So many look at you and see your limitations and your medical fragility. Some want to look but turn away not wanting to appear rude. Others look too long and I refrain from telling them to “Eff off.” To the majority of onlookers, you are a child with disabilities; a “poor little girl” and a “very sad situation.”
Sometimes I wish they could see what I see. I don’t blame them for their limitations because before I got to know you, I, too, saw a baby that was disabled and sick and I could barely see anything else through my angry tears. As time passed, my grand wishes for you dwindled until the only thing that really mattered was that you lived one more day. That was all. The dreams I once had for you were nothing short of miracles: walking, talking, eating orally despite what our seasoned neurologist predicted. But all of those dreams slipped away with the months and then years that passed.
But as the dreams and yearnings vapourized, something even more magical took their place. By letting go of the things I wished you could do and be, I made room for seeing you as you are. As you grew, so did my perceptions of how things should be. In fact, after some time, the word “should” no longer had a place in my vocabulary. Eventually, I no longer compared you to others because I finally saw you for who you were.
I have the privilege of seeing past all of the things that everyone else can’t help but see. Instead, I see your brilliance which cannot be dimmed by a brain that doesn’t function the way it was intended to. Through your eyes, I connect with your spirit and I know that you ‘get’ so much more than we know. Your body may have you trapped unable to run and dance and skip and twirl, but when I hold you in my arms and you look right into my eyes, I see YOU~ your essence and your pureness and that magnificent light that each one of us embodies.
I no longer have expectations like I used to. We have learned to just go with it; no longer burdened by developmental milestones, shattered dreams, broken hearts. My only wish now is that everyone else could really see you the way I do.
Today is the first day of school in our area but for us, it’s just another day. My news feed is clogged with photos of eager children ready for a fresh start; big smiles, tidy haircuts, clean running shoes and new clothes and back packs. In the days leading up to this first day of school, I read about mother’s ideas for managing the daunting task of packing lunches and have viewed countless photos of home baked goodies and packed lunch boxes ready for the morning.
In the past, this day represented a lot of things to me none of which resembled hope, anticipation and excitement for a new beginning. Instead, this day was bittersweet as I watched the children walking by on their way to school. It didn’t help that our back yard was (is) attached to the far end of the school field and so for ten months, our days were (are) peppered with the sound of recess bells and children laughing and shouting on the playground…… a daily, deafening reminder that we were on a whole other path.
Long ago, we resigned to the fact that Meredith would likely not attend school. There are many reasons why and we have given this much thought. Our team of specialists broach the subject carefully and at this time have been told to put it aside and to trust that we will bring it up if we ever feel Meredith is ready and able to attend school. In the meantime, we do not wish to discuss it further.
Last night we sat on our back deck, as we often do this time of year, and shared mojitos and food with our friends. They are childless and so staying up past midnight on the night before school starts had the same effect on them as it had on us which was next to nothing. Aside from our relief worker coming in an hour later in order to get her own kids off to school, today was like any other day in our lives.
But there was one noticeable difference.
For the first time since Meredith was of age to attend school, I am not filled with grief and “what-could-have-been’s.” For the first time, today really is, just another day.
As parents of children with special needs we put on brave faces and face each day with a sense of hope and courage. I also know that we harbour secret fears about this parenting journey and the many possible detours that can happen at any given moment. Sometimes things move along in a relatively predictable way and we catch ourselves exhaling instead of holding our breath in a desperate attempt to be ready for the next blow. For the most part these fears do not consume us but sometimes things happen which shine the light on our biggest worries.
I have two major fears which sit in the darkness and are for the most part tucked neatly away unless they get triggered. The first one is being forced to have Meredith placed somewhere other than our home to be cared for due to increasing medical demands which we are not equipped to meet. My second fear is probably related to the first fear in that I have a fear of becoming ill myself and not being able to provide the care that Meredith requires of me. I have been remarkably healthy in my life and in the last decade I have made my health a priority knowing that there will be a ripple effect on all involved if I fall apart. In the earlier years, I admit that the thought of getting sick caused some anxiety and I was a obsessively diligent with my self-care. I have learned to ease off a bit knowing that getting stressed about being well is not overly practical in the long run. Now there tends to be an ebb and flow to my self-care. Sometimes I exercise religiously and sometimes I take a break. Sometimes I drink wine on a daily basis and other times I gulp down protein shakes in place of the booze.
In 2009, the H1N1 flu virus caused a world wide pandemic and panic spread quickly. I, too, panicked at the thought of becoming ill from this serious flu. Truthfully, I panicked more at the thought of getting the vaccine which I had little trust in. In the end, we made the decision to have Meredith vaccinated and my husband and I reluctantly received the vaccine as well. Ironically, over the weeks that followed, my liver went into failure and I became very, very sick. In my attempt to avoid serious illness, I became seriously ill anyway.
And you know what happened? The entire world as we know it didn’t fall apart. I felt helpless and extremely frustrated as my husband had to take time off work to care for Meredith and I had to surrender as my liver recovered. It was terrifying initially as we didn’t know what was wrong with me. I blamed it on stress until I turned a golden shade of yellow. Since that ordeal, which was five years ago, I have been well except for the odd head cold.
Until last week.
For the past six days I have been dealing with sudden and serious SI Joint issues. In the first 24 hours, I saw my Chiropractor, Massage Therapist and my Physiotherapist who I had a previously scheduled app’t with for my shoulder. He couldn’t do much with my shoulder as I was barely able to walk with the SI pain and so he sent me on my way advising me to rest, use caution in my sitting and standing and to ice the area often. My husband had to take two days off work and I sat helplessly by as he took over full care of Meredith as well as the household while I struggled with basic tasks like wiping my bum and stepping into my underwear. But I gave it 48 hours and by Saturday, there was improvement. Just in time as I had three marriages to perform and a prenatal class to teach all day Sunday. Then on Sunday morning, I stepped out of the shower after a fairly restful sleep and proceeded to tweak my SI Joint yet again by bending forward to dry off my legs.
And then things went from bad to worse and I was pretty much immobilized. I was waking in the night in tears from the pain and I was getting increasingly frustrated with every painful movement. For almost eleven years, I have managed to carry, lift, move and hold Meredith and suddenly I am not able to even change her let along hold or lift her.
I realize that I am a lousy patient and although this last week has been a lesson in surrender, patience and trust in everyone else to pick up the slack, I admit I rage when my health fails me. My husband tends to me and everything else patiently and lovingly but the strain takes a toll on him, too, which makes me feel even more helpless and frustrated. I essentially become a fragile hurt bag and I am well aware of it.
The good news is I went to see my chiropractor this morning and he did an adjustment which has improved things ever so slightly. I am still on strict rest as inflammation is an issue. I have figured out how to get through the next few days as far as care for Meredith is concerned when my husband returns to work and I am hopeful that my body will spring back to normal in no time.
In the meantime, I am trying to be a good patient which ironically is not at all how I feel. And I know when I heal, I will be even more grateful for my well body and mind and will be fine tuning my self-care regime to prevent a re-occurrence.
I was on my home from the city the other day after a string of meetings. I was tired and looking forward to getting home however I wasn’t looking forward to the 100km drive that stood between me and my destination of home.
There was a lot of construction going on everywhere it seemed and my last clients of the day suggested I take a road that runs parallel to the highway I needed to be on. I would take it to the end and then get back onto the highway saving myself a twenty minute wait in construction. It had been a few years since I took this route but it seemed like a reasonable plan.
As I approached the end of the road, I quickly noticed that a lot of changes had occurred. There were exits and off ramps where a simple stop sign used to be. I entered into what looked like a maze of roadway and veered onto an exit ramp when I saw a sign directing me “West.”
As I made my way around this large curve in the road, I drove past a sign that read “West/ Toronto” and quickly realized I had just exited onto the wrong highway. This used to be the highway I drove when we were living in our first home together in the town where Meredith was born. It was no longer a two lane highway with multiple crossings of rural roads. Now it was a four lane, divided highway and I was going in the wrong direction.
For a second, I didn’t know where I was and it took me a moment to get my bearings. When I realized that I was on a completely different highway than I was supposed to be on, my initial reaction was to find the closest exit to get back to where I was just a moment ago and where I wanted to be.
Well, this new highway doesn’t allow for exits. It quickly became clear that I was committed to taking the long way home. It meant that I had to drive further away in order to eventually get to my intended destination. I laughed at myself as I drove along. I was exhausted but I immediately let my frustration go and just decided to enjoy the ride because what were my options? I know for certain that ten years ago, I might have slammed my fist onto the steering wheel in anger and carried this disdain at my stupidity all the way home. But, there was no turning back and besides, although a longer drive, I knew that the scenery was far more enjoyable on this detour.
Life is like that. We have expectations, a lot of them, and we approach our lives confined by these expectations of how we think and believe things should unfold. By doing so, we live under the guise of control. If we have certain expectations, then we have some sense of control and this makes us feel less anxious. But this perceived sense of control is an illusion.
All it takes is one gigantic unexpected detour in life to force you to see that having expectations and controlling outcomes leads to disaster because that is not how life unfolds. Whether or not you want to believe that, is up to you but I can say with conviction that dropping expectations and adapting to the unfolding of life however it reveals itself, will set you free. What you do control is how you will respond. Will you spend the entire time looking for an exit or a way back to where you used to be, to your comfort zone? Or will you see where you used to be in your rear view mirror and move forward choosing to enjoy the scenery along the way?
From where I stand now, I have difficulty travelling back in time and remembering the first few years of Meredith’s life. For literally years, we lived in a constant state of fight or flight, survival mode and crisis. These regular crises came in the form of severe sleep deprivation to sudden episodes of apnea that required 911 calls and the reality that she may not survive. When we were in the thick of it, people would regularly say, “I don’t know how you do it,” and we, like programmed robots, would reply, “You just do.”
Since December, we have had some space from the daily onslaught of stress and the unknowns and have quickly adjusted into a period of (dare I say?) predictability and most importantly, regular sleep (a combination of seizure medication and full time night nursing). What is confusing me, though, is how quickly I have forgotten how bad it was some days. I mean, it was really, really horrendous at times and now, the further I move away from it, the less I can recall. I read blog posts and status’ on Facebook by parents who are in the throes of this specialty of parenting and I although I can empathize, I also feel very removed from it all.
This concerns me as I have a sense that those years should have more of a grip on me but in some ways, it’s as though none of it happened. Could it be that high levels of stress hormones and severe lack of proper sleep causes a person to experience a muted version of their reality? Or perhaps, in order to survive the unrelenting stress, we shut down to some degree so that years later the memories are not as easily accessible. Could this be some sort of primal defense mechanism or means of protection?
We had grown accustomed to living in that high degree of stress and had, for the most part, accepted that for the rest of Meredith’s life, this would be how we lived. Of course, we endlessly searched for ways to improve Meredith’s quality of life and consequently ours but we never imagined that things would stabilize or resemble some sort of ‘normal.’
Now, that we are six months into our improved quality of life, there have been some positive developments. We only hold Meredith for maybe an hour and a half in 24 hours; a far cry from six months ago when her nights were plagued with nocturnal seizures and holding her 8 hours per night was not a rarity. I also feel as though we have been launched out of the land of active medical fragility and as we move further away from the day in, day out “wait-and-see” frame of mind, I feel like we are on the outskirts of a club we once belonged to.
And then three weeks ago, I went in to check on Meredith and she was not breathing the way she should be breathing. I quickly administered oxygen while calling one of our relief workers who lives close by to ensure I had someone on-call to accompany me should we have to head to the ER. My husband was on his way to work and I called him immediately after securing a back-up. Within minutes, Meredith came around and was back to her normal breathing pattern and smiling at me.
To say that I went into a bit of a shock would be an understatement and for a few days afterward, I felt the heavy presence of our old life. It was a not-so-gentle reminder that although we may be on the outskirts for the time being, it isn’t permanent and we can easily and unexpectedly jump back into the life we had inhabited for a decade. This extended leave from the way things used to be has given us reprieve to regroup, catch our breath, connect with ourselves and with each other and to engage in life again in a way that was not possible for years.
I am grateful everyday to be in a peaceful place for a change (as unfamiliar as it is) but I don’t want to forget those early years. I know that we will never go back to that intensity of the early years as they naturally toughened us up and we have risen high above the normal quota allotted for resiliency. I know, though, that staying on the outskirts indefinitely is also not an option. It is the very nature of medical fragility to accept that all things come to pass whether you want them to or not and in the time it takes to exhale, you can find yourself back in the club, reflecting on that brief moment spent on the outskirts.
We waited a long time for Meredith to grace us with her smile. I know that many parents have waited longer or are still waiting for that first demonstration of happiness. In July of 2004, when Meredith was just 8 months old, I went to her crib early one morning and through my bleary eyes, I thought I noticed a slight upward curve of the corner of her mouth when I spoke to her. I kept talking with her as I held her in the sun room and then I knew for certain that she was grinning or at least trying to grin.
It wasn’t until August of 2004 when we were staying at the local children’s hospital undergoing more tests that we finally got a smile. We spent 8 months in that first year in the hospital and on one particular day, we bought Meredith a mylar balloon from the hospital gift shop and tied it to the rungs of her crib. When she awoke from her nap, her eyes were immediately drawn to the metallic sheen of the balloon. And then it happened. She smiled! We caught it all on video and so actual still shots of this moment are lacking. Here she is when she first spotted it:
Last Thursday we visited the same children’s hospital for an appointment with Meredith’s gastro-enterologist. Since starting the seizure medication in December, all of our lives have improved tremendously. It’s as though we have wandered, after ten years, out of a very dark forest into a clearing filled with sunshine. Meredith has gained weight (finally!!), sleeps at night and we see even more of her personality coming through. She even tolerated the 240km drive to Ottawa and back in her car seat with nothing more than a peep out of her. Then she sat in her wheelchair for the duration of our time there aside from a brief examination by her doctor. There was such happiness in her doctor as she observed how stable and well Meredith looked. The doctor was so pleased with her weight gain that she even recommended we reduce the volume of formula she receives per day. Nothing short of extraordinary. We never could have imagined life stabilizing as it has.
After the appointment we went straight to the gift shop and bought a beautiful mylar butterfly balloon. Our girl deserved a treat and I know how much she loves a shiny balloon. As we exited the hospital with the balloon tied to her wheelchair, I reflected on how far we have come. Smiles come easily now and if you work hard enough, she will even give you a laugh. And for this reason alone, mylar balloons will always make me smile, too.
Since Meredith turned ten in December, it seems like a huge shift has taken place. Reaching this milestone birthday was a big deal around here but I don’t think we were prepared for the changes that occurred.
There seems to be an easy rhythm in all of our lives these days. The constant crisis mode that we were in for years has dissipated. We have had sleep every single night since January 3rd due in part to consistent night nursing which we have never had previously as well as a stability in Meredith’s health which we have also never had previously. There is a letting go that has taken place. It’s as though we are shedding that first ten years; working through any residual emotions, freeing ourselves of stubborn grief and openly talking about the numerous traumatic events we survived so that we can make space for the next decade.
I wrote in the past about Meredith’s muscle spasms and how they were relentless and mysterious only occurring at night and how we were desperate for answers. We were assured that they were not seizures as her repeated eeg’s were negative for seizure activity. We have had many, many experiences of helplessness over the years but this was the mother ship of helpless experiences. And, then it happened. My husband came across articles on nocturnal seizures and we opted to take a chance with seizure medication. And life changed. I mean really changed.
Since Meredith turned ten, her seizures have been managed by a relatively low dose of the medication that worked like a miracle. Within days, those nasty evil seizures were a thing of the past and soon she was sleeping for most of the night . We know they are still lurking in the depths of her brain but they are in a deep slumber for now. We are grateful every single day for this drug that has made Meredith’s life one of quality again.
There is a routine, a predictability to the day and night which we have never, ever had before. We cautiously welcomed the change knowing that the medication would likely stop working within a few weeks but we were just so happy for the reprieve that we chose to live in the moment. Unexpectedly, the medication is still working almost six months later and she is on a lower dose than the one prescribed. Miracles abound!
It feels like we are all growing up in some way. Meredith is changing from a little girl to a big girl and Tim and I are growing and evolving right along with her. It also feels as though these are the best days of our lives. They are certainly the best days since 2003. We bravely welcome each day grateful for the positive strides we have made while being acutely aware, as always, that it can all change in a matter of seconds. I had a moment of hesitation in writing this post for fear of tempting fate. And just as quickly, I boldly hammered it out and decided to do it anyway.
It’s as though we have been lost at sea for a decade and then a piece of land appeared on the horizon. We have docked on this island for now and we know that we will eventually have to head out to sea at some point but for now, we are safe and sound here and we will frolic on this shore as long as possible.
I think of them often. You know, the mothers who came before me. The mothers who were the trailblazers in this land of special needs.
They are the mothers who were urged by not only the professionals who knew best but by their family members to place their babies in institutions; a better place for children like these. I think of how they had to take their most vulnerable child and leave him or her in a large facility filled with other people’s children who were unable to be cared for at home. I think of how they must have been broken by that. I think of how they must have tried to go back to living their normal lives as though it was perfectly natural to leave your child in another city to be cared for by strangers. But they didn’t have much choice. They were giving birth to a child with special needs in a society that hadn’t evolved enough to understand that an institution isn’t a suitable home for children with special needs in most cases. I am acutely aware of the fact that if we didn’t have all of the support that we have, we would not be able to care for Meredith at home either.
And then I think of the mothers who refused to hand their children over and were sent home with sick children and told to love them til their death. The hours spent trying to give them food because feeding tubes weren’t an option. Many times a diagnosis wasn’t available and they cared for children with medical needs well beyond their capabilities and without the “village” that most of us have today. All they had to go on much of the time was love. And that was all.
The mothers that came before me fought for their children’s right to an education and their right to inclusion not knowing at the time that they were fighting for all of our children. They did it in isolation because children like ours were much more of a rarity then and social media and the Internet were stuff of the future.
I remember starting out on this path and meeting mothers who were further down the road than we were. One mother calmed my fears and worries through email. Her daughter was fourteen then and she gave me such hope knowing that life could be okay again; it wouldn’t always be a crisis. And our first Case Manager with CCAC, had some inkling of what we were going through as she, too, was the mother of an adult son with special needs. She gave me a button that said “Mother from Hell” on it and told me to wear it when we went to the children’s hospital or to doctor’s appointments. She gave me the courage to allow my inner mother bear to emerge when necessary. And more recently, a fellow author and mother of an adult son with special needs and who is a lot like our Meredith, told me, as she was about to go on a tropical vacation, that one day, my husband and I would be able to do the same. And I believe her.
I think of them all…..the ones I have met and the ones I have never met. This Mother’s Day, I salute you and thank you for making this path we are on a little less treacherous. By wearing it down with your own footsteps, you have allowed our steps to falter less.