I am juggling a lot of roles these days and the hectic pace has left little space for creativity to flourish. I haven’t been inspired by any moment or experience in such a long time that I am starting to wonder if I have writer’s block.
My busy-ness is not going to let up anytime soon. This past fall I enrolled in a seven month course through the Celebrant Foundation & Institute, a premier organization that trains and certifies Celebrants. My last class is on Wednesday and then, after I receive some final marks, I will officially graduate in May as a Certified Life-Cycle Celebrant. I chose to major in Funerals/ End-of-Life and will soon be adding personalized, meaningful funeral/ memorial ceremonies to my list of offerings. I am both nervous and excited about this new role.
Just as I graduate, wedding season will be in full swing and I have seventeen marriages booked between late May and early October. To say that I will be busy this summer is an understatement. Thanks to my training, I offer unique wedding ceremonies that reflect each of my clients. What this means is that I have seventeen, original marriage ceremonies to craft, write and perform in the coming months.
I have continued to teach, run workshops and cast pregnant bellies.
In the midst of all of this, there is my most important role: mother to Meredith. It has been a stressful winter with Meredith growing longer and heavier and our days and nights needing a lot of tweaking (to put it lightly). She still does not tolerate her wheelchair if she is stationary for any length of time. We did accomplish a lot last April when we went through Lap Rehab and went from holding Meredith for fifteen hours a day to not holding her between the hours of 8am-5pm. To this day she gets held in the morning for about an hour and a half and for two hours in the evening. This has been a gigantic improvement but we now need to take the next step. I will write about that in an upcoming post.
On this sunny Saturday, I wanted to sit down and connect with all of you. It has been a rough few weeks and yet I am confident that inspiration to write is just a moment of peace and quiet away.
We have all been there at one time or another. That place of waiting: waiting for test results, waiting for news, waiting to go into an appointment, waiting for a time slot with a doctor who might have answers.
On Monday, we went through the various stages of waiting when our child required a procedure in the OR. We arrived at 11am to admitting and then made our way to the third floor to Day Surgery. There we waited until we saw a nurse who asked the usual questions and gave Meredith and her mermaid doll bracelets. Then back to the room where we waited to be called for the long walk to the OR.
It is the waiting that is always the hardest. Although a GI scope is a fairly routine procedure, there is always risk and worry involved. Risk that she will have a negative reaction to the anesthetic. Risk that steady hands won’t be particularly steady during the procedure. Worry that her heart rate will drop dangerously low like last time. Worry that her insides are in rough shape and that the reflux hasn’t been managed as well as we had assumed. Worry that the worst could happen when we hand our girl over to the experts who seek answers.
We were finally called and the walk to the OR began. We were greeted in the hallway by our GI doctor and the Anesthetist. Both were kind and empathetic and then they were ready. I was gowned and masked and I carried Meredith in my arms to the OR where she was put to sleep. My husband waited in the hallway for me to return without our daughter.
This is when the real wait began. Busy minds need busy hands to keep distracted from any scary, worrisome thoughts that might find their way in. We went to the cafe and had a snack and chatted about how long it would take and what our plan was if they insisted that we stay the night. We wanted to avoid that at all costs. They said it would take 40 minutes and we checked the time often only to find that a moment had passed. We returned to the third floor waiting room and just before entering we ran into people we know which was a welcomed distraction.
Finally, the wait was over; much earlier than anticipated. We saw our doctor walking towards us with papers in hand. We tried to read her expression. Was she coming to tell us bad news or was that a look of contentment on her face? She approached us and announced that the procedure was done and that Meredith did great. She showed us pictures of the inside of our daughters stomach and bowel. Very cool. We got results and it was time to join her in the Recovery Room. Only one parent allowed and so I had to continue the wait in the hallway not knowing how she was doing or when she would be ready to go.
An eternity later, my husband emerged with our girl in his arms. We were finally reunited and we were flooded with relief especially since we had been informed that they were comfortable sending us home as long as we were comfortable taking her home. You bet we were. The wait was over.
It has been a long while since I have written. It has also been a long while since I have seen blue skies and sunshine. Welcome to winter in Eastern Ontario, Canada. I generally welcome winter after hot summers. I naturally wind down in the fall and into the winter months. This period of hibernation is a rest from the busy-ness of life that is experienced throughout the rest of the year. This year, though, it has seemed endless.
This year has been one helluva long and dark winter. I really do not remember a longer winter except maybe that one in 1993, Peterborough. I was in college, had no energy, lived on carbs and gained a whack of weight in that period between December and March.
Fact: On the first day of spring last year, it was 22 degrees C. This year it was -7 degrees C or something like that. It was bloody cold.
Fact: Last year, we had one snowfall after the first week of January. This year the snow has accumulated to the tune of 220cm…..double to what we received all winter last year.
Fact: Thanks to hibernating like a bear, I have emerged sluggish and well padded for the coming spring. I have packed on a whopping 12 pounds on my 5ft. 1′ frame. Good for me!!! At least I know if spring never comes, I can live well into the fall off of my own body mass
Again, I do not mind the winter or the cold. Temperatures here have been known to dip down as low as -45 degrees C with the wind chill. That is the equivalent to -49 Degrees Farenheit. MINUS 49 Degrees F. Seriously. That is extreme cold. But the sun usually shines when it is this temperature and the sky is usually a vibrant blue against the stark white snow. This year we have had a lot of snow and a lot of days where the sky and the ground are the same hue of white. There were days when I was driving down the highway and felt as though I were driving through a black and white photograph. The highway was white from the salt used to dissolve the icy conditions, the bare tress were black against the white snow and horizon. Everything…..black, white and grey except for the odd green highway road sign.
There was hope when Winter Solstice finally arrived and I could feel the shift in my spirit that light was coming. I soothed myself with the knowledge that we could now count down in weeks instead of months until spring would arrive. Spring is having some separation anxiety or something this year because by early March, I was seriously beginning to question as to whether or not spring would ever arrive.
The urge to hibernate was strong this year. I had a primal notion to put all commitments on hold and eat from a banquet of carbs, drink wine and view movies in darkness. Everything slowed down which is natural since I am a mammal. If it wasn’t for the energy I still had and my good mood, I would have started to believe I fell victim to some sort of Seasonal Affective Disorder.
Turns out, I am not alone in my absolute exhaustion with this winter that has long overstayed its welcome. It has become almost the norm on news channels to see people completely flabbergasted by the latest dumping of snow. It was becoming laughable.
And then, after a particularly difficult week, we awoke this morning to sunshine and blue skies and a predicted temperature of +8 degrees C. I have been smiling since I woke up at 5:15am. I sit here with my office window open and joyfully take in the sounds of spring: melting snow, birds singing, the odd dopey housefly emerging form wherever they go in the winter. I am signing up for a yoga class and planning a long walk outside today. I have little desire for carbs suddenly and instead eat a bowl of greek yogourt and raspberries. I want to put my hands in the earth, walk through mud puddles and unpack my spring/ summer clothes. I feel like standing on my porch and singing at the top of my lungs right along with the birds.
Spring may actually be arriving right before my sunken, tired eyes.
Blog posts and book writing will also emerge from hibernation and things will be given fresh, new energy.
agonal breathing. acute neonatal encephalopathy. hypoxic ischemic. prognosis guarded. extraaxial T1 hypersensitivity. extraaxial hematomas. extraaxial hemorrhage posterior to left occipital lobe.cerebral edema.multiple signal abnormalities. widespread areas of ischemia. patchy heterogeneous echogenicity. small subdural bleed. diffuse brain edema.
These are some of the words sprinkled throughout the initial paperwork of assessments when Meredith was just days old. Big, scary words that initially left us wondering what exactly becomes of a person with hypoxic ischemic encephalopathy, etcetera. It didn’t help that a well meaning (??) Pediatrician came into the parent cuddle room in the NICU and sternly told us how dismal and dire the situation was. As I held our week old baby and rocked her, she said, “This is very serious Mrs. Graham. Your daughter will never walk, run, eat, speak or do anything that other children do. Being in a wheelchair is the least of your concerns.”
Gazing at her newborn face took almost all of my worries away.
“And so what are we going to do then? You have a lot going against you, kid, but you have us and we love you no matter what.”
I only recently requested the original paperwork from those early days. We went by verbal descriptions of Meredith’s diagnosis in the beginning and it never occurred to me to see it all written down in black and white. A few weeks ago I was sent the results of the ultrasound of her brain and the MRI findings from when she was five days old among other admission and discharge reports that I requested.
I knew that our daughter suffered a massive brain injury at birth. That was clear. I never understood how affected she was until I read through the findings of the MRI as well as the detailed notes handwritten by the man who is still our neurologist today . He wrote about a 15 hour old female who had been admitted to the children’s hospital’s NICU in the early hours of December 6th 2003.
Had I accessed these reports then, I am not sure if I would have gone into mothering Meredith as instinctively as I did. Perhaps, I would have deemed it hopeless and unnecessary to bother at all. These words that are forever etched on these pages confidently claim the most probable future for Meredith. The Pediatrician tried to warn us of what was to come as though that would ease the unfolding of the days yet unborn.
After reading these words, my first thought was, “Oh my goodness, Meredith has some serious brain damage going on.” This was followed by laughter as I watched Meredith sitting on her daddy’s lap in her owl pajamas, vibrating with bliss as he played with her. I thought of all of the glorious years we have had and the sheer joy and depth of her living. I realized they are only words. Words do not define a person nor can they confine a spirit.
I am grateful I was not interested in these summaries and clinical reports initially. By not knowing in detail what we were dealing with, we were free from the limitations starkly communicated by these words. We were free to wait and see how this little flower would bloom on her own time and in her own way.
It turns out that those big scary words shrunk in the shadow of this bright, glorious flower known as Meredith.
Author’s note: The following post was originally published on March 3rd 2012 after the passing of Connor McHardy on February 29th 2012. Hard to believe a year has passed. If you are a newcomer to this website, you may have missed this post. I think it is worthwhile posting once again as a gentle reminder. I also want his parents to know that although 365 days have passed, we still hold Connor in our thoughts. I dedicate this in memory of all of the little ones who have left this earth too soon.
We often hear of those who are left behind after a death, expressing that they wished they had just “one more day.” If the death was unexpected, there is a sense of panic with the realization that this opportunity will never come to pass. In our day-to-day living, we tend to spend the majority of time in the future. We have a list of things to do and daily tasks that need to be completed before we can lay our weary heads on our pillows to sleep. Unless you are a Buddhist Monk , it seems next to impossible to live in a state of full awareness of every second and moment of your day. But sometimes, life presents experiences that force us to become acutely aware of how very precious one random and ordinary day can be. This week, friends of ours were devastated when their young son passed away quite suddenly. He was a child like Meredith in that he faced many, many challenges in his short life, medical and otherwise. He was born to loving and exceptional parents who described him as possessing “extraordinary strength, courage and indomitable spirit.” Parents of children who have medical fragility and who have short life expectancies tend to live in a state of ‘knowing’ and yet like all parents, we, too, get caught up in our day-to-day lives and can just as easily be taken by surprise as much as anyone.
After bathing Meredith this morning, I buried my face into her warm neck and I inhaled. I kissed her over and over and she made the cooing sounds that she makes when she is happy. And then I started to weep. I wept for the parents of this little boy and I thought of how shocking their early days without him must be. I thought of how this hit so close to home and if Meredith was suddenly gone, how would I spend that “one more day” if given the chance. This is what I came up with…..
If I had one more day, I would skip the morning dishes, and scoop you out of bed in those early hours when you are still a bit groggy from your night time medications. I would curl up on the couch with you in my arms and wrap us in the crocheted blanket my mother made for me when I was a child. You are so very cuddly in the early morning so I would take advantage of the lack of spasticity and I would hug you tight, kiss the top of your head, gaze into your eyes and stroke your cheeks. I would chat with you about all of the things we would do that day.
If I had one more day, I would get a hold of your bare foot and sniff your toes while exclaiming, “Peee-uuuuu!!!” and pinching my nose. You would smile large at my dramatic inspection. I would certainly bath you as I love to hear you giggle when I first put you in the tub and you feel the warm water swooshing around your belly. I would not rush and impatiently wrestle with you to achieve the goal of cleanliness. Instead, I would soap up your back and play silly games and take in all of your glorious, crooked body parts. Afterward, I would wrap you in your gigantic towel and tell you how much I love my little mermaid. I would take my time putting lotion on all of you and I would carefully clip your finger and toe nails. On second thought, I would skip the nail clipping as you hate it so much. I would jiggle my body imitating you shivering and you would smile back knowing that I was playing with you.
If I had one more day, I would pay attention to the countless mundane tasks in our day like changing the dressing around your Mickey for the 2800th time since 2004 (give or take a few) and I would carefully comb your hair watching you wiggle and arch from the sensation of the comb on your head. After you were dressed and ready, I would put my face up close to yours and tell you how pretty you are. Again, you would smile, because you understand me even though words are not an option for you.
If I had one more day, I would not be in such a hurry for the Family Relief Worker to arrive so that I could get busy with all of the things I need to accomplish in a day. Actually, I would cancel her shift so that we could just hang out on the couch all day, playing and giggling and goofing around. And daddy would call in sick to work so that we could all be together in our house without anyone coming in.
If I had one more day, watching television and checking email and Facebook would not be important or necessary to bide the time. Our time together would be so precious that I would not take a moment for granted. I would be conscious of every second and everything you did in that time. I would study your little hands and how they open and close like a sea anemone. I would examine your ears, eyelashes, lips and your little nose as though I were a scientist and you were under my microscope. I would sniff your neck and try so very hard to remember your smell because it is ‘your’ smell and I would know it even if you were lined up with 100 other children and I was blindfolded.
If I had one more day, we would read more stories and repetitively play with the toys that you love but that give me a headache after a while. We would also sit in silence and I would listen to the sounds of your breath and the unique murmurings you make when you are content and sitting on the lap of someone you love. I would play the “I Love You” game over and over as long as you smiled over and over. I (pointing to myself) Love (placing my hand over my heart) You (placing my hand on your chest)! And then the reverse: And You (pointing to you) Love (placing my hand over your heart) Me (placing my hand on my chest)!!
If I had one more day, I might not put you on your floor bed as much so that I could get a load of laundry folded or get supper started. I might lay you on your floor bed to give my arms a rest but then I would lie beside you on the floor and read stories or blow bubbles or whatever. I would lay my head on the pillow beside yours and watch you checking out my face at such close range. I would hold a mirror up in front of us and observe how perfect your skin is while mine is really starting to show its age. I would watch your reaction when you can see yours and my reflection in the mirror side-by-side looking back at us.
If I had one more day I would tell you all of the things that sit in my heart. Even if you are unable to understand all of my words, I would feel good knowing that I shared them all with you. At the day’s end, we would lie you on your floor bed and eat our dinner in your room while sitting on the floor. We would sing songs and play ridiculous games because your dad is the absolute best at creating ridiculous games. You would vibrate from overwhelming giddiness and soon it would be time to get ready for bed. I would make sure you had on warm socks and I would wrap you in a soft blanket and hold you until you started to nod off. Rather than putting you into your bed at your usual time, I might just sit and hold you a little longer if I had just one more day.
There are never enough moments. There are never enough hours and there are never enough “one more days” to sustain us when we are forever separated by death from the ones we love and cherish. So even if magically we were given one more day, it would never be enough.
What we do have is THIS day and if you are blessed enough to have your loved ones surrounding you, healthy or not, spend one day living as though it were your “one more day.”
Why? Because you can.
I dedicate this post with love to Connor McHardy and his parents.