Friday, December 31, 2010

Looking Forward

I have feared celebrating the lack of crisis lest the other shoe drop. How ridiculous is that? Life really must be back to normal as I can go days instead of hours thinking of seizures, tests, or signs of frailty. Even as I picked up a prescription for Mik, it bore no stigma of sickness or sadness, except at the till. This relief means change is coming.

In a few weeks I will begin a new job. A new career in fact. Many things will change. Meetings, board and bored meetings will go by the wayside. I will not attend my business group that has been part of my life for 15 years. I will most likely give up the hospital committee, the Rotary membership, and will not sit on my strata council.

The kids are prepared...recipes and instructions written out. It is hard to cook for vegetarians and carnivores every night...and so there may be less variety. It also difficult to explain how thick a roue, gravy or sauce should look...and precisely how much liquid should be added while stirring. I do this without measuring...without thought....and yet now I am trying to record everything so that the disruption to our family meals will be not be affected.

I am trying to provide order to the change...a smooth adaptation to the modification. Mik has been my ardent supporter. She encouraged me to get out of the house and spread my wings. She experienced cloistering with me. She saw my life adapt to her situation and fostered the transition that 2011 will bring. It seems there may be more change to come. A move? A change in the business? I honestly don't know what is coming....but I know that I am expectantly lingering and alert......and not for the other shoe to drop.

Friday, December 17, 2010

She had to do it all over again. Push, pull, follow, close, open, walk, poke with a toothpick, reflexes, finger to nose, nose to finger, the finale being a long look into the back of her eyes. The resident calls her a pro. Mik said it was because she had so much practice. This was probably the 100th neuro exam she has had, without exaggeration. She and I know the routine by heart.

We recall her incident of two weeks again. Sudden loss of strength that is prolonged. We recount times, behaviors, mannerisms, energy. We are assured as the CT Scan is clear that it was a blip. Something unexplainable. Something we might have never noticed if we had not been hypersensitive to neurology tests.

The doctors notice her hair immediately. The resident claims her mom would never allow dreads when she asked. I am sure her neurologist is not quite sure, but notices and comments on the new "style". (I can almost hear the quotation marks in her head). My sweet little daughter, resplendent in a Pointed Sticks tee and some kind of hemp hoodie looks so old and yet so young right now.

The exam complete, the team is pleased. They have increased her medicine at night for her "auras", but I could see there was relief for them as well. There was no talk of when to return either. They are confident enough that we will keep in touch if there is a change.

Is this enough for me?? For now?? It must be....To see they are pleased....relieved must assuage any fear that I hold...and so I will move forward from here....and I actually feel the confidence radiating from Mikee herself.....confidence in the future...in tomorrow..and that yesterday provided much of today...amen!.

Sunday, December 12, 2010

When a child complains that they have lost strength in the their arm, you might suggest that they have lifted something too heavy or strained a muscle. When Mikee tells me this, at first I paid no mind. The next day she sent me a message that her arm was really weak. My brain scrambles to find an explanation. I defer to Neurology and still have the number memorized. I am told she needs to come in. I am right by the hospital now but Mik is 35 kilometers away - so a round trip of 70. I ask if after school would work and he says she needs to come in immediately. He is concerned it could be a stroke or something serious. Panic mode sets in. I can feel my brain take over my body mechanically while I try to remain calm. We get in to Emergency as quickly as I can safely get there. It is all too familiar. She is hooked up to IV's, Neuro tests are done every few minutes. Our story repeated again and again. Mik is efficient. She knows what to do. Finger to nose, nose to finger. Push, pull, eyes left, right, left right. Shoulders up and down.

Next is a CT scan. We are in so quickly, I know they are concerned. In just moments our anxiety is released like the prick of a pin in a balloon. There is no cause for concern. We gather our things, wait for her IV to get removed and head home in the rain and dark.

Guilt almost invaded me. Guilt at rushing her in, unnecessary tests, perhaps unwarranted concern. The explanation was that she probably had lifted something too heavy or strained a muscle. But who can know?

Saturday, October 23, 2010

There is a lump in my throat as I mechanically walk through Costco...numb. Tears well at the thought of the past 24 hours. Disquiet over Mik is only part of the gloom that is aching in my throat. Her day yesterday was bad and last night was a reminder of how burdensome our year has been. The awkwardness for some who happened upon a bad day was onerous. Tears and fear, and a deeper understanding of the struggle that has been our companion. I am used to this, for the most part. I am used to the crying, the anxiety, the reaction of others. I try to assuage their pity but today I welcome it.

Darkness enveloped as dear friends disclosed the apparent dissolution of their relationship. Nothing would have prepared me for the grief that suffocated me. The hopes and dreams I have and hold ran through my fingers. I am left bereft.

Today, Mikee is coifing for a birthday party. Still exhausted from the physical toll of yesterday, I see hesitation in her steps. My respite is a walk with my friend. The air clears my head and gives perspective, though despondency remains.

In a few days I will be removed from this to a fantasy world of service and sun. I will be waited on and satiated. I will have the luxury to linger in bed, or by a pool. I am escaping, momentarily the reality of my heavy heart, hoping a novel will provide elusion and diversion, refreshment and renewal.

Monday, October 4, 2010

I have enjoyed the calm of health and wellness. She returned to school and although things have happened, there has been little I could do - or really ever could. We have also had an addition to our home.

I did not birth her, though I was outside the door and saw her moments later. We have been a part of her life, even though she has lived in Alberta for the past ten years. Now, with their house for sale, and their life in limbo, she has joined our family to start school so that the transition will be easier when her parents join her. So now, Mikee has a gregarious voice, a bravado questioner, and ideas like "let's take yoga" or "let's shoot hoops at all the neighbours around and see if anyone comes out and yells at us". Mik would never think of this on her own...nor have the gumption to join a class at the rec centre by herself. Meadow allows her the freedom to do what she really wants to do, but lacks the courage. And so, this year is another change for us. Even one of her doctors has released her as a patient. She still sees Neurology and Neurosurgery for follow up, but the appointments are getting fewer and farther between. Normalcy. ahhhhhh.

Tuesday, September 21, 2010

As the rain was blinding me I felt regret at wishing fall was here. Longing to languish in the sun has replaced the need for routine. Friday was such a great diversion from both the weather and routine. Twenty five of us awaited her return in hopes of overwhelming her with balloons, noise and hugs. She ran in the door, taken aback. She then proceeded to hug and thank every person. "Gramma" her voice lilted, and then noticing others - "Grandma and Grandpa, Thank you for coming." She did this with all of them. Her sisters, her brother she sees every day, all her friends. I love this about her. She notices everyone, and includes them. I also love that when she was thrown in the pool by Andrew, one by one the party started to join her. Even Gramma joined in lest she miss the fun. I love that with reckless abandon her and her friends were belting out songs on Karaoke. I love that they danced and laughed and celebrated her 16th birthday. We do know how to throw a party...but it sure helps when the enthusiasm spills to the skeptics and make it an epic event.

Saturday, September 11, 2010

I Feel a Little Lame

We are full into fall today. The rain hasn't stopped and we are running for cover lest we rust. The first week was going great. She was overwhelmed with schedule changes as well as the number of people that were around her. On Friday, as I was listening far too loudly to the radio, I missed a call. Then I missed another. When I finally checked my phone and saw the school had called, not once, but twice, my heart fell. Then my Samee called and said Mr. Nill had called. Mr. Nill is the Principal of discipline at the school. I have had to talk to him more than once for other kids. I was confused still. Finally, I catch up to him, somewhat thinking that maybe my sweet Mik has been naughty. I highly doubt that, for even if she tried no one would believe she actually was. That is just the kind of kid she is. That is why she was apologizing when she would finish a seizure, as though she had not prevented it from happening. Of course, I realize there has probably been an "incident" at school. He confirmed this, and that things were under control. I then have the teacher calling me. He explained that her friend escorted her from the class after she exhibited unusual behavior. He had others follow and was quick to get his first aid kit.

I immediately feel guilty that I have not filled the school in on all that has been happening. Some have known through private conversations, but most had just assumed that she went elsewhere last year. I try to synopsize everything and ask the teacher to share it with the staff. They know what to do, and when to call me. They know that she will want to return to normal as soon as possible, but that she will need to rest. They know that she and others may find this difficult. They are okay with that. So, now I have to be too. I have to know that it might not always be ideal. She may make people uncomfortable, and she may be herself. She may be whispered about. She may be vulnerable...but most of all, I count her as brave and courageous. She will not be defined by any condition, she will not be defined by her seizures as much as she does not want to be defined as being the baby of the family, or by any label that will constrict her growth. And so, I have to be comfortable with the unknown once again ... and keep up the journey.

Tuesday, September 7, 2010

I couldn't embarrass her and get teary-eyed. It felt like her first day of grade one. "I'll wait alone, you go for a run" she says. "Okay!" I say a little too enthusiastically. I wasn't anxious or enthusiastic. It was just different. "I have my Ativan," she reassures me. So much has to be unsaid. I keep a check on my thoughts and emotions.

I leave her with her cute new Vans and the beginnings of her dreads. Her purple woven purse. teal sweater and orange tye-dye scarf around her neck, look surprisingly in sync with who she is. She didn't take her rat to school, though I am surprised as I have found Lucy has been all over the city and in a few restaurants undetected.

She is back to normalcy. Classes, chaos, drama, laughter, sitting in the halls. Although she groaned last night at getting up early, I can tell that she wouldn't change this for the world.

Friday, September 3, 2010

I know I should never laugh at this. It is wrong for a Mom. But I am. My sweet little baby, who seemed all cocky to borrow my car for a trip called me from a city that was not related to where she wanted to be. "I'm pissed" she says, as I suppress a snicker. "You need to go back a bit and then" not telling them directly they are hours out of the way. So how did I miss telling her to watch for 97C Highway...for Kelowna? The same way I missed telling her to floss every day or her teeth would fall out. The same way I told her many times that her marks would matter at some point in her life - when she finally decided on post-secondary education. (sigh) I wish I were there to steer her always....I am not.....I provided the vehicle...that is all I could do. The rest is up to her now.

Friday, August 27, 2010

Patience

Some days I like that I am a patient person....but I have been on hold for minutes now and the recording is telling me "You are a real trooper." Somehow this makes me more edgy. A trooper because I am listening to Lady GaGa is true. I have no idea who would choose that as the music of choice. It seems quite a slim percentage of the population would purposely listen to the Lady. Now the recording is telling me "Good things come to those that wait." I am not sure they realize I am trying to troubleshoot why I cannot pay my bill online...and that isn't really a "good" thing from my vantage point. The Lady has ended and I am now listening to techno-pop...with what sounds like a dog barking in unison with the entourage of singers. Where did they get this music? Who would it appeal to? And yet...here I am, listening to incomprehensible lyrics, scratching and bleeping so that I can make sure they get their money.

Finally, a live voice greets me to tell me there is a technical issue on the website and that I will need to check back later this evening. He doesn't even seem to want my money. They are a patient company obviously. Perhaps the music has numbed them into a pseudo reality of strobe lights, always leaving them a bit of light short of actuality.

Sunday, August 22, 2010

I am not an egomaniac, although it might appear that way. I read my own blog. I think it is to edit or perhaps to make sure I am telling the truth. I am crying now at reading through my past year. Knowing so much has happened and grateful for every day. Through everything a realization of all that is important and noble is clear. It is also a reminder of how fragile each moment in time can be. From leaning on my dad to not knowing if he would be here today....life is precious and dear. I read my blog to remind me that we have walked some difficult trails. I read my blog to remind me that all is still well although there are tears.

Wednesday, August 18, 2010

For any that follow us regularly, you know the ups and downs of Mikee's medical issues. We are currently trying to figure out the down. Is it in anticipation of school? Is it stress/hormones/insomnia? I am almost confident that this is just another blip. Neurology will sort us out yet again...but will this mean a change in meds? Weaning on..weaning off....blood tests, levels, scans and EEG's. We were sure that was over now. We were moving forward..walking through that door to healing. Healed.

I refuse to let discouragement cloud us. Instead I expect that she will need further scrutiny. Fall is almost here and a new season. I am so ready to move to something new, but wonder if this is wise. To will a new beginning when we have not finished the chapter.

Tonight has been filled with drool and tears, heartache and fear. Neurology think it may be a reaction to Ativan, even though she has had it before. I waffle between bravery an despair.

She is waffling between feeling high and tears, nausea and confusion.

It is quiet now. I have written this over several hours. My heart pours into these words that I need to voice. I need to be heard amidst it all lest I numb myself in anxiety and torment.

Thursday, August 12, 2010

Thanks Mik

In the dead of night we could hear her. Sleep clouding my mind, I could not make out what the sound was until adrenalin jolted me to reality. It seems those nanoseconds of realization cause my heart to beat in my ears and drown out the chaos in her room. I think she is telling me she is hot...I try to take off the blankets, but she grabs them back and rocks and cries. I feel helpless again...like I am looking for something to do that will change the situation. She is finished now, exhausted and hoarse. I return to bed only to be confronted by sleeplessness and thoughts. I am resigned that it means nothing. I am resigned that not much has changed, and yet deep within I know that fear lingers within my heart. I wish she could have an MRI tomorrow to rule out the possibility of more bleeding. I wish that there were no unknowns. I finally drift to sleep after 4:00 a.m. My sluggishness a reminder of her struggles. Today she is studying for her provincial exam. Hours and hours of notes and cue cards are being poured over. Covalent bonds and ecosystems reviewed. She moves on so easily. She just wants to do what is in front of her. Pressing on and living today...doing the task at hand. I have her to thank for so many reminders.

Monday, August 9, 2010

Contentment

Quite suddenly the weather changed to mist and grey snapping me back to the reality that I really don't want summer to end. I want more beach days. I want more gardening - even if last week I was longing for the routine of curling up. I don't really know what I want most of the time anyways. I can be like that. I don't want to be, though. I don't want to a health scare to appreciate health....or war to appreciate peace...or rain to appreciate sun. I want to be reminded to live in the now....love the rain and the sun. Perhaps a thread tied around my finger? Maybe a moment each morning to notice the now. Something....anything to jolt me enough to serenity and contentedness......

Thursday, August 5, 2010

Scars and Marks

Soon Mik will be returning to school. She is actually still finishing Grade 10 right now....but after Labour Day she will be back to the routine of life. I know she is looking forward to ordinary days after the chaos an uncertainty she has faced. I have decided to do something new too. I haven't quite figured out what that might be, but my soul has been craving for a new routine.

Mik also turns 16 in September. I lament that she will not be able to get her Learner's License to drive. She has tried to convince me that because of the heartbreak, she would be consoled by a tattoo. I laugh at her persistence with this. She wants something to mark this moment in time. We have not relented yet.....but I can feel my arm get rubbery every time she sets up the dialogue on all the reasons she feels it is appropriate. I'll never hear the end of it from her siblings. Trying always to be fair isn't easy when the game is changed - or the child. And so, as I masticate over this body altering decision, bearing in mind she has one heck of a scar that is worth a lifetime of memories...

Thursday, July 29, 2010

I keep waiting for the change in weather that signals nesting again. This is all wrong. I know it, yet I still do it. Looking beyond today to plan tomorrow....but today then will never exist for me. Just now I caught myself in the midst of dreaming of curling up by the fire - and I am sitting in the sun of my office whilst children are playing in my swimming pool. When will I remember to enjoy today? This is rhetorical. I am not sure that I want the answer.

September will feel so different for me. Mik will be back in school in September. I am not sure what that will mean for me. Will I work? Will I live a life of leisure? Anyone who really knows me will know this is not possible. I think I thrive on flexibility and chaos.

This is why, even when I am tired, I would welcome anyone to come over. This is why, even when I am hot and sticky...not the way I want to be....is when I can look forward to those nights of curling up with a great book by the fire. Inside I know that today is most important. Enjoy what I have now for all of life is fleeting....it sounds morose and somber...and probably mostly realistic.

Tuesday, July 13, 2010

Look Where you Want to Go

Look where you want to go is one of the first things the instructor taught us. Riding along River Rd. yet again last night I thought about this as we were hitting a few sharp curves. I was looking ahead, beyond the corner, to where I was going. The parallel to life did not escape me. If you focus on the wrong thing, you will crash. If you keep looking to where you want to be - you will arrive.

Saturday, July 10, 2010

I don't take things for granted anymore. I am grateful for the many good days we have had, but I am ever mindful that I am appreciative of health and peace. I had no warning the other day. No inkling whatsoever. It happened completely out of the blue. Then again today, in one of those nonchalant moments when nothing is happening and suddenly you are pulled back into the din and mire...the reminder that you are one moment away from instability. Without making too much out of this, and falling in to that grey space full of morose and anxiety, let me say how much I appreciate each moment, nanosecond, breath now, and leave it right there.

Wednesday, July 7, 2010

I think I am Punny

We went to the cabin with friends this past weekend. Mojitos, beer, tofu, steaks, reading, campfires, jembe (?) and laughter. I always expect laughter in a friendship. Laughing at ourselves, at each other, at puns, or quirks. In my naivete I have thought that most friendships were like this. It is only after I was reminded by someone that they "don't always get my humour" that it occurred to me that I might cross the line with some...or, worse, they might not think I am funny. To have my friend laugh so hard my kids heard her from the beach is so rewarding. To know that a little jibe or poking fun will be well received....even if the ego is a little bruised. I sometimes joke at their expense...or mine....I don't play favorites. To tease, as only a friend of twenty plus years can, is to solidify the intimacy we have shared. Both couples have raised four children, had our share of "family situations" talked through strategies of all sorts - saving money, quitting work, buying the couch we want. Our husbands have lost many ____keys, bankcards, pairs of glasses at the wrong time that we can now joke about. We have gone through our fashion changes, hair faux pas, legalistic moments, and soul searching. We have painted each others' houses, a surprise for her husband, and a surprise for me. They are enjoying grandparenting, and we get to share in that joy with them, indulging the stories....because they really do make us laugh and smile.

The thing I love most about my friends is that they have always let us be who we are. Ken in the goofiest of hats....(you can check his blog for those who don't believe me...motorcycho.blogspot.com) Me, in the nerdiest of moments having to espouse my knowledge just to straighten them out. It is amazing how many times they have had to rely on me to set the record straight - about marshmallow diets and sunscreen, historical facts, math or the rules of cribbage. I don't mean to be the know-it-all by any stretch. They just have trouble retaining useless information when I am around. If I don't know the answer, they also know that I will dig until I find it. Then, they laugh at me. Not with me. At me. This is their inside joke.....the three of them against me. And so, laughter, even at me, is the most beautiful sound on earth.

Monday, June 28, 2010

I was reading a blog today....actually re-reading, when I decided to send the author a note that I was waiting for an update. I was pleased when he responded and apologized for not tending to his followers. Something I notice more frequently is that I crave well written articles, novels, blogs, medical journals, emails......I could go on. This appetite for verbiage has not been sated by the tomes I lug around, nor the articles I look up or blogs I follow. Perhaps being an erudite has created an unquenchable monster, as opposed to AJ Jacobs "humble quest to be the smartest man in the world." He sounds more noble...more humble..less discontent. I feel more driven, more competitive with myself and the world around me. I have no desire to be smarter....but I really enjoy the challenge of growing and unearthing wisdom or knowledge. If you have any recommendations to feed this dragon, please let me know.....but I will not be reading Encyclopaedia Brittanica, ever.

Wednesday, June 23, 2010

This is not the only one....

You may, or may not know, I have others. I am a prodigious writer, and realize not all of you have need to read the ups and downs of all my life. One is sufficient for many of you. However, my contributions to motorcychoadventures.blogspot.com is indicativethat my life, in fact, has other facets than Mik's medical condition and the roller coaster of emotions that we have been riding since last year.

I point this out, today, as a result of such a great weekend of riding through the countryside of north west Washington and the Okanagan of BC. One could not drink in the beauty of the Cascades, vineyards, orchards, the transforming sky, quaint towns and winding tarmac, and remain anything but in awe of life itself. I well with emotion at the ever changing landscape that transcends what I expect. This is also part of my journey in the unknown.

Tuesday, June 15, 2010

I am in awe of the brain. The recognition and decoding that happens before the eye can blink astounds me. The fact that this grey matter can process and produce intelligible answers, imagery, sounds, and movement is prodigious and humbling. Mikaela's experience with neurosurgery and neurology has allowed us to peek into unknown worlds where neurons and angiomas, electrical activity and lesions are everyday vocabulary.

We are back at neurology today. She will try to convince the doctors to wean her off of Tegretol. Her argument is good. It has been rehearsed, several times, on me. She is learning to read the clues when she needs rest, or less stress. This alone convinces me that she has moved on to healing and been an integral part of it. The warmth and carefree days of summer are almost upon us. I know we will luxuriate in them.

Sunday, June 6, 2010

When I began this blog it was cathartic in helping me put down on paper the myriad of events and emotions that were teeming through me. I have usually had a journal, but often was too rushed or too tired to capture the moments that I wanted. I am not like that with photography. I have never owned a camera, and rarely think of earmarking a moment. When Ken and I go for a ride, or go anywhere lately, he likes to take a picture. We have pictures of Mikaela going in to surgery....one with a note - NOT THIS SIDE....One with Ken pretending he is the surgeon as he pulls out his Swiss Army knife.

He also chronicled her 10 inch scar, her alien electrodes and lots of embarrassing pictures for the future. I am glad he is the picture guy. I like being the word nerd. We are coming out of the turbulent times now. I no longer feel I am wearing a cloak of heaviness. The days are much easier, the emotions less intense. Yet, even as I named the blog, I realize that this is true. Our journey through life is mostly unknown. We have a lot less control than we think. We are vulnerable physically and emotionally to the people we come in contact with. We can be assailable and dissonant at the same time. We can know peace yet have no peace. My other blog is about my adventures on a motorcycle. They seem incongruent, and yet both are about traveling through each day - the things you see and feel, and the things that make you stop and write them down. Both are journeys in the unknown...

Thursday, June 3, 2010

The difficult thing about a setback is not to anticipate a downhill slide. My heart dropped, though outwardly I appeared calm. I had been weeding this morning, and something just seemed amiss. Mik was back in bed, which is not unusual for a teenager, but unusual for her. I tried to find an excuse to go by her room to listen. If she was fine I would feel like I was invading her privacy - but when she asked me for Atavan I knew she had heard me creep in. She changed her mind as soon as I found it, but at that moment I was back to only months ago the days of consoling and anxiety.

When she recovered she essentially told me, I had to keep moving forward. She reminds me, as if I could forget, that sickness can exacerbate her seizures. She is trying to mother me, although, I thought the mask I wore was calm and peaceful. I cannot shroud my heart from her. This has been a blow to her, though she thinks she has disguised it with the right words.

She wants me to go on as though it didn't happen, and so I will outwardly. But, I may have many reasons to come inside today. It's just the way it has to be.

The Snob

This weekend was one of those rare moments in time when every bit of stress and mire that clings to you, doesn't. I think it is the laughter with friends that changes everything. My abs are certainly in better shape...as is my endorphin level. I am not exactly sure of why the chemistry works with certain people....but it does. You fall into a flow of exchanges that border ridiculous until some old man in the Italian Market tells you to "shut up". Now we weren't that loud, nor that obnoxious - he forgot his meds, we are sure - but it did raise my awareness that we were having a great time in the midst the doldrums that most were slogging around in.

I couldn't even repeat what we were laughing about - mostly inane comments or monikers that ring true in that moment. I became the princess - and I know that is the first time I would own that label...though it is not because I flung my nose in the air to look down on peons. I had a chauffeur and a cook this weekend - the life of a princess. We also came to the realization that my friend is a capital S snob. But, let me clarify....she is a Snob when it comes to cooking and food. This lady knows her flours....I can't even remember how many she has....and she knows her nuts.....she buys in quantities that rival a grocery store. Mention quinoa and cupboard doors fling open to reveal red and white. She knows her stuff....especially chocolate.

There are few subjects I would hesitate to broach with Grace. We both know how to talk....but when it comes to chocolate, I am a neophyte in every sense of the word. Oh, I know how to eat it. I know what I like.....but when a 3 pound, dark chocolate (or was that 5?) Bernard Callebaut is put in the middle of the table, after olives, bread and balsamic vinegar - you know you are not at a regular Sunday luncheon. You have entered into dining with chocolate. Chocolate becomes a part of the meal and you wish you had not picked at that last crust of bread just before feast began.

I came home with chocolate too. Chocolate to cook with; to drink; to study the flavor and aroma. I felt that I was at a seminar this weekend. I would title it "Learning your Palette one Bite At a Time". It began with Indian food, topped with home-made Baclava by her daughter, that I still try to conjure up. Brownies were part of that mix too, but the Baclava took the prize for me. Apparently she drizzles it with warmed honey....which would explain why everyone stood around the pan salivating before it was cut. Breakfast was a glorious display of fruits - blackberries, strawberries, watermelon. This was Edmonton in May and yet I was transported to August. The day (food) just got better after watching Grace make a delicious bean concoction.....I was the princess after all....and I am vegetarian...so it worked. I loved watching her wield the knife and the tongue.

I don't have to give a play by play of all the meals, but suffice it to say I went home full. Full of ideas, recipes, chocolate, memories, laughter, peace and joy. I went home knowing the world hasn't come unhinged and that some people are exactly who they say they are. And I came home knowing my friend is a Snob.......and I am guessing her family is grateful she is.

Tuesday, May 25, 2010

Profile Update

For any of you that follow this blog...I changed my profile description recently. Yes, my daughter still has seizures....but they are infrequent. The update was prompted by one of the doctors last Tuesday. A simple question that resonated deep within me. She asked Mik if she was ready to walk through the door to healing now. Mikee enthusiastically said yes. "When would you like to see me again?" she asked. When Mik thought about it, she decided that she had a busy summer and that perhaps after school had started. "This is the answer I wanted." she told us. Healing is as much as knowing you are healed as it is feeling your are healed.

For Mik, she needs to move on. This will always be a part of her. We do not know if she will always have her seizures under control. We do not know if all the blood on her brain has dissolved yet. We still have questions - and yes - there are fears that remain unspoken. But, for the first time in several months, Mikee feels that she is in control of her life, instead of letting her medical situation control her.

We will continue our visits to Neurology and Neurosurgery for follow-up...but it will feel different now. We can change the appointment if it conflicts with a test, or a field-trip. I can take them off speed dial now.

And so, I need to move on too. I needed to change my profile, though it still tells a story. I have been thinking of changing other things too. I want a new job. I want new experiences. I want to continue to live each day with wonder and awe. I want who I am to be reflected in what I write....especially about myself. And, I want to walk through that door with Mikee and put it all behind us.
Yesterday, as I was watching a cooking show that was tantalizing me, I realized how much my tastes had changed, of late. The thought of bunches of cilantro would have caused me to make retching sounds at one time, and yet not now. The evolution of a life...the journey that takes us through uncharted waters daily.

I can't say that I decided to accept cilantro. I think it was an accidental discovery, camouflaged and unrecognizable except for the distinct flavor. On further inquiry I realized that, in fact, I loved this flavor. Perhaps I had too quickly discounted the hint of woody bitters. Since the clandestine encounter, I have enjoyed it more and more.

And now, this cooking show has reminded me, not to be too set in my ways lest I miss out on something I would really love. It has reminded me that I am not the same person that I was yesterday. The evolution of my life.

Wednesday, May 19, 2010

I am in awe of the brain. The recognition and decoding that happens before the eye can blink astounds me. The fact that this grey matter can process and produce intelligible answers, imagery, sounds, and movement is prodigious and humbling. Mikaela's experience with neurosurgery and neurology has allowed us to peek into unknown worlds where neurons and angiomas, electrical activity and lesions are everyday vocabulary.

We are back at neurology today. She will try to convince the doctors to wean her off of Tegretol. Her argument is good. It has been rehearsed, several times, on me. She is learning to read the clues when she needs rest, or less stress. This alone convinces me that she has moved on to healing and been an integral part of it. The warmth and carefree days of summer is almost upon us. I know we will luxuriate in them.

Friday, May 14, 2010

Foot in Mouth

I know I am not the only one that has had athlete's tongue...but when you see the effect of it, you relive the moment, over and over. I woke up in the night replaying the words and wondered if it was a faux pas - or a moment of truth. I called a spade a spade last night, but it was in front of other spades who make me acutely aware that I am a diamond. I cannot be part of their runs, nor any flush.

And so, I ruminate, masticate and attempt several emails to explain, only to wisely discard them yet again before I hit the send. There are some people, who no matter how clearly you can logically explain your reasoning, have their thoughts set in stone, proudly. I give too much consideration to try to climb over that wall to achieve harmony.

Instead, perhaps a good oral rinse.

Tuesday, May 11, 2010

The sun is absolutely glorious and we are enjoying every minute of it. For Mik it meant that she was able to go for a walk (with her cell phone) and for me it meant I was able to venture to the beach on my motorcycle. Both of us were caught up in the euphoria of the moment of freedom. Not that we are confined like a straight-jacket to each other and this house....but just that change in and of itself gives us space to think, reflect, and especially appreciate that summer is almost here.

The pool is not heated yet.....for some reason Mik cannot convince her dad it is time. For her it seems a punishment...as it does for him. Once the pool is heated it means the nightly ritual of circling the pool for leaves...vacuuming.....testing the water.....and of course jumping in with or without clothes as soon as all rites are performed, is not something you commit to quickly.

Ken is watching hockey....and groaning. A grown man is so affected by what other grown men accomplish. Their daytime rituals change....their nighttime rituals especially. Playoff beards are growing.....flags, towels and talisman are taken out. This, I think, is the reason that the pool cannot be heated. The couch and TV await him every second night. As I type this his team is down 3 nothing.....and so the chances that he watches hockey again on Thursday have quickly faded. Perhaps the pool will be heated after all.........

Thursday, May 6, 2010

Today we woke up early, got ready and took her to school for a field trip with the Grade 10 class. I had a lump in my throat at how abnormal it was. It was the first time since October that she has done this. It amazes me how quickly I adapted to having to have her within reach of me for all these months. A few have called me brave for letting her go. Her friends had all urged her to come...the same friends that have been through the worry with us. The same friends she had to text before she was put under for her surgery, just to say she would be okay. She was comforting them.

Her doctors all felt that it was time to transition back to normalcy. They want her to take on a little more stress at a time. I am transitioning too, though my normal will never quite feel the same.

When she gets home not much seems to have changed. Her life was interrupted these past 7 months, but she seemed back in the groove of things after hundreds of hugs and lots of compassion. It feels good that the sun is shining and the plants are taking root....we have entered a new season.

Tuesday, April 27, 2010

This is the first week I have put the magnifying glass down. No 15 year old can stand the intense inspection of their life 24 hours a day. And yes, I admit there are times in the night when I would open her door just to hear the whistle of her breath in and out.

I am obviously a type A personality, which my children believe means "anal". This can be true. It also means that I get things done, I can be intense about a lot of things...including how the toilet paper is put on the holder, which towel is mine etc.. This also means that I am willing to do the work I see needing done instead of asking someone else. How else do you think my gardens got replanted, my walk got torn up, and more than 200 bricks got moved? I am the one that wants it done, so I am the one that does it.

This also means that 6 months I have been overwrought with Mik's care. It is 6 months tomorrow since her craniotomy. Wow. We are all ready to move on now. Ready for the high you get when you appreciate every day. Like today. It is sunny and gorgeous. There are reminders that the carefree days of summer are almost here. Trepidation has been replaced by hope, as she has had only one seizure in 11 days. 11 days when I forget every hour to ask where she is at. 11 days where I can let her be in her room because she has not felt "off" or nausea or an aura. I went out the other night for an hour with Ken alone, to buy a new bike for me....I am out tonight with some girlfriends...and again tomorrow night.....This almost sounds like too much....but I know that I am doing well when I can leave and be at peace to leave. And you know Mik is feeling a little more at peace when the beams of light aren't burning a hole in her skin with the magnifying glass.

Sunday, April 25, 2010

Impetus for Change....

We've all experienced that one change can lead to more.....I am guessing this is because once you are open to new things you start seeing possibilities. This weekend my husband and dear friends surprised me with a change I wasn't expecting. They provided the labour to paint my living room and halls which, if you have been to my house, you know is an intimidating undertaking with almost 20 foot ceilings.

So green changed to grey within the day, and brought with it the need for more permutation. We moved the furniture that was already askew....we culled the DVD's and tapes....and then, because we moved the TV armoire to the basement, the revisions continued downstairs. We sorted books, games, movies, CD's.....We dusted, wiped, and got rid of much.

Change can be daunting, and liberating. I kept asking questions....is it just collecting dust or will I really need it again? Does it add to my life, or take up space. It is amazing how quickly you can sort things out with the right question. I don't really care if I keep a book I still haven't finished, but I still can't bear to part with some of my favorite stories that I read to the kids when they were little. Phantom Tollbooth, Enid Blyton's books and the stories from The Land of Bearly There, are among those that I still want to flip through from time to time for the sake of nostalgia.

These last six months have been all about modification. My work schedule, sleep schedule, really everything about what I do has revolved around whether Mik was doing okay. My garden has been through a metamorphous as we had to dig up beds to fix our pool....Now it is completely reconfigured and replanted. So, when Friday night came and Leith turned into Home Depot instead of the restaurant, another transformation began.

Friday, April 23, 2010

Things have changed again. I dare say them out loud. We have had 4 days seizure free...the longest since this has all begun.....in fact 2 days longer. I feel the kind of nervous faith you have when you put a cheque from someone in the bank but are not completely sure it is going to clear, You love that your account shows extra money but you are worried it is short lived.

The intense stress has been relieved. The garden has been my refuge in the sunshine. I can even see some of my new plants are taking root. It feels good to begin to see new growth. Of course - Mik being Mik has asked if we can discuss weaning of some of her meds. They have deemed that one is not helping - they think....and so she would like to start the process - which will take around 6 weeks for one drug. I am encouraged at her bravado, though will we find out that this balance of Tegretol and Keppra were actually the key? Will we ramp down only to ramp up and experience days of chaos?

Medicine is not finite...nor is the human body. What might work for now may change in a week, month, year, decade. Balancing health is an art. Learning the yin and yang of our body. Reading and heeding the signs that a headache, backache, dry skin give us are as much about paying attention to the garden. When you see a plant has dry leaves, or is not flourishing....the gardener waters, or fertilizes, and sometimes needs to transplant or cull the plants around.

For today, I will enjoy and try to celebrate without fear.....and probably will weed a bit in the garden too.

Wednesday, April 21, 2010

Meetings

I am getting ready for a meeting, reluctantly. I don't really want to be part of all that today. I look back and a year ago my life was planning and strategy meetings, chairing weekly luncheon meetings for a business association, marketing meetings, strata meetings, board meetings. In October everything changed. Abruptly. Now, six months later I am trying to ease back into meetings. Though everything is familiar it will look different to me. It will feel different to me. I will have to repeat the latest health update several times. I will have to remind some why I have been away. I will have to nod at the insincere and the sincere concern for the well being of our family.

My reticence will be eased by laughter with a few friends. They will not pander me with a pat on the shoulder. They will not look at me with pity. They will set a date for an evening of laughter and update. Laughter being the key....updates come only after a glass of wine and tales at our daily dealings with people. The last time we were all rolling around about the food server on 3R insisting that "it is only Beef Pot Pie...it is fine..." when I explained that my daughter is a vegetarian. I wanted to ask if he knew what I meant....I wanted to know what wasn't fine to his definition. I wondered if there was goat or pig on the food cart for carnivores.....but instead, I have laughed and shared this story many times. Updates are easier when you remember all the amazing stories.....some changed our lives...some made us laugh harder than ever.....and some are now woven into the fabric of our life and have become who we are.....

Tuesday, April 20, 2010

Grace

At the moment I reached the breaking point, I reached out to a friend. I did not need to fill her in on all the details of the turmoil within. She could hear it in my cracking voice and shaky laughter. Moments after venting some and just asking for clarity with her, we were both laughing and enjoying the moment. Some people might need a drink, or a prozac....my 15 year old pointed out that I just needed grace....and Grace. Thank you my dear friend balancing your cordless phone cooking chicken. Thank you for listening intently before you comment. Thank you for seeing the bigger picture - and pointing out the obvious. Wisdom is a rare commodity....and so is Grace.

Sunday, April 18, 2010

Disagreements

Disagreements are invasive. They invade your thoughts as they replay in your mind what you should have responded. The right words allude you at the time you most need them and then echo in your thoughts throughout the days and nights to come. I don't necessarily avoid disagreements with some people. They are the way we can sharpen each other and find out exactly what the other person thinks. It has changed my mind more than once.

But there are days when disagreements can suck the very life out of you. This is when not only do you realize you do not see eye to eye - but when you realize that the other person does not even care what you think or feel. Those are the disagreements I like to avoid. They are not productive and will never move us in a place of a closer relationship. Those kinds of differences only further polarize us from each other and then threaten to break any relationship we might have had......even if it is through blood.

Tuesday, April 13, 2010

Privacy

There will come a day when Mik will nix this blog.....I can almost picture it. I have exposed everything to everyone. The pain and the triumph are all out there for people to experience with us. I am also mindful of the fact that she is 15 with her life under a microscope. Privacy was left behind way back in October of 2009....but that does not mean that she will not request it.

For now, writing is cathartic for me. It is all I can do sometimes to express what I am trying to deal with....but again...mindful of the fact that the exposition of my inner thoughts have also rendered Mikee under intense scrutiny from all who read this.

I love and appreciate that you are walking this with me.... and I love that I don't have to continually explain what is happening beneath the perfunctory updates.

One Tough Chick

I have learned alot these past months. It is not all for naught. I have learned that when you think you have nothing left to give - and you are still breathing....then you have something left. I have learned that some people are scared to ask you anything...and some people have all the right words at the perfect time.

The other day a kitchey postcard arrived at the right moment, to remind Mik she is one tough chick.....That's all any of us need sometimes....to be reminded of who we are....and not about what is happening around us. The storm can be loud and scary and the monster in the closet seem very real, but when we are reminded of who we are and what we are made of we can face things with a different outlook.

Mik - taking the cue from the card - went out on Saturday - without us - on her own. Now you all know that she is 15 and so this should be a normal thing...but alas....this is a rare since surgery and seizures. But my little Tough Chick realizes that what is the worse thing that could happen? Would people really laugh? Would it really embarrass her? She has little control about when and if something occurs...but she also does not want to live in a bubble all the time. So, off she went in the company of several other teens - in a limo around the city - playing games, laughing, talking....normal things....a normal day.

Thanks for reminding her she is one tough chick Paula......

Saturday, April 10, 2010

Have you ever been in a situation where you are waiting for a call and trying to be patient? Others begin to suggest that you should initiate....but you are reticent to call as they suggested that they would be in touch shortly. This is where we are at. Waiting for Neurology to let us know everything....but in their time. In the meantime, it seems like eternity. We have questions. Ken seems to think it is getting worse.....I feel it is just getting harder. I refilled a few prescriptions yesterday then wondering if they would change shortly.

We went through this before. Mik was coming out of brain surgery. She had been in recovery and they asked us to wait in the parent's room as they transferred her to ICU. They assured us it would be around twenty minutes. We gathered our books and papers and waited.....and waited.....and waited. We didn't talk about it..but we both were wondering...was there a complication when she was transferred? Did something happen? The suspense was killing Ken and he finally went to ICU and dialed the number. They told us to come straight in...they had been looking for us. We both were dumbfounded. Our phones were with us and silent. The kids at the house were waiting to hear.....they had not called us. They had forgotten. They had left us in that place between fear and panic as the clerk was either getting more coffee or chatting to a nurse. They left us alone in our thoughts to imagine the worse.

We rushed to her side, both of us in tears. The nurse had wondered where we had been and when we told her she was mortified. Which is also how we knew that the clerk had not called us. Mik was in la-la land between fantasy and reality as she held our hands and confessed she had told the nurse all kinds of things....and that she couldn't remember anything. She thought she might have embarassed herself...or us....The nurse assured us that although her conversation was colourful, she thought we had a hilarious and wonderful daughter. She had learned all about the famiily, including Andrew and Luke.....the boyfriends' of her sisters. She had learned about her dad's band....how much she looked up to her brother and his musical talent....and all about her dogs and hedgehog.

Within a few minutes the stress of waiting for six hours was gone as we watched our peanut slur her words with thank yous and apologies as she would ask for ice chips or blankets. She tried so hard not to be a bother with a 10 inch incision in her skull - a piece of her skull cut and put back...a pounding headache, her right ear swollen shut and full of blood. She apologized that we had to yet again wipe her brow or scratch her back....because that is the essence of who she is. A kid who has been through so much, and yet still expects that she should find manners and consideration. So perhaps this is why I am hesitant to call Neurology yet again. Perhaps like Mik, I don't want to be a bother though this is a hard wait....and perhaps it will have to be Ken to call Neurology as they may have just overlooked us....

Wednesday, April 7, 2010

Waiting

We are still waiting to hear the results of the tests.....the next plan of action....this is the hard part. The waiting. The unknown - again. I am housebound most days but have not had the energy or the wherewithall to write. I am certain this is not depression or despair. I am certain it is the anxiety of waiting that has paralyzed me.

She is sitting now, joking with her brother. Their laughter is wonderful. It is normal. They are teasing each other - as only siblings can. He won't let her get away with playing the fragile card. She won't let him get away with thinking he rules the house.

And so we are still here ... waiting ...

Thursday, April 1, 2010

inconclusive

....(sigh).....sleep deprived.....light sensitive.....this has been a test of strength for us both. When a bright eyed nurse came in at five we both wanted to say something. It was on the tip of our tongue. Mik kept falling back to sleep.....I was responsible to keep her awake. A dad made coffee in preparation for a sleep deprived EEG. Bleary eyed we shared our stories amidst preparing food. Our stories are similar...the girls' seizures are similar too. The night before he had heard Mik's and ran back to their room thinking it was his daughter's cries that beckoned him. I had done the same with his daughter earlier.

We are outta here now though. Having just been disconnected....We also opened the blinds to daylight and turned off the lights. It feels odd though....the last few months I have been consumed with her seizures. Always listening....waiting....asking how she is....and although nothing has changed, perhaps the intensity of the scrutiny has changed for me today. She has walked around the hospital - without her "leash"....without her cell phone.....without the umbilical cord. It is liberating to her - and yet I remind myself nothing has changed since we came in....though we are both glad for this - and for how these past few days have changed us yet again......and the results are still not clear.

Wednesday, March 31, 2010

Relief @ Release

Mik is laying in bed beside me exhausted but relieved. She accomplished the "mission" required of her and we hope to be released from the hospital some time this morning. I expect getting the electrodes off her head will be the major task of the day. I survived! Five hours sleep a night, no natural daylight, fluorescent lights on 24 hours a day, a TV without a remote (sounds lazy but when it is across the room - you are the only one that can reach it - and you have to scroll through channels you will get it).

The thing that always amazes me about being here is all that is going on around that I am usually blissfully unaware of. The parents that are crying beside me because of a diagnosis. The little boy next door just screaming to go home. The worry on the faces...the exhaustion....the frustration of sharing a 4 x 4 kitchen with every other parent - no silverware or plates - and the inherent greediness of some to snag more than their share of rations. We are all mostly exhausted and have little to spare in terms of comfort or patience - and yet it happens. You see connection. You see empathy. You see comfort and help. Extra fruit is shared, hugs are given...lots of advice and shared experience.

Mik now has the electrodes off....there are welts and pus on her forehead looking like giants pimples. Her hair looks like she was in an electric socket - but she has the most incredible smile at going home. It is a day later than we expected....it is not definitive as we expected....but it is relieving......

PS This says Mar 31st so it was actually the day after.......but the results felt the same....

Saturday, March 27, 2010

It seemed so long ago that this date was set. March 29th seemed so far away. It is upon us Monday and donned with games, food, treats and books she will be admitted to Video EEG monitoring until they have a complete look at her brain. She will also lose all privacy for a few days. Not that she has had that much since last year. But this is recorded. Nose picking, scratching, eye rolling at people's jokes can be recalled at any moment.

Each time we are admitted our list of what to bring grows. Soft Kleenex, baby wipes, water bottles.....they all join the trunk that we will lug to 3R. Along with this is the raw emotion from lack of sleep - the trepidation at the invasiveness of what this might mean - and the hope that the EEG confirms what the doctors already believe so that we can move on with a plan.

But, a Lobectomy is a serious decision. A Lobectomy means they will take out part of her brain. A Lobectomy is irreversible. The weight of that decision is hard for us all. There are so many questions we dare not ask - but hang in the air. Could she change? Could this hurt her? I stop right now. I have to. I cannot think that far ahead. I have to survive this next week first. I have lots of distractions. I will be the purveyor of healthy food, the challenger of games, and there when she will have a seizure or needs a hug.

I know that I do not really know how much she has gone through. I cannot possibly walk in her shoes. She sat through all the discussions. The unspoken fears sat with us. We are just facing today right now and the list that needs to get packed. I will post the results - and maybe a few really embarassing pictures for your viewing pleasure. Of course as I say this I realize I am on video as well so I better watch where I scratch too!

Thursday, March 25, 2010

Today was another meeting with Neuroscience. This to determine how Mikaela's brain has recovered post-op, and also as a base-line should she require further surgery. The doctors confirmed what we already knew. We have been blessed with a wonderful, mature little girl. The last surgery, though invasive, has shown little affect to her brain. The noticeable area that seems to have been affected has been her spacial intelligence. At this she realized why trigonometry has suddenly sent her to tears. It was a huge sigh of relief for us all. For me, because she has needed me to explain math - and then re-explain again....for her....because it is just part of her healing.

The doctor showed me one of the tests she did and I was overwhelmed just looking at it....let alone having to copy and then remember it....Perhaps this is heredity? At any rate, on Monday morning Mik will be admitted for her Video EEG monitoring. she will be glued with wires.....apparently like a crazy glue (and if you know her curly hair you will certainly understand the trepidation)....and she will be wired up for a few days. If you are walking this with us...we will update you on where she is at. For now, we are walking into familiar territory. An EEG is not invasive. A video a little more so, but in her words " ah....you can watch my life in waves..." . For me I will be content with sourcing healthy, vegetarian food, playing crib and Rummikub, and sleeping in cat naps. Ken (aka Norman) is trying to get his band together to watch biker movies in her room. Won't that be a scream? Last time Ken, Jared and Billy came in mummy costumes after playing a Halloween gig at some local pub. The nurses loved it. So again - we will be the talk of 3R with people coming and going....in costume....or without....but usually with a lot of laughter behind the doors. So much that a few of the nurses (Christine) came in just to hang out and laugh after work was over.

Tuesday, March 16, 2010

Thanks to Metro Don

This morning at the door was a box addressed to “Little Miss Motorcycho” from someone we have never met. Someone who lives thousands of miles away and yet has compassion on what is happening in her life. It was packed with care….suckers on the top, chocolate nestled between a T-Shirt, stickers with a hoodie….all prized by my teenager. The note attached told her that her “Daddy-o” had let them know she was still having medical issues and when he asked what he could do, “Daddy-o” suggested winning the Daytona race. Inside the box was the plaque of the 3rd place winner of the race – “National Vintage Dirt Track Championship Series” @ Daytona Speedway….1952-1968 (0-250cc) class…”

This road we have been walking since October has been hard. It has been full of tears, laughter, joy, fear, exhaustion…and also some great people who take the time to walk alongside us from thousands of miles away. Metro Don – How can possibly express my gratitude to you except to say when you are in Vancouver you have a place to stay and some coveted home made chocolate chip cookies. Mik is back at Children’s Hospital at the end of March and I am certain she will be donning a Metro hoodie and biting the head off those chocolate gators!!. Visit www.metroracing.com

Monday, March 15, 2010

The Funk

I have settled into a funk now.....and not the kind with the word "groovy" or "hip". The kind of funk I am in is the one that feels like you are struggling to breathe amidst the chaos of loud music and stale cigarette smoke. Most days it goes by unnoticed, until something snaps me into my reality. Only then do I want to sigh audibly and try to find some fresh air.

I was explaining this to my friend today. Trying to put into words the feelings that engulf me. She got it right away. She understood that even when everything is going great and there are no seizures....there is still the threat hanging over.

Mik had lay on the floor just as we were leaving for the dentist. My heart sinks as this is the posture I am familiar with. I expect we will be late until she gets up and had just been resting. I want to tell her to rest a different way. I want to let her know that her every move is under my scrutiny, and yet do I really want that for her? Do I want her to stop and think through all she does? She gets that I think something is wrong. "Next time I will give you a thumbs up when I lay there", is her solution. "That would work" I say, though really I will ask anyways. I know I will. I will try not to, I will try to find some other way to gauge where she is at....but finding none I will ask the inevitable question once again.

And so,I am here amidst the din and funk with a magnifying glass on Mik.....

Thursday, March 4, 2010

Crossword Puzzles

I was trying to understand my attraction and obsession with crossword puzzles I have had lately. I snuggled back in bed with tea and pen in hand long before dawn this morning and after a few questions I expected that I would not be able to answer much. I mean really, what is a noted tart thief? Is that from history or nursery rhymes? I press on a few to see if I answer any of the hundred and twenty five questions. A few easy ones come and provide more clues. The tart thief starts with a K now and I surmise that it might be a knave. I fill that in and see if it will aid with the ones around it. The V of knave seems to work with the sea dog’s oath – shiver me timbers…Slowly things are added, written over, filled in until I realize that the puzzle is done. There are a few changes because the clue was misread and some of the answers are only recognizable by me. But it is done. That Is my attraction to crossword puzzles. They are hard, they are frustrating, they don’t always choose the words or spellings that I would. Crosswords can use archaic vocabulary or spellings. But somewhere in my brain, I probably have a file that will recall that a juvenile newt is called an eft or that an Inuit knife is a ulu.. The satisfaction of completing a task I thought impossible twenty minutes before is probably the same reason that I continue to renew my subscription to the paper though I only skim the news now.

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.