Monthly Archives: August 2013

Going on a Vacation….Home!

Going on a Vacation....Home!

Twenty days in Vancouver – we are finally heading to home. This year we have spent more time in Vancouver then we have in Vanderhoof. All three of us are as excited about going home as we would be going on a vacation. We only have about a week at home and then back to Vancouver for more appointments, tests, and treatments.
We have become Vancouverites due to our unique circumstances. Living in this amazing little apartment has allowed us the freedom to feel like we live in this city. The owner of this building decided to move from full time tenants to servicing those of us that are dealing with medical issues and live far away. It is not free but reasonable compared to what a hotel or bed and breakfast would cost. This time there was enough room for each of us to have some space and it was not as easy to get on each other’s nerves! There are 14 units in this building and they are always full with adults and children needing long time care here. It is the only building of it’s kind here to service families like ours. There are families who have had kidney transplants, pre-mature babies, cancer treatment, operations etc. Having a space for family to gather that is home like is such an important factor in becoming well. I am so grateful that we had this space this time. With both girls dealing with their illnesses having a more home like environment helped all of us deal with things better.
I always thought that I would not like living in a city but surprisingly I like it. I enjoy the various neighbourhoods that Vancouver has with the different feel of each. There is hustle and bustle with people and traffic but it does quiet down too. Vancouver has so much green space – trees, parks, flowers, ocean, river, beaches….it is easy to be in nature if wanted. I love the level of activity — people walking and bicycling everywhere. It is an inspiring sight to see.

Chloe leaves feeling a whole lot better than when she arrived. She has received care that has supported all aspects of her wellness – physical, emotional, and social. She has worked diligently with various doctors, nurse clinicians, and psychologist to learn how to cope with her pain syndrome. Although she is still experiencing pain – she is learning how to listen to her body and cope. She is learning to deal with her anxiety and worries in a more healthy manner. She is also learning to manage and figure out how to deal with the stressful parts of her life by setting boundaries, goals, and making sure she does what she needs to be healthy. For example, we had our dear friend Pam come and visit on Sunday. Chloe was looking forward to getting out (we ended up going to the Vancouver Zoo). She was mindful of what she was doing up to 36 hours before the outing. She rested, did not go anywhere and made sure her mind, body, and spirit were ready for an adventure. As a result, she enjoyed the zoo – immensely. She could walk the zoo and even though we had a wheel chair (that she was going to share with Ryleigh) she chose to rest when needed and not use the chair. I was impressed by her knowledge of most of the animals at the zoo — she continually surprises me as she seems so quiet and unassuming but in reality taking in everything and processing it. Animals are what she is passionate about — I will not be surprised if her life path has to do with animals.
Chloe is not 100% but she is definitely better then when she came here. She has follow up appointments for when we come down the last week of August.

Ryleigh’s trip this time has not been as positive. We were encouraged in March that her surgery would make her feel so much better and the worse was over. Unfortunately, that is not the case. We can only cross our fingers that the Remicade will work on her upper digestive system and she will get better. Right now she is so fatigued and nauseous – it is hard for her to do much more then be in bed. She came with us to the zoo and showed joy and being carefree for about 20 minutes…then she tuckered out and spent the rest of the time in a wheel chair. Thank goodness for squirrel monkeys as they made her giggle and laugh.
Ryleigh is also still having troubles with her incision — it does not seem to want to heal properly. As well she has some sort of infection around her stoma sight and so she is itchy and uncomfortable. There may be a delay in her Remicade treatment because of this infection — we will find out today when we go in and the doctor takes a look at her. I sure hope things are not postponed. I truly want her to be well enough to have fun at school this year and not be homebound.

I continue to make it through each day. This trip helped me make the transition from dealing with the medical issues as a crisis to realizing that this is the way it is going to be. It is not like when the girls had chicken pox, streppe throat, or the flu and after some time and care they would be better. The reality is that they are facing these issues for the rest of their lives. My job is not trying to fix but to help guide them through managing the pain, discomfort, fatigue so that they can live a fulfilling and joyous life. It has changed my perspective on thinking about the future — it is not about what they are doing after high school or what do they need to live a prosperous life. It is about what they are doing today that they enjoy, love, and want to learn about. Are they living their best life today – are they being kind, mindful, caring, curious, thoughtful, inspiring, respectful, fun-spirited….if so then I have done my job. I think we can get caught up in what we think is normal for our kids. My girls are not the types to go out with groups of friends on the weekends or join a bunch of activities like it would seem most teens do. Instead they are cultivating their friendships with the friends they have that result in deeper, more meaningful relationships. In the midst of all of this turmoil both Chloe and Ryleigh are happy and joyful – they truly embrace their lives and enjoy.
I no longer look at tangible accomplishments as a notch on my parenting success belt – something I would often subconsciously and consciously do. Do not get me wrong – I am a proud parent when they do well on an exam, ride amazingly, sing in a play, present a speech, etc. But I no longer look to these things as a barometer of how I am as a parent. I am looking through the lens of process not the end result. I see how they are dealing with challenges that far surpass getting on a stage or completing a school project.

I have also relearned that I need to take time for myself — even if it is small bits here and there.  I need to take time to reflect, move, play, and laugh — as all encompassing caring for sick family members can be it cannot overtake my life.  I have had many friends and family share this insight with me but until I could get out of survival mode and start back into living mode I could not care for myself in a healthy and mindful way.  I truly believe I am on the path to living mode again — I have health issues I need to take care of and have already started my journey.  My family needs me to be healthy and thriving – the best thing I can do is take the time to do this.  I am looking forward to daily walks with my lovely, playful dog (and maybe Dan too!), starting yoga again, mindful eating (not dieting but being present and thoughtful in my food choices and behaviour), adult time with the people that fill my bucket, and teaching (lets me be creative, a problem solver – non medical issues, and interactions with amazing students and colleagues). I am not naïve enough to think that this will happen over night — but I am going to live it each day — because someone very wise and whom I love dearly told me recently: Tomorrow never comes – it will always be today!

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A Blue Day….

The sky was blue, the sun was shining, and we went to visit the Pacific Ocean – yet something else that is blue.  It suited my mood today — just feeling a bit on the sad side of things.  Not depressed – just glum.  As much as I try to view each day with a positive energy – these kind of days sneak up on me and I have learned to flow with them.  I make the effort as a mother and educator that all feelings are valid and real – understanding them and processing them is how we move forward. 

Ryleigh is struggling again  – she is trying not to be that grumpy but she is feeling really poorly.  This results in poor sleeps and lack of energy to do really anything but rest in bed.  She can manage outings as long as we are driving and walking maybe a half a block.  Chloe continues to be in pain but is using various techniques to try and experience more normal activities.  She is still learning about pacing and making sure that she does not do too much to set her back. 

We decided to drive down to White Rock and Crescent Beach.  I had the hopes of getting out and sitting by the ocean – enjoying the sea air and sounds of the beach.  But, it was  a long weekend and parking was almost non-existent, even with a disabled parking decal we had trouble finding spots.  Both the girls have difficulty walking any distances so we spent most of the time in the car admiring the view, looking at some beautiful houses, and listening to the radio.  Ryleigh really enjoyed driving around, as did Chloe.  I think it was a chance to get outside of our little apartment  without having to expend too much energy. 

Days like today are difficult for me – I think about what other teens are doing – hanging out with friends, going swimming, sleepovers, summer jobs, bike riding, etc.  I struggle with the fact that I am delighted that my girls can tolerate being up and about (riding in a car) for a couple hours like it is an amazing feat.  I am hard on myself as there were times that Chloe and Ryleigh were doing normal kid things and I did not appreciate it as much as I should have.  I spent a lot of time worrying if they were behaving, doing there chores, following expectations  etc…instead of enjoying the laughter, fun, and enthusiasm they had for simple daily activities. 

A number of people have made comments about my strength and endurance through all of these setbacks and challenges.  I am not sure how else someone would be — falling apart and not being there 100% for Chloe and Ryleigh is not even a possibility.  There really is no choice in the matter.  One does what one has to do. 

Everyone faces adversity and challenges in their life.  A parent facing the first cold that their newborn gets is as stressful as a child dealing with a chronic illness.  It is hard to se your child sick and suffering whatever the circumstance. 

The nice thing about blue days is they become blue nights and then the next day is a start over.  I am a firm believer in start overs.  I am confident tomorrow will be a brighter day for me and because I let myself feel the bluish tinge of sadness I can move forward. 

 

Change

I have come to realize that change in my life is not a hurry up and happen but a process that I have to embrace and live the best way that I can. Ryleigh was discharged from the hospital 3 days after her surgery. We were all very excited at the progress she made.  Her surgery was not as challenging as they had originally thought so the recovery was much easier on her than the last two.  Also, the pain management team really worked hard at having her pain free the first couple of days which contributed to less anxiety and resulting discomfort. 

On Thursday, Ryleigh had an appointment with the GI team to discuss why she was feeling so yucky.  I believed that she had some active disease in her stomach and mouth that could be corrected by some oral meds and then she would have everything managed ready to go back to school in a month’s time.  However, things never really go as I imagine – gee do you think? The GI team wanted to discuss the MRI Ryleigh had of her small intestine.  I was quite surprised by what they told me.  Her small intestine is now diseased and inflamed – quite severely.  In the last 3 years Ryleigh’s disease has never been in her small intestine – that has always remained clear.  Until now, this disease is not letting her have a break.  So, it was decided that she will be taking methotrexate once a week and beginning Remicade treatments once again.  Evidently, Remicade does not work as well on diseased large colons but has more positive effects on the small bowel.  I believe that these treatments plus her oral meds kept the disease managed previous to her colon being removed.  So, I believe that she will get better now that her colon is removed and starting the Remicade treatments.  These treatments are done through an IV and need to be done in Vancouver.  She starts on August 13, then August 27, September 24 and then every 6 weeks after that. 

I have realized that the process of our lives is not the urgent doing things quickly kind of life but one of time, effort, and energy to live a full and happy life.  We are learning how to live from suitcases, cook meals in ill equipped kitchens, sleeping on pull out couches and air beds, etc…this is now our life not a means to an end. 

I think the last few years my family has been living with the hope that once Ryleigh got better we could resume our regular life.  The reality hit me this week that we all have chronic illnesses and that life may not get better but it can be better if we accept the way things are and enjoy, embrace, challenge ourselves to live as fully as possible.  My question to Chloe and Ryleigh this week was:  If this is as good as it gets…what are  you going to do to live YOUR life the way you want to?  I have asked myself the same thing.  I think it means to not put the things on hold that you enjoy and care about but to integrate them into the life we now have.  Being present and active in our lives by BEING not DOING. 

So, with the news that our Ryleigh is facing another round of treatment to improve her physical self we are all looking at ways to improve ourselves through art, humour, activity, and connecting with those we love and respect.  We will embrace the frequent trips to Vancouver like we are visiting our second home — that it is not a burden but a part of what our lives are. 

In a previous post- a comment was made about being a hospital mom.  I read on facebook the distances families travel for the child’s hockey tournaments, ski trips, riding camps, camping trips,music fieldtrips etc.  We are doing the same kind of travel.  Instead of a hockey mom — I am a hospital mom.  There are the same concern for finances, travel time, energy, and stress but we still do it anyways.  The only difference is this is not a choice for me but I see it as the best thing I can do to help my lovely girls move on with their lives so that eventually they can do the kinds of things that make them happy. 

Change is really a process.  A process that consistently keeps me thinking and honouring.