Wednesday, January 16, 2019

Thank you for the music... all good things come to an end...


Happy to be home!
For those of you who have been diligent and followed my journey and stories and long winded essays, you will know I have revived this blog several times over the past 9 years as life has offered new challenges or circumstances that I thought may be of interest to others. I want to thank those who have afforded me the opportunity of sharing pieces of my life that I hoped would be of interest or knowledge or experiences that I believed others may benefit from hearing or also be going through. Based on my past few blogs, and the readership, I think the time for this has once again come to an end, a time to take a break and leave you be....

The past year and a half has been a time that we could have lived without, but since it was a big part of our life journey, I am so grateful to so many for their support. Knowing that I could vent, or grieve or ask for help - verbally and written - has truly allowed me to get through so of the hardest parts.

We were in Saint John, NB at the Cancer Clinic again this week to see the oncologists and get Trip all checked out. It is a journey and it is never smooth - I always allow 4-5 hours to make the 3 hour drive since my road is crooked - literally AND figuratively - and SOMETHING always happens to delay us. This week was no different... All of the delays and stresses really wear on my handsome and he is never in great shape by the time we arrive to our final destination. 

As we FINALLY arrived and got settled into the packed waiting room at the cancer clinic and tried to find a place to sit and wait, a gentleman I had never seen spoke to me. He had watched me lead Trip in, find him a space to sit, (it was -30C out when we started our day and by the time we arrived it had "warmed up" to -8C) the waiting room has large windows and lots of sun and it was beating down in the crowded room. I found a spot, out of the sun, settled him in, grabbed our medicine bag, scarves, hats, gloves and heavy coats and I found a spot to sit. 

Waiting...at the hospital
The man next to me, older than me, younger than Trip - was sitting next to his wife - he turned to me and with warmth in his eyes he said "You take really good care of him don't you?" I was a bit surprised that he had noticed us, but I turned to him and said "Yes, I certainly try to, although some days are harder than others." He smiled and said, "Are you tired?" I responded, "Ya, I think I am..." and I sighed, then I said, "But, I guess if  I am tired, after about a year and a half of this, I can only imagine how tired he must be." He just smiled and he made me feel like I was doing a good job. This short but kind interaction was what I needed.

The past two hours had been hard, stressful and Trip was in pain and irritable. We hadn't spoken - not from anger but I knew he wasn't up to it. I didn't play music or make any extraneous noise, I tried to avoid bumps on the highway and attempted to make his journey as smooth as possible. BUT, yes, it is exhausting to constantly manage and try to predict each moment and watch for every response to  create some ease in his life. This man saw that and I am grateful to him because I was a bit anxious and wired at that moment, so thank you - mysterious stranger - you showed me some support when I really needed it.

Our appointment was good, the doctors updated their charts, did more blood tests, examined him and weighed him. I am happy to report he is up to 150 pounds! That is so exciting! We have follow up and continuing care booked to monitor him but that is it. He goes in for surgery to reverse his ostomy at the end of January and then just recovery. It has been hard on him and I think all the doctors agree that it has been rougher for him than most patients, but he will get better, eventually.

During our "adventure" we have met so many people that we are grateful for. Specifically a few that have stood out are the original surgeon and rising super star - Dr. Gregory Knapp in Woodstock, NB - he personally gave Trip the strength and confidence to believe in the hope for recovery. Dr. Robert Thompson, Saint John, NB - who has reached out several times by phone just to see how he was doing, and who always has a quirky little smile for us - I think he thinks "we're cute" - but he remembers us and he cares. Ms. Erin Boone, medical admin support extraordinaire for Dr. Knapp - she has truly been a light of sunshine and support and I am grateful to have become friends with her. There have been innumerable people who have guided us and offered kindness - I don't mean to leave anyone out, but... I am going to say it takes a special sort of person to work in this area of medicine! 

"Mani/Pedi" well foot care... 
We also met a lovely young woman in Saint John - from Senior Soles Mobile Foot Care, Danielle and she has come to the hotels where we have stayed to provide foot care to Trip as well as conversation. She is becoming an RN and she is not only going to save soles, but souls. We have very much enjoyed getting to know her.

Of course as we attempted to leave Tuesday morning from our hotel we once again had delays. The truck wouldn't start, CAA arrived, twice, and we were finally on our way. Neither day, Monday nor Tuesday were anything major but they were extra money and time and stress and that all wears on my guy. It is amazing how little things can throw you off. For the most part I try not to overstress about them, just let them roll off my back like a duck, but, the anxiety related to them is really tough as you wait wondering and that - anxiety is an emotion new to Trip I think... It was very nice to arrive home to a warm house that my good friend prepared for me, thank you Andrea!

"Patiently" waiting for CAA
So, back to me and stopping the blog... I have so much to say but I think that I have probably said enough, there is  a time to be quiet and this is probably it, so my journal will get to continue to listen to me and I shall spare the rest of you. What has got me through ? Our children - they have all been great listeners and each offered their own support in their own way ... AND ...  You, the kindness of others, my community ... and singing... Am I good? No, but does it help me relax, reduce stress and pull myself out of the darkness? Yes. So as the great band "ABBA" says - Thank you for the music... Thank you for your support.... 

So I say

Thank you for the music, the songs I'm singing
Thanks for all the joy they're bringing
Who can live without it, I ask in all honesty
What would life be?
Without a song or a dance what are we?
So I say thank you for the music
For giving it to me
feeling hopeful
My last blog speaks to how I am coping and my self care, but...
Remember to sing, even when it hurts, 
Remember to dance, even when you don't feel like it...
AND... you may find me randomly singing and dancing in hotel rooms,
Or, grocery store aisles or parking lots... just because...
and you will MOST certainly hear me singing, somewhere, if you are listening!

Peace and Love,
Daisy 

PS: If you want to know more, feel free to go back and read the past blogs listed on this site. 

Wednesday, January 2, 2019

Reflections, Regrets and Resolutions... Hello 2019!

Here is to a BETTER year!
It seems as one year ends and another begins, that we, as humans in the western hemisphere, take stock of the outgoing and assess what we would like to accomplish with the incoming year. Really it is only 365 days, it can start at anytime, but it often provides us with a reason to set goals and hope for the next 365 days, you have to start sometime right?
I took my love and I took it down
Climbed a mountain then I turned around
And I saw my reflection in the snow covered hills
Well the landslide brought me down - Stevie Nicks, Landslide 
As you may know, the past 365 days in our house, have been kind of tough. There have been some days with hope and excitement, but they have been few and far between. One year ago, I had to put aside my hopes and dreams that were pre-set in my mind and adjust them to the reality of learning how to cope for myself and be an aide to my ill husband. I am fortunate that I had the opportunity to do so. Has it been easy? Nope! Would I do it again? Yes!

Our wedding 7/7/7
9 years ago, we celebrated the New Year with dear friends and family in our rental house in Nanaimo, BC. A short time later we made the journey to New Brunswick and Nova Scotia to search for a new home for our little family. It was exciting and an adventure, but it was never easy. At that time we had been trying to buy a home in the Nanaimo area and although we were approved by the bank, etc, we just kept getting roadblocks in our way. We saw that as a sign we needed to adjust our expectations. We needed to find a place to live, raise my young girls and be able to get by comfortably with what we had as income. This year, we celebrated New Year's alone - but with hope...

The idea was I would "retire" at age 44 from the traditional work force and become a stay at home mom. I was happy to do this and to set up our country house, see them off on the bus in the morning, be there when my kids came home from school, and spend the days with my husband, animals, etc. I am grateful to have had that opportunity. Of course, life is fluid and things never quite go according to plan. I spent time working for others house cleaning, helping care for an elderly woman, becoming a part of the local farmers market, starting an arts festival, helping Len with his monthly periodical "The Messenger", creating websites, having a little shop in my house, serving in my community, starting a 4H club for the local kids, teaching local "chef" classes to children and trying to immerse myself in my new world, and of course parenting....

A year ago, I stopped pretty much everything. The kids were gone, some sooner than expected. I regret this. I miss my children. One has moved back to Vancouver Island and the other, is gone from home early, now living in Woodstock. I am grateful that we all have contact and good relationships. I regret many things and I see that I did not parent as well as I thought at times. I made mistakes. Every parent must feel that to some extent. I guess all we can do is admit them, try to learn from them and apologize when we can - while allowing our children to remain accountable for their own actions.
Well, I've been afraid of changin'
'Cause I built my life around you
But time makes you bolder
Children get older
I'm getting older too - Stevie Nicks - Landslide
I feel judged by those around me for some choices, experiences and consequences. That hurts me, deep in my soul and simply formulating those thoughts out loud make my chest feel heavy and my eyes tear up, I feel a choking in my throat and push the tears and grief back. Saying this is not meant to hurt anyone, it is simply me, how I feel, the emotions that burden me. When going to my small town and running into people, I imagine they are thinking, what did you do wrong? How come you gave up? Don't you care? That is the last thing in the world that is true, I care too much, I hurt too deeply, but I tell myself I am good at pushing it all down, deep inside. I believe in the long run, it will be ok. My children will be ok. I know they know I love them and as much as I have failed at, I did my best.
journal memory 

This past year, caring for my husband, helping him through his surgeries, cancer treatments, innumerable medical appointments, daily care, dispensing his medication and taking care of his every need, even before he realized he needed it. I do not regret being there and I am so grateful that I was able to be by his side. I honestly feel sad for so many people who go through this alone and I think they are so brave for making it and not giving up. I know there were days we both felt done. I now realize I let myself go, I didn't not take care of me and that my friends, is where we come to the infamous word - Resolutions!

Simple Abundance - journaling

I try not to set resolutions as they are so easily broken as they days of winter draw on and we get further into the new year. I do like to call them goals, and that is what I have set for myself. 14 years ago, when I was in some of the darkest days of my life, a dear friend gave me a book called "Simple Abundance" by Sarah Ban Breathnach  At the time I needed something to remind me that I had things to be grateful for and although I did not follow it as long as I should have, it definitely helped me appreciate being alive and the simple joys in my children's days. It has warmed my heart to re-read the thoughts I had at the time and also made me laugh. I chose to write down, by hand, not computer, in a journal, 5 items of gratitude each day. Some days it was knowing my children could laugh again, other days I was grateful for drugs, alcohol and medication - hey, whatever it took at that point to get me through! I also wrote several times about my gratitude for counseling, for all of us.
Every day, your own true path leads you to a happier, more fulfilling and contented way of life-the state of grace known as...  SIMPLE ABUNDANCE. Sarah Ban Breathnach
As I read through my journal, and prepared to start it again, I found a card from my oldest daughter who was 10 at the time. Her words touched me deeply, she always did have a space in her heart to worry about her mama, and to try to take care of me and in her young words  - you can see how she continued to try to make me happy. Such a burden I must have put on her! I am ever so grateful for her though and you can see I always loved daisy's as she drew one on my card!

Sweet card full of love
I tend to compartmentalize my life and put things into "boxes" and not think about what I don't need to. In doing that, I forgot the pure joy my little one gave me as she smiled, as she learned to walk again and as she pushed through her rehabilitation and the strength she had. She has always followed her own drummer and while I don't always understand her "band" she is very strong willed and she will get through life on her own terms. 

some days you take what you can get
"grateful for drugs, medication and alcohol"
I have begun working through the book again, it is a 365 day plan, next to it I have started my journal  and I can see my journey, even with the many years gap that I have taken. I have my yoga/meditation studio in my room and self-care is my resolution for 2019. However, that plays out - yoga, meditation, journaling, long baths, listening to peaceful music and songs of joy and inspiration, experimenting with new crafts and techniques and the universe willing - my trip across the country in the hippie hangout!

My peaceful place
Len and I (aka Trip 'n Daisy) have a few more hurdles to work through, but his strength is building. He has more good days than bad days now. His next surgery is at the end of January with about a week in hospital and then healing... I continue to be by his side, grateful for the love, support and donations that have allowed me to do this. Looking back on my journal 14 years ago, I see how my community of friends and family pulled me through then and reflecting on this past year, how you have all done it again. Yes, I need people and I am so grateful for them!

My hope for 2019 is to spend a year healing and caring for both of us, building our strength and continuing the courageous fight to get through this life! I am so excited to see all of our family and especially our grandchildren - being far from them is definitely a regret - we shall reunite with the "old" and meet the new... I am sure they will think we are weird... and we are... And of course... I shall pay it forward...

Reflections are good, Regrets are human and Resolutions are fluid...

Peace and love,
Daisy 
Embrace its gentle lessons, savor its sublime common sense, dare to live its passionate truth, and share its extraordinary and exhilarating gift with every woman you encounter: the authentic self is the Soul made visible. Simple Abundance
This year shall be filled with "Simple Abundance"