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 Trepidation has been replaced by hope, as she has had only one seizure in 11 days. 11 days when I forget every hour to ask where she is at. 11 days where I can let her be in her room because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.