need to come up with to pay for it).
Then it was onto Conductive Education, where we were gently told that it probably wasn't going to be doable for our severely affected daughter.
Throughout all of this we were giving therapies in our home and receiving regular visits from an OT and a Physiotherapist, as well as seating and communication experts. Through the years we tried conventional therapies along with many unconventional modalities: chiropractic, massage therapy, craniosacral therapy, osteopathy, naturopathy, homeopathy, functional medicine, Snowdrop Therapy, essential oils and we even stretched ourselves out of our comfort zone by trying things like holy water from Mount St. Patrick, energy work, prayer circles from a distance and soul retrieval (not even kidding!).
It wasn't until we decided to try out the Snowdrop Therapy out of the UK that we had our reality handed back to us on a silver platter. The kind and knowledgeable neurologist who designed this therapy reviewed Meredith's MRI and assessed the countless videos and questionnaires we prepared. He concluded that it was very unlikely these therapies would do a whole lot. He wasn't dismal but more realistic yet he offered a bit of hope saying, "It never hurts to try."
And so we paid the hundreds of dollars and received the therapy program laid out for Meredith. We were diligent; performing the tasks every single day, four times a day for weeks, which turned into months. There was a teeny tiny bit of progress and to us that made it all worth it.
Eventually, we recognized that she had plateaued and the reality that our girl was likely going to stay comfortably at the 0-3 month level of development became blatantly obvious.
It is normal for new parents to scour the world for some therapy or treatment that will improve their child's abilities and life. I think of it as one of many "developmental" stages on parenting a child with special needs/medical fragility.
We must be cautious that we do not forget about living and enjoying our child just the way they are in our quest to change the outcome.
There will be things that might work and there may be many things that do not. Sometimes you will have energy and motivation to spend hours each day applying specialized therapies. Other times, you will be too exhausted to have a shower and the therapies won't be high on your list of priorities.
Does this make you a bad, lazy parent? Not in my books, it doesn't.
But how can you not feel as though you are coming up short when everyone else seems to be handling this remarkably well and not only that, their kids have beaten the odds. Maybe if we did more, researched more, held them more, held them less, flew to Romania for two years for therapy, bought that goat and milked it to make our own formula, spent the hundreds of dollars on that this or that treatment, things would be different.
This is what I have realized: we did the very best we could with what we had and what we were capable of doing at any given time.
Someone else might have had great success in Romania, but we know this option was not feasible for us. We wish things would have been different; maybe if her brain was just a little less affected, we could have flown to another country to seek specialized therapies or I could have crammed my body and hers into a hyperbaric oxygen tank. But that wasn't our reality (and still isn't).
To be honest, even if we could have afforded it and managed to get there, I am not sure we would have. At some point, we needed to face the reality that no matter what, our daughter would always be severely affected.
Does that mean we gave up on her? Absolutely not. It just meant that we recognized our limitations and made a conscious decision to stop comparing our situation and experience to what everyone else was going through. We chose to be secure with our decisions and with the fact that we were doing everything possible to help her along to the degree that worked for her and for us.
Honestly, there was a big part of us that wanted to simply spend every moment enjoying her, knowing that our time with her was, like everything else, very limited. It didn't make sense to put her through 40 hours per week week of intensive therapy only to have very little improvement. For some families, this brings tremendous results but for families like ours, not so much.
Eventually, you come to accept that no amount of prayer, magical chanting, love, determination and belief will change the outcome or beat the odds. It is an illusion that if we just love enough, believe enough, pray enough and do enough, that our child will achieve all of the things the doctors said they never would. If this were the case, I guarantee, our daughter would be training for the Olympics.
Believing that our children's outcome is a direct result of the level of love, care, therapy and magic we infused into their lives can leave us shattered and guilt-ridden if the outcome is not how we had imagined it to be. On the flip side, if our child has soared above all expectations and we tell others that with enough love and determination, their child, too, can beat the odds, we (unintentionally) fertilize their feelings of guilt.
So how do you get from the place of feeling like you aren't doing enough to a place of accepting that you are doing enough? It's a process.
It's learning to build on your child's strengths as opposed to trying to "fix" them or make them "normal." It comes from making the shift from putting your focus on the negative (what your child can't do) to the positive (what your child can do), examining your own feelings, challenging your beliefs, saying "NO" to guilt, trusting that you ARE doing the best you can with what you have in this moment.
And that is enough. Your child is enough. You are enough. Enough is enough.
Julie Keon is an HIE mom and author of "What I Would Tell You."
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