This past weekend I had the privilege of travelling from Ottawa, Ontario to Fredericksburg, Texas to gather with just under 50 mothers of children affected by HIE (hypoxic ischemic encephalopathy). I was contacted in the fall, by Hope for HIE, the premier resource for families whose children have been diagnosed with HIE, to present at the annual Mega Mom Retreat. I had been eagerly anticipating this adventure for months. Many of the moms attending, had been following this blog for a few years and I felt like I knew them well. To meet them in person was very exciting to me.
The interesting thing about gathering with women who have walked a similar path is that there is an automatic connection and recognition. We “know” each other and speak openly and casually about seizures, feeding tubes, trachs and irritability. Depression and anxiety has visited most of us at some point on this journey and we share deeply and receive the words of our sisters with respect and without judgement. For me, as an older mom, compared to the majority of mothers in attendance, I see myself in their tired faces. They are me just a few short years ago. I wonder if they, too, look at my tired face and wonder what their future will hold.
I have had a couple of days to reflect on the 48 hours I spent in Texas and I still struggle with how to put into words, the incredible impact it had on me in a relatively short amount of time. After a journey that included many unexpected hiccups along the way, we (my two Canadian travel companions and our Houston, Texas driver and fellow mom) finally arrived at our destination late Friday night and we were greeted by the mothers who are leaders in the Hope for HIE community. I have a moment etched in my mind of seeing Betsy Pilon walking towards me; a woman I have known online for some time, and how we hugged and how I touched her face as though she might not be real. Turns out she was 🙂 And then Annie, Shawna and Becky came towards me and I felt this sense of completion. I “know” them from the many intimate exchanges on various Facebook pages but to see them standing there as familiar to me as friends back home in Ontario, was both natural and surreal.
I didn’t have any expectations of our time together. My main goal was to present well and have a positive impact in the session I had created especially for my HIE tribe. I decided to offer a session called “From Grief to Gratitude” and I chose to present it in a woman’s circle format. I had never lead a circle of this size and was so impressed at how it all unfolded. I knew I was taking a risk with both the topic and the format but I also knew, from many years of experience, that if the mothers trusted me to hold space for them, that this could be a positive, if not, transformative couple of hours together. Due to the nature of our circle, it would be disrespectful to disclose what occurred specifically. Suffice it to say that through ritual, we tapped into our grief and both spoke our grief and witnessed the grief of our sister-mothers. It was an honour to share this space with these brave women who are so much more than enough!
We collected our “proverbial” tears in a bowl and then Betsy, who was assigned as the caretaker of our tears, went outside and dumped the salty water into the Texan ground to be further processed.
As the facilitator of this circle and as a Celebrant, I naturally take a position of caretaker to all who participate and yet I also allowed my grief to dislodge from its hiding places and be expressed as I listened to the deep sorrows of mothers who oftentimes cope with far more than they can bear. Grief is interesting in that it often shows up unannounced and can be triggered by the most unexpected things. Just before my session started, I walked into the meeting room and heard the familiar tune of “Somewhere Over the Rainbow” by Israel Kamakawiwo’ole playing in the background. My eyes instantly filled with tears as just a week before I had led a funeral for a little boy who died from a undiagnosed neuro-muscular degenerative disease. This song was played during his Celebration of Life ceremony. I walked towards, Becky, who immediately saw my tears and gave me a hug. How ironic that as I prepared to talk about grief, it paid me a visit without warning.
Although, we left our grief-related tears in a flower bed in Texas, we also shed great big, juicy tears of joy. There was so much hilarity and silliness in this group that I venture to believe that the aftermath of so much laughter to the point of tears was equally if not more healing than our tears shed in grief. Having what seemed like unlimited, uninterrupted time, allowed us to bring down our survival mode by a few notches. We could exhale and engage in the moment not worrying about what tube feed needed to be started and what medication was due. We only had ourselves to look after and everywhere we turned there was a mother from our tribe ready to hug us and sit and chat for a while. What a beautiful gift we gave to one another by our presence at this retreat.
These closing words from my “Grief to Gratitude” session say it all:
Community. Somewhere, there are people to whom we can speak with passion without having the words catch in our throats. Somewhere a circle of hands will open to receive us, eyes will light up as we enter and voices will celebrate with us whenever we come into our own power. Community means strength that joins our strength to do the work that needs to be done. Arms to hold us when we falter. A circle of healing. A circle of friends. Some place where we can be free. Blessed Be. ~by Starhawk
I give this space to Mindy Pedersen McHardy, mother to Connor, who died on February 29th 2012. This is the first anniversary since his death and Mindy wanted to share some of her thoughts about what life has been like since. ~ Julie
Imagine over a 3 month period, nearly every second night, your child lets out a cry, struggles to find an adult who is rushing to meet him, while another is turning up the oxygen and reaching for the phone. You pick up your child who is coughing, is a shade of blue/grey and is in obvious respiratory distress. He then turns cold as ice and stops breathing. The entire time you say to him: “It’s going to be okay. Mommy is her. It will all be okay” when in reality, you have no idea what this is, why it is happening or if he will survive this time around.
Today marks the first anniversary of my son, Connor’s, death – he died 4 years ago on February 29, 2012 (the rarest day of the year). Described as Complex Cardiac, my son had differences in nearly every system of his body. He was autistic, developmentally delayed, non-verbal, and medically fragile and technologically dependent (nasogastric feeding tube, then gastrostomy tube, oxygen, and continuous positive airway pressure or otherwise known as CPAP). There was no unifying diagnosis or syndrome for Connor’s differences though it was strongly believed to be genetic. My son’s medical journey was a mystery and we relied heavily on the health professionals both in the hospital and in the community to ensure Connor lived his best life in spite of his differences for however long that would be.
What have things been like since my only son died? In short, after Connor died I longed for my busy life back~ a life where I was exhausted beyond belief but where every moment mattered and was filled to capacity with life and Connor. I wouldn’t say my purpose was gone when he died. Although I loved following Connor’s lead and being his mother, I didn’t do it out of obligation. I did notice after his death, the time I had on my hands and the control I could regain over my own life~ a control once snuffed out by the complexity of my son’s medical needs and the requirement to be more than a mom.
Still, the habits of nearly 8 years are hard to break and the silence in my house was truly deafening. The absence of the Leapad or the Backyardigans , the hum of “the bus depot”(our nickname for the obnoxiously loud oxygen concentrator) or being awakened by imagined alarms that, not too long ago, were a constant reality; all reminders of what was. Daily calls for meds or supplies, paperwork to submit, calls from doctors and nurses asking how Connor was and how our family was coping all stopped abruptly once Connor died. What surprised me was how deeply I felt that loss as well.
I did not return to work. My fibromyalgia reared its ugly head and I struggled to find a balance and manage things. All that doctors could tell me was that I was constantly in fight or flight mode and that my life was so stressful that I shouldn’t expect an instant return to health. Of course I was flared up, it had accumulated over 8 years and who knew how long it would take to regain a balance.
We welcomed a baby girl in the summer of 2014. She was born healthy without the entourage of support (nurses, feeding tubes etc.) I had become so accustomed to. From a care perspective, I was taken aback by what being a mother was all about this time around. In some ways, Addison reminds me of Connor. I see him in her eyes and in certain expressions but she has her own personality. I feel sad knowing that she won’t get to know her big brother the same way we did yet I am so happy we get to know her and she gets to show us what life will be all about with her.
My experience since Connor died was not the one described in the mega text on five stages. Misunderstanding these as neat packages of emotions you will go through is misleading and gives the impression of full recovery.
(Julie’s note: These stages were originally applied to DYING not GRIEVING which has led to tremendous unnecessary confusion for those who are grieving)
My personal believe is that grief is not linear. I didn’t move from one emotion to the next; healing with each passing moment. It is also incorrect to assume that the first year is the worst and after that you are back in the world operating at full capacity. In fact, it is more reasonable to consider grief as something you carry; something that never completely goes away.
What do we do after a significant loss? Whether we consciously do so or not, we redefine ourselves and our lives. It will never be the same and that’s OK. How things change is different for everybody and there is no right or wrong way to grieve or to live after the death of a loved one, but especially the death of your child. You can’t go around grief you can only go through it with those along beside you who care.
Here are some things I have learned since Connor died:
My husband and I grieved differently. Not only is that okay but it is normal. I am grateful we gave each other the space to work through our own processes while still being there for the other person in the ways we could (like going to the pub for dinner together). The realization that my method of dealing with things was not only ineffective for my husband but actually made things worse for him, helped me to understand when we were “on different pages”. Both of us in the same story, grieving and feeling an intense loss which for my husband had no words and at times was greater than my own.
Creating space for healing. I turned to yoga and meditation to help me process the past 8 years of intense caregiving and the death of our son. I believe that the body stores emotions and no better place than on a Kundalini yoga mat to explore these emotions and let them go. Yoga, breath work, meditation and mindfulness were all tools I collected along the way that have helped me be calm, take time for myself and heal. Reinventing who I am and rediscovering a life lived in the present moment with love, peace and joy. This is a life I never could have lived without meeting and knowing Connor.
There is no time limit on grief. Don’t allow anyone to put time restraints on your grieving. I will not go through this in the same way you did when your friend, spouse, parent or child died. All deaths are equally tragic with a different set of circumstances that will define your experience. All of them are a different ball of yarn to unravel and patch back together. The length of time this takes is irrelevant.
The things people say – are for them; to make THEM feel better about how YOU are doing. I understand that their intentions are good and maybe they just don’t know what to say and blunder. I have learned to shrug it off. Some of the things people have said (and believe me there have been some doozies) led others to advise me to drop them from my life. Instead I adjusted my expectations of them. Through forgiveness, I allowed myself to feel gratitude for “their way,” even if it wasn’t at all what I needed. One of the worst mistake people make is to assume they know what the grieving person needs and what they should or shouldn’t be doing. Remember there are no “shoulds.” As a supportive friend or family member, just act as you always have and reach out when you haven’t heard from them. Above all, ask them what they need. Be prepared that they may have no answer or say they need nothing but don’t apply that to everything – a coffee drop off, baked goods, food will be welcomed though it may never be explicitly asked for. Most importantly, don’t leave it to the grieving person to contact you when they feel up to it. I found it hard to ask for companionship. All it took was a few refusals for me to feel like I shouldn’t be asking for someone to sit around on the couch and keep me company.
Tears are good. Allow yourself time to sit with these tears and become comfortable with their presence. You alone will develop your ability and system of dealing with this when it happens. Those who understand – those who really get it -are out there but it is also within you to heal. So whether you choose a support group, personal yoga practice, skydiving or nothing at all, that is your choice and nothing there is no wrong way so long as it feels right for you. Give yourself permission to create your own process. Keep close those who get it and be okay with saying, “Not right now” to those who don’t; keeping gratitude in your heart and mind. Have gratitude for the day, the fact that a friend reached out, that you had a good sleep or in my case, gratitude that I had any time at all with my greatest teacher – my son.
Connor’s life helped me to heal my own insecurities. He taught me I am good enough just as I am, to not to be afraid to speak my truth and that it is okay to say “No.” It is in his honour that I share his story as a volunteer speaker, family adviser and child health advocate. That is what his life and death did for me: it gave me the space to reflect on my life thus far and make changes to live fully in the present moment.
This post is dedicated to my only son, Connor McHardy born on World Autism Awareness Day (April 2) and died on World Rare Disease Day (February 29)~ a little man whose statement couldn’t have been louder – Mommy is still listening Connor.
Click HERE to watch a video about Connor’s journey.
I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born on December 5, 2003. After an abrupt lack of oxygen at birth she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.
I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.
I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband. I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.
If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.
I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.
I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.
I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.
I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.
I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents.
Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.
I would tell you that you will know far too much about the human anatomy, neurology, gastroenterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.
I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to share that your child has gained weight. because weight gain is a struggle with our children.
I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.
I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.
I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.
I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.
I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.
I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey. I would tell you that you will recognize her because she is you, from many years ago. You will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.
But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.
I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.
Written June 29 2011 by Julie Keon
copyright © 2016
There is a common question asked by newcomers to this adventure of parenting and it is asked in a variety of ways…………………………………
When will I know what my child will be like?
At what point, did you know how severe your child would be?
My daughter can hold her head up, does this mean she won’t be as severe as your child?
I am terrified that our son won’t be able to do anything. What signs will tell me how bad things are?
……………………But the answer they seek is the same. I wish, more than anything, that there was a straightforward answer that could bring instant comfort to the very real anxiety experienced in those early days. It is so pervasive that it tends to dominate everything else ~ every thought, every emotion, every experience, every thing. As much as we try to ignore those worries, they demand our attention and we desperately want to know something……… ANYTHING that will give us an inkling of what the months/ years ahead have in store for our little ones and consequently for us.
If we were really honest, though, what we are seeking are answers that will tell us that our child won’t be as severe as the doctors have predicted and hopefully not as severe as some of the children we have seen on the countless Facebook groups we belong to. It is frightening to be launched into this world and as we start to look around and see the potential outcomes, that fear reaches whole new levels.
When we first heard those words…..Severe. Cerebral. Palsy. , we felt panic and terror rise in us like a hot lava. We couldn’t begin to imagine what our future would look like. Our daughter was a mere five days old when we got the diagnosis. We had only had five days to wrap our heads around the fact that we were parents let alone have our dreams and expectations of parenting come to a grinding halt.
When we got this prognosis, social media didn’t exist as it does today. My husband would read medical journals in search of some glimmer of hope that things would be okay. It is different now with things like Facebook and blogging. Parents find their way to public groups on Facebook and plead with the parents who are further down the road to please assess the video clip they have posted and tell them if they think their child will be able to walk or talk or at least be less than severe. It’s complicated because for the most part, they are told they just have to wait and see; that they just need to love their baby as they are right now. This is true but easier said than done. That is for sure. And still, the newcomers to this land want answers………just some measure of hope to hang onto as they navigate these early days.
The veteran parents, like me, try to comfort and console and tell them to trust that it will get easier but our words fall on deaf ears. Newcomers to this land know what they are looking for and if you aren’t providing it, they don’t want it. This is the nature of this journey. It isn’t right or wrong. It is just a part of it. I was there, too, at one time. I listened to the stories of miraculous outcomes and of the ones who proved those doctors wrong. I didn’t want to hear about anything else. I needed to know that there was always a chance that our girl would be that miracle and be that one in a million kid that baffled her doctors. And usually, when these questions are asked, there are the comments that boost the hopes of the parents. They often start with “The doctors said our son wouldn’t be able to do anything and look at him now (picture posted of child).” Others tell them not to give up and to believe in miracles.
I sometimes offer some hard earned words of wisdom:
I firmly believe that motherhood (and fatherhood) is the greatest lesson in surrender. Mothering a child with hie/ special needs/ medical fragility is an even greater lesson in surrender. And probably one of the hardest lessons of this whole journey. This is the thing:
There is no way of knowing when or how or what.
But as you try in vain to figure out something that cannot be figured out……….something magical happens. It is subtle and hard to pinpoint when the magic occurs but one day you are going to notice that you are not thinking about the future as much. There will come a time when you won’t compare your child to other kids with the same condition. You will even get to a place where you will no longer look at neuro-typical kids their age and feel a piece of your heart snap off like a piece of peanut brittle (imagine that!!). Eventually, your son or daughter will just be who they are. It will happen in time but being in the meantime just sucks. It is hard. REALLY hard. Chest-tightening-suck-the-breath-out-of-you hard. No one can give you the answer you seek. We can give opinions, share our stories and give you some hopeful comments, but none of us knows what tomorrow will hold.
Celebrate the great big things like a hint of a grin, a peaceful sleep, the lifting of a head during tummy time and every other moment that exceeds the last. For some of us, this includes having our child with us one more day. Stay in that moment and celebrate big time! Whatever the outcome, truth be told, your child will amaze you in a way you cannot even imagine! That I do know. And soon, you will know it, too.
“She’ll Be Fine….”
I heard this statement more times than I can count after Meredith was born. A broad, hopeful statement announced with such confidence that for many, it would override the grim prognosis given by the neurologist. Sometimes it was peppered with additional claims like, “Oh, she is so beautiful. She’ll be fine” or “Lots of kids are a bit delayed. She’ll be fine” or “The doctors don’t know what they’re talking about. She’ll be fine.”
I am still not certain if the ones saying this actually believed it or if they were just trying to be positive in a very negative situation. They might have truly thought that cuteness was a measure of how a baby will turn out. This is reflective of the other belief that with enough love and prayers, miracles can happen. The problem with that is when miracles don’t happen, you can’t help but wonder if perhaps you would have loved a little harder or prayed a little more, things would be different.
I tended to lean more towards the knowledge and experience of our neurologist. I would nod and smile at those who would state “She’ll be fine” with such gusto and sureness that I couldn’t bear to shatter their dreams for our daughter. I would lead them to believe that I, too, knew she would be fine. The thing was, I knew the complete opposite was true. She wasn’t going to be fine. In fact, she was going to be far from fine. She wasn’t going to talk or walk or eat or dance or skip or sing or hug or do an extraordinary amount of things. The one thing I knew for sure was that our girl was not going to be fine. She was dealing with a brain injury so extensive and complex that the mere fact she was still living was our miracle and I knew that this would likely be the biggest miracle of all; the fact that she survived her birth.
“She’ll be fine” was expressed in an almost patronizing fashion. Beneath “She’ll be fine” was “Quit being such a worry wart. Let’s not entertain the reality of what you are dealing with. You are such a drama queen. Seriously, she’ll be fine.” And it was often punctuated with the flip of a hand and I usually felt like maybe I was over reacting, maybe she would somehow, with enough hope and faith and prayer, be fine.
All of those people from the early days were right!
I have rarely been wrong when it comes to Meredith but all of those people who brushed off my concerns and worries with a flippant, “She’ll be fine” were right all along.
I do know, though, that their version of “fine” was very different than what “fine” has come to mean in our lives. Back then, “fine” meant she would fully recover, she would be neuro-typical and even “normal” (whatever that means) and “okay.” It was an attempt to ease our worries and invalidate our concerns.
Look up the meaning of ‘fine’ and you will discover that it means ‘of high quality’ and is associated with words like: excellent, first-class, first-rate, exceptional, outstanding, superior, splendid, magnificent, exquisite, select, supreme, superb and wonderful.
“She’ll be fine?”
You bet she is. She is finer than fine.
The last almost twelve years is a blur of inhalations and exhalations, of periods of memory loss and of tens of thousands of moments that flicker through my mind like one of those ViewMaster toys from my childhood. I can sit quietly and access moments as though flicking through a ViewMaster reel…tiny frames of moments that were lived yet seem so far away that I wonder if they really did happen afterall. If it weren’t for the thousands of photographs taken over the years, I suspect the majority of our lives parenting Meredith would be forever lost in the abyss of mind altering exhaustion and unrelenting stress.
Sometimes, my husband and I will remember something out of the blue and will share it with one another. It is as though we have uncovered a long buried treasure. These little episodes of memory recall surface without warning and we are always shocked at how the details spill out once the memory is triggered. We will both try to fill in the blanks and sometimes we nod in agreement and other times, we wonder how our perception of one particular experience can differ so vastly. Of all of the events that will remain unearthed and of all of the events that work their way to the surface like a piece of glass embedded in your heel, there are a handful that stand out and that illustrate the most defining moments of this parenting path. The night we met the Walker family is one of those moments.
In the fall of 2009, we were preparing to bring Meredith to the Children’s Hospital of Eastern Ontario (CHEO) for hip surgery as her doctor could see from x-rays that her hips would soon start to dislocate if we didn’t intervene. We knew that this would be a straightforward surgery but all surgery carries risks especially for our medically complex children. I was very stressed in those days and meticulously planned every detail. We would be living away from home for at least two weeks and after a brief stay at CHEO we would be moved to Rogers House (pediatric palliative care home) which would provide transitional care for our little family before bringing Meredith home. At that time, we were still holding Meredith fifteen hours a day and I couldn’t fathom how we would do this with most of her body casted with her legs splayed out resembling a frog.
The surgery went well and we moved into a room shared with another family. Meredith was loaded with medications to help with pain and to keep her calm as the last thing we wanted was for her to fight the fact that she was on her back in a full hip spika cast (both legs up to rib cage). We settled into our room and by evening Tim was heading out for the night to sleep while I did the first shift. The family next to us had a similar arrangement and the mother left around the same time. Not long after, the father of the child in the next bed popped his head around the curtain and said, “Sounds like you have a similar model to us.” You see, Meredith and their son were making their usual noises and I had suspected our roommate was a lot like Meredith. It turned out their son was in hospital to get a feeding tube; a surgery that Meredith had in 2004 at just six weeks of age. Their son, Griffin, had already been through this hip surgery two years prior and so we were able to exchange tips with one another about what to expect and what improvements we might see. It was clear that Griffin’s dad, Dan, had a healthy sense of dry humour and we connected very quickly.
The next morning, Griffin’s dad wheeled him over to Meredith’s bedside so they could see one another. Up until this point, Meredith had never met another child even remotely like her. They looked at each other as well as they were able to and in that moment things changed for us. This little boy and his family represented far more than a chance meeting of a similar family. These things would be revealed in time.
As it turned out, they were heading to Rogers House as well for transitional care. A few days after Meredith’s surgery, we celebrated her 6th birthday at Rogers House. When I talk about defining moments I will tell you that one of the most heart melting of these was when on her birthday, there was a knock on our door and in rolled Griffin (with the help of his mama, Jen) bringing birthday flowers to our girl.
As I reflect on this moment six years later almost to the day, I cannot put my finger on what exactly changed for us but I suspect it was very simple. We discovered that we were not alone in this parenting adventure. At this point, social media was not like it is today and we were very, very isolated in our experience.
Before long, we made plans to get together once our kids were healed up from their surgery. Dan and Jen (Griffin’s mama) also had a two and a half year old daughter. In march of 2010, they made the 100km journey from their home to ours for lunch and to celebrate Griffin’s birthday. He was just three months younger than Meredith. I have never felt more regular than I did that day walking to the park with our new friends and our kids. For once since Meredith’s birth, I felt like we belonged. We went to the park and hauled our kids out of their wheelchairs and down the slides and there was lots of laughter and a sense of normalcy which we hadn’t felt in a very long time.
During this visit, Dan and Jen attempted to recruit us into the parent support group that had started at Rogers House. This was a monthly meeting for parents of children with medical fragility/ life-limiting illnesses and they felt that I, especially, could benefit from this. In those days I was sleeping rarely and found myself on the brink of burnout on a very regular basis. Dan was the primary caregiver to Griffin while Jen worked outside of the home. Dan urged me to give it a try. I attended the following month and very quickly knew that I had found my tribe.
Over the years, we got together when we were able and Jen and Dan came to our home for Meredith’s birthday party each year. Eventually, our visits had become few and far between because neither Griffin nor Meredith travelled well. Dan and Jen also added another child to the mix and so things got more complicated as time went on. But over the years, seeing Meredith with her friend, Griffin, even briefly, brought more joy to our lives than pretty much anything has.
This past spring, Griffin’s parents were given a devastating prognosis due to complications of scoliosis and Griffin was given six months to live. About a month ago, things took a turn for the worse, and Jen and Dan pulled Griffin from school knowing that the end was near. On November 23rd at 5pm, Griffin died at home surrounded by his parents and grandmother. He was eleven years old.
Like Meredith, his traumatic birth outcome changed the course of the life his parents had dreamed for him. The eleven years that he lived proved to be challenging and certainly not without suffering at times. His parents loved him fully and were dedicated to giving him the best quality of life that could be provided. My heart broke in the days leading up to his death. It broke for his parents and all of the people who know and love them. It broke with the knowledge that one of the most influential people in our daughter’s life would no longer be a part of it. One could argue that their time together was brief but duration of time spent together does not reduce its meaning. On some level, I think they recognized themselves in each other.
Griffin gifted our family with connection and a sense of belonging. As a result of their meeting, we were brought into a tribe of parents that share a similar experience and this has broadened our support system and moved us out of isolation. Griffin was Meredith’s only friend who was “like” her and since she doesn’t attend school, he really was her only friend that she spent any time with. When we first met the Walkers, I never imagined that six years later, we would be preparing to gather tomorrow to celebrate Griffin’s life. I will be forever grateful that Dan popped his head around the curtain that night in November of 2009 and introduced us to a whole new world that we had yet to become a part of.
I will miss you, Griffin. Thank you for all that you brought to our family. You will never be forgotten.
It all started a couple of months ago when a pathetic-looking, stray kitten was found under my van. He was in rough shape and in obvious need of nourishment, love and a good once over by a Veterinarian.
The unfortunate reality is we are not pet owners. In the nineteen years that my husband and I have been together, we have owned a total of two cats (a brother and sister) who came together and in the end, left together. They were good pets but not fond of our screaming, unpredictable new baby and so after leaving many clear signs that they were not happy with the new addition to our family, we had to let them go.
Over the years, many people enthusiastically told us how “wonderful” a pet would be for Meredith. They would say things like, “I’ve read that children with cerebral palsy do really well with dogs” or “Wouldn’t it be so nice for Meredith to have a cat?” Yes, I suppose it would be but for most of the last twelve years, the thought of putting any more energy into giving care to another living being or thing, overwhelmed me and we just didn’t entertain the idea for more than about three seconds. We didn’t even have a plant in the house. I was serious about my caregiving tank being pretty much maxed out.
But the last couple of years have been a little less draining and I have been able to work more out of the home. My husband has always secretly wanted a pet but knew that it was a sensitive topic to broach.
So, this little kitten shows up and we try to find the owners but he isn’t claimed. The weather was rainy and windy so we provided shelter, food and water for him and I did what any responsible potential pet owner would do; I made an appointment with the Vet. As cute as he was, he wasn’t coming into our house with those manky eyes and dripping nose. I was actually warming up to the idea, though, and was feeling excited about introducing a kitten to Meredith. An hour before the appointment, our little stray disappeared, never to be seen again. Surprisingly, I felt a little twinge in my heart when he didn’t return.
Fast forward to last week when our friends posted a photo of a little stray kitten that had found its way to their doorstep. They were having no luck in finding the owners but hadn’t decided whether or not they wished to add to their pet family. After checking in with them and confirming that he was extremely affectionate, I offered our home if he wasn’t claimed. Five days ago, we became the proud human parents to a five month old male kitten. This is Tate:
To say I have fallen head over heels in love with this furry, sweet animal, would be grossly understated. I love him because he has taken to Meredith as though he was specially trained as a therapy cat just for her and then hand delivered to us. I am so incredibly amazed at how intuitive and caring he is towards our girl and she is equally smitten with him. When I am holding Meredith in my arms, he lies beside us and then reaches his paw up and places it on her arm. I am not kidding. It is remarkable. Her naps are more settled this week since Tate lies across her legs and she can feel his warmth and beating heart against her. Oh, and that purring…….just makes her smile as soon as he starts. They are a beautiful match and I am grateful they, somehow, found their way to one another.
Sadly, we learned after Tate arrived that one of Meredith’s caregivers is severely allergic to cats and so now that he has settled in so well, she has unfortunately had to give her notice. She is sad to have to let go of Meredith but feels the joy right along with us that Meredith gets to experience what every child dreams of experiencing and that is the love of her own pet.
If you haven’t heard, I recently launched this sweet little book where I share life lessons that I learned when I was blindsided by an unexpected outcome. I wrote from my perspective of a mother of a child with medical fragility but I am hearing more and more from my readers that this book should be read by everyone. I agree. EVERYONE needs to read my book.
I spent a lot of time writing about self-care because as caregivers we cannot afford to be unwell or to get entrenched in the bad habits that could eventually lead to our demise. I was obsessed with my own self-care and health from the day Meredith was born. I knew that I had to be well in mind, body and spirit if I was going to provide care to her for the long haul. Over the last 11 1/2 years, I have had periods of time where I have slacked off or simply couldn’t do all of the things that I knew would support my system because I was too exhausted and stressed to head out for an exercise class or make a healthy breakfast when two gigantic mugs of coffee with heavy cream and sugar seemed to do the trick. And really, is there anything wrong with eating toast and peanut butter for dinner and crackers and hummous for lunch??
In the short term, no. There isn’t anything wrong with getting through the day (or the night) however you see fit. If you have parented like I have, you know all about survival mode. In fact, anyone who has been a parent knows about survival mode. Parents like me, get stuck in that mode for months and even years in a row.
On page 27 of my book, I write:
“If you are further along on the road and have evaluated your own self-care practices only to discover a very low score, it is never too late. Even small changes can yield big results in the long run, such as resilience, a strong immune system, a happier mood and a greater ability to cope with stress. The more you care for yourself, the easier and more natural it becomes………..Practice preventative healthcare so that you do not crumble under the strain of the realities of your life. It is more than possible, it is a necessity and the choice is up to you. Begin now.”
This is where ‘practicing what you preach’ rears its persistent head. I have been slacking in the self care department for a while now. I generally eat whole foods and feel relatively good. The problem is that I have also become somewhat of a sloth and have gotten into the habit of consuming a daily glass or two of wine. I know, I know…….not the worst things I could do but for me and the way my body operates, this “health” regime isn’t cutting it. I am carrying a round many extra pounds and realize that some of my ailments like excruciatingly painful periods probably have to do with a hormonal system that isn’t quite up to par. I know for a fact that starting my day with that glorious hot beverage of coffee (don’t forget the cream and sugar) and ending it with that even more glorious beverage of red wine (or two) is not helping an already over taxed system.
The most interesting thing to me is that the moment we exhaled and settled into the fact that Meredith was fully engaged in a stable, somewhat predictable phase of her life (the first one!), our self-care habits flew right out the window…..almost immediately. It was like we, too, could relax and ease up on the pressures we had placed on ourselves in an attempt to stay healthy and vibrant even in the midst of the stress we were under. And we jumped in to those bad habits with both feet; making up for lost time it seemed. We are starting to get the feeling that these days are winding down and life as we know it will change in the coming months and not in a good way. I know that there are big battles ahead and that we again, will need to be in tip top shape to handle them.
So, I did what any reasonable person would do. I signed up for a 12 week tune -up and balancing program offered by a local integrative health centre. Today is Day 1 of 30 days following the Whole30 program which will be followed by a re-introduction of the foods that might be wreaking havoc on my system. I already know the culprits but choose to ingest them anyway no matter how rotten they make me feel over the long run. Starting today, those culprits have been denied access to my body. Finally the last 30 days is about making this a lifestyle change and maintaining the healthy status I will eventually return to in a matter of 12 weeks. Did I mention I have signed a contract and will be monitored by a Naturopath, a Nutritionist, a Personal Trainer and a Mindfulness Coach? I have had to commit to attend one group meeting each week where different topics are discussed like impact of stress and the role of hormones in our bodies. And finally, I have to attend two bootcamp-type classes per week. I will now be held accountable because I have signed a contract and I have written a blog post so there is no turning back now.
It is humbling to admit that sometimes we need to get on board and practice what we have been preaching. It’s okay to fall off the wagon. The main thing is you eventually get back on not only for YOU but for those you love.