Tuesday, February 16, 2010

Hope

Yesterday was difficult. I stopped recording seizures after six….they were just all bad. I went to bed discouraged, fearful and very sad. I not only dragged myself out of bed this morning, but I had so much hope. My mind was racing with thoughts of hope and energy. The fear was gone replaced by the resolve to be positive. Not the fake optimism that ignores the problem. I cannot do that. The choice to look forward and know that this will end, she will be better and it will be a new chapter for us. You cannot convince me that there is no spiritual realm working behind the scenes. How is it possible to cry yourself to sleep and wake up glad to see the day when nothing has changed? How is it possible to be so weak in one moment, and then find the strength to wait out another seizure with screaming of terror and intensity so strong it threatens to break you?

For all who are walking this journey with us, thank you. Thank you for your prayers, your thoughts, your kindness to refresh us along the way. I feel incredibly blessed.

Monday, February 15, 2010

Everything has changed these past few days. It is moving so fast into the abyss. I held her last night as she cried and screamed. She begged me to help her. Begged me. I felt powerless. I felt hopeless in those moments. We all did. Gathered around her bed the sadness was palpable. As she recovered she was apologizing, comforting, wiping Samee's tears and patting my back. There is nothing so difficult as being helpless to someone who is so sweet and kind.

I slept fitfully, straining to hear her wimper or move. When I woke up, now hours ago, I lay awake thinking about her...thinking about the effects this is having on Samee...this is hard. This is really hard.

Thursday, February 11, 2010

The Internet Age

I could not feel more grateful to have so much information available to me 24 hours a day. This morning I found an article from a Neurologist that had gone through a similar ordeal to Mik. Being on the other end of the stethoscope was insightful for him, and for me to hear how hard it was for his family to leave him alone - even after being seizure free for years, helped me to realize I am not paranoid or fearful, just normal.

Dr. Kappa's epiphany was that normal life had ended the first time he had a seizure. Nothing dramatic.... except the loss of freedom and the invasion of grief. Your journey becomes different...not hopeless....not unhappy....just profoundly different.

Wednesday, February 10, 2010

February 8, 2010.....sigh

My daughter had the pleasure of being summoned to Neurology this morning, just before her Neurosurgery appointment. We left with lots to read about side effects from new medications, and also about a 24 hour monitored EEG. They are hoping to do this as soon as possible to determine that the seizures are from her right temporal lobe. Once this has been determined there is consideration of more surgery. Her MRI showed that there is something still in the place of the evacuation of the blood clot. This is most likely tissue that was damaged from the clot's pressure. Mikaela, as always, was accepting of her situation. We both tried to hide the tears - both from each other and the doctors. Her neurosurgeon was relaxed with the raw emotion we were trying to hold back. He is so great to deal with and was explaining to the others that we had been going through quite a time. We left each other saying we really hoped we didn't see each other again, knowing that we will. The monitoring will be until she has had 3 seizures...and so we will be hoping that it goes well. One of us will need to be with her throughout and apparently the lights are left on and they try to keep stimulating her. Who can really sleep in a hospital anyways?

I have to say, I keep thinking this is all going to end. The first two days of January were seizure free and I remember thinking 2010 was a brand new year. The thing that most concerns us is the toll this is taking on Mikee. She has been so wonderful through it all, but with the amount of medications and the continual set backs, I cannot help but worry about how she is holding up on the inside. Right now she is laughing with her friend and this morning forgotten. I worry that when she is alone she is consumed by the enormity of what she is experiencing.

The Road Today as at January 18, 2010

I barely recognize myself now. I don’t remember having these thoughts and feelings…and I don’t know when and where they began. I do know that I am quickly becoming what I don’t want to be. I am seeing the transformation and feeling powerless to stop it.

The change seemed to place so gradually that like a frog in hot water, I did not notice the temperature until it got too hot and then I was about to be cooked. Here I am at almost 2:00am trying to recapture the moment of my demise…..the moment that I slid into the abyss of the confusion and allowed myself to be controlled by the emotional underpinnings of her illness.

It all started so positive - positive meaning hopeful. Today it has been 3 months and 6 days of trying to be optimistic. She has been amazing through it all…I on the other hand, began to mask the fear, the exhaustion, and anxiety. I pretend it is not there but turn to sugar or wine, or anything that will seemingly distract me momentarily from the imminent pain of what we are walking through. The problem is, I am becoming what I don’t want to be….I have become the one with the problem. and she the one with the illness.

She sang a Queen song for me earlier today….showing me her friends writing on the wall….”no escape from reality” in beautiful multicolour hit me between the eyes. There really is no escape from reality….not for long….alcohol can numb you momentarily….sugar can please you for a moment…but soon that will fade. Instead I want to find something positive to turn to. Something that will sustain me through the long run instead of sending me soaring and crashing harder back to reality. From where can I find this manna I so deeply need?

The Party

Reluctantly I let her go to the party. I didn’t tell her to her face but she knew. “It will be fine Mom” does not allay my concerns. I know what teenagers need, but I am still inclined to hold her tight and keep her safe. When she is gone it is the first time in almost three months that I am alone with my husband….completely alone. This is foreign to us as our house has been a cacophony of voices and activity. Music has blared, movies played at all hours the dishwasher and washing machine in constant hum…..and suddenly it is quiet. A nice quiet. The quiet that accompanies peace. The quiet that allows for relaxation instead of worry.

We dismantle the Christmas decorations and begin to put the house in order. It feels good to see the extra space. My cell phone is quiet and I am determined not to text or call her. She needs this. Inside I wonder if she is fine, but outside I am determined to show a brave front. We go for dinner and laugh with our eighteen year old and her boyfriend. In those moments I actually forget that I should worry about Mikee. I feel completely normal. Completely detached from any worry. She texts to me and it is to pick her up later….she is feeling great without a trace of an impending seizure. It has been two whole days…in fact the entire year she has been without a seizure.

I breathe a sigh of relief when she returns beaming but tired. It is selfish to think that she is safe now….but it is how I feel. As though we are the only ones that can protect her. I know this is not entirely true. I know that she will need to lean on others but since this all began she has been surrounded by the family like a tight cocoon. For the most part she has accepted the excessive swaddling, and only occasionally has balked.

Tonight has been great for both of us. Mik showed the confidence that she can do things without continual fear. If something happens next time, so be it. She knows she cannot control her health, but she can control her response to her situation. That is what I like the most about Mikee right now. The courage to face what she has to and the wherewithal to know that it might mean things get a little out of control.

Things are different this new year. I am emotionally spent from these past three months but it has also jolted perspective into my life and in the example that a wise fifteen year old has shown me it is my response to the situation that matters.


Afterthoughts…..she did have a seizure that night. She was able to go to a quiet room and it worked out…..

More Stress

November 19, 2009


Stress....I can feel it tangibly in my chest. Laughter seems to lighten the burden, but it returns in the quiet, in the chaos, in moments to think. I cannot ignore this as much as I try. In fact, the more I try to run, the more I have a sense of doom and dread….like someone is chasing me. The burden in my chest compels me to run, but it is also the reason I am running in the first place. And so I stop and listen to the reason of my mind. I ask myself What can I change? What can I not change? How do I find peace in the here and now?

There is no mystery in what I cannot change. I must accept that my dad’s health is on a teeter-totter, balanced at present, but also tenuous at all times. I accept that Mik is now at home, full time with me and schooling. I like this, though it daunts me too. I know that I can drop some of the obligations from my life – the charity lunch I am to organize and chair, the duties at my association. I will not attend a council meeting today at strata and will not do anything about the emails and complaints that will result in the lack of mediation that might incur as a result. I will continue to cook vegetarian although the meals will be less thoughtful and more packaged. I cannot change that two of my children are stressed as they are looking for work in this economy. Their anxiety oozes into the family and infects it with negativity. Mostly, I have had the armor and defense to prevent it from affecting me, however, of late, I feel the stress has permeated the air with acridity. I cannot seem to change the fact that my children – adult children – do not pick up after themselves. Claims have been they have every intention of washing a pot, putting dishes away..blah, blah, blah….however, every morning I find things undone. I seem powerless to change this other than through my own physical efforts at controlling the chaos.

How do you know peace when there is no peace? How do you purpose to calm yourself in the stormy sea you are drowning in when panic has already set in and arms and legs are flailing in an effort to keep afloat? Logic knows that turning on your back in calmness will keep you buoyant, but the same mind and logic will not let your limbs rest. Doing something seems optimal and yet fatal. And herein is the key - I think. There is so much I cannot do. So much I must accept with resolve and grace to walk through. And so, I should not run, or thrash in the sea. I need to turn on my back, look skyward and see the beauty of the clouds. I like to run. It has been my escape and not my enemy. I know how to swim. I am a good swimmer. I will not succumb to the sea. I will breathe and accept the things I cannot change, and realize that living is often cleaning up the mess that others make and choose to ignore.

Laughing Through Stress

November 9, 2009

I have just returned from a five hour drive through mountain roads, music blaring, thoughts racing, and yet peace within. I left my dad alone with his legs dangling over the edge of his bed in ICU. He insisted he was fine, and I was compelled to give him the dignity of letting me leave with him sitting up and the semblance of normalcy. He struggled out of his wheelchair, could not balance well, and then and there he appeared frail, gown gaping, hair askew. When he sat and talked, he was anything but frail. Oh sure, his voice was fainter, his eyes were moist and everything about him spoke of praise and admiration….but frail he wasn’t. “I am fighting this Heather…..not to escape death….death is not something I am afraid of….I am fighting this because Mom needs me….you need me….Ayaka…Mikee…and he continued to name his grandkids. “ Death would be easier than fighting….giving up would mean he didn’t have to work his right hand. It would mean he didn’t have to push to lift his right foot so it would not drag. It would mean that he didn’t have to worry about the plans he and mom had to go to New Zealand in January. “I should cancel these now” he decides. “I can have that surgery and then go” he states. He knows that the surgery cannot be until he is stronger….but ever the planner he is already counting six weeks from the stroke. Mom is not the planner and he knows she needs him.

As I am closer to home and my mind is racing when Mikee’s Neurosurgeon calls. He tells me he is very, very pleased because they found a cavernous angioma. He sounds relieved as he explains that this means it is an anomaly and unlikely to recur. He sounds bubbling. I am sure he is a parent and understands my worry for weeks. His voice and news bring me back to the reality of the past six weeks. Mikee has had a CT Scan, MRI, Cerebral Angiogram, another CT Scan, another MRI and finally a craniotomy to remove a blood clot. She has endured everything with grace, dignity, laughter, tears, courage and fear of the unknown. My dad and mom were there for it all. They arrived after Mik was first admitted to the hospital and got to witness the effects of anesthetic on her as she lay prone for five hours. They were there teasing her as she made us laugh as she was noticing that the ceiling lights were not organized in any sort of pattern….and she was telling everyone she was talking to that she was not wearing any underwear and that she could not even lift her leg or head.

Dad and mom were there when she was coming out of surgery and again, the effects made us all laugh again as she said things unabashedly. Dad was pleased as he brought Mik a Healing Angel to sit by her bed, and me a coin with an angel. He was sure it would bring a miracle. Mom stayed and held Mik’s hand in ICU as I had to be rushed to a dentist for an emergency repair. It was dad who took me and patiently waited in the car. He sounded pleased to help and asked what he could do as that was nothing. Dad and mom made sure the house was clean so I wasn’t stressed when I got home. Dad kept asking what I needed and was ever at the ready to run and fetch me milk or bread.

Then they left for the five hour trek home, amidst unruly weather. Their stress somewhat relieved by Mik’s quick recovery from surgery, but the ever present fear of the unknown weighed heavily on us all. And then, a few days later, dad has a stroke and a blood clot himself. The prognosis is dismal. The odds against him. It was my turn to bring the Healing Angel. I left before the light and drove for 120 K in slippery snow. When I arrived at ICU with the Angel there were things unfamiliar about my dad. Frail, sitting, misty eyed. His emotions were raw as he still was contemplating death and what that might mean to us all. When I brought the Angel from my pocket I saw something different in dad’s eyes. Intense sentiment at the tie to Mikee was apparent, but something deeper. Something much more meaningful was behind the tears and hugs. I believe it was hope.

Just like my time with Mik in the hospital, it feels odd to say how much I enjoyed myself. I enjoyed cajoling with dad and poking a little fun at his weakness. I knew he knew that meant he could take it. He was feisty back and we began our verbal sparring. He would stop sometimes overwrought by emotion….or forget what he was saying. I never let the awkwardness invade us. I pointed out that he was finally normal….because dad was always so sharp…remembering everything, some of us finally might have an advantage. He liked that. He liked that he saw himself as I see him. He was still rattling off phone numbers for mom, who although she writes them down can never seem to read what she has written. He still recalled conversations, details and facts that most people would have forgotten moments later. And so, I jest with him. I joke with mom. I point out the obvious….did you have a bowel movement? Because suddenly I am interested in his bowels….never having been before. I have to add that I just want to make sure the nurse is there to clean it up because I didn’t sign up for that part. He laughs. It feels good to be able to laugh these last six weeks. To know that life is funny sometimes and there is humour in our humanity…in our frailty and when we need it most. Perhaps this is my calling? Perhaps I am to bug patients on ICU wards…to remind them that the things that seem embarrassing or awkward are really quite funny…and we all feel that. Perhaps I should start a tour….ICU without your Gown Tied Up might be the title. There was a rather large, friendly sweet man walking around ICU, gown agape as much as his mouth in a smile. As he walked by dad noticed and pointed out his gown was flapping….”it’s okay dad, he’s wearing a g-string” I quip and mom starts to howl at the absurdity. Dad joins in and I know my tour has started…..

My kids

October 28, 2009

My kids are here to remind me of the angst of youth. The feeling of invincibility, the idealism of an optimist, and the hope of the future. I was accustom to thinking it was up to me to ground my kids….keep their head out of the clouds, shake reality into them. It is they that have done that with me. They dream of faraway travels and off they went. They dream of sky and scuba diving and they did it. I do not fund this extravagance. It is not that they are wealthy. They want it and so they go for it. They find a way to maneuver through foreign lands with foreign tongues. The have scary moments…but not scary lives. Scary to them would be not following their heart. Scary to them would be being untrue to themselves. Scary to them would be listening and following the crowd. Many scoffed. Many gave “sage” words of wisdom about jobs and responsibility and throwing away opportunity. Some were jealous, others curious, others petrified that at 19 they set out, alone, into the great big world. They were fully equipped with a brain, a mouth and a will and yet for many that was not enough.

I have lived through these kids of mine. Vicariously but not enviously. This is their journey. I have delighted in seeing them fly away only to return with stories, adventure and friendships. They have vicariously lived through me too. They have seen my delight in nurturing, my devotion to their physical and emotional needs and my love for learning and life. They have watched us navigate through scary foreign worlds of sickness, recession and relationships. They have observed me living to my calling. How could I expect them to not live to theirs?

Moments to Think

October 27, 2009


It seems like a normal day. Rice is cooking. Kids are drawn to the kitchen by the smell. The dog barks, the phone rings. Normalcy seems tangible in the midst of everything else. Then my twenty year old son engages me in a conversation that I want to walk away from because of exhaustion, but I am compelled to stay at because of the intensity of my love for him. He needs this verbal sparring. He needs a compelling reason to exercise the thoughts that are oozing out of him. He captivates me in a conversation about politics, government, freedom, taxes and life at a time where I have little to spare. His ideas are provocative, shocking and scary to me. His next adventure isn’t to Europe, Asia or Australia. He is determined to set out in the world with little else than his smile to see what it holds. He will go where he lands, without plans, or money. It is his intention to leave it all behind. His optimism at his ability to thrive without is juxtaposed by his negative views in the previous spar.

My mother heart is aching. I want to keep him close to home. I want him to fall in love, have a career, a house….but do I really want it now? This is his challenge to me. He was born an old soul. A soul that thinks and cares deeply about humanity. A soul that is affected by the hurts of others, especially those who cannot fight for themselves.. Injustice to him is a threat to all justice. His reasoning helps me to understand that he does not want to live with regret at never having done what was on his heart. How can I possibly not encourage this?

And so, reluctantly, and with tears, I release him willingly and with all my heart, yearn for him to follow his dream. I long for him to listen to the wind and follow it. I feel lighter in my soul though fatigue is overwhelming me. In the morning I make the trek to Children’s’ Hospital to find out if my youngest needs brain surgery. She is listening to everything as we talk and absorbing our respect for each other. And so, after dinner tonight I make cookies. Again they are drawn to the kitchen. The smell entices them. Normalcy is life.



Afterthought….October 30th Mikaela has a Craniotomy to remove a blood clot from her brain

Gardening and Parenthood

I am just a beginning gardener. I understand enough to plant a few pansies and petunias and usually remember they need water and weeding periodically. From time to time I admire the beauty my efforts and the universe have nurtured. After an interesting night involving teenagers and late night drives I was working with the dirt and weeds. My thought life rarely misses an opportunity to process events – especially tragic or dramatic ones that cannot be forgotten. The weeds were responding to pulling and it began to look cared for again. Being a parent is like tending a garden. You help your children grow, feed them, try to help get over the hard stuff, move the rocks that impede growth. Sometimes you fertilize, or even transplant to a more suitable area in the garden. My heart was responding to my thoughts when I saw one of my pansy plants – absolutely beautifully in bloom, and yet it had already been pulled out from the roots. It was dying but there was no evidence yet. It looked amazing from the outside, but it had no roots whatsoever. It was no longer part of the garden but sitting on the garden. And clearly I realized I don’t want my kids to look great on the outside and be dying inside. I don’t want them to pretend to be part of the garden when they are not. I want them to be rooted, growing still – even if there are weeds and rocks around them.

You could take this further and become a more proactive gardener – never allowing a weed to tarry in the soil. A gardening goddess….but you can never make them grow more. That is part of who they are….and who they are meant to be. Some plants have a longer life, some bloom when they are young, some bloom when they are older. Some things in the garden will be there providing shelter and nourishment, some will sap the others strength and either take over or be culled. Some plants or trees like my cherry tree are both an astounding blessing and hard to deal with. Right now the cherries litter my lawn. The fruit is great but you have to put a lot of effort into getting the fruit picked and keeping it out of the blades of the lawnmower. Some plants take little effort and they reproduce and bloom. An orchid could never grow in my garden because biologically it would not be able to stand it. I think that about children too. Some children could respond to my weeding and water….some would be smothered…others would need more heat. Hats off – maybe on is best – to all fellow gardeners and parents. Our garden has many similarities and many differences. Some of us have more time in the garden, some more desire, and still some love the gardens that spring up naturally – with no care and inherent to the locale. They all have beauty and wisdom to behold.