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.
We have completed another big step on this adventure of parenting Meredith. In the last few weeks, we have had a lift system installed in our main floor bathroom and in Meredith’s bedroom. Since December, when we first started entertaining the idea of taking this next step, we have both looked forward to it with the ever increasing growth and weight of Meredith and dreaded it as we recognize that our little girl is rapidly becoming a big girl.
In a previous post, I described how it is difficult to appear ‘normal’ when you are surrounded by equipment that symbolizes that in fact, nothing is really that normal~ the IV pole attached to your child, the wheelchair sitting at the back door, the syringes sharing a drying mat with the plates and cutlery, medications sitting side by side with cold medicine, fish oil and condiments in the fridge, the 40 foot wheelchair ramp attached to our back deck, to name a few. As Meredith grew so did the list of items in our home that were blatant reminders that our reality was one that we never desired or dreamed of.
I have a very hard time allowing my thoughts to travel back to a time when Meredith was held fifteen hours/ day. I held her for 8+ hours of that myself most days; her little body arching and writhing as I moved with her amazed that such a small person could expend such strength and energy. When it was time to get a wheelchair, we welcomed the potential relief it could bring but we also hated the thought that our perfect little baby would find her way around the world confined to a wheelchair. It turned out that she couldn’t tolerate it and so we went back to the holding until we could no longer manage. As we approached her 9th birthday, we finally freed ourselves (and her!) from our arms and her world expanded as she went from stander to futon to wheelchair for walks outside.
Since December, Meredith’s “spasms” have been brought under control by seizure medication. Consequently she is moving less, resting more and packing on the weight at a remarkable rate. I felt the urgency of a lift system by the fall knowing that we needed to have a back-up before it became a necessity. My husband was more hesitant as he wasn’t feeling the strain of lifting and carrying Meredith as much as myself and the workers were and truthfully, it was challenging to wrap our heads around the fact that her bedroom, which we specifically designed to NOT look like a medical space, would now have a white tracking system drilled into the ceiling.
And so as we waited for funding to get organized and installers to be available, we had to gradually accept that this was just another step on the ladder of raising a child with disabilities. It would only make sense that all of these things that make life a little easier on us should be welcomed and celebrated. They also act as signposts that we are leaving one stage behind and entering another one.
This one is admittedly tough as I know my arms and my heart will have a harder time letting go of the familiarity of holding this child for 10+ years. I also know from past experience that in no time, we will be pros at using the lift system and will wonder how we ever managed without it. And that is what I choose to focus on.
There was a time (a long, long time ago) when we used to sleep naked. It is so long ago that I am not even certain if it is a memory or a foggy fantasy. Nevertheless, after Meredith was born, I begrudgingly went to bed with clothes on knowing that at least a dozen times, I would be leaping out of that bed to Meredith’s crib side. As time passed and night nursing services were acquired, I still wore pajamas to bed knowing that at some point, I would be beckoned and would have to go downstairs for one reason or another.
We have reflected often on the many wonderful things that have occurred because Meredith was born as well as those things that have been lost as a result of caring for our beloved child. Things like a lack of privacy which includes hushed conversations, sleeping fully clothed and creativity when it comes to maintaining intimacy in our relationship. We are so beyond grateful for the support we receive in the form of our family relief workers (all four of them) and our night nurses that we hesitate to complain and boo hoo about our lack of privacy. The reality is that although it is a part of our “normal” life, it is something that we both have had a very hard time accepting.
So last night, I had a soak in the tub with Epsom salts, baking soda and lavender oil. I climbed out of the tub and put on my thick, cozy robe to go downstairs and give Meredith her last meds and get her feed started before bed. After saying good night to the nurse, I went upstairs, disrobed and decided to throw caution to the wind and climb between the sheets stark naked! Yippeeee!! As we drifted off to sleep, my husband and I chuckled at my recklessness knowing that Murphy is never too far away. Besides, I had not been called from our bed in ninety-three nights (yes, I keep track of these things~ they are the equivalent of gold stars on my chart of life) so it wasn’t really a daring act.
At 1am, I got up to use the washroom and on the way back, just as I was partway across the top of the stairs between our bedroom and the bathroom, the nurse bolted from the living room sofa to the bottom of the stairs and called out to me. I am sure that all she saw was a streak of white light from my alabaster body making a leap for the threshold of our room. I called out, “Just a second, just a second!” as I frantically felt around in the dark for my robe. I went to the top of the stairs to answer her question and then returned to bed cursing Murphy and his law.
This incident is one of countless that are a part of this life of caring for Meredith. There is a balance in welcoming so many people into our home round the clock while also ensuring that some sense of our privacy is preserved. It’s tricky because we want our caregivers to feel comfortable in our home while at the same time we, too, want to feel a sense of ease and comfort.
Apparently that does not include nudity. We’ll save that for the nights when we manage to get away and can trust that we won’t be unintentionally flashing our caregivers.